The Wiersma Family Blog

Max is on the Move!

2011-09-08T12:16:00.000-04:00

The boys have been making incredible strides lately! We are so thrilled with all the progress over the past few months!

Max is officially off the vent!!!!! Woooooo Hooooooo!!! He is doing very well off of it. He recently had a trach infection but he handled it so well he didn't need to go back on the vent. A VERY good sign that his lungs are getting stronger!
He also decided yesterday the he was going to walk!!!! He has had the ability for a while he just lacked the confidence. I can't believe how fast he is. Now I have 2 walker, 2 climbers, and 2 talkers.

Wes is doing fantastic. He is starting to say words, and signs all the time! He is still super spunky and keeps me on my toes. I LOVE it!

Feeding therapy is going well. It is going to be a slow process but they are both making great progress! Wes opened his mouth yesterday and took a bite of food. He didn't gag or wretch or anything! AMAZING!!!!!! Max is a little slower. His cautious personality really takes over. But, he is allowing me to do mouth exercises andand little kisses.

We are on a roll here at the Wiersma household. Go guys Go!

Better and better!

2011-08-03T22:19:00.000-04:00

So it has been a while. Sorry.

Max and Wes are doing amazing! They have learned to say a couple words. Baby, ball, Dada, Mama, Papa (my Dad), and a few others it is so cool to see them soak up everything. They are little sponges these days!

We are starting feeding therapy next week. I am very excited to start this process. It will be long and tedious but it is a huge step in loosing the feeding tubes.

Wes is into everything. My Dad has to constantly remind me that it is a blessing. I know it is, but when your in the thick of it that is not your first thought. :) He loves learning new things, reading, and singing...and being busy busy busy!

Max is off the vent!!!! As of last week Friday Max has been vent free. He gets humidity to his trach but it isn't any type of lung support. Max is almost walking. He can walk he just doesn't have confidence yet. He will take a couple steps and then realize he is on his own and then sits down. It is quite cute. He tries hard to keep up with Wes.

Every stage gets better and better. They are just soooo much fun. I don't think I have ever laughed so much before. They are such good little men.

Please pray that the boys continue on this fantastic path. We are so amazed at how well they are doing. Also, Max needs to continue to gain weight or he'll have to go back on the vent at night. So please pery he continues to do so well and grows and grows!!!
Thank you all for all your prayers and support. We appreciate it more than you could possible know.

Pics coming soon.

2011-04-17T23:00:00.000-04:00

I apologize for not posting the pics of the boys second birthday. I will hopefully get them up soon. We had a great day. The boys loved plating with Papa. Grandma, and Grandpa. They also had fun playinf with spaghetti as you will see from the pics when they get posted.

Big things are coming up for Max. We will find out at the end of the month if we can get rid of his vent. Please pray that his lungs are developed and ready to be on their own.
He is becoming such a...toddler. It is amazing to see them learn new things. To see their faces when they know they did something you asked, priceless.

Wes is having a sleep study to hopefully get the go ahead to be done with oxygen. Don't tell their docs but he hasn't slept with oxygen in almost a year.
He is FULL of it. To smart for his own good. He loves to push my buttons, like most toddlers like to do to their mothers.

I also want to share with everyone that Max and Wes are finally going to get baptized. June 19, Fathers Day, come to Haven CRC in Zeeland. We would love to celebrate the boys with all who want to join us.

Max ans Wes are almost 2!!!

2011-03-24T10:56:00.000-04:00

Sunday will be our Miracle Men's second birthday!!! I cannot believe it!

We have had a great couple of months:
Wes is walking all over the place and starting to make more and more noises. He is such a...go getter. This kid is scary smart. He has found a way to get under his brothers crib, take of the heating vent, and throw toys down the ducts.

Max has had some fantastic new this week. His vent settings are getting lowered even more. If he does well with the changes we could be FINISHED with the vent at the end of April!!! We also get to start using a speaking valve. It will allow him to make noise and "talk" through his trach! I still can't believe all these amazing changes. Max is also creeping along furniture and loves his freedom to crawl all over the house.

I will post some pics of their birthday.

2011-02-09T00:43:00.000-05:00

EXCITING THINGS!!!

MAX: Max had a sleep study done last night. It was to see if he could sleep without the support of his ventilator. We won't get results for a month or so but, he did great (in my opinion)! He slept the whole night with out the vent and even had his oxygen level turned down. I am a happy proud Mama!!!
Max continues to amaze us. He is crawling all over and starting to verbalize more and more as well as signing things. God has really brought us through some difficult times, but to look at my son today makes it all worth it.

WES: We have a walker!!!!!!! Wes took his first steps Sunday morning!!! I don't think he realized what he did but Mark and I were beside ourselves with joy! Since then he only walks to Mark, which to be honest I am jealous of, but I'll get over it.
He has also started to vocalize. No words yet, but the fact that he is making any noise at all is FANTASTIC. He doesn't quite have as many signs down as Max. I can't keep him still long enough to learn them.

Every stage is better and better. I keep saying this is my favorite stage but it is true. It just keeps getting more fun....for all of us!
I looked through some of the boys baby books and can't believe how far they have come in a year. God has truly blessed our little family. He is showing us the way through this storm. We can finally see the sunshine through the clouds...and it is a beautiful thing!

Go Boys go!!! We are on the move!!!

2011-01-26T16:45:00.000-05:00

We just got back from a fantastic pulmonary appointment! Max can be off his vent while he is awake!!! He needs to be on a small amount of oxygen. But, he can crawl around with only one small tube instead of 3!!! The doctor also got rid of one medication and lowered the dose of another. We are so thrilled! Things are moving in the right direction.

Wes is also doing great! He is standing up without help. No steps yet but he has his balance! He is starting to make more vocalizations. He is full of energy and spunk. He has learned to crawl through the end tables to escape into the kitchen. He is very...spirited. :)

We are loving this new phase! We are enjoying every minute of all these new developments.

Thank you God for all of these amazing blessings! Thank you for our little Miracle Men and their amazing growth and development! Thank you for everyday we have to watch them change and learn new things!

MAX'S ONE YEAR

2011-01-04T09:55:00.000-05:00

Today (January 4) Max has been home for ONE YEAR!!! The time has flown by! We have loved every second of our little family living under one roof! Max has done so well being at home. We have only had one weekend in hospital, and another visit but no admission.
Max is still struggling with trach infections, but other than that he is a HAPPY little boy! He is doing great on his vent weans when we are able to do them. He is on the verge of crawling and loves to "talk."He has the sweetest little voice ever. Thank you for all your prayers and support! God has given us 2 AMAZING little men! I cannot wait to see what He has in store for them.

Wes is also doing great! He is trying to vocalize more and more, it sounds like grunts and screams but it is a step in the right direction. He is the fastest crawler you have ever seen, man that kid can go! He loves his freedom to walk along the stuff and between furniture. He is getting a little to smart for my liking though. He has figured out how to move his barriers/gates and he steals toys from his brother and puts them just out of reach so Max can't get to them.

We are so thrilled with how our little men are doing! God has blessed us so much over the last year. 2011 is going to be a fun year.

Tis the Season!

2010-12-02T00:20:00.001-05:00

Wesley giving kisses.

Showing off his standing abilities.

Check out those brown eyes. Watch out girls!

Max wasn't feeling so great so I was thrilled we got some great shots of him.

Our little Miracle Men. 20 Months old.

Max cuddling with Daddy.

Smiley even when sick. What a guy.

Not completely sure what Wes is doing, but I like it anyways.

Thank you Lindsey Iverson for taking these adorable pictures.

Happy Thanksgiving

2010-11-25T11:54:00.000-05:00

HAPPY THANKSGIVING!!! This year we are extra thankful. Both our boys are home, fairly healthy, and making big strides in their development.
We have amazing family and friends who love us. A church that supports us in immeasurable ways. And a God that holds us tightly and leads us through our ups and downs.
We have come so far since last year! God has truly blessed our little family.
Thank you for you thoughts and prayers. We are so touched.... I don't have words to express... THANK YOU.

God Bless you on this day. Have a fantastic Thanksgiving.

Love,
Mark, Kate, Max and Wes

Max is On a Roll!!!

2010-11-07T00:18:00.000-04:00

Max's ween went great Friday. We can do half hour weens twice a day at home! Pulmonology would like us to take the first week easy. Max has been having some "off" days lately so they want to ease into the process. If he does well this week we can do 1 hour weens the next week. We are ECSTATIC!!!!! The process has begun!!!
It is so fun when we turn the vent off. Both boys look around to see how it got so quiet in the house. Max gets so proud of himself. He sits up super straight and giggles at himself. It is soooo cute. Wes crawls over to Max and stares at him. I think he is wondering where all of Max's tubes are.
It is such an amazing feeling. I am so proud of Max. He is absolutely amazing. We didn't expect to start this process already and he is handling it like a pro. We feel so....I can't find the right word. It is just wonderful!

Max's BIg Day

2010-11-04T00:19:00.000-04:00

Friday (Nov. 5)Max is going to have an the opportunity to have a vent ween. They (Pulmonology) will turn his vent off for 1 hour and see how he does. If he handles it we will get to try it at home. And then, as the days go by we can slowly increase his time off the vent until he is off all day long (he will remain on the vent at night for a while yet). This is a HUGE step! We are thrilled that we are even talking about it. Please pray that it goes well. And, that he can continue to take steps towards being less dependent on his ventilator.
Thanks for your thought and prayers! We appreciate all of them. God has blessed us with these amazing boys. I am so excited to see what God has in store for them.

NICU Buddies

2010-10-21T13:07:00.000-04:00

Some of our NICU buddies came over for a photo shoot yesterday. We had a blast!!!
I made the tutu's and tie onesies for the kids. I have to say they turned out pretty cute.

The line up of the kiddos. Sooooooo adorable!

Max, so handsome sitting up like a big boy in the chair! Kisses all around!!!

Wesley pondering the chaos of the day. This was towards the end of the photo shoot, he was exhausted.

Times they are a CHANGIN!!!

2010-10-14T21:51:00.000-04:00

Wes and Max in the tub together! I know that is "normal" for most families, but in our house it was HUGE! The boys loved it! Splashing and giggling the whole time.

This pic of both of them in the tub is a true depiction of their personalities. Wes is mischevious and .....well naughty. Max is cautious and careful. SO CUTE!

I love this picture. Aug. 2010

Wes is now standing up by furniture and crawling EVERYWHERE! He is into everything. He loves to "help" me sew. He plays with my sewing machine petal and picks up all the threads on his pants. Sept. 2010

Max is giving all of you a kiss! He is hilarious. He sits on the floor and bounces, plays the drums on his little stool, and watches everything. You can almost see his brain trying to figure out how things work. Maybe he'll be an engineer like his uncle. July 2010

Wesley playing in a box just like all kids do. So cute, he thought he was pretty cool. July 2010

Max at feeding therapy. This picture is before he actually started doing anything. About 5 seconds after this picture was taken he was screaming. Oct. 2010

GREAT Changes!

2010-06-11T10:40:00.010-04:00

Max and Wes are doing GREAT!

SIZES: Max is still our "Big Guy" he is 29 inches long and 23 and a half pounds.

Wesley is 27 inches (I think, sadly I am not good at all the boys details). He is still 17 pounds. He is still struggling to gain weight.

DEVELOPMENT: Max is starting to roll consecutively! He rolls over to toys or to grab one of his tubes. He is hilarious, he likes to stick his bottom lip out and then smile really big. My Dad can make him do it on command. It is so fun! Max is also sitting up on his own. We set him in the sitting position and he'll sit up playing with toys and talking to Wes. He loves to talk, he is our chatty boy. Max is also still teething, the poor kid has been teething for months. He has one of his front teeth and four on the bottom. When he smiles it is adorable because his huge front tooth pokes out. He a big fan of zerburts, ( sorry, I'm not sure how to spell that) he just giggles and giggles.

Wesley is rolling EVERYWHERE! He loves to roll across the room to steal the toys Max is playing with. He is also sitting up. He loves to sit and play the xylophone. He hits the keys really hard while closing his eyes because it is so loud. So fun. He recently started standing up next to furniture (we stand him up next to it and offer minimal support). It is one of my favorite things. He gets so proud of himself and just beams.

The boys therapists are very happy with all the progress they are making. Hearing that makes me a happy Mama!

We recently had appointments at the pulmonologist. Both boys are doing fantastic. Max was able to go down on her vent settings! He is in charge of all his own breaths and his pressures are lower than before. I can't tell you how exciting this is! We have finally begun the process of getting rid of the vent. Mark and I realize that it is still going to be a long road, but we are ecstatic that it has begun! If his wean is successful we can go down from 3 breathing treatments to 2. ALL GOOD THINGS!!! Wes had his appointment yesterday. We are able to get rid of at one of his breathing treatments, and if all goes well we can get rid of another in a few weeks. He still on a little oxygen when he sleeps but that is it. We have a wireless baby all day!

Thank you all for your support and prayers. It is amazing to see your prayers in action. The boys are thriving, we could not be more happy with all their progress. Please pray that they continue to develop and grow. Specifically for Max's lung development and for Wes to gain some much needed weight. He is also still struggling with retching. We still are not sure why he is doing it, or how to stop it.

Thank you. Thank you. Thank you. You support, prayers, meals, landscaping, help, gifts..... No words will express how blessed we have been.

I forgot how to post pics. As soon as I figure it out again I will post some adorable updated pictures.

Happy Birthday!!

2010-03-27T13:09:00.014-04:00

Sitting in the chair together, Wes is kind of making a 1.

Family Picture. I don't know what the boys are looking at.

Max and Wes are 1!

Maxwell and Wesley had their first Birthday yesterday! We had a small relaxed party. The boys slept through half of it, but it was still fun to celebrate how far they have come. At birth Max weighed 1 lb. 10 oz., Wes weighed 1 lb. 9 oz. They are now weighing 21 lbs. 10 oz. (Max) and 17lbs. + (Wes). HUGE compared to where they started.

The year has been difficult and amazing. Losing my Mom has been a struggle for me. It is hard to think that she never got to hold the boys and doesn't gets to watch them grow up. I take comfort in thinking she is watching them from Heaven, helping us raise them into the amazing boys that they are.

Our boys have been through so much in their short lives. They have made and are making amazing strides; learning, growing, and discovering new things.

Max is laid back, investigates things before he grabs them, and is happy to play on the floor all day if he could. He loves to play with his tongue and stick his thumb in his mouth to feel his one lonely tooth- Mark calls it his tusk. Wes is a mover and a shaker. He scoots himself across the floor on his back, puts anything and everything in his mouth, and reaches for anything he can touch. He lays on the floor and kicks his feet, we call it the "Irish Jig." They are giggling and laughing at each other (my favorite thing to see). It seems like everyday they do something new.

The next year is going to be one of changes, hopefully. We would love to see Wes off oxygen ( he is currently on oxygen while he sleeps). Max has more obstacles, but we are praying for decreased vent settings and lower oxygen needs. Maybe even off the vent a year from now...hey, a Mom can hope!!

We praise God for our Miracle Men. They are just that, miracles. Everyday we have with them is amazing. Thank you so much for your prayers and support through the last year. We have all come so far.

Top Pic: Max looking at Mark for permission to dive in.
Bottom Pic: Wes thinking about more cupcake destruction.

Already 1 Year

2010-03-08T20:39:00.003-05:00

It has been a whole year since I was admitted into the hospital with preterm labor. March 9, 2009 was one of the scariest days of our lives. I was put on bedrest and went into the hospital all on the same day. I stayed at Holland Hospital for 5 days (I think) until I hit the 23 weeks, then they transferred me by ambulance to Spectrum Health where I stayed until the boys came. It is hard to imagine everything that has happened in that year.

The boys are doing great! They are growing and changing everyday. It is amazing to see their progress. They are interacting with eachother, cooing, laughing, and all sorts of fun stuff. Max weighs 19 lbs. 8 ounces. Wes weighs 16 lbs. 8 1/2 ounces. Max is getting a tooth! It has been trying to poke through for about a month, but no luck so far. Mark and I wonder what he is going to do with a tooth, he doesn't take anything by mouth yet.
We have an appointment for Max with the pulmonologist Wednesday afternoon. We are hoping that he is doing well enough to either go down on his vent pressure or lower his oxygen level. Wes is still retching but it has improved slightly with the addition of a new medicine.

We are so happy to all be under one roof, and thrilled with how well the boys are doing. Max has been home for 9 weeks. In that time neither of the boys have gotten sick or had to make any trips to the doctor. We are incredibly thankful for their health thus far and pray that is continues.

We have been getting fantastic help during the day from friends and family. As well as delicious meals and goodies.
Thanks for your continued prayers and support. It mean so much to us. The road to this point has been very difficult. The future has its obstacles but we have a renewed strength forward.

New Pics

2010-02-15T20:35:00.006-05:00

I am getting really bad at updating this lately...as I was reminded by my entire family at my little brother's birthday party on Sunday!! Things continue to progress appropriately, I guess. Max is doing really well and has adjusted to life at home. He has had some good doctors appointments recently and they have resulted in a few adjustments to Max's vent settings, but not any of the pressures just yet. Things move a little more slowly after leaving the NICU, and we were aware of that before we left, but the reality is kind of a bummer when he is doing so well. Max is tipping the scales at 19 pounds as of today...and his cheeks are still as chubby as ever. His latest trick is peeing whenever he is put in the tub. The last two tubbies have resulted in at least 3 tub refills each. And the look on his face while he is peeing all over the place is of a deep sense of pride.

Wes is still chugging along. We continue to struggle with retching and weight gain, and truthfully, that has been an incredibly frustrating ordeal. No one seems to really have any idea what is causing it or what to try next. We are on our third type of formula in as many weeks and just really want this to stop and start seeing some good weight gain. He weighs 16 pounds as of today, but next to his brother if looks like he weighs about 10 pounds. Wes is off oxygen all day, and we have a sleep study in April to see if he can come off oxygen altogether!! It is hard to believe we will ever have a baby that is not connected to some sort of wiring or tubing.

Certainly one of the highlights of the last couple of weeks was a follow up photo shoot with Marie Clark. She came and did a session with us when the boys were about 4 months old...needless to say, they have changed a bit since then! Below are some examples of Marie's amazing talent. You can view all of the pictures at the following link:

http://www.pictage.com/690798

Wow

2010-01-27T20:47:00.003-05:00

Sorry for the long gap between posts...life is a little crazy right now! the boys are both doing well for the most part. Max has adjusted well to home life and is getting on a good schedule that somewhat agrees with Wes' schedule. We had our first pulmonary appointment with Max last week, and we were not real excited about it because we had a bit of an altercation with the doctor in the NICU before Max went home (she had a lot to do with him not coming home before Christmas). I am happy to report, the doctor was very professional and was impressed with how Max is doing. She really thought he would be working hard and struggling with the adjustment to home still, but said that he looks and sounds like he has been home for 6-months. That was good to hear! She even said that if he is still doing as well as he is now, that at the next appointment we can talk about making some ventilator changes!! Max has not really gained a lot of weight since he came home and is still about 18 1/2 pounds. Wes is plugging along and seems to have adjusted to getting a little less attention than he is accustomed to. He is still retching regularly and has started spitting up regularly as well. This has been a very difficult issue for us as we cannot seem to get any clear direction from any of our 6,000 doctors. The latest news is that we are being referred to a neurologist. I am not exactly sure what the thought process behind that is, but what's another doctor appointment? I had a pulmonary appointment with Wes on Monday that went well. We are now down to just 3 breathing treatments a day (from 4), which means I no longer have to get up a 5:00 AM...I get to sleep until 5:20 AM now...which is very exciting!!

Still here!

2010-01-11T21:55:00.006-05:00

Well folks, week #1 is in the bag!! Max has officially been home for 7-days and has far surpassed his little brother's first trip home that lasted only 49-hours. Max is just a doll. This whole move doesn't seem to have bothered him one bit. He just likes to look at new things. I think his nurses in the NICU spoiled him a little too much, because he does start to cry when he is not being entertained or held. And his cry is so adorable (and we just love to hear him make noise!!) that sometimes we listen to it for a little while before coming to his rescue. Overall the week has been good...a LOT of adjustments to make, and Kate has made most of them. I was not able to get as much time off of work...or hardly anytime off of work to be more specific...as I had hoped, so she, with the help of our in-home nurses and other family members have shouldered a lot of the transition.

It is an absolute riot to see both boys laying on the floor trying to figure each other out. They swat at each other sometimes, just stare sometimes, watch TV together sometimes...they are hilarious.

Wes tried to share his favorite rings with Max:

Then he realized he likes them all to himself:

Here is Max having a great time, Wes is still not sure about everything...

He's here!!

2010-01-05T22:14:00.004-05:00

Wow. A new leg of the journey begins. Max came home from the NICU yesterday late afternoon, concluding a 9+ month stay in the hospital. So far, I think he is making the transition better than his parents. Both Max and Wes seem pretty unaffected by what has been a tremendous change in our lives. The most emotional distress Max showed through all the events of yesterday was that I think the cold air made his eyes water a little bit. He did fine in the car on the way home and didn't miss a beat when he woke up in our house. There were about 7-8 different people from CareLinc (the medical equipment provider) and our nursing agency in and out of here for a few hours, and nurse Jennifer stayed from about 8:00 PM last night to 10:00 AM this morning. This is going to be crazy, but having him home is unbelievable. We got to sing and pray with both boys tonight, and I was able to kiss both of my sons "good night" and not "good-bye." Truly something I have been waiting for for such a long, long time. Thank-you to everyone for their prayers yesterday and for the last 9-months. It has been a long, hard, trial filled journey, but it is taking a turn for the better I think. We covet your continued prayers as we adjust to caring for Max at home.

Could it be?

2010-01-03T20:45:00.012-05:00

This is just going to be a short post...sorry for the lack of communication. I can hardly believe that I am writing this, but there is about an 80% chance that Maxwell is coming home tomorrow (Monday)!! After 9-months and 7-days, 283 total days and 15,000+ miles just commuting to the hospital and back, I cannot believe that he might actually come home. After a certain period of time I think I just thought this is how life would be for us: one of us parenting Wes while the other parented Max at the hospital. There is certainly equal levels of excitement and fear about Max coming home. Life will not be the same for us for a long, long time. We will have a nurse living in the house every night, help for Kate during the day while I am at work and a tremendous amount of responsibility with Max's trach. Please pray that tomorrow will be the day, that Max will make the transition well and that Kate and I will make the transition well. It seems like too much to handle right now and we are praying for an outpouring of the Holy Spirit to carry us through.

Here are some pictures from Christmas day...we cheated and put the boys by each other. Needless to say, it was amazing!!

Warning!!: These are the cutest kids you will ever see.

And we're back

2009-12-19T09:30:00.002-05:00

Hi everyone! It has been a LONG time since the last post, and I apologize for that. This whole "living in two places" thing is getting really old. Every time I wanted to sit down and write a post, something came up, or it was too late in the day, or there was an issue with the computer...but I am back.

The last couple of weeks have been challenging. To answer the question most people will likely have: Max will not be coming home before Christmas. He was doing really, really well right up to the vent discharge meeting, and a number of changes were made to his medications, dosages and frequency right around that same time period. This combination of changes did not sit well with Max and his oxygen needs increased to the 45-50% range for a long enough period of time that it "reset the clock" so to speak on him going home. I am happy to report that after a little recovery period, Max is doing well and seems to be back to himself. His oxygen requirements are back in the high 20% to low 30% range, and he is on a manageable breathing treatment schedule (4 times a day instead of 6). Even though Max is no longer scheduled to come home next week, we had this past Thursday night planned for what they call "rooming in." This is when Kate and I (and Wes) spend a 12-hour period (overnight) with Max in a room adjacent to the NICU, and we are responsible for all of his care. This was kind of scary and really exciting at the same time. We got there around 5:30 and got settled in (the room was about 10x14 if I had to guess). The room has a couch that folds down into half a bed, so we took along the Aero Bed (thanks AGAIN Tony and Cara), and we also had the Pack-n-Play for Wes, and they had to fit Max's crib and all of his hardware in there too. Needless to say, it was pretty tight. By in large, the night went well. We did have one event at about 11:00 where we had to change out his trach because he was desatting a bit. This is not an easy procedure, but it needs to become second nature for us, so the practice was good. The problem is that it was just practice and wasn't necessary. The reason he started to desat (meaning his oxygen saturation fell outside of the desired range) was because of a nebulizer that we had plugged into the "ventilation circuit" for a breathing treatment that was not properly assembled. It took us a little bit of time to deduce down to the nebulizer being the problem, but it was a very good exercise to go through in the hospital vs. our first night home. "That is why we have people room in" was a common phrase the next day. Nurse Ashley was actually in the room when all of this happened, but she did her job and stayed out of the way and offered what I will call "limited" hints. I ended up getting some good sleep, but I had been up since 4:30 in the morning and had worked 11-hours before driving straight to the hospital...so sleep came a little easier for me than Kate, not that she didn't have a stressful day getting everything together that we would need to have Wes out of the house overnight. Max sets off a few more alarms than his brother does, and they are certainly more shrill. Turns out I can sleep through those too, which should come as no surprise to anyone who has ever had the pleasure of sharing a house with me, but they kept Kate awake. In time I am sure she will get comfortable with them and the fact that we will have a nurse in the house when we are sleeping should help a little bit.

So the new date for Max coming home has been penciled in as January 4 or 5. We are so excited. It would have been great if he could have come home before Christmas, but at the end of the day we want him home when he is ready to be home. Please join us in praying that Max can stay infection free for the next few weeks (and years!) and that we won't have any unexpected bumps along the way.

Wes has been a good boy with all of the crazy stuff going on. We had a lot of training on the equipment Max is coming home on and he slept through the whole thing. Then he slept for about 13-hours straight at the hospital on Thursday night, despite all the new alarms and surroundings. We did finally get his surgeon to agree to an upper GI, and that all looked good, so hopefully no additional surgery. Naturally, the day after the procedure Wes spit up formula for the first time since he had his surgery. So something is either wrong and not showing up, or the retching is some sort of learned thing. We don't know, we just know we want it to go away.

We covet your continued prayers for the boys and for us. The last few weeks have made us realize what exactly it will take to care for Max at home, and it seems pretty daunting right now. Pray that our nerves will be calmed and we can make all of the arrangements necessary before he joins us here at home.

Here are some more recent pics:

A lot to be Thankful for

2009-11-30T18:29:00.006-05:00

It's Mark again, Kate let me take a little break from the blog. Hard to believe Thanksgiving has come and gone already! I will add a disclaimer right out of the gate that I am writing this blog and taking care of Wes simultaneously. For example: I have been trying to write those last 3 sentences for about 35 minutes now...needless to say, this post may be a little disjointed.

I am really super happy to report that Max is feeling better!! He was still battling a fever up until about Saturday morning, but has been doing much better over the last 48-hours. The docs are still very confused by the whole episode. They checked and rechecked every possible thing and everything came back negative...which is great but a little frustrating. The upside (always looking for the positive) is that the fever didn't seem to effect any other part of his body: his respiratory status is unchanged or improved, he continues to do his "business" with ease (maybe "gusto" is the better word), and he continues to gain or maintain his weight (he is on a diet...again). We are ecstatic that the fever seems to have subsided for now, and we certainly feel like we have our baby boy back again (I got no less than 50 smiles out of him yesterday...just not for the camera!!). His oxygen needs have been in the 30% range...a tremendous improvement over, oh the last 8-months or so!! He really seems to have turned the corner on the oxygen side of things and has been below 40% for a good 10 days or so now. Max gets a sizable dose of Viagra (or Sildenafil...for those of you who blush easily) to help treat his pulmonary hypertension (Viagra was originally designed as a blood pressure medication that doesn't work well in adults, but has other "marketable" benefits) and one of the side effects of this dose is that it makes him all hot and bothered. I am not trying to be funny here...he really starts sweating like crazy (he gets the cutest beads of sweat on his upper lip). So the docs wanted to see if they could start to wean the size of this dose to see if that would help alleviate his temperature. Before they could do that, it was time for yet another heart echo. I have lost count but I am going to guess this is heart echo number 15 or so (one of the things I am thankful for is Priority Health!!). In typical Max fashion, the echo showed no real signs of pulmonary hypertension!! What?? I kind of feel like God pulled the old bait and switch on us. Like He gave Max a mysterious fever so we would be distracted while He healed other areas of Max's body. I am not going to question your methods God...just be thankful for them. The high PH was always something that deeply concerned me...much more than I ever let on to anyone. So to say that the heart echo results were very good is an understatement for sure. I feel like a different person since I heard that news, almost like I can just enjoy being with my son instead of worrying about his fragile little heart.

True to my earlier disclaimer, it is now Thursday night and I am just getting back to finishing this post. It has been a busy couple of days. We had Max's vent discharge meeting on Wednesday. This was kind of a big pow wow with everyone that will be involved with Max post NICU, which is to say a LOT of people. There was a number of people from the respiratory practice that will be treating Max after discharge, people from the Early On development clinic, social workers, representatives from the home nursing company, representatives from Carelinc (the company who provides all of our 10 million medical supplies), Dr. Doctor was there, Jason the Physical Therapist who has been working with Max for a number of months, and Nurse Emily and Nurse Ashley (thanks for being there ladies!!). It was kind of overwhelming, but at the same time exciting to talk about Max actually coming home!! We did not get a firm date, but we are tentatively looking at December 21 or 22. I cannot even believe I am writing that. It creates such a crazy mix of emotions: unbelievable excitement about having my family under the same roof, our roof, for the first time in more than 8-months, but at the same time there are a lot of unknowns about how much we do and don't know. I like to think we are ready, but with so many pieces of equipment and so many procedures to know, it is hard not to second guess ourselves.

Here is a picture of the efforts taken to break Max's fever: he is naked except a diaper with cold cloths all over him...not fun.

Please pray with us that Max will continue to do well in the NICU for the next couple of days/weeks. We are still needing him to stay below 40% oxygen, and he was at 39% for the better part of the day. He had a really good blood gas yesterday (7.45 and 47), so they made a vent change, they also increased his sat limits (from 90-100 to 92-100) and took away some of his pulmonary medications. Needless to say, that is a lot of things to change in a few short hours. We are praying that he adjusts to the changes quickly and can get back to the low 30% range again soon.

I have to mention this moment at the vent discharge meeting: We were discussing the amount of Albuterol that Max has been getting, and someone told Dr. S (the pulmonary doc, also, I am not protecting the innocent, just have no idea what his last name actually is...but it sounds like "shoe in") that Max was on 0.5 mg, nebulized. He looked very confused so I repeated that it was 0.5 mg. His response, verbatim, was, "that does no compute." It was 5 mg nebulized. Sorry, I only have a lowly finance degree okay. He might not know how to calculate a Compound Annual Growth Rate right off the top of his head...so there.

Wes is still doing well at home. we continue to have issues with retching and are both feeling like we may need to take some more drastic measures that we hope does not lead to him having to have the Nissin surgery repeated. The first step would be to install an extension that would bypass his stomach completely to give it a chance to fully heal (they think he may have pulled a stitch or something along those lines). If that did not work, then we are back in the OR. The chiropractor seems to be helping with reflux, but the retching seems to be somewhat unrelated in a way. Not what we were hoping for. He is still an absolute joy to have around and has really been a great baby. He was sitting with Nurse Ashley at the vent discharge meeting the other day and was scanning every face in the room. Every time he looked at Kate or I he would smile, then start looking around the room again. What more can a parent ask for?

Getting Older and....HUGE!

2009-11-24T21:33:00.003-05:00

Oh, my goodness my boys are almost 8 months old. Where does the time go?
Max is 16 lbs. 8 oz. and Wes is...I'm not sure he doesn't get weighed regularly anymore. I'd guess he's around 14 lbs. Looking back at the first couple pictures of them I would never have guessed they'd be this big already.

This afternoon I took Wes to the chiropractor for the second time this week. The doctor was impressed that he had kept most of his adjustments. I have another appointment tomorrow. I am not sure how long it will take to see changes, but at this point I am really optimistic. Please pray that this works. Wes has been retching ever since he came home from the hospital the end of September. This would be a great alternative to continuous feedings, another surgery, and/or extending his Gtube to a Jtube (feed him into his intestines).

Max has continued to mystify the Docs. No one can figure out what is wrong with him. Yesterday afternoon his temp. spiked to 39 (102ish). Thankfully it came down a little by early evening. Today was a little better, his highest temp was 38. He was much more himself today. He smiled at me and copied my fishy face a couple of times. Mark and I really like having our calm smiley boy back. Please pray that his fever can stay down, and that the doctors can figure out what is causing them. At this point the only thing they can come up with is some kind of viral infection.
This afternoon Max got put on a vent that is similar to the kind of vent he will come home on. Nurse Mandi drew a gas around 5:30 and it was great! A great sign. We are hopeful that the transition to his home vent (when it comes in) will be just as smooth.

A HUGE step forward...hope it holds.

2009-11-22T20:45:00.002-05:00

The last couple days have been the typical ups and downs. After Thursday night Mark and I were really upset. Max's temp. of 104 really scared us. He still has a temp. but it is now around 100 (37-38). He is on 2 antibiotics right now. They are broad antibiotics to stop whatever is going on. So far all of the tests are negative, which is leaving the docs. unsure what is going on with him. The antibiotics are given through IV. This has caused some problems for Max. He has gone through more than 15 pokes. The IV's go bad really quickly. They have even had to shave some of his hair to put them in his head.

Between the numerous IV's, couple hours of increased oxygen, and temp.-- things have been a little tense. We were supposed to order the home vent Friday, but because of the everything it wasn't. We feel that Max has been working so hard the last couple weeks and we just want some acknowledgment. Yes, his oxygen went up for a couple hours with the high temp. but it came right back down. Thankfully someone agreed. After much discussion, we got word tonight that the home vent is going to get ordered tomorrow! A HUGE step towards home. We feel like Max is finally getting a much deserved pat on the back.

Wes is still "Wild Wild Wes" keeping us on our toes and we love it. He continues to retch, but we are trying something new. I am taking him to a chiropractor tomorrow morning. Hopefully it will work and we can soon get rid of this annoying drip feed.

Thank you everyone for your prayers. Max is doing MUCH better and so are Mark and I.

Punched in the gut.

2009-11-20T00:39:00.004-05:00

Today was...well it was fine until my nightly call to the NICU. When I called and our nurse answered the phone, I could tell right away that something was wrong. She was very hesitant, and that is not Nurse Ashley's style. Max has been having a great week. There was talk of ordering a home vent tomorrow(friday). His oxygen has been under 40% and he has been making progress.

Tonight all that has changed. Nurse Ashley noticed that Max was a little warm, which is fairly normal for him these days. So, she stripped him down to his diaper and cuddled him for a while, or at least tried to. Max was inconsolable. She said she has never seen him like that before. Over the next couple minutes she had to turn his oxygen from 32% to 65%. A significant jump. She also took his temp. which was 40 (104). NOT GOOD.

The increase in oxygen takes away the opportunity to order a home vent. Mark and I feel...well...I don't know how to feel anymore. Every time anything good happens with Max something comes along and crushes it. One step forward--ten steps back.

Please pray for Mark and I. We just want our family together. Our boys have gone through soooooo much. It is becoming harder and harder to deal with these set backs. Sometimes I think we are going to celebrate their first birthday in the NICU. I am...out of words. After seeing all the people today at my Grandma's visitation and telling them how great things were........ I told them I saw a light at the end of the tunnel. The light is gone.

I just want my son home. I just want my son home.

I know God has a plan for my family. I trust that my son will come home one day. I have faith that the 4 of us will all be together. I believe in a God that heals---Heals my sons lungs and my tattered heart. I know these things to be true, and yet I struggle with it all.

Thank you for your continuous prayers and support over the last +/- 9 months. Our family has been so blessed by it. Thank you for showing me just how truly amazing the family of God is.

With much Love and Thanks,

Kate

Keep on Keeping on

2009-11-18T20:16:00.005-05:00

Wow...8 days have passed since I last updated the blog. Where does time go? By in large it has been a pretty good couple of days for the boys. Max is doing quite well, and his oxygen needs have been in the mid 30% range. If he can continue to hold this level, we can once again talk about ordering his home vent and start looking forward to the day we can take him home. We have started to do all of the trach care training. It has been going well, and Kate and I have been doing as much of the trach care as we can ever since Max had his surgery. The part of trach training that is not so much fun is all of the talk about worst case scenarios. It is easy to forget how important that man made hole in his neck is to his very survival, and taking care of it and knowing what to do in worst case scenario situations is very important. I guess it was just a reminder of how much longer this journey is going to be. Obviously no parent ever wants their child to need a trach, but if we had to pick between the boys, it would be Max. He does such a good job of letting us do all the care stuff (this includes: cleaning the "stoma" site (the hole in his neck) with a sterile q-tip and soap, then a sterile q-tip and soap, then a sterile q-tip and sterile water, then a sterile q-tip and sterile water, then drying the site with sterile gauze, then placing a sterile sponge under the trach so it doesn't irritate Max's neck so much, then changing the ties that go around his neck to hold the trach in place. This has to be done twice a day), he will even smile at us from time to time. Most kids need to be restrained during this procedure. Max is just such a level headed baby...who is bordering on being a toddler. The docs put him on a diet earlier this week to try and slow down his weight gain...he continues to pack on the ounces regardless. He tipped the scales last night at 16 pounds 10 ounces. We have recently lost 2 of our day nurses that have been taking care of Max for almost 8-months to maternity leave because they decided to have babies of their own...and they didn't even ask us if that was okay. We had been hunting around for a couple of nurses to take care of Max during the day (Ashley and Sara have the night shift covered!!) because it is very important at this stage to have so familiarity in Max's life. Our most recent addition is nurse Megan, and she has been a real answer to prayer because it is very obviously that Max likes her a lot. Maybe a little too much if you ask Max's mom. For those of you keeping score at home, Max's most recent blood gas was 7.40 and 43...which is literally an ideal blood gas, but because of his volatile oxygen requirements, none of the docs are willing to rock the boat with vent changes at this point. The current vent settings are 25 over 12.

We were able to have a little family time at the hospital recently with the trach training classes. Here is a picture of Max being SO serious. I tried to match his seriousness but had a difficult time:

Max is on a high dose of Viagra as well...for blood pressure reasons. One of the side effects is sweating, so it is not uncommon for us to get to the hospital to find him hanging out in his crib in just his diaper. A far cry from the 90+ degree, 80% humidity incubators they were in for so many months!! Max also really likes holding on to his G-tube, and I think it looks hilarious. Note the 17 fat roles on just his arm!!

I will use the above picture to identify all of the pieces and parts that make up the "total package" that is Maxwell James Wiersma. The button he is holding in his left hand is the port that goes directly into his stomach for feeding. The rest of the stuff is part of the ventilator setup: the two tubes along side his head are the air and humidity delivered by the ventilator and the other tube is to help in exhaling, the sensor that is covered by Max's right hand is called a "flow sensor" and that detects when Max is taking a breath and that triggers the vent to do its thing, then the multi-colored tube thing that is wrapped in plastic is called a "ballard" and that is how we suction Max out. The trach tube occupies his entire airway, so the natural mucousy stuff that you and I cough up or swallow stays in Max's lungs until we suck it out. The other stuff is just leads for heart rate and respiration monitoring.

No real changes to report with Wes: still crazy, still retching. We are going to try a chiropractor for a couple of weeks and see if that makes any difference for his comfort level before trying the more invasive options to cure the reflux issue. Please join us in praying that this will be the path way towards resolution of this obnoxious, heart breaking issue. Wes has not been gaining weight at nearly as fast a pace as his BIG brother. He weighed 13 pounds 8 ounces earlier this week, which is the same as his weight from two weeks ago. Needless to say, I think it is time to crank the feedings up again, we just don't want to cause him any undue stress.

Wes has also developed a new hair due that looks a lot like a mohawk, or a fauxhawk for the purists. Straight out of the bath his hairs sticks up. Now if it would just curl...

Wes has also developed this desire to lick the side of my face when I am giving him "zerberts" in the bath tub. It is a little odd and Kate finds it really hilarious, so I have added a video of it below:

On a somber note, Kate's Grandma Blauwkamp passed away on Monday. She was 94-years old and lived a very full, very happy life. I will never forget way back when I first started dating Kate, I was often doing service calls to the Royal Park condominium complex where Grandma and Grandpa lived. Without fail, I would get a root beer float with Butter Pecan ice-cream every time I stopped by to say "hi." Kate and I later lived in their condo for nearly 4 years after we got married, and it was a fantastic place to begin our lives together. There was a 30+ year age gap between us and all of the neighbors (it is a retirement community where you have to be 55 or older to own on of the condos), but after 3 and a half years, we ended up making some good friends. Kate was sitting with Wes on her lap when she got the call that Grandma B. was in Heaven. After a couple minutes of processing, she looked at Wes and said, "Grandma Great is in Heaven with Grandpa Great" (Grandpa B. passed away 5 1/2 years ago)...Wes grinned from ear to ear. Then Kate said "Grandma Great gets to sing with your Grandma now too." Wes smiled again.

Winded

2009-11-09T19:37:00.007-05:00

It is getting harder and harder to find time to sit down at the computer to get the ole blog updated...but I will keep finding that time one way or another. The last week has been okay. No real bad news, but we did get our hopes dashed with Max coming home for the time being. The NICU docs had written an order to get Max a home vent (the vent he will have for the foreseeable future). When the person from pulmonology who orders the home vents stopped by to see Max, she noticed that his oxygen saturation range was 85-100. Apparently Max has to be at a saturation range of 90-100, but this change has caused his oxygen needs to climb above 40% (into the mid 50s). If his oxygen requirement is over 40%, no home vent and no plans on coming home. This was especially hard to hear. We feel like we have been patient, and we were really excited about the idea of Max being home by Christmas. Now that idea seems like a pipe dream. I just want my family together again. I don't care if I never sleep again, I just want to spend time with Kate and our boys, not driving back and forth to the NICU. Right now, Kate and I take turns going to visit Max each day, so the other stays home with Wes. The rest of the day I am either sleeping or at work, so we spend about an hour during the week parenting Wes together, no time with Max together, and maybe a couple of hours on the weekends. It is getting old. We are just worn out and cannot wait until those nights spent apart visiting Max in the hospital can soon be spent together with both boys at our home. We let ourselves get very excited, only to be knocked down for the umpteenth time. It is even more difficult knowing that something as seemingly simple as Max's oxygen requirement is what is keeping him there. I haven't updated weights recently, but Max tipped the scales at 16 pounds 5 ounces last night. He is growing out of 9-months clothes, and he is a 7 1/2 months old micro preemie who entered the world weighting 1 pound 10 ounces. He is officially on the growth chart for kids who are born at term for his age. Everything just seems to be working so well, but his lungs just don't want to cooperate. Please pray that God will grant healing to Max's lungs, and patience to his parents while we try to wait on God's timing to reunite our family.

As you can see from the video below, being in the NICU doesn't seem to bother Max too much. He was ALL smiles yesterday!!

Wes continues to be himself. He has Kate wrapped around his finger something fierce. One little whimper and he knows he gets to take a walk around the house while getting his little butt patted and listening to his Mom sing him songs. Sometimes I think he looks at me with a, "ha ha" type of look. The reflux continues to be an issue and Kate and I are getting sick of it. We have doubled his dose of Prevacid, gone back to drip feeds, and it feels like the reflux/retching has maybe worsened a bit. The surgeon who performed the Nisin G-tube surgery won't agree to another upper GI procedure (an x-ray procedure to examine the esophagus, stomach and upper intestines), he would rather put an extension on Wes' G-Tube so he again is fed directly into his intestines. Kate and I would rather not do this because Wes will be beside himself hungry. We are contemplating taking Wes to a Chiropractor to see if that would help. Pray with us that God will reveal a clear path towards healing, and if He wants to do that apart from medicines and other methods...that would be good with us!! Wes weighed in around 13 1/2 pounds last week, so he is going to have to step it up if he thinks he is going to win any wrestling matches against his big brother in the near future!!

Here are some random pictures from the last couple of days:

Those of you keeping track of the Twinners on the Lamar's blog already know that Adalyn and Emma were born on Thursday morning at 25 weeks 2 days weighing about 1 pound 15 ounces each and 14 and 13 inches long, respectively. I was blessed to met them yesterday with their dad Dave and grandma and grandpa Lamar. The girls are doing great thus far, Adalyn is even breathing on her own with no ventilator and no oxygen!! Quite a feat for such a little girl. There will be a battery of tests and test results in the coming days, so pray for the girls and pray for their parents. We pray that those little girls breeze on through the NICU at lighting fast pace.

It was a real blessing for me to see those little girls as reminder of how far God has carried Max and Wes. It is very easy for me to forget the past and get angry and lose patience about the present, but seeing Adalyn and Emma reminded me that God has never let go of our boys, and he will never let go of the Lamar's girls. I have really been struggling with God's timing in the past few months and it has given way to a lot of anger. Meeting Adalyn and Emma was a really good reminder to me that God is still in control...even after 226-days.

Reformation Day

2009-11-01T20:54:00.006-05:00

I hope that everyone had a safe and enjoyable Reformation Day. I really wanted to stay home and hand out copies of the 95 Theses of Martin Luther to all the neighborhood kids, but Kate wanted to have some family time, so we loaded up Wild Wild Wes and headed to the hospital. We took a little field trip up to the Labor and Delivery floor to introduce Wes to Abi Lamar and her parents. Then we took Abi's parents down to the NICU for a guided tour of what life is like there. After that, we decided to start a new family tradition: we are going to dress up Max and Wes to commemorate Reformation Day. Sounds strange, I know. I will just cut to the chase: if you have children, you may want to not look at the following pictures. There is no way there has ever been a cuter set of bear cubs ever in the history of the world.

I may as well just stop the post there. But I will give a brief update on how things are going. Max has been doing pretty well. His oxygen is up a little bit, 40-45% usually. His secretions are also up a bit (the junk you an I would cough up, but Max can't because of the trach), which can be nothing, or it could be an indication that he is getting sick. We really hope that is not the case. They have made a couple of changes in the right direction on Max's ventilator, which could be why his oxygen is up a bit. The dos have talked about ordering a home vent for Max (the ventilator that we will take home with us), which is a really good sign. That might be the first tangible indication that Max will one day come and hang out here with the rest of us. We can't wait.

Wes is still being himself. The retching/reflux is maybe a little better since the last post, but certainly not gone. We have been feeding Wes over an hour (instead of a drip feed), and it does not seem like his reflux is any worse, so that is nice. He continues to keep his parents very busy, and we love it to pieces.

I hope you have all had a chance to check out Abi and Dave Lamar's blog. They have had a VERY up and down couple of days, but the key is that she is still pregnant. She is 24 weeks 5 days today, which is the same as Kate was the day our boys were born. We pray for many more days and weeks for the twinners.

Here are a few more pics:

Needless to say, Wes was not quite as happy about the face paint and warm fuzzy coat with adorable little bear ears on it.

Prayers for the Lamars

2009-10-29T21:08:00.003-04:00

Tonight I am asking for prayers for the Lamars. Abi is 24 weeks 2 day pregnant with twins. Last night she was moved to the labor and delivery floor at Spectrum Health. We were all praying that is would be a short trip downstairs but that does not seem to be the case. Today thing seemed to have progressed. She was 1 cm dilated yesterday, to 4-5 today(last I heard). Her cervix has also started to thin. They have also put her back on mag as well as a number of other drugs to stop any contractions and irritability.

Please pray that the doctors can stop her contractions, thinning, and dilation. Also, pray for Abi and Dave as they go through this process. Please join us, their brothers and sisters in Christ, as we surround them with prayers.

If you want to check out their blog it is: http://lamartwinners.blogspot.com/

Changes

2009-10-25T14:53:00.004-04:00

Overall, the week has been very good. I will start with Max, because that is where most of the good changes occurred. Max is off the INO!!! The docs made the decision to start weaning the Nitric Oxide last week, and it was as if the gas made no difference to Max. He never really had a hiccup as they lowered the dose every 12-hours until it was off, and since then he has been rock steady in the mid 30% range on his oxygen. As if that was not enough, the docs even decided to start trying Max on CPAP weans. Now that Max has the trach, this is an easy thing to accomplish, it is essentially making a few changes to the ventilator settings. Much like the INO weans, this has really been a transparent process thus far. He is currently on CPAP settings (meaning they give him a base pressure to assist in breathing, but that is it...he does all of the breathing and determines the "size" of the breaths he takes) for 6-hours twice a day, so he is pretty darn close to being on CPAP indefinitely. His gases have looked pretty good following these weans as well. Max is also down to "bolus" feedings, which is the term given for gravity feedings via a G-tube. These have been going well and Max handles them like a champ, the biggest concern now is that his blood sugar has been a bit unstable in the past when he has been on bolus feedings, so we hope he can overcome that this time around. Please pray with us that these trends all continue in the right direction for Max. He is still on a small dose of steroids, which could be helping his oxygen needs remain stable. Our hope is that this is a new baseline for Max and we can start thinking about getting ready for him to come home in the next couple of months.

I was able to hang out with Max for a long time yesterday and we had a lot of fun. I even caught a good smile on video!!

Wes has not really had a bad week, but we did end up having to go to drip feedings via a pump for 20-hours a day. This was due to his reflux/retching. The pump feeds don't bother me too much, because now I just have to do a breathing treatment at 4:30 A.M. and then I get to go back to bed!! As much as I enjoyed watching SportsCenter with Wes every morning, I was ready for a little break and some extra sleep. Kate is really bumming about it. She had no problem taking an hour to feed Wes every 3-hours and she really misses having that time with him. It turns out Wes is sleeping or unhappy at 5:00 in the morning, so that explains our varied feelings on the drip feedings. One thing that is not any fun is that the pump comes with a full on IV pole that provides us with about a 5-foot leash. So moving Wes around the house has become a BIG pain in the butt. I am not sure who the IV pole belongs to, but I hope they don't mind me doing a little customization to it to make it a little easier to move around. By far the biggest disappointment with the change to drip feedings is that there does no seem to be any less refluxing or retching. Kate, who I would describe as very sweet natured and non-confrontational, has turned into a little bit of a bulldog when talking with the various doctors who are weighing in on this whole reflux/retching business. After a number of conversations, she was finally able to get one of the docs to write for a prescription for Prevacid (we have been using Zantac) to see if it would help at all. Apparently insurance companies do not like Prevacid because it is significantly more expensive than Zantac and they say it does exactly the same thing. I would say that after two days, the jury is still out on whether Prevacid is the cure for the reflux, but it is quite apparent that it seems to be helping. Please pray with us that this combination of treatments can be the end of Wes' reflux.

We decided it was time for Wes to sit at the table for dinner when Grandpa B. came over on Friday. I think the high chair might be a little bit big for him...

Mom always like to steal pictures of Wes and I while we are trying to do manly things like watch football or the Food Network.

I have a different kind of prayer request tonight. Abi and Dave Lamar are friends of ours who are pregnant with twins. Abi is currently 23 weeks and 5 days pregnant and has been at Spectrum Hospital on bed rest for a week. Needless to say, they are very much on our hearts and minds as we know first hand the emotions they are dealing with. Please remember to pray for Abi, Dave and the "twinners" (they do not know the genders). For more information and to get updates, their blog address is:

http://lamartwinners.blogspot.com/

A good week

2009-10-18T20:26:00.007-04:00

We have officially broken the 200-day mark!! By in large, it has been a good week. I will start things off with Wes. He continues to do well at home (3-weeks and 1-day now). We had our first pulmonology (the first of MANY) on Monday. The doctor was happy with how Wes was progressing and thought he "sounded" very good, meaning she listed to his breathing via a stethoscope. Perhaps the best part about the doctor visit was that we were able to get a new nebulizer medication that takes about half the time to administer as the one we had before. It is just a more concentrated dose, but it means that I get to sleep until 4:45 as opposed to 4:30!!! Those are some of the most special minutes of my day. Really, the best part about the appointment was that we were able to go and see Max as a family. That happens very rarely...in fact this is only the second time the 4 of us have been together since September 1 when Wes was first discharged.

We have still been having some issues with Wes having some retching episodes following his feedings. We have been trying to feed him over about an hour instead of 15 or so minutes, but that really cuts into the rest of the day, particularly when he gets fed every 3-hours. Obviously we will do whatever is best for him, but we do covet your prayers that he will start to handle his feedings better for his own comfort. We are going to touch base with the surgeon tomorrow and we will have a better idea of what we need to do then. One likely solution is a feeding pump that will feed him his regular amount over 3-hours, so it is essentially a drip feed.

Here is a picture of Wes in his newest hat, compliments of Nurse Emily who recently went to Disneyland. It even has "Wes" embroidered on the back!! (sorry I cannot figure out how to rotate the pictures that I upload, I even consider myself pretty savvy when it comes to these things)

And here is another of Wes checking out his Occupational Therapist Erin.

Max has had a good week overall. Some ups and downs, but he is doing well as of now. His oxygen needs have been hanging in the high 3o% to low 40% range. Because of that, the docs started to wean the INO (Nitric Oxide) and as of now, he is at 4 parts per million compared to 20 ppm at this time last week. As long as he continues to maintain, they are weaning him by 1 ppm every 12-hours, so maybe by Tuesday we will be rid of the INO machine...again...for the fourth time. This is a huge step, because if he can successfully get off the INO, and he continues to do well and maintain oxygen levels below 40%, then we can start talking about Max coming home. I think. So our prayers are that God will continue to heal Max's lungs so that his vent pressures can come down and his oxygen requirements decline. And that Max can come home and be with the rest of us. It is hard as parents to have Wes home and then to spend only 2-3 hours a day with Max. We want to spend all of our time with both of them.

Nurse Emily not only bought Mickey hats for the boys, but she is also and amateur Ansel Adams!! (she took the following picture)

And of course I have to get a picture with Max in his Mickey hat. I took this one, so the artistic touch is nonexistent.

I have also been forgetting to say a few thank-yous over the last few posts. A group of angels got together and hired a cleaning service to some in and clean our house from top to bottom the day before Wes came home 3 weeks ago. The place was spotless. I only know who the "angels" spokesperson was, so if the rest of you read the blog, THANK-YOU. This freed me up to spend the whole weekend with Wes instead of cleaning the house. Also, a big thank-you to all of the food angels. We thought we would finally have time to start making meals for ourselves like a "normal" family. NOPE!! So a big THANK-YOU to you as well. And a huge THANK-YOU to all of the people who continue to lift up our precious little boys in prayer. This has been a long road, much longer and WAY more mountainous that I could have ever imagined on March 27 when the boys were born. But we have not had to go it alone. We have felt the prayer support like a blanket around us in our darkest hours and longest days. We could never have made it this far without you.

What a mighty God we serve

2009-10-11T20:26:00.003-04:00

I cannot even describe how different I feel emotionally writing this post versus the post from last week Sunday. Once again, after all of the setbacks, the trials, the yelling at God to hear our prayers, the screaming at Him to act on those prayers, He has carried us through depths of the valley. Needless to say, Max is doing much better. There have been so many treatments used in the last few weeks it is hard to say what helped. First it was antibiotics (which he is finally done with, so hopefully his stools can firm up a bit!!), then a course of steroids, changes to his oxygen saturation limit, and on and on. I kind of like it when there are so many treatments in motion and not one identifiable solution...because it is easier to give God the glory. So when we last left off, Max was in 100% oxygen. As of this afternoon, he was in 33%. On top of that, his blood gases have been improving each day and they turned his vent settings down this afternoon to 26 over 11 (from 28 over 11). Those settings are not real low, but a change in the right direction is a change in the right direction. He is not out of the woods or even on his way to coming home yet, but it seems like this recent crisis has been averted. Out prayer is that is current oxygen level will be the start of a new baseline and that all of the treatments, particularly God's healing hand, will get Max to a point where home doesn't seem so far away. Kate, Wes and I would really love to have Max home for Christmas so we can celebrate the greatest gift with our amazing gifts. But for the time being, we are happy Max is feeling better!! Praise God.

Here is one of my all time favorite pictures of Max. It was taken two nights ago when Nurse Ashley (one of our night nurses who has been taking care of Max for more than 6-months now) came on shift and was saying "hello."

Wes continues to do well at home. Two weeks without a hospital stay...way to go buddy!!! He has had a LOT of appointments, most of which have been at our house. The in-home nurse cam twice, occupational therapy came twice (they work mostly with improving motor skills and making sure he has good range of motion, etc.), the speech therapist came once (they work on bottle feeding) and he had a follow up appointment with the doctor who did his Nissin G-tube surgery. By in large he is doing well. We do a lot of exercises with him to strengthen his neck and make him aware of his feet, toys, face, etc., and that has been going pretty well. The follow up with the G-tube doc was okay. He thought Wes' site looked pretty good (it doesn't look very good to Kate and I...it has been red and oozy, but he is the doctor), but he was concerned that Wes has been retching a bit following his feedings. Since his G-tube procedure, he has been having some nasty sounding episodes where he gags and sounds like he is going to vomit. He cannot vomit because of the surgery, but there is obviously something awry. We have been keeping close tabs on him and have even backed down on how much we are feeding him, because if this does not resolve itself, we are moving to drip feedings. That is not the end of the world, just a move in the wrong direction and yet another piece of equipment we would need to haul around. Please pray with us that he is just having a little spell right now and soon will be feeling great and handling his feedings like a champ.

Here is a short video of Wes playing around while on his Boppy pillow. He really likes sucking on his hands, which I am told is a good thing.

Where to start...again

2009-10-04T13:15:00.003-04:00

Man, I am getting bad at updating the blog...sorry about that. It has been a mixed week. I will start with Wes. He has been home for a week now an things are really going well. It has been a lot of fun for Kate and I to "be parents" in the more traditional sense, meaning we get to do everything. Wes has a fairly busy schedule, I think, but he is the only baby I have ever had to take care of 24/7, so I am not sure. Probably the biggest difference between Wes and other, non-micro preemie babies are the breathing treatments. Every 6 hours he gets 2 nebulizer treatments and gets a third treatment twice a day. We also do what is called "Chest Physical Therapy' or CPT (we just call it tapping) where we use this little inverted rubber cup to "tap" his chest. The idea is that the cup traps air and as we tap, there is a percussion type action to loosen any extra fluid in his lungs so he can cough it up. We do the treatments at 11:00 and 5:00 (morning and night), and so far, Kate basically gets stuck doing the 11:00 A.M, 5:00 P.M. and 11:00 P.M. treatments, and I do the 5:00 A.M treatment. She is fine with this setup as long as she doesn't have to get up for an hour at 5:00 in the morning. Needless to say, it has been a bit of an adjustment for me!! So I have been trying to get to bed right around 10:30 or so, up at 4:30, then work, get home around 5:00, and then one of us goes up to see Max for the night and the other takes care of Wes. Notice there is not a lot of "sit down and update the blog" time in there!!

Wes does seem to be getting a little infection of sorts around his G-tube site. It has been pretty red, but that is to be expected considering he just had a hole punched through his abdominal wall into his stomach a week and a half ago. We noticed it was a little white around the actual opening, but the surgeon who performed the surgery is not too concerned. We have been putting Neosporin on the site for the last couple of days and it seems to be helping quite a bit.

Max has not had such a good week. His oxygen needs have been climbing dramatically and as of this afternoon, he was at 95%. The docs have run the gamut with Max trying to figure out what is going on; his blood gases have actually improved over the last number of days (last night was 7.43 and 43), his demeanor has been great (lots of smiles), and his blood work all looks very good. They did do a culture of the junk they suck out of his lungs (he cannot cough or clear his through as you and I would because of the trach tube), and that grew two different bacteria, both of which he has had before. They have him on antibiotics to kill those off again, and luckily the bacteria are not very resistant to the medication. The infection could be contributing to his increased oxygen needs, but I don't think anyone feels that is the main issue. The neo docs had a lung doctor come and examine Max on Friday. She suggested that Max be given a follow-up heart echo and that they start a steroid treatment. So he got a heart echo done on Friday afternoon which showed no discernible change in his pulmonary hypertension, and the doctor that dictated the report estimated that Max's pulmonary pressure was about 58%, compared to 66% that the last doctor suggested. That is obviously a change in the right direction, but these are just pictures and not exact measurements. The fact remains, pulmonary pressure higher than 50% is a very serious issue. Please pray with us that the plethora of treatments Max is enduring as I write this are exactly what God will use to heal our son. God has asked so much of our baby boy and he still has such a sweet attitude and approach on life. His nurse just tonight said that Max is without a doubt the first child in the history of her nursing career to give her a smile following "trach care." By definition, kids are supposed to loathe trach care (every night the trach site needs to be cleaned with soap and sterile water, a new sponge has to be put in place and the ties the hold the trach in place need to be changed) but Max seems to understand that it is important and waits patiently until it is finished. We just really want him to feel better. I am sure most of you have heard of the Mark Schultz song "He's My Son" (you can find the lyrics here: http://www.christianlyricsonline.com/artists/mark-schultz/hes-my-son.html).

I have always liked how powerful this song is, but I cannot say that I ever wanted to be able to sing it from the author's perspective. But here I am. My 6-month old son is on life support with two man-made holes in his body to help him eat and breathe. So can you hear me God? Are any of my prayers getting through to You? What more can you possibly ask of my little boy? I believe that You are mighty to save, that You alone have the power to drastically change my son's circumstances. You have done so before, and we need You now more than ever Lord. You see he's not just anyone. He is Maxwell James Wiersma. He's my son.

Since it has been so long, I will include a handful of pictures for your viewing pleasure.

Wes is home...again!!

2009-09-27T21:27:00.002-04:00

Wow, it has been a whirlwind week. First the surgery, then the recovery, then we found out early Saturday morning that they were sending us home. I was changing the oil in one of our cars and Kate called and said, "you might want to get in the shower...they are kicking us out of here in about an hour." That was at around 9:00 in the morning, we finally left the PICU (yes, they kept us in the PICU the whole time because the Peds floor filled up...yeah community shower room!!) at around 4:00 in the afternoon. I wish I could get away with those kind of "ballpark" estimates at my job. I could write a 1,000 page dissertation on why the neo unit is better than the peds unit at Spectrum Health, but it is one of those "if you don't have anything good to say" type of things. So I rushed up to the hospital, packed all of our stuff up, took as much stuff as I could to the car (via a really sweet Radio Flyer wagon), only to find out we weren't going anywhere for about 5 hours. To top it all off, the hospital does not have ESPN2, and on Saturday, that meant no Michigan football...just MSU football. Needless to say, that couple of hours was BORING!! Anyway, we finally left and went down to visit Max for a while. It was fun to have the two boys "together" again. I say "together" because now that Wes has left the NICU, he is as dirty as the rest of us, and therefore would need to where a gown and gloves. It is easier for one of us to stand outside "the line" and hold Wes while the other visits with Max. We tried to get them to look at each other, and I think they might have at one point, but Kate thought they were just both looking at the ever-so-popular rain forest mobile.

So, after a full day of having Wes home, things are going really well. He is on a good schedule and has been sleeping very well. When I "fed" him last night at 2:00, he never even acknowledged that I was there. That is one benefit to the G-tube: unsnap the sleeper (I think that is what they are called), plug the little tube thingy in, and away you go. I will try and post a picture of the whole operation soon, I know visuals are very useful.

Max has had an okay week. No big changes really. His blood gases have been pretty good, but his oxygen needs continue to be erratic. Not as wild as they have been in weeks past, but anywhere from 40 - 60%. His demeanor continues to be very good and he has started to smile quite a bit (at least for his Dad!!). The only treatment for Max right now is time. He needs to grow. It is possible that his lungs can grow and develop to the point where the pulmonary hypertension will not be such an issue. It is our prayer that this will happen very quickly.

The boys are 6-months old today. Half a year of this crazy life. 6-months of driving to GR, parking in Parking Lot 7, riding in the elevator that says, "Welcome to the Spectrum Health Medical Center. when you exit the elevator, turn left and proceed to the end of the elevator lobby. The Fred and Lena Meijer Heart Center is on your left, and the Butterworth Hospital and the Helen DeVos Children's Hospital is to your right. Please see the attendants at any of the Information Desks for directions." But now Wes is home, and we cannot wait until his big brother can come home too.

How many surgeries have we had now?

2009-09-22T18:07:00.002-04:00

Success!! Wes made it through the surgery well and seems to be recovering as they would expect. They were able to do the procedure laparoscopically, meaning they did not have to make a large incision to perform the Nissin procedure. The doctor did say that his liver was quite large, but that is often the case in young babies, particularly micro-preemies, and was not a real item of concern. In addition to that bit of great news, they were able to extubate him almost immediately after the surgery and he is currently just on low-flow nasal cannula like he usually is (although on a slightly higher flow of oxygen to make up for the shallow breaths he is taking while the anesthesia wears off). They did move us to the PICU, but nobody besides the anesthesiologist really knows why. From what we have heard, we should just be here overnight and hopefully back down to the regular Peds floor tomorrow. The plan is to start small feeds again tomorrow and start ramping them up as quickly as Wes can handle it. Hopefully the recovery will continue to go quickly and we can take our son home from the hospital again this weekend. thank-you to everyone who prayed for our little guy...these surgeries are not getting any easier as the boys get older. They used to sleep on the way to the OR, now they look at us knowing that something is wrong/different. That will snap your heart in two!! So we are praising God for taking such good care of our little boy, and at the same time asking if this can maybe be the last surgery? For a while anyway?

Surgery Update

2009-09-21T22:43:00.002-04:00

I just wanted to get a quick post on here to update everyone on the time of Wes surgery tomorrow. It will be at 12:30 P.M. and likely take about 2 hours if everything goes according to plan. One of our biggest concerns (other than the fact that he is going to have surgery and be put under general anesthesia) is that he will have to be intubated and put on a ventilator for the duration of the procedure. We are praying that God will give him the strength to quickly recover and begin breathing on his own. If he needs to remain on the ventilator after surgery, they will move us up toe the PICU again. That is not a huge deal, but we have enjoyed the Independence we have had in our private room versus the fish bowl rooms on the PICU floor. At the end of the day, this is all petty stuff compared to a successful surgery. They can put us in a smelly closet if it means that Wes' procedure went well.

Please join us in storming the Gates of Heaven with prayers for our son. It is no fun when surgery becomes "old hat" for your kids. Pray for the nurses and doctors in the OR and the nurses and doctors charged with Wes' care following the procedure. And Wes' parents too...if you have time. Wes, then the docs, then the nurses, then us. I will update as soon as I can following the procedure.

More of the same

2009-09-20T09:08:00.009-04:00

Wow, I cannot believe it has been a week since the last post. It has been a pretty quiet week for the most part. We found out that Wes is going to be having the Nissin G-tube surgery on Tuesday, but we won't know what time until Monday. In the meantime, Wes has been hanging out at the hospital waiting. He has had a good week. Kate was at the hospital from last week Sunday until Friday night when I kicked her out and told her she had to go home for the night. Even then, she didn't sleep well because she is so accustomed to waking up and dealing with Wes at all hours of the morning. At any rate, that is just WAY too long to be in a hospital if you are not a patient. Wes is certainly back to himself. He has quickly learned that if he so much as whimpers, Mom will pick him up and rock him and bounce him and pat him, etc. He has learned even more quickly that Dad will hold him when he is calm and can behave like a big boy. And watch football. Just kidding, that was my lame attempt to act like a "tough love" kind of dad. Wes was having a nice quiet weekend until last night when his feeding tube clogged. This tube goes up his nose, down his throat and through his stomach into his intestines. The tube goes into his intestines to prevent reflux. After trying every trick in the book to unblock the tube (these tricks include using Coke and meat tenderizer to try and break down any protein deposits that may have built up), the decision was made at about 1:30 this morning to give him an IV and give him some sugar water to keep him hydrated until surgery on Tuesday. After giving it some thought, I mentioned to the doctor that I would rather not forgo 48+ hours of good nutrition and said that Wes has been through so much that a little tube up his nose wouldn't bother him in the least. That would be fine down in the NICU, but in Pediatrics, they do things differently. If Wes was in the NICU and his feeding tube clogged, they would have pulled it out and put in a new one...call it 5-10 minutes worth of work. That is not how it works in Peds. After about 12-hours worth of effort trying to unclog Wes' feeding tube, they called down to radiology to see if there were any openings for Wes to be transported down there and put under the fluoroscopy machine (a real-time x-ray used to see where the feeding tube is going and to ensure that it is positioned correctly). Of course there wasn't...it is the weekend. So, right now, Wes has a feeding tube in his stomach again, not his intestines. This is somewhat risky. We don't know if he will begin to reflux and aspirate into his lungs or not. He is on a drip feeding compared to a gravity feed, so we hope that he won't have a lot of volume in his stomach at any given time. I have noticed already that he is coughing more, so I am really hoping that this is a coincidence and not him refluxing already. Tuesday cannot come quick enough. From what Kate and I have gathered from various nurses, if the surgery and recovery go well, Wes may be able to come home sometime next weekend.

Here is Wild Wild Wes enjoying a tubby. It takes about 10 minutes, but then he enjoys it. Kind of:

Max has had a fairly busy week. For those of you keeping track at home, Max's vent pressures are currently 26 over 11 versus 30 over 10. So up on the bottom pressure (PEEP), down on the top (PIP). His oxygen needs have stabilized a bit in the 40% range, mostly due to the vent change. Max did have a follow up heart echo on Friday too. That report showed essentially no change, which, if I was a "half-full" kind of guy, would see that as not getting any worse. The crappy part is that the cardiologist that read the echo said that he feels the pulmonary pressure is more like 66% of systemic, not 50% (refer to the last post for a description of the heart's pressures). This would indicate that Max's pulmonary hypertension is more severe than we thought. And there is nothing we can do about it. He is on the maximum dose of nitric oxide and the maximum dose of Viagra. Both of these drugs are designed to reduce the blood pressure in the lungs. So we wait. I do not know a lot about "severe" pulmonary hypertension, but I do know that phrases like "poor quality of life" and "shorter life expectancy" start popping up. The best thing for Max right now is to grow, and he has been doing that pretty well. He tipped the scales at 12 lbs 9 ounces last night. The down side is that his growth all seems to be happening in his cheeks and not his lungs. I was asking him earlier today if he thought the Broncos could beat the Browns this afternoon...he gave me an open mouth grin and they won 27-6. Coincidence? I will let you decide. I should add that it takes a tremendous amount of energy for him to smile, his cheeks are that big.

A happy camper:

Cuddling with Mom:

What a difference

2009-09-13T20:44:00.002-04:00

Wow. What a difference a week can make. I will start with Wesley tonight. On Friday morning, the docs decided to take Wes off CPAP...and boy was he happy!! He is back on nasal cannula and really enjoying sleeping without a full SCUBA apparatus on. He has improved a LOT on his oxygen needs as well. On the nasal cannula setup, they measure the amount of oxygen given in "liters of flow" versus a percentage. When they first moved Wes to cannula, he was at 5 liters of flow, and as of this morning, he was down to 0.10 liters of flow. He is like a whole new kid. Kate and I were just talking this morning about how we both think Wes feels better now than he ever has. He is not being too fussy, he can entertain himself in his crib, he is starting to smile a lot more, and really enjoys watching football with his Dad. They moved us out of the PICU on Saturday evening because Wes was doing so well and they were filling up pretty fast up there. So we were moved to a "regular" pediatrics room. This was fine by us because it means that we get a private bathroom with a shower!! As fun as it was to wear Aqua Socks while showering in the 3x5 foot community shower shared with about 75 other families in the PICU, it is an adjustment we are willing to make. Wes and I had a slumber party last night in our new room, and he slept like a champ. Granted, all the running around the hospital room during the Michigan football game likely tired him out. We are not sure what the plan for Wes is right now. The decision has been made to go ahead with the Nissin G-tube surgery (same permanent feeding tube surgery that Max had), but we do not have a clear message about when that might happen. One doc said that we should talk to the surgeons on Monday and get it scheduled, another indicated they may want to wait as many as 3-weeks to make sure he is fully recovered from the respiratory bug. So we have no idea if he will be discharged in the near future or stay a patient until after he has the surgery. Hopefully we will know more tomorrow.

Max had a good weekend as well. His oxygen needs continue to bounce all over the place for no apparent reason, however. He did stabilize in the high 40 to low 50% range for the better part of the weekend, but had another episode last night where the nurses had to bump him up to the 80% range. The really crazy part is that he slept through the whole episode. After a couple of hours, the nurses were able to wean him back down to 50% or so. The biggest fear for Max right now is pulmonary hypertension (PH). As we all know, the right side of the heart pumps blood to the lungs to handle the oxygenation of the blood stream while the left side of the heart pumps blood to the organs and extremities. A healthy heart has a pulmonary blood pressure that is about 5-10% of the body's systemic blood pressure (the BP reading we are all familiar with, ideally 120 over 80). Max had a heart echo on Friday (kind of a surprise to us) and the cardiologist that read the echo guessed that Max's pulmonary BP is about 50% of systemic, which would be considered a moderate case of PH. I spoke with Dr. Doctor at length last night about it, and he said that he had another cardiologist look at the echo and that doctor said that there was not a lot of evidence of PH. So we are in a bit of a holding pattern. The only real way to tell what Max's pulmonary BP is would be to put him through a procedure where they thread two wires from his groin all the way to the heart to measure the pressures. Dr. Doctor said that he would rather not put Max through that because they would likely not change anything based on the findings. Max's gases continue to be nothing short of phenomenal, but the docs have been hesitant to adjust his vent settings because of the volatility of his oxygen needs. Please pray with us that God will continue to touch Max's lungs and provide healing. He has performed miracles in Max's lungs before, and we want to ask for another.

Not only did the boys both have good, stable weekends...but football is finally here!! Not only did MSU lose, U of M came out on top of easily one of the best football games I have ever seen (and I got to watch it with Wes...who REALLY likes the TV), but I also got to go watch the Denver Broncos game, and they came out on top on a last second fluke play. On top of all of that, the Quest for the Cure race was this weekend, and we had an absolute blast. A huge thank-you to everyone who came out and participated, and to Rob and Tiece and Jason for giving of your time to put everything together. Kate and I look forward to showing Max and Wes pictures of the event and hopefully participating on the other side of the race next year. Gratitude is a hard thing to convey in words, and it has become increasingly difficult as God has continued to bless our family through so many of you. To say "thank-you" seems so meaningless. The reality is that your faithful prayers have been the difference. You have stormed the gates of Heaven on my sons' behalf and your prayers have been answered on so many occasions. The more tangible gifts, ranging from meals and lawn mowings to monetary gifts and gas cards, have alleviated an enormous source of stress in our lives right now, and allowed us to focus on being the best parents we can be to our boys. Thank-you is just not enough.

Hanging in there

2009-09-09T21:21:00.004-04:00

The boys are both doing about the same. Max has had some more up and downs than Wes has, but mostly from an oxygen perspective. He was as high as 80% a few nights ago, but after some dips down into the low 30s, he has settled right around 50%. This is still higher than his post-op baseline of about 40%, but they have made a number of changes to his ventilator, so it is hard to really compare. they have not changed any of the pressures on his vent, which are the numbers I typically reference on here, the changes have been to the way the vent works with his breathing. I did not understand hardly any of what the doctors and respiratory therapists had decided to do...but thanks nurse Mandy for trying to explain it to me!! We had a nice 15 minute conversation that basically ended with me saying "in English please." I don't want to toot my own horn, but I have become pretty familiar with this particular vent, and I have no idea what the changes they made are actually going to do. We were concerned that Max might be getting sick as well, and that was causing his O2 needs to jump. We are starting to feel like that might not be the case. He is cool as a cucumber as always...but if he is uncomfortable, his frowny face will break your heart. The corners of his lips can actually touch his jaw line...it is quite remarkable. Anyways, he never seemed to be feeling ill, but he was requiring a lot of "suctioning"(the trach keeps Max from being able to really move any "stuff" out of his lungs via coughing, so it needs to be suctioned out periodically so it does not plug up the vent tube). That seems to have decreased as well, so we are hopeful that God has once again answered our prayers and spared Max from getting sick. He has been through a lot in the last few weeks, and we just really pray that God will continue to be very near to him and keep him company with Wes gone...although Wes is not too far away.

Here is a recent picture of Max. Kate and I have been trying tirelessly to get him to smile. I think it is hard for him because his cheeks are so big and it requires so much energy to lift them. That is another way of saying he usually just gives us this look and we have not been too successful just yet.

Wes is still doing about the same as he was on Monday, at least from a clinical perspective. His is still on a CPAP of 6 and his oxygen remains right around 45-50%. His attitude is quite a bit better though. He has gone from being inconsolable and clearly in a lot of pain to being much more himself. Kate has even been able to get a number of ear to ear smiles out of him...not bad for a kid with two giant prongs shoved up his nose, a head band that he hates, a feeding tube that goes up his nose, down his throat, through his stomach and into his intestines, and a monster IV in his foot with basically a cast on to protect it. We were not able to catch any of his smiles on film, but we did get this picture which shows the contrast between how he looks/feels about his Mom and how he looks/feels about me. He definitely recognizes me, but it doesn't always bring a smile to his face. It is more of a "I have got my eye on you mister" type of look.

Kate was able to get this cool video of Wes watching his Fisher Price Rain Forest mobile. He is in love with this thing. He had one just like it in the NICU, and Grandma and Grandpa Wiersma though he should probably have the same one at home. So Grandma search high and low and finally found it. Okay, maybe it wasn't so hard to find, but whatever...Wes loves it. It was still in the box when I took it up to Wes' room, and the PICU was nice enough to provide the batteries. I asked the nurse if there was any chance they had a phillips head screwdriver because I had left my tool chest at home. She thought they might (for changing batteries on mobiles and such) and came back with a flat head screwdriver that was as big as a paint scraper. Thanks!!! So I did what any dad would do for his son: I assembled it with a pair of scissors. Only one band aid too!! As you can see from the video below, it was well worth it!!

Realization

2009-09-07T09:13:00.002-04:00

This has not been a good weekend. At 2:00 A.M. on Saturday morning Kate and I woke up to about 5 people with flashlights in Wes room who informed us that the decision was made to move Wes up to the Pediatrics Intensive Care Unit (PICU). This was done because his oxygen needs had continued to increase. When Wes came home from the hopstial on Tuesday, hes was on 0.12 liters of flow, which is roughly 21.5% oxygen (room air is 21%). He was up to 3 liters of flow on Friday night, which equates to roughly 32% oxygen. They moved him up to PICU and tried what is called high-flow nasal cannula at 5-liters of flow. That still was not enough, so Wesley was put back on CPAP. Saturday was easily the worst day of my short parenting career. Wes was just inconsolable, and that is not his normal demeanor. His is "spirited," but there is always something that is causing him discomfort, i.e. he lost his pacifier, he has a dirty diaper, etc. There was nothing that I could do to calm him. He would cry so hard he would make himself gag and cough then start crying again. At one point on Saturday, Wes was on a CPAP of 6 (CPAP pressures range from 5 to 10, 10 being the highest) and requiring 90% oxygen. There was frequent talk of him needing to be reintubated and put on a ventilator. They gave him a dose of Valium on Saturday to try and sedate him and calm him, and it worked too well. Once the drug took effect, he fell into such a deep sleep that he was hardly remembering to breathe anymore so there was 4-5 nurses and docs in the room pinching him and stimulating him into breathing.

The current diagnosis is that Wes has an upper respiratory virus. He was tested for the "known" respiratory viruses but has none of those. Later in the day on Saturday Wes was at 60% oxygen and he would be calm as long as the Valium was still working, when it wore off, inconsolable rage would ensue. The docs decided to give him a dose of Lasiks, which is a fast acting diuretic designed to rid the body of any excess water weight, hopefully including any excess fluids in the lungs. He is also on a course of steroids to help reduce the inflammation in his airway. This combination of treatments along with increased breathing treatments have helped to reduce his oxygen requirements to about 45%, but he remains at a CPAP of 6. He is still very uncomfortable, I am sure because of the tightness in his chest and the discomfort of the CPAP.

Max did not have a very good weekend either. His blood gases continue to look very good, but his oxygen requirements have been very high. His baseline following the trach surgery was about 40-45%. On Friday that number was as high as 70%, and last night he was up to 80% at times. He does not seem to be sick according to both his attitude and his blood work. The docs turned up his Nitric Oxide from 10 parts per million to the maximum dosage of 20 ppm. This seems to have had a little bit of a positive affect and his O2 needs are currently in the mid-high 60s. He had been doing very well this whole week, and was a real trooper with his brother going home and only seeing Kate or I for a few hours a day.

Around the NICU, the experience of having a child in the unit is often likened to a roller coaster. My thought it that if your NICU experience is like a roller coaster, praise God. Roller coasters are typically over very quickly. Our journey has been much more like climbing the stairs of a 100-story high rise. Progress is slow and painful and in a moments notice something can flip you over the rail and you will find yourself once again on the ground floor looking up at the task ahead.

This weekend has led to two realizations for me. The first is how fragile these kids are. Wes caught an upper respiratory virus. It could have come from Kate or I, a gentlemen we passed on the way to the car on Tuesday night, etc. I know now what it will take to protect these boys from getting sick, and it looks a lot like living in a bubble. If you are not these kids' grandparents, you will likely not meet them for quite a long time. We want nothing more than to show them off, but we simply cannot risk that. They have 9-cousins who have seen only the boys' pictures, yet have been some of Max and Wes' biggest prayer warriors, and even when the boys come home, they will not be able to meet. When an upper respiratory virus that would give you or I some tightness in our chest and a bit of discomfort lands Wes in the PICU on life support, we have no choice but to take every possible precaution. This was not RSV or the flu, either of those would almost certainly have been much worse.

The second realization I have come to is just how sick these two boys are. That may sound strange, and I know they have been in intensive care for the last 5-months, but it took Wes' trip to the PICU to really drive it home for me. Wes currently resides in the room nearest the nurses' station on the critical care floor of the children's hospital. We have seen a number of kids whose injuries or illness have required them to be brought to the hospital via AeroMed helicopter get wheeled past Wes' room. One of the respiratory therapists said on Sunday that he is happy to see Wes' O2 needs come down because he was "really really worried about this little guy." This is just more evidence of how fiercely we will have to protect these kids once they are home. And also how thankful we need to be that God has allowed us another day with our precious boys.

That didn't take long

2009-09-04T16:10:00.003-04:00

I intend for this to be a short post. At 11:00 last night Kate and I took Wes to the ER at Spectrum. His breathing was very labored, his oxygen needs had increased, he had not slept for about 24-hours (neither had Kate) and he was coughing a lot. They admitted us to the pediatrics unit (the NICU is a one-way exit, no babies come back through the front door as a patient) and that is were Wes remains. There are a number of theories flying around, but it is clear that his chronic lung disease has flared up for whatever reason, hence the labored breathing, coughing and increased O2 needs. We are not sure where things are heading right now, but it is pretty clear that he will be getting the same G-tube surgery that Max recently had where they wrap the top opening of the stomach to prevent reflux and install a port directly into his stomach. This is simply a much safer way to feed him for the near term to protect his airway/lungs from reflux. Wes was also "scoped by and ENT doctor who looked at his voice box because Wes makes very little noise. Wes does have a paralyzed vocal chord. We do not know if this is permanent or not, but the chord is not moving at all. This can also be an issue for his lungs because the vocal chords come together to protect the airway when swallowing, drinking, etc., so that is why the G-tube is almost a certainty. They just moved his feeding tube from his stomach into his intestines (Max had the same thing for a long time prior to his G-tube surgery), and they are giving him his second breathing treatment in 3-hours (he usually gets his treatments every 6-hours). His oxygen needs are currently more than 5-times what they were when we took him home.

I am going to end this post now. Kate and I are really hurting. We are mad, angry, scared, frustrated, wondering why we were allowed so little time to celebrate Wes being home before being thrown into the fire for the umpteenth time. 5-months of this crap is enough...don't you think, God?

Wes is Home!!

2009-09-02T15:25:00.009-04:00

After 158 days in the NICU, Wesley Mychael came home with his Mom and Dad last night. It was a very surreal event. It is something that Kate and I have been looking forward to and dreaming about for so long that it didn't feel like it was actually happening. Wes was discharged at around 4:00 in the afternoon, but we hung around until about 9:00 with Max and some special nurses who have been taking care of Wes since literally the night he was born. It was a special night. We both held Max for a while and he was such a sweetheart. He would just gaze into our eyes and hold our fingers...that didn't make things easier!! We sang Sanctuary with him and prayed with him, and just both burst into tears. We kind of felt like we were taking his little buddy away. When Kate and I couldn't be there or the boys had a new nurse, at least they had each other. A co-worker of mine said that maybe Max will like it better because he can have the nurses all to himself. He is quite the ladies man, so I won't put it past him.

Many of the nurses warned that the trip home and the first couple of days following could be very overstimulating for Wes. He is very aware of what is going on around him, and to be transported from the only place he has ever known to this new, quiet, dark place can be a lot to process. As you can see from the video and picture below, it has been a very difficult transition for him:

Did you catch my sarcasm? He slept the whole way home and the better part of the night. He is on an every three hours schedule with feedings, skipping 2:00 A.M., and he gets breathing treatments via a nebulizer every six hours. So at 11:00 P.M. he gets "nebulized" and then fed, which takes about 45-minutes altogether (the home nebulizer is not quite as nice as what the hospital has), and then that whole process repeats itself at 5:00 in the morning. He got a fresh diaper at 2:00 A.M. and fell right back to sleep. I am not sure if Kate slept or not. It seems like every time I would roll over, I would find her standing over the Pack-n-Play (where he is currently sleeping since he makes very little noise). I think I would feel the same way if he was disconnected from the world, but since he is attached to a monitor that lights off fireworks if he hiccups, I felt comfortable enough to get a couple of hours sleep.

Wes is taking a little nap right now and Kate is on her way up to the hospital to hang out with Max. You know what that means? Guy's night at the Wiersma's!! Not exactly, but it will be interesting to facilitate all of the meds, nebulizer and food all by my lonesome. I used to have nurses that would do all of the boring stuff while I did crosswords puzzles and waited for him to be ready to play. I am kidding, sort of, but it does make me feel a little more like a dad than I did before. Kate made the same comment (replacing "dad" with "mom" of course) this morning. She mentioned that he is finally our responsibility...not the responsibility of the Neonatal Intensive Care Unit at the Helen DeVos Children's Hospital. She didn't really say the whole name of the hospital, I was just trying to draw out the sentence a bit.

Kate and I would like nothing more than to show Wes off the the whole world!! But, that is not in the best interest of Wes right now. His immune system is understandably weaker than most babies and he is incredibly sensitive to any respiratory illness. The sniffles for one child could mean the hospital for Wes. So as much as we want everyone to meet one of our little miracles, we have to protect their health first. We do not want to discourage people from visiting, but we are going to give Wes and ourselves at least a week to get accustomed to living with each other here at our home. The following list is a general guideline that was given to us by the hospital. They indicated that this list should stay in effect for Wes certainly until the weather starts warming up again in the spring...of 2011.

1) NO SICK PEOPLE (this is a biggie)

2) No kids under the age of 16

3) No smokers

4) Hands must be washed and then sanitized

5) Visits must be kept short so that Wes does not get overstimulated

Max had a good night as well!! His blood gases have been really good over the last few nights (7.37 and 47 last night), which is exactly what we wanted to see. This indicates that he is healing from the surgery and his body is getting used to a new way to breathe and a new way to eat. He never ended up getting a heart echo on Monday. The doctors decided that they would rather wean him back down on the the Nitric Oxide (INO) before they do the echo. The INO is a form of treatment for pulmonary hypertension (the condition they are looking for with the heart echo), but he is also getting a blood pressure medication orally that will hopefully accomplish the same thing the INO does, and it is much easier for Max to come home with a prescription than a giant machine...we have enough of those around the house already (I can actually hear our electric meter spinning...it is weird). The blood pressure medication that he is on is known through out the world as...Viagra. That is right, Viagra was originally developed as a blood pressure medication that had little effect on big people, but had other "marketable" side effects (those side effects do not apply to micro-preemies, in case you were wondering). The same is true of Rogaine, it was originally developed as a blood pressure medication. I am not making this stuff up. Back to Max, they have been reducing his dosage of INO while increasing his dosage of Viagra. He is currently at 10 parts per million on the INO and his oxygen needs have stayed right in the 40-45% range. We are hopeful that we can get back off the INO for the fifth time, I think, and that the Viagra will keep his hypertension at bay.

One last comment to wrap up the Wiersma Family Fund discussion. We now have a PayPal account setup that is tied to the fund account. The email address on the PayPal account is "maxandwes@gmail.com."

And now for some pictures of Wes' last day in the NICU!!

Max and I having a little chat about Wes coming home

Wes saying "bye for now" to nurse Cathy (note the "See You Later Alligator" outfit)

I included this picture for nurse Cathy's sake

The last family photo for a while. Mom and Dad are happy, Wes is furious and Max is indifferent...very representative of the "dynamic" of the Mark and Kate Wiersma family

Checking out the new digs

Crazy times...again

2009-08-30T20:54:00.004-04:00

This has been a crazy week. Between Max's surgeries and Wesley getting ready to come home, it is an understatement to say we are overwhelmed.

We are elated to announce that we will be taking Wesley home on Tuesday evening!!!! Mark and I are so excited to get that little guy home. However the excitement is bittersweet. It is going to be extremely hard to leave Max at the Hospital for a minimum of two more months. We are struggling with the fact that we won't be able to visit him as much as we want and whenever we want.

Please pray for Max he still has a lot to overcome before he gets to come home. He is such an amazing little boy. He has gone through more in his five months of life than most of us go through our entire lives. His trach has allowed his personality to finally shine. He is most definitely more laid back than his brother. He has the most precious facial expressions. His beautiful dark brown eyes just sparkle when he gets excited.

His oxygen needs have gone up over the last couple of days even with the INO, currently he is in the 50% range. Also, the ventilator settings increased as well (currently 32 over 10), but we recognize this is partly to treat the hypertension in his heart. Tomorrow(Monday) he has a heart echo to see if his pulmonary hypertension is getting worse. We are very nervous for the results. It will give us a better idea how long and just how sick Max's heart really is. We are praying that we got the trach in time and haven't caused more damage to his little heart.

Blown Away

2009-08-26T20:22:00.002-04:00

Today has been a good day. Max seems to be feeling much better, and the nurses and docs seem to have found his happy place from a pain control perspective. Kate said he was awake for a couple of hours, just calm and looking around. He was even trying to play with his toys with his arm that is taped to a foam board because of his IV...it kind of looked like he was flapping his wings instead though. But, with the amount of pain meds and other sedation drugs he has had in the last 36-hours, it is very impressive that he can focus on anything!! From a medical perspective, his incisions and new man-made orifices seem to be healing well. His blood gases have looked pretty good as well, his CO2 has been running in the mid 50s. His oxygen needs have been right at 40%, so the INO has certainly helped with that. The docs have decided to start weaning down the INO already. The dosage is measured in parts per million (ppm), and Max started out yesterday at 20 ppm. The plan is to turn the dose down by 5 ppm every 8-hours assuming he tolerates the changes well. They made the first move from 20 ppm to 15 ppm at 3:00 this afternoon and the change did not even register as a blip on the screen!! We are praying for continued changes in the right direction over the next 24-hours. Max also started to get fed through his new G-tube this afternoon and seems to be doing well. They started him at half of his normal feed and they will slowly increase his feedings and decrease the IV fluids until he gets back to full feeds and then the IV can come out...Max would REALLY appreciate that!!

Kate and I had our first of many meetings and training sessions before Wes comes home, hopefully next week Monday or Tuesday. Tonight was learning Wes' home monitor. Since he is coming home on oxygen, his O2 saturation needs to be monitored 24-hours a day. This is done by a little apparatus called a pulse sock that is worn on the foot. As long as Wes' saturation is higher than 85%, Kate and I sleep well. If it drops lower than that...the alarm goes off. I can only describe the alarm as a mean alarm. It is meant to do just one thing...alarm you. Wes' has been very stable over the last number of weeks, so we are hoping for a few alarm free days here and there. We also had to learn about the oxygen tanks and regulators, as well as the nebulizer machine for his breathing treatments that he gets 4 times a day. Wes is not going to be getting out of the house much for a while, but we do have a number of doctors appointments and therapy sessions in the near future. So Wes will come with a car seat, all of the diaper changing stuff, a spare feeding tube in case he pulls his out, his O2 monitor, an O2 tank, and the nebulizer machine depending on when the appointment is. And that does not hold a candle to the hardware Max will be toting. In fact, most kids with trachs get custom built strollers called "kid carts" that is specifically designed and built for Max and includes a spot for everything necessary to get him from one place to the next.

I titled this post "Blown Away" because that has been my overwhelming feeling today. Yesterday was one of the longest days I have had in a while, maybe since Kate was in labor more than 5-months ago. Today was a lot different than that. I was hoping to get into work early this morning so I could catch up on some things. The storm last night knocked out our power for a few hours, so instead of the alarm going off at 6:00, I woke up at 7:48. Whoops!! But the extra sleep was nice. I was talking to one of my buddies this morning on the phone about Max's surgery and Wes coming home. He mentioned that it would be a good idea for Kate and I to get a date night in before that happens. I told him that it is Kate's birthday tomorrow (Thursday) and we had plans to go to San Chez in Grand Rapids after we spend some time with the boys. About 2-hours later a co-worker of mine drops off an envelope on my desk containing a gift card to San Chez. A few minutes later I got an email from a high-school classmate saying that we should expect to see a check in the mail. We recently had out 10-year high school reunion (man...we are getting old!!), and Kate and I could not attend given the situation with Max and Wes. Apparently, a number that did attend made donations for Kate and I. Later in the afternoon, another one of my friends called and said he made a few phone calls and we should expect to see a handful of gas cards show up in the mail some time soon. Kate and I do not know how to react to all of this. To say thank-you is just not enough. God has asked a lot of us, but He has provided much in return. We have learned so much about what it means to be a Christian and what is means to empathize with others. Kate and I have commented to each other on a number of occasions that we cannot wait until we have the opportunity to pay some of this "forward."

Along those same lines, I need to mention a few other things. I struggle with how best to present this information, because Kate and I truly believe that God has and will provide for our needs. Some dear friends of ours have organized a 5K race/fundraiser for Max and Wes. They asked me to mention it on the blog because they felt like a lot of people want to know how they can help. I struggled with how to bring it up and how to make mention of it, and then a lot of stuff was happening with the boys and I was not able to get the info on here sooner. At any rate, they have a website where you can find all the details, and the link is below:

http://www.quest4cure.org

They organized a race for a gentlemen last year who had essentially an unknown ailment in which he incurred significant medical expenses. Please know that we have very good health insurance through my employer and that medical expenses have not been a hardship for us. Our friends Rob and Tiece Dykema, (you will see their names on the website), said they wanted to do the race again and have if be for the benefit of Max and Wes. This led to a lot of contemplation on my part. I never in a million years thought I would be in a place where I had to be a steward of not only my own money, but also of gifts given to us because of a difficult situation we are going through. Sounds like a good problem, but it is one that has weighed heavily on my heart. I looked into setting up an organization where donations could be tax deductible, but it turns out that the federal government doesn't hand those out very easily. So this is what we did (I say "we" because I had a lot of help and a lot of advice): We have set up an account at a bank (not Macatawa Bank, because I work there) called the Wiersma Family Fund. Neither Kate nor myself has access to this account. The fund is managed by three people of our choosing that all had to meet one criteria: they have to have the best interest of Max and Wes at the forefront of any and all decisions. I will keep two of their names confidential, but I will say that one of them is my Dad. My Dad has been in the "fund management" field (to put it very simply) for longer than I have been alive. I mention his name because his office address is where we would request any financial help be sent. That address is:

Wiersma Family Fund

85 East 8th St., Suite 150

Holland, MI 49423

This money will then go into the account and be disbursed to Kate and I as needed. It is Kate and my desire that these gifts be for the benefit of Max and Wes and not Kate and Mark. The committee will ensure that the funds are use appropriately. This will also be an anonymous donation with only the committee members knowing the origin of the funds. This has become an important feature for Kate and I as it allows us to focus on where and from whom these gifts are really coming from: God. For those of you that are technologically inclined, we will also be setting up a Pay Pal account tied to the bank account, I will get those details on the blog when they become available.

As always, please do not interpret this topic as a plea for money. We trust that God will provide for our needs as we focus on the needs of Max and Wes. This is such a difficult topic for me to discuss openly because I feel very unworthy.

For those of you that may have sent checks over the last number of months, I apologize for not depositing them. I was really having a hard time with how to best deal with the funds and make sure they are used appropriately and thought it best to get some outside parties involved. And even after we decided how to handle it, it took quite some time to get the account set up. The bank was convinced that this fund was really just a cover for a terrorist organization led by the mysterious Max and Wes Wiersma. We very literally have a document signed by Kate, myself and the three committee members that was drafted by a lawyer detailing how the committee will work and the funds will be used. Banks these days, I tell you what.

Extreme Makeover

2009-08-25T20:33:00.003-04:00

Max's surgeries went as well as can be expected. The procedures took about 3-hours. Max did not have a great night last night, however. He got his IV put in late last night, and a blood gas was drawn from it shortly thereafter. It was one of the worst gases Max has had in months; 7.37 and 79. So the decision was made to intubate Max and put him on the ventilator this morning before his surgery. He would have had to be intubated for surgery this morning regardless, but because of the bad blood gas they decided to do it a little earlier. He is still on the ventilator as I am writing this. We expected that to a certain extent, and his gases have been a lot better post-op than they were early this morning. Right now his vent settings are 28 over 8, which are about as high as they were back before Max's hernia surgery and the miraculous move off of the vent to CPAP. That is kind of a bummer for us, but, as I said, his gases have been looking better. We knew going in that the docs planned to leave him on the ventilator for a while and get his gases looking more "normal." The other bummer is that Max's oxygen needs climbed to nearly 70% a few hours after he got back to the NICU nursery, so the decision was made to put Max back on the Inhaled Nitric Oxide (INO). Those of you who have been along on this ride with us will recall this substance. Max has been on and off of it 3-times. It helps dilate the capillaries in the lungs and aids the transmission of oxygen into the blood stream. It seems to be working, his oxygen needs are in the low 50s right now, but we cannot help but feel like it was a step back.

It has been a long day. We were at the hospital from 6:30 AM to 7:00 PM. Most people that do that get paid handsomely for their time. It was not a burden to spend time with the boys, but Max was not himself and that is hard for us to see. He is like a different boy now. He breathes through a hole in his neck and gets fed through a hole in his stomach. We likely won't hear his cry again for some time either. That was one thing we really liked in a strange way because his brother makes hardly any noise and cannot really cry. It has just been an emotionally and physically draining day for us.

Here is a picture of the "upgrades" that Max got today. The trach is quite obvious. Max is a chunky boy and he is also quite puffy right now (because of the all the IV fluids), so the actual port and collar are not visible. The other big thing is the port in his stomach. It has some gauze around it right now because it is fresh, but that will go away when it heals up. The feeding tube will be connected to this port and his feeding with be pushed into his stomach. He has at least 4 other incisions from the Nissin procedure as well. This kid hardly has a square inch of skin without some sort of scar on it.

Big Day for Max...and Wes?

2009-08-24T21:04:00.004-04:00

Well, nothing ended up happening today. But we did find out that everything is going to be happening tomorrow. We found out at about 5:00 this evening that Max will be going down to the OR at 7:30 tomorrow morning, and he will be having really 3 and a half surgeries. The first will be what they call a "nissin." This is a procedure in which they wrap the opening at the top of the stomach, I think with part of the muscle around the esophagus (but I could be way off, I am recalling that info from about a 2-months ago) to prevent any reflux. Surgery #2 with be the G-tube in which they install a port directly into Max's stomach for feeding purposes. Surgery # 1/2 will be a circumcision...might as well just shock every system in the kids body while we are at it. And surgery #3 1/2 will be the trach. I think that is the order they go in, but I am not exactly sure. What I know is that when he gets wheeled into the surgical room where we cannot follow, the next time we see him he will have a lot of new hardware, but likely nothing on his face!! It has been 5-months and we have yet to see a completely unobstructed view of Max's face without tubes, hoses and tape. This is me looking for the bright side. All of our "primary" nurses has been great through this whole process: supporting us when we wanted to give Max a shot and the docs didn't, and also telling us when it was time to move ahead with the trach knowing how we felt about it. Their experience and the great relationships we have built with them over the last 5-months have been paramount in Kate and I finding some peace about this whole situation with Maxwell. So a huge THANK-YOU to Nurses Ashley, Becky, Cathy, Emily, Jessica, and Sara (I put your names in alphabetical order on purpose), and, although not our primary nurses, Amy, Anne and Monica (they have been there when we needed them to be)...we love you all. You have been through the trenches with us, supported us, fought for the boys when we couldn't be there and left an indelible mark on Max and Wes, Kate and myself. Now here we are, the night before the trach surgery. This has been in the making for 2-months. Trach surgeries usually don't get contemplated as much as Max's has. 9 out of 10 trach surgeries are because the patient has a bad airway and access to the lungs is constricted, and a lot of times are done almost on an emergency basis. Max is the 1 out of 10 where his airway is fine but his lungs are chronically sick. Kate and I have tormented about this for a long time. We did not want this for Max, but it is obvious to us that this is the right thing for him now.

He wanted us to know he is ready to rock and roll tomorrow:

And now for something completely different. Kate got a call from Dr. Dustin this morning and he said...and I quote, "I think Wes can go home on Friday." When Kate called me, I couldn't speak. It is every emotion you can possibly imagine all at the same time. The thought of him actually being here in our house seems like a cruel joke. I have been looking at their empty cribs every day for a long, long time. With everything going on with Max this week, we are actually going to push him coming home until Monday I think. That probably sounds ludicrous, but we have to do the following before he comes home:

1) Take the "Going Home" class

2) Get certified in CPR

3) Take the car seat class (you know, 90% of all car seats are installed incorrectly)

4) Learn how to thread Wes' feeding tube up his nose and into his stomach, testing to ensure proper positioning

5) Being trained on Wes' respiratory treatments, which are done 4-times a day (one of those times is at 2:00 in the morning...sorry Kate!!!)

6) getting set up with an Occupational Therapist who will work with Wes on bottle feedings

So, that is a lot of stuff to do before Friday with Max having major surgery tomorrow. Hope that all makes sense.

At the end of the day, the reality is that these kids will leave the hospital some time. A few times I didn't think that would ever happen. I am going to miss being a parking garage and hospital snob. I will not miss the cafeteria for one second. Unless they have chocolate covered raspberry ice cream. That is the only redeeming thing about the cafeteria. And Sour Watermelons. I guess we will have a number of weeks visiting Max yet to enjoy a lot of those things.

I am going off on a tangent. We cover your prayers for Max tomorrow. Or right now. Tomorrow is a really big day, a lot of invasive surgeries, a lot of room for error. Pray for the doctors, pray for the nurses, and pray for Kate and I. We will be at the hospital at 6:00 or so tomorrow morning following a poor night of sleep I am sure. But focus your prayers on a successful procedure, and a lighting quick recovery. We cannot move Max around too much or hold him for a few days, so we hope that those days will pass quickly. Thank-you to all of the faithful prayer warriors who have been with us through this journey. A journey that started on March 9. A journey that is taking a turn, but will not be ending in the near term. Thank-you for your support. Your prayers have sustained us.

Here We Go Again...Again

2009-08-23T20:25:00.002-04:00

Once again, it has been a long time since we posted an update. Although this is the second one in the same day...does that count for anything? No? Fine.

As Kate alluded to, it has been a long week. You faithful followers will no doubt recall a number of weeks ago when the docs were really pushing us to do a tracheostomy for Max. That was when he was still on the ventilator and no one thought we would be where we are today. Kate and I were under the impression that the trach talk was purely so that Max could come home (kids can come home even on a ventilator if it is by way of a trach). After Max's miraculous improvement on the vent and subsequent move to the CPAP, the talk kind of died down. Over the last week, Max has had a series of poor gases. His CO2 was in the high 60s for three days in a row. High 60s used to be great news back when Max was preterm and on the jet ventilator, but the standards have changed now that he is 6-weeks post term and growing like a bean sprout. The indication from the poor gases is that Max is being under-ventilated. In order for him to be properly ventilated, it means a move back to the ventilator, it looks like CPAP just isn't doing enough. As Kate mentioned, there also seems to be some stress to Max's heart. As we all know, the right side of the heart is designed to pump blood to the lungs for oxygenation, and the left side handles the movement of blood to the rest of the body. As such, the blood pressure on the right side of the heart is much less than the pressure created by the left side, which is the systemic blood pressure (what the doctors measure with that air bag thing around your arm). When someones lungs are as sick as Max's, it is not uncommon for the arteries to be constricted, or the lungs to have any host of other ailments that might make the flow of blood to the lungs difficult. As we all remember from 5th grade gym class, the more a muscle works, the larger it gets. This is great if you are talking about Lou Ferrigno's biceps, but the right side of the heart is not meant to be very muscular. Long story short, Max has what is called Pulmonary Hypertension of PH (not to be confused with pH, which is the acidity of the blood). If not treated in an expedient manner, this could be a very serious issue. So when Kate and I first heard this, the decision to move ahead with the trach was an easy one. One may ask why not just put Max back on the vent? The evidence would suggest that this will be a chronic issue for Max and likely require proper ventilation for many months/years to come to prevent issues down the road. That is what we want. We want whatever is best for Max. The reality of the trach just plain sucks, but it is time to do what Max needs and not what we want. I think the hardest thing for Kate and I is that we just want things to be "normal" for once. We just want the boys home. The trach will push back any sense of normalcy by about two years. This has been a long journey. The boys will be 5-months old this week. Our kids have lived in a concrete walled nursery for almost 150-days. They have never seen the sun, never been outside, never "seen" the dark, never "heard" quiet. On the other hand, we feel so incredibly blessed that we get to go see and hold and play with Max and Wes everyday. The thought of a trach just draws our minds to thinking about the future, and that is a very dangerous thing. We start thinking about the nurses who will be in our house 12-hours a day, having to buy a new vehicle, not being able to go anywhere and show the boys off for likely a year or more. We know this is all part of God's plan. The difficult thing is that Kate and I both felt that God has rewarded our faith in Him when we asked the doctors to wait on the trach surgery 6-weeks ago. He worked a miracle in Max's lungs, and now it seems like a loss. Had we done the trach then, Max could be home right now, his heart could be in better shape than it is and he could be more comfortable. God's plan has not always been evident through this journey, but it seems like His timing has been an easier thing to decipher. Until now. We prayed for a clear direction on the trach issue, and I guess we got one when Max's heart started showing signs of stress. It is just hard when God answered the very same prayer in a completely different way 6-weeks ago.

Max is also going to be having surgery to have a feeding tube permanently placed in his stomach. It is called a G-tube. G-tubes and trach almost always go hand in hand because a child with a trach does not need any risk of aspirating something from their stomach into their lungs. So the G-tube provides a port to feed Max safely. We will still try to teach him how to take a bottle, but the likelihood of him taking a 70ml bottle after a few months of his food bypassing his stomach altogether is not very good.

From what we have heard, Max will have his G-tube surgery on Tuesday and we don't know when the trach will happen, but it will be this week. We had heard it might be tomorrow, but the G-tube surgeon said he would rather not do the surgery right after a trach procedure. So who knows. We will keep everyone updated as soon as we hear anything, which will probably be about 5-minutes before they take Max to the operating room.

Trach for Max

2009-08-23T13:55:00.006-04:00

This week has been challenging for Mark and I. Thursday we came to the decision that Max will need a trach. We had thought that we would avoid it and just spend a couple more weeks in the NICU letting his lungs develop, however we recently found that his lung issue was creating a heart issue as well. This decision has been easy and difficult at the same time. Easy because we know it is the best thing for Max, and difficult because it isn't what we wanted for him.

Wesley is doing quite well. He is on "home flow" nasal canula. He has also had the opportunity to take a bottle. He wasn't quite sure about it, he gagged and coughed a lot. Thankfully it is something we can continuosly work on. Even if he doesn't get it right away he could come home with gavage feedings. Mark and I will just have to learn how to put in a feeding tube. There is a chance he might come home in a month or so.

Please pray for Max's little body going through surgery again. For fast healing of his lungs and stopping the damage to his heart. Pray for Mark and I to be strong for our little guy. Also, that we quickly learn all the different things we will have to know as his parents.

Hopefully later tonight we will have more details about when surgery will be. And, have Mark describe exactly what the trach is and means for Max. He is MUCH better at that then I am.

Mostly good

2009-08-17T22:01:00.005-04:00

The boys had a "mostly good" weekend. Max had a bit of a crummy gas on Friday night (7.37 and 67 for those of you keeping score at home) and the decision was made to put his CPAP pressure back to 8 (up from 7). This was a bummer for us because we really had to fight to get them to move to 7, and Max did so much better, at least outwardly. It seems that the changes from pressure to pressure have not had much of an effect on his gases, but if the docs think they are seeing an upwards trend in his CO2...look out, changes are a comin'!! Nurse Ashley is on for the next 3 nights, so she will do everything in her power to get us back to a CPAP of 7 and on our way to 6. Max's oxygen needs have been hanging in the 40% range, unless he gets to take a nap with his Dad, then it is more like 35%. He tipped the scales at 9 pounds 15 ounces tonight!! So close!!! He has been getting a diuretic called lasics over the last few days to really dry him out, so a stall to the weight gain is expected...but he is on his way back up!!

I was looking through some pictures and realized why Max had such a bad gas on Friday. Someone thought it would be cute to quick put him in this outfit and get some pictures before his Dad got to the hospital. Well Grandpa B...I hope you like the pictures, because it may have set back Max's lung development by a week or two. I am suprised it didn't burn his skin.

Wes had a good weekend. He continues to do well off CPAP and has been requiring very little oxygen. He seems to have the breathing thing pretty much figured out!!! So now the next hurdle is feeding. They moved him down to 1-hour feedings on Friday, then 1/2 hour feedings on Saturday. That was a little much and he had some issues with spitting up, so they moved him back to 1-hour. then today they moved him back to 1/2 hour and said that no matter what, they are going to do at least 24-hours worth of feedings (8 of them) at 1/2 hour to give his stomach a chance to stretch and adapt. Please pray with us that his stomach will do just that. He got his first 1/2 hour feeding at 2:00 this afternoon and then again at 5:00...so far so good!! Wes made another major accomplishment tonight...he hit double digits!! That's right folks, Wesley weighs 10 pounds even. I cannot even believe it. He weighed 1 pound 6 ounces at his smallest about 4 1/2 months ago. God is so good.

I had a little talk with him about how proud I was that he has come so far and fought so hard. It was a very special moment...then he started tooting like crazy, and he found that very hilarious. I had to smell them and was not laughing nearly as hard as he was.

Here is a picture of me holding Wes from May 12...more than 6 weeks after he was born. I cannot believe how tiny he was and how much he has grown!!

Uphill?

2009-08-13T21:32:00.005-04:00

The boys continue to be very stable and make good progress. Max is down to a CPAP of 7, and seems to be much more comfortable there then he was at 8. His oxygen needs are actually down a little bit, more in the 35-40% range than 40-45 like he had been before the move to 7. This is almost certainly due to the fact that he is more comfortable closing his mouth, which allows the CPAP to deliver both the pressure and the oxygen to his lungs. When he was fighting the higher pressure of 8, he would never close his mouth, so much of the support from the CPAP and the oxygen never actually made it to his lungs. Thanks to Nurse Ashley who really campaigned for us and got the docs to make the move to 7...he has been a much happier baby since. Now that Max has been so stable on the CPAP, talk of the trach is starting to really pick up steam. 6 different docs in 4-days said something to Kate about it. Yep...we know...we are not ready to pull the trigger on a very permanent, life-altering surgery when our God just performed a bonafide miracle in this boy's lungs not 3-weeks ago. Not only that, but he is still improving, still growing and still getting stronger. Kate and I fully understand that if he got a trach tomorrow that we could more than likely take him home in a month. But we have come this far, and we are going to do what is best for Max for the next 90-years, not what is easiest for us over the next 90-days.

Wesley has been an absolute rock star lately. I think I talked about how he was off CPAP but on high-flow nasal cannula, which is really a lot like CPAP, but a little more comfy. Well he is down to low-flow nasal cannula full time, and not only that, but he is down to 0.10 liters of flow, which is almost as low as he can go before they start trying him without oxygen support altogether!! That probably won't happen for a while, but we leave every possibility open for God. the other big change for Wes is that they have started to compress his feedings over a short time period. He had been getting fed over 2 hours, so his feeding of 70 ml is given to him consistently over 2-hours versus a baby taking a bottle in a 10-15 minutes (I really have no idea how long it takes to feed a "regular" baby, so that could be way off). He is fed over time to prevent any refluxing and then aspirating that into his lungs and setting back progress for weeks and weeks. Now that his lungs are getting strong and he needs minimal support from a respiratory perspective, it is time to start working on feeding...the last hurdle before he comes home. Anyway...they have been slowly weaning his feed times down, and they moved to a 1-hour feeding today, and he seems to be handling it well. Please pray that he continues to do so. If he does, they will try 1/2 hour, then basically a gravity feeding, and then a bottle. Talking about this all seems like a pipe dream. In a weird way, it is hard to picture the boys ever living in this house. We have become so accustomed to them being in the hospital that it almost feels strange to think about them being home. Hard to explain.

Now for some videos!! I was sick like a dog for a good 5-6 days and not able to get to the hospital for a whole week. That really sucked - no other way to put it. So, I had Kate take lots of little video clips with our digital camera just so I could see them move and make noise. She got some good ones. Here are a few of our favorites:

This is Max playing with his toys. Kate and I think he is a very smart little boy!!

And this is Wesley...this little guy really likes his pacifier!!

As the title suggested, there is a feeling that we are maybe climbing the hill and actually making some progress. For months any step up seemed to be followed by fall off a sheer cliff. But over the last 2-3 weeks it really feels like we are stepping on firm ground and moving forward. We are still cautious because of the rocky road behind us, but thankful for the way God has redeemed it into an amazing journey. I am reminded of the song by Jars of Clay called "The Valley Song" where the chorus says, "I will sing of your mercies, that lead me through valleys of sorrow, to rivers of joy." That really says it all. What a mighty God we serve.

I did want to mention that the boys had an eye exam recently, and both boys have mature eyes!!! That is such amazing news, and a true rarity for 24-weekers. Yet another way that God has answered our prayers in a way we would have never thought to ask. We so often prayed that they would not have ROP, an eye disease that effects so many micro-preemies, but I am not sure I ever prayed for the boys to have "normal" eyes. That seemed like asking too much, but that is why God is God and I am not.

Quick Update

2009-08-09T21:56:00.002-04:00

I am VERY happy to report that our prayers have again been answered, and Wesley is still on nasal cannula!! In fact, the CO2 of 66 that he had on Friday afternoon was the highest it has been since. Gotta love the way God works. Max is also doing well. Max weighs 9 pounds 10 ounces and Wes weighs 9 pounds 2 ounces. That is like real babies!!

Sorry for the sort update, I am still feeling like garbage and it hurts my head to look at a computer screen. I would appreciate prayers for quick healing from whatever it is that I have because I have not seen my sons since Wednesday night. Kate has been not only taking care of me but also taking care of the boys...I am guessing she would rather be at the hospital than dealing with me. She takes lots of pictures of the boys for me, which does help, but I look forward to holding them again sometime soon.

19 weeks

2009-08-07T20:57:00.004-04:00

Once again, sorry for infrequent updates. The boys are doing pretty well. Max is still on a CPAP of 8 and his oxygen needs have been in the 40-45% range. He continues to gain weight, maybe a little quicker than the docs would like, and as of last night (Thursday), he weighed 9 pounds 10 ounces. They have increased his dosage of Aldactazide, a diuretic designed to help pass any excess fluids. He continues to use his voice to get attention when he feels like getting held...which is pretty much all of the time.

Wes is currently on off CPAP and high-flow nasal cannula!! He is coming up on the 48-hour mark, but the docs think he is working a little too hard. If his blood gases show that his CO2 is in the 70s, he is going back on CPAP. His last gas was this afternoon at 2:00 and his CO2 was 66, up from the highs 50s the night before. It seems like it is a pretty good possibility he will end up back on CPAP soon, but God has answered so many prayers in ways we never could have imagined, so we a certainly not shutting the door to a miracle at this point. He is such a sweet little boy without his SCUBA apparatus, and it is just so nice to be able to easily move him around without the CPAP junk. The thought of going back on CPAP will just feel like coming home is farther and farther away.

Both boys are absolutely entranced by their mobiles. They literally follow the little dangling fish all the way around the rotation of the mobile. Some people told us early on not to even get mobiles because kids don't/can't focus on them...that is not the case for Max and Wes. Max has another toy in his crib that he has really been enthralled by as of late too...as you can see in the picture below:

I have been pretty sick over the last few days and have not been to see the boys since Wednesday evening. That really sucks. I am starting to feel a little better, and because of the situation with the boys, I did go to Prime Care to make sure I did not have the flu or some over infection. I suppose after 5 months of "living" in a hospital, the body is bound to pick up a bug or two somewhere along the line.

Good weekend

2009-08-03T21:22:00.002-04:00

Sorry for the long time between posts. The boys had a good weekend. I will start with Max so I don't get anybody confused (including myself). Max has been doing well on CPAP. His oxygen needs have been in the 38-44% range. His gases had been running in the mid to high 50s, but on Friday he had a gas with a CO2 in the low 60s, so the decision was made to move the PEEP on his CPAP up from 8 to 9 (10 is the highest setting, 5 is the lowest). It was a proactive move to keep his gases looking good and give him as much support as they can without resorting to the vent. He has been stable and the docs moved him back to a PEEP of 8 today. Please pray with us that Max's gases look good and that his lungs continue to grow and expand and the muscles that help him breathe continue to get big and strong. Max has certainly learned how to use his new found voice. Turns out, if he cries, either his nurses, Kate or myself, runs to his side and usually ends up holding him and rocking him back to sleep. It is really just a ploy for attention I think...I mean, what can he possibly have to be upset about? Max also tipped the scales at 9 pounds and a fraction of an ounce tonight!! 9-pounds? We are getting awfully close to double digits buddy!!

Wes had a good weekend as well. He continues to do very well with his weans and is up to 3-hours twice a day. His breathing gets a little bit labored towards the end of the wean, but his oxygen needs have been very low...lower than what some kids go home from the NICU with. That is very encouraging for Kate and I. We have had a lot of people asking if we have any idea when the boys are coming home. The docs have not really given us much of an idea, but what we can gather from nurses and just our own knowledge of what it takes to go through the 'exit" doors of the NICU, our best guess right now is that maybe Wes will come home in September sometime and Max will likely be more like October/November depending on if we end up needing a trach or a G-tube (a feeding tube surgically placed in his stomach for feeding). We are just going to focus on today for now!!

Surgery #4 in the books

2009-07-30T22:31:00.002-04:00

Wes' surgery today went well. It took about 3-hours, which had us a little concerned (Max's procedure took about 1 1/2 hours), but the surgeons are very pleased with the results. Perhaps the best part of the whole thing is that Wes came back into the nursery post surgery on CPAP!! The anesthesiologist chose to do more of a local anesthetic as opposed to a general, so Wes was not nearly as "out of it" as Max was when he had his hernia repair a few weeks ago. The transport team said they better extubate him and get him on CPAP so that Wes didn't do it himself on the trip from the operating room to the NICU nursery. Yet another way God has answered our prayers in a way we wouldn't have even thought imaginable. Wes was certainly in "lala" land for a while, but he was awake and at least partially aware. The surgeons said he had a very large hernia on one side and a smaller hernia on the other, so he should be quite a bit more comfortable now!!

Max had a quiet day...he let his brother have the limelight today. His blood gases continue to be very good, but the doctors continue to wait before making any further changes to the CPAP pressure. Kate and I are just so thankful that Max has now been on CPAP for 8-days after relying on a ventilator to sustain his life for 117-days. Even Doctor Doctor stopped by and said...and I quote, "Max continues to amaze us all!!" He even said that the trach talk has been put on "pause." I feel like we are on a completely different path than we were even two weeks ago...and that is a good thing!!

Another Surprise

2009-07-29T22:57:00.003-04:00

We found out late this afternoon that Wesley is going to have his hernias (they think he has a double hernia) repaired tomorrow (Thursday) at around 1:30 PM. We were not really aware that the docs were thinking that it would happen so soon, and even found out later that they were hoping to "fit it in" today. Thanks...can we know about this too? Anyway, we covet your prayers for strength and calm for Wes, steady hands and good decisions for the doctors and comfort and peace for Wes' parents. This is a routine procedure, but any surgery is a big deal, particularly with these little guys. The other fear is that Wes will have to be reintubated and put on a ventilator (Max was still on a ventilator when he had his surgery) during and after the surgery. Our prayer is that he will be able to come off the ventilator quickly and without any setbacks to the progress God has granted Wes in the breathing department.

Family Time

2009-07-28T21:54:00.005-04:00

The last couple of days have been good days. Max continues to do well on the CPAP and is quickly growing to hate the apparatus as his little brother did many months ago. The decision was made to move Max to a bubble CPAP like Wes has...in other words, CPAP without a ventilator. It feels so strange. Max was at one time a collector of expensive machinery, and now he is hardly even using any electricity!! I was talking with one of the doctors the other night and said, "I feel like we aren't getting our money's worth around here anymore. First they move out of their $60,000 high-tech incubators into these steel cage cribs that look like they are made at Jackson State, and now the boys respiratory needs are taken care of via some cheap tubing and a jar full of distilled white vinegar." I don't think he caught the sarcasm in my voice and awkwardly walked away. That was fun. Max's oxygen needs have been in the 37-45% range. His gases over the last 24-hours have been very good and likely warrant another change to the CPAP pressure, but the doctors and NNPs (Neonatal Nurse Practitioner) have decided to give him a few days between PEEP changes so that they do not "pull the rug out" too quickly. Kate and I agree with this approach and are enjoying just being ecstatic about Max's progress. I cannot believe how many prayers God has answered in the last few days alone. After months of no change or bad changes, this has really been an revitalizing couple of days. Max weighed in at 8 pounds 6 ounces (I think). One down side to the steel cribs is the lack of a built-in scale, so we are trying to find a new "base-line" weight measurement with a new scale.

I would say the talk about a trach (trake) for Max has kind of quieted down for now. I have to start calling it a "trach" because Nurse Anne read the blog and made it a point to correct the error of my ways. Sorry Anne, I am a humble banker and prefer to spell made up words in a phonetic way...but you are the expert. So from now on: trake = trach. If I were to guess at what a doctor would say in response to the "does he still need a trach?" question, it would be as follows: "He has really surprised us in the last week or so, but I would imagine a trach is still a very good possibility." So we are not going to ask and just focus on enjoying Max's improvements. The picture below is of Max on the CPAP. He is also all dolled up in his Denver Broncos themed outfit for his 4-month birthday pictures (Monday was 4-months):

Wes got to start weans AGAIN. We have voiced our concerns about the inconsistencies with the whole weaning process and feel like we may now have a plan. So Wes has been getting 1-hour weans twice a day since Monday evening. He loves it..but maybe not as much as we do. He is such a sweet little boy apart from the CPAP. We thought for sure that Wes was going to be an angry child and a real menace, but after seeing him off CPAP a couple of times, I think we may have grossly misjudged him. Wes also tipped the scales at 8 pounds 1 ounce tonight!! Way to go
Wesley!! You are catching up with your big brother pretty quick!! The picture below is of Wes sitting on my lap while I share with him the story of John Elway and the Denver Broncos and the road to back-to-back Super Bowl Wins. He was mesmerized by the story, as pretty much everyone is.

With Wes on nasal cannula weans and Max on CPAP, we had the opportunity to take some family photos. Kate and I were reflecting together on the way home last night how much fun it was to just enjoy being parents. This may sound odd, but we have not been able to do this yet. Our days have been filled with so much worry and concern about the next 5-minutes, 5-hours or 5-years, what kind of quality of life do the boys have to look forward to, when is the next bad gas coming, when is the next infection coming, etc. But last night, we just had fun.

Notice the Denver Broncos and University of Michigan outfits. We had to get the boys dressed up for their 4-month photo shoot with Nurse Ashely, and Kate is adamant about "coordinating but not matching." I can think of no better way to accomplish this then by donning the team colors!!

So far, so good

2009-07-26T20:36:00.003-04:00

Max has made it more than 96-hours on CPAP now, and things are looking good!! His gases had been trending towards higher CO2 numbers (60 and then 64), so Kate and I had a bad feeling in the pit of our stomach. His gas last night had dropped back down to a CO2 of 60, and his gas this morning improved even further to a CO2 of 57!! The doctors felt like he was doing well enough that they moved him down from a PEEP of 9 to 8. Now that Max is off the ventilator, he only has one number to really pay attention to, and that is the PEEP, or the pressure that is ever present regardless of inhale or exhale. The higher the PEEP, the more support the apparatus is providing, a lower PEEP requires bigger breaths on the boys part. Wes has been at a PEEP of 5 for about 19 months now, and that is the lowest they go. The move down to 8 for Max is a big deal for us because we now feel like we are one step removed from going back on the vent...there is another alternative if he is not doing real great that does not require him to be reintubated. Thank-you Lord!! I love when HE answers our prayers in such a bigger and better way then we could have ever let ourselves believe was possible. Thank-you to everyone who has been storming the gates of Heaven with us...there is little doubt that prayers for Max's strength and endurance were heard and answered.

Kate and I had a chance to talk with one of the NICU doctors this afternoon about Wes and the weaning situation. He is the doctor that cancelled the weans because Wes' oxygen needs were starting to creep up a bit. He now feels that Wes is ready for a trail off CPAP. No weans, just one and done. Kate and I couldn't agree with him more. Wes' breathing has been very rhythmic and consistent and his O2 needs have been in the high 20% range. This news came as a bit of a surprise to us after the events of last week, but we are ready to move one child to CPAP and another child off...two is too many. I imagine that the boys' disdain for the CPAP is similar to a child with Colic are acid reflux. As a parent the only feeling to describe it would be "helpless." Join us in praying that maybe this will be the last Sunday Wes is on CPAP.

Another prayer request we have is for Wesley's vocal chords. Max has actually stated to cry out loud a little bit since being extubated on Wednesday. It is a weak, raspy cry, which is too be expected after being intubated for the length of time that he was. But we were reminded that Wes still doesn't really make any noise. There is always a risk of paralyzing the vocal chords when a child is intubated, particularly when they are as little and fragile as these two were. This paralysis can either be permanent or temporary. We are obviously praying for any paralysis to be temporary. We don't even know if that is why he doesn't make any noise, but given their pathway thus far in life (multiple intubations and extubations), it is the most likely scenario. An ENT doctor will scope Wes' larynx at some point, but nobody except Kate and I seem real concerned with it, so there is nothing on the schedule at this time. Pray that God will touch Wes' throat so that we can hear his sweet little voice for the first time.

Come on Buddy!!

2009-07-25T21:02:00.002-04:00

Just a quick update to let everyone know that Max is still on CPAP. He is right in the middle of the time period when they see most kids go back on the vent (usually 3-4 days). His gases have not been looking as good lately, but nothing they will out him back on the vent for just yet. The doctors also felt that it was time to get rid of the INO, and about 24-hours later, he is doing well. His oxygen is in the 40% range, but that is only up from 30-35%. The last time they tried to wean Max off the INO, his oxygen levels jumped to 80%. So there are a lot of moving parts right now, and Kate and I REALLY want the CPAP to stick. I think we both feel that if he has to go back on the ventilator that means he will also need a trake. This may not be the case, but that is what our hearts are telling us right now.

Wes is doing well...his normal crazy self. Both boys were upgraded to "big boy beds"...more commonly know as cribs. It is a big difference from the incubators, but feels more "normal" in a weird way.

Still chuggin'!!

2009-07-23T22:17:00.009-04:00

27-hours later and Max is still on CPAP!!! Not only that, but I just called to find out his blood gas tonight was 7.44 and 46. That may be Greek to a lot of people...but that spells "phenomenal" for Maxwell!! I have not heard just yet, but the doctors will almost certainly make a change to his settings based on those numbers. I can remember like it was yesterday when Max's gases were more like a pH of 7.25 and a CO2 of 75. Thank-you Lord!! This is without a doubt the first time in my life where I have prayed for something so hard, cried when there were SO many setbacks, argued with God on so many occasions, and now to have a feeling of utter joy for the healing He has performed. I feel like I could write a Psalm right now. Max's oxygen needs are up a little bit - about 35% or so from the lower 30s yesterday. This is not a big concern considering the amount of trauma he has been through in the last day or so. Please continue to pray with us for strength and endurance for Max. We would love to see the vent go away, to have hope again that maybe Max doesn't need to have a trake. We have been praying for God to make a pathway very clear so that we can move ahead, trake or no trake, feeling that it was God's plan. We are hopeful that this is God saying, "give Max a shot...I think he might just surprise you all!!"

Wes had a good day as well. One of the doctors that saw him this morning did decide to stop the weans. We are a little frustrated by this, because the day before, one of the docs wanted to increase his weans to 4-hours twice a day, now we are back to nothing. This is really one of the very few areas where there seems to be a lot of conflicting schools of though from the docs. Some say to give the kids a shot to prove themselves, others say if the kids need CPAP support, then they need CPAP support. I feel like Wes deserves at least an hour or two a day. He has proven that he can do it, and he is so much more happy without the CPAP, if even for a fleeting moment. Wes deserves what happiness he can muster.

Max's respiratory therapist tonight last saw the boys the night they were born. She said she can remember that night very clearly. She could not stop talking about how amazing they look, how big they have grown, and how cute they are. God really used her to remind me of how much we have to be thankful for. It has not been a short road, but the concerns of today are not at all what they were 118-days ago.

I wanted to share another amazing thing that happened in our lives recently. Marie Clark, a professional photographer, approached us about doing a photo shoot with the boys in the NICU. A few weeks ago, Marie came to the NICU, donned a Big Bird yellow gown and latex gloves, wiped all of her camera gear down so as to not transfer any foreign bacteria, and just started snapping pictures. I was thinking all of the pictures were going to look goofy because of the setting and the stupid gowns and gloves, but her artistic eye and God given ability transformed these still images into something that for us is just breathtaking. I have included a few of the pictures below, but she has more than 230 images from the shoot at the following site (you do need to create an account, but it is really one of the few places to store this many high quality photos):

http://www.pictage.com/client/event.do?event=690798&emailFlag=true

Marie has a webiste that showcases some of her other work as well:

http://www.mclarkphotography.com/

Guess what...

2009-07-22T21:22:00.002-04:00

...Max is on CPAP!!!!!!!!!! In traditional Max fashion...HE decided tonight was the night. He worked the tube out enough that it was no longer helping him at all, so instead of reintubating, they gave him a shot on CPAP. That was about 7:00 PM and he is doing great as of about 5 minutes ago. His heart rate is good, oxygen needs are in the low 30% range (no real change from the ventilator), his respiratory rate looks good, he is not working too hard to breathe and he is comfortable enough to sleep. I have been waiting to write this post for a LONG time. There is no guarantee that the ventilator is gone for good, but we are so proud of Max and how far he has come, and so thankful to God for giving him the strength to do so. God has worked through literally hundreds of people, hundreds of vent changes, hundreds of respiratory treatments and for well over 100 days to get to this point. We are ready. We know Max can fly, but they did not want to kick him out of the nest just yet. So Max jumped. Just like with the jet vent, Max decided he was done with it. Thanks for the help ventilators, but Max is going to take it from here!! We would love to see that stupid vent wheeled out of the room, but it is not uncommon for kids who have been intubated for as long as Max has to tire out after a few days. But Max is a strong little boy. To endure everything he has to this point and still have such a great attitude amazes me. So we are hopeful that this is it. The doctors had talked about extubating him possibly this weekend and giving him a shot on CPAP, but nurse Ashley said that more often then not, this is how it happens. The kids just say enough is enough. Max's vent settings were down to 19 over 8, which are essentially CPAP settings anyway, but the doctors had decided to focus on getting rid of the Inhaled Nitric Oxide (INO) instead. The INO is the gas that gets mixed with the oxygen and helps to open up the blood vessels in the lungs and aid the transfer of oxygen to the bloodstream. INO is most often used when kids have pulmonary hypertension, or the half of the heart dedicated to the respiratory system is enlarged due to constricted blood vessels. Max has never had pulmonary hypertension that we know (he has certainly had enough heart echos to confirm this), but it has a pretty significant effect on his oxygen needs. He is down to 1 part per million, the lowest setting possible. We have been to 1 ppm before, but when the machine was turned off, his O2 needs really increased. The doctors decided they wanted to get rid of this machine once and for all, but Max (with God's help) had different plans. Please join with us in both a prayer of thanks to God for how far he has brought Max, but also a prayer for continued strength and endurance. It is not an easy thing for these kids to come off a ventilator, particularly after the amount of time Max has been intubated. He doesn't know anything different. His blood gas at 9:30 showed a pH of 7.32 and a CO2 of 61. Not terrible, but not as good as they had been looking over the last week or so. Pray that this was just a hiccup as he recovers from the trauma of being extubated.

Wes has been doing very well too. I feel like he gets left out of these posts a lot, but it is all for good reason. They did start weaning Wes again, which has been a lot of fun for his parents!! He just loves having the CPAP off, all he wants to do is sleep. He is currently off CPAP for 3-hours, twice a day. They are also using what they call a "low flow" setup, which differs from the last time he was weaned. A number of weeks ago when they tried to get him off CPAP, he was on just oxygen through a nasal cannula at 2.5 liters of flow. This time around, he has been on a flow of about 0.1-0.2 liters, and really doing well. His blood gases have been relatively unchanged from when he was on CPAP full time just a few days ago. His breathing seems to be much better, and we have encouraged the doctors not to push him too hard because we really want this to be the beginning of the end for the CPAP apparatus. Two kids on CPAP is just too much. Trust me. Join us in praying for continued strength for Wes as well. Pray that God will give him the strength he needs to get to a place where breathing is as effortless and involuntary for him as it is for you and I.

The boys did have their sodium chloride tests yesterday to test for Cystic Fibrosis. The goal was to collect three "rings" of sweat so that they could run the test on each boy twice. They were only able to get 2 rings from Max and zero rings from Wes. Max's test came back normal. I asked when they would try to repeat the test and the best answer I got was "right before they go home." Thanks...that really helps!! And when is that going to be exactly? Sorry...back to the post. They also had another eye exam on Tuesday, and both boys eyes were still immature. This is really what we want to hear at this point. ROP is an eye disease that effects a LOT of kids born as prematurely as Max and Wes, and in mild cases may require some laser treatments and in the worst cases can lead to blindness. We have been VERY blessed to not have either boy have any signs of ROP so far. At this point, they are pretty much "out of the woods" for having ROP as I understand it. They may still need corrective vision at a very early age, but indications at this point are that they will be able to see, and that is such a great feeling for Kate and I.

Great Weekend

2009-07-19T21:28:00.005-04:00

I am very happy to report that the boys have had a great weekend!! I will start with Max. His blood gases have continued to be stellar and they have been able to make numerous vent changes. He is currently at a pressure of 21 and a rate of 30 breaths per minute. This is phenomenal. On top of that, his oxygen needs were as low as 28% for a few hours on Saturday night (thanks nurse Ashley!!), and have remained in the low 30s through out the day today. It is also time for "conventional ventilation 101." I have been talking about the "pressure" on the vent, and that broadly meant the PIP pressure on the vent. There is also a PEEP pressure, and that is the amount of pressure the ventilator gives to keep the lungs open and prevent them from collapsing. This PEEP pressure has not really been in play until lately, so I have not talked about it much. From now on, I will be referring to Max's vent pressures as his PIP over his PEEP, i.e. his current settings are 21 over 9. His PIP is almost as low as they will go with a baby Max's size, indication are that 20 is about the lowest. Then they will start to try and drop his PEEP (the pressure of 9) if his gases look good. If Max gets much lower than 9, it is time to start thinking about trying him on CPAP!! I cannot even believe I am typing those words. It seems like it would never happen. The thought of seeing Max's face without tubes and tape for the first time is truly surreal. We do not want to get ahead of ourselves...but Max has absolutely been rocking the last few days. God has answered prayers that Kate, myself, and so many of you have been praying for more than 100-days now. It almost feels fake in a weird way. We have prayed for God to touch Max's lungs and continue to grow and develop them since day 1 on March 27. If I go back even 30-days, Max was on the jet vent and his pressures were climbing. Even if the CPAP trials don't happen, we have so much to be thankful for as far as Max's health goes. His puffiness is all but gone, his eyes are healthy so far, he continues to put on weight (currently tipping the scales at 8 pounds 2 ounces) and his digestive track is doing what it is supposed to do. Please pray that his lungs continue to grow, that his gases continue to look great, that Max's pressures can continue to come down, and that he can get a shot on CPAP. It is a hard thing to "try" him on CPAP, because if he fails, he needs to be reintubated, which is not an easy thing and there is always the risk of damaging the airway or vocal chords. Also, even a successful move to CPAP does not really put the trake discussions to bed because Max can not go home on CPAP...unless he has a trake.

Max got his first "real" bath yesterday!! He was pretty confused about it all, but did great. We captured as much as we could on film and posted a few pics below:

Sorry, I cannot get the photo to rotate, but I think you get the gist of his confusion. Here is a wide angle of the whole operation:

Man is this going to be easy without wires, tubes, monitors and alarms to contend with!! Right??

Wes has had a very good couple of days too. His oxygen needs have been in the high 20% to low 30% range, and they are once again talking about weaning him off CPAP!! Hopefully we take it a little slower this time, and we can be done with those blue and white tubes that Wes has grown to hate with all of his heart. We did find out that both boys are going to have a "sweat test" on Tuesday to determine whether they have Cystic Fibrosis or not. It is a very non-invasive test, but we are certainly praying that it will be negative for both boys (they added Max to the testing just for good measure). They have changed around some of the boys breathing treatments (they both get nebulizer treatments 4 times a day, and will continue to for maybe the rest of their life), and have started what they call CPT, or tapping, which is like an upside down rubber cup that they tap against their chest and back to loosen secretions in their lungs.

Wes weighs 7 pounds 7 ounces, down a couple of ounces from his peak weight. This is likely due to the aldactazide diuretic that he is on (to help with passing any fluid that he might have in his lungs), but we cannot be sure. The picture below is of Wes loving on his CPAP apparatus while wearing an adorable onesie from Kate's Aunt Shelly and Uncle Bob.

Remember to click on the images to make them bigger!!

Dilemma

2009-07-16T22:04:00.003-04:00

Things have been pretty good the last couple of days. Max has recovered well from his surgery, although I think the Tylenol is wearing off a little bit...he was pretty cranky tonight. The straightening of the bowel seems to have really moved some things along for him. I personally changed 3 DIRTY diapers in about 45 minutes last night...all of them during a "photo shoot!!" Max's lungs seem to have really responded to the surgery as well. His blood gases have been great the last few days and they have been able to turn him down to a pressure of 23 on the vent. I cannot remember the last time he was that low, and his gases are still looking very good!! We are so excited about the improvements he is making on the ventilator, but we get the feeling the doctors don't want us to get the idea that maybe he won't need a trake. The whole "trake situation" continues to weigh very heavily on our hearts. I talked with an Ear, Nose and Throat doctor the other day (I will call him an ENT going forward). He was examining Max to see how he thought his throat looked in anticipation of the trake surgery. He said that he would be able to do the surgery in the next week or two. That seems like a little quicker than we thought, and we are just torn. He has been doing so well on the vent that we would want to give him a shot at getting off the vent by himself. Even if he did get himself off the vent, he could be on CPAP for a while after that. The trake would allow him to come home on either a vent or the CPAP, but with a lot of strings attached. If he were to come home on a ventilator, we would have to have a back-up generator installed at our house in case the power went out, a respiratory nurse would live in our house for 12-hours a day, mostly at night, we would have to buy a van because a trained person needs to be close enough to Max to switch out or unplug his trake if necessary, and it would almost certainly be in for a year or two, which would likely delay speech, etc. We don't want Max to sit in the hospital for another 4-6 months because we don't want the trake, but at the same time we believe that God can heal his lungs. We are praying that is what is happening right now with the good vent changes. The doctors say that is unlikely, but we believe. Like the woman in who touched Jesus cloak and was healed, not because she touched Jesus, but because she believed He could heal her.

Wes has been doing well. I mentioned that we got some new info on Wes in the last post, so here it is. I am afraid I may have led people to believe it was good news, but that really isn't the case. Wes was seen by a pulmonologist (lung doctor who we will likely be following up with for the next 600-years when the boys leave the NICU) on Tuesday. She noted that Wes has a lot of fluid in his upper lungs and that could be causing his labored breathing. They have started Wes on aldactazide (a drug we are very familiar with because of his brother), which is a diuretic that should help him "move" additional fluids without throwing his electrolytes all off. The last time Wes was on this drug he had a difficult time gaining weight, so we are praying that will not be the case this time. The pulmonoligist also suggested that Wes might have Cystic Fibrosis. CF is an incurable disease that affects the lungs and intestines. Our nephew Luke has CF, and after we found that out (almost 3-years ago), Kate and I both had our blood tested to see if we were carriers. Kate was, I was not, i.e. the likelihood of our children having the disease was about on in a million. On top of that, the boys had their blood tested at birth and they look for any mutations, neither of the boys had the CF mutation. We are confused as to how Wes could have CF, and it was just a theory, but not a theory we are real keen on. WE have not learned much since that consultation with the pulmonolgist, and we will keep everyone posted as we learn more. Indications are that there are more tests to come because there are 1,500 different strains of CF.

Another successful surgery!!

2009-07-14T22:39:00.004-04:00

Things went well today!! The surgery did take a bit longer than they had originally thought, which was a little concerning for us, but the surgeon said that everything went well. He did have a hernia in both cavities and they were successful in fixing both and did not disrupt the blood flow to the testicles. The NICU doctor who examined him after the surgery said that his lower abdomen sounds much more relaxed than before (via a stethoscope). This would make sense as they were able to take two hairpin turns out of the intestines...I would imagine things will "flow" a little easier now. Max was not too keen on the whole moving process from his bed to the transport setup, which is quite a maneuver. As you all know, Max has a lot of hardware, and it all needs to be either switched to a portable device or wheeled right along with the transport isolette. Kate and I got to the hospital early so we could sing and pray with him before he got wheeled away, but the nurses put us right to work. I ended up pushing his cart to the holding room because EVERY nurse in the NICU is pregnant right now and on weight restrictions. Seriously...there is something in the water at that place. I wish we would have know that prior to the fertility treatments!! I took a picture of the setup required to move him down to the holding room for surgery:

Can you find the baby in the picture above?

Thank-you to everyone who prayed for not only Max, but the surgeons, the nurses and Kate and I. We had some jitters because surgery is always a big deal, and it is a much bigger deal with baby who has had to put more effort into living in 15+ weeks than I have in 28+ years. But after they wheeled Max in for surgery there was a calm that only comes from God. Kate actually went back up the NICU to be with Wes and because they wheel Max right back to the nursery for recovery. I stayed in the waiting room on the surgical floor so that I could talk with the doctor afterwards. Like I said, the surgery lasted longer than we had thought, so I ended up drinking 4 1/2 cups of hospital coffee and doing about 19 crossword puzzles. I did have some smelly neighbors and overheard some very frank talk about a hysterectomy, but I got a chance to talk to the surgeon after the procedure, so after some therapy it will all have been worth it.

Max is recovering well. His oxygen needs are back in the 45% range from about 70% earlier today, and he did have a few small poops so they were able to get his feedings started again tonight which they were very pleased about.

We did get some new information on Wes today too, but you will have to stay tuned for that because I am going to bed.

Surprise

2009-07-13T21:46:00.002-04:00

This will be a short post asking for prayers for Maxwell. I got a call this morning from Dr. Dr. saying that a decision has been made to move ahead with a hernia surgery for Max...tomorrow. I have not brought up the hernia situation yet, because it has frankly not been an issue so far. Disclaimer: the following description will contain frank references to the male genitalia. If this makes you squirm or giggle to yourself a little bit...it is probably time to grow up. Many of you likely know that all life starts off in the female form. The same organs that develop near the kidneys that become a female's ovaries are the "same" organs that descend into the scrotum of a male and become testicles. When little boys, i.e. Max and Wes, are born as early as they are, this descent has not yet happened. What does happen, since the babies are now lying flat with little to no gravity to help the process, is that their intestines loop through the hole into their scrotum that would normally be occupied and closed off in a term baby. Both Max and Wes have this "hernia" in both sides of their scrotum. The boys' motto is "go big or go home." They have both been seen regularly by a team of surgeons who examine the size and severity of said hernias, and these surgeons, upon examination, try to "reduce" the hernia or push it gently back into the abdomen. If this procedure is not met with much resistance, they are happy campers. The typical time line is for little boys to have this surgery done about 1 week prior to their departure from the NICU to their homes. The thought process behind waiting is to let the kids get as big and strong as they can and overcome all of the trillion obstacles that life throws at these babies. Wes' "reducing" procedure went as expected, but Max's did not. Nurse Emily said that when the doctor applied pressure, Max's eyes about popped out of his head and his face turned very, very red. At the risk of sounding off color, I will say only that I do not blame my son for having this type of reaction!! Needless to say, the hernia did not reduce. This is of concern because if the bowel or intestines were to twist or kink, the results, the doctors said, would be devastating. The implication was that it could easily become a loss of life scenario if that were to happen. They are okay with things right now because the blood supply looks good, but they are taking every precaution. So Max is having somewhat of an emergency surgery tomorrow morning at 10:45. The procedure is done by making two incision on either side of his abdomen and essentially lifting the intestine out of the scrotum, letting the testicle assume its rightful position, and then closing things up such that it can/should not happen again. The surgery is quite common, and the risk of blood loss is not even near what it was with the boys' heart surgeries, but there are some risks. The largest of which would be loss of blood flow to the testicle for a long enough period of time that there would be concerns about sterility down the road...a very, very long road.

We covet your prayers for Max and the surgeons tomorrow. Kate and I have been absolutely leveled by all of the information thrown at us about trakes and physical therapy and respiratory therapy and feeding clinics, etc. and our energy level is LOW. Please flood the gates of Heaven with prayers for Max. Pray that God send his Holy Spirit to hold Max before during and after the procedure. Our hearts are broken for all that these boys have had to endure, particularly Max, and just want him to be comfortable and safe. This surgery does not carry the "hope" that it will really help in the near future like the PDA surgery did, so our feeling has been more of a hope that this doesn't set him back too much.

Due Date

2009-07-12T21:25:00.004-04:00

107 days. 15 weeks and 2 days. Kate's original due date was on Saturday, July 11. With twins, they pretty much told us that if Kate went into labor anytime after about 36 weeks they wouldn't stop it, so we never really thought 7/11 would be the day/week the boys were born. Regardless, it was a big day because the boys are no longer "negative" days/weeks old. They are term babies now...in the very lightest sense of the word. The only difference is that they have both been on life support for many many months (Max still is), have both had heart surgery, require a very skilled team of nurses and doctors to sustain there livelihood and will continue to be in the hospital for many weeks or months. This is not something we ever really think about, frankly we don't know any better. But this weekend it was a little different.

I will start with Max. He had been hanging out with no real changes over the last few days. They have weened his INO down to 1 part per million, and his oxygen needs had been in the 45% range. Still at a pressure of 28 at the vent. Notice I am writing all of this in the past tense. Kate held him for a while to day and he started to get a little agitated, which almost always means he needs to be suctioned out (tube down the throat into the lungs = no ability to cough, clear throat, etc. to get rid of secretions in the lungs) or he needs his diaper changed. His diaper was clean, so we asked nurse Mandy to suction him. She wasn't assigned to the boys today, but our nurse was at dinner, so Mandy was nice enough to help. We ended up having a repeat of the "incident" that happened a few weeks ago when the suction hose did not work, meaning Max got a shot of saline into his lungs. Apparently some time while Max was moved in and out of his incubator, the suction tube came disconnected from the wall. I personally reconnected the tube this time...and it will require the strength of 10 men if they think that hose is ever coming off again. This all happened at about 6:00 tonight. Max has recovered much better than he did last time (I hope it is not because he is getting used to it), but only his blood gas will show the real level of his recovery. His gas last night and then again this morning were both great...but no vent changes were made. The last time Max got a shot of saline in the lungs, his vent needs went up by quite a bit, so we are praying that is not the case this time. Max tipped the scales at 7 pounds 15 ounces last night (don't have tonight's weight yet).

Wes has had an okay couple of days. No real changes, but he does seem to be working a little harder than usual with his breathing. There is a technical term for it, but it escapes me right now. They did start both boys on a multi-vitamin a few days ago. I hope it has some good medical benefits because the side effects include terrible gas and a backed up intestinal tract. This has been particularly true for Wes. He has been trying very very hard to go poop and has not been successful. He does send up plenty signals that would lead you to believe he has finally "done the deed"...but no. We are hoping that a very full belly and intestines are keeping his lungs from fully expanding...because his breathing is very labored. This was the reason he was taken off nasal cannula and put back on CPAP. A step back from here is a ventilator. I think I can speak for both Kate and myself when I say that would just be too much to handle right now. Wes weighed 7 pounds 8 ounces tonight.

Kate's Mom purchased two outfits for the boys to wear home from the hospital. It was something that she really wanted to do when it became clear that she would likely be watching from Heaven that day. It looks like the boys will be in the NICU for much longer than we originally thought, and will certainly be too big to fit into these outfits, so Kate and I got them dressed up for a little "due day photo shoot" yesterday. Here are the results:

Max and Mom (the outfit is not very visible here, but it matches the blanket he is wrapped in)

Super Wes (This picture was taken through a very coordinated effort where I held Wes' pacifier in his mouth until Kate was ready to take a picture...then we did a "1-2-3 go!" type of maneuver where I jumped out of the picture and Kate snapped a shot. As you can see, a millisecond is all Wes needs to spit out his pacifier and get his hands over his head!!)

Exhausted

2009-07-08T21:30:00.005-04:00

Hey everybody, sorry for the long stretches in between posts lately. It feels like exhaustion is really setting in lately for both Kate and I. I thought it was may be sleep deprivation, but it does not seem like any amount of sleep is ever enough. This is a new kind of exhaustion for us, and one that seems to be affecting every aspect of life: physically, emotionally and spiritually. We know that God has been with us through this whole journey, even going back to the 24-months of disappointment while trying to get pregnant. There have been literally hundreds of occasions when we have seen and felt the Hand of God, but it seems like those were all a while ago. I am at one of those strange places where I know in my head that God is with us, that He is watching over Max and Wes as He holds them in His arms, but I don't feel it in my heart for some reason. I feel like Satan has crept his way in somewhere along the line and placed doubt in my head, convincing me that this road will never get easier, that only more pain and heartbreak lies ahead...and it is disheartening. I feel bad "whining" about this because Kate and I and the boys have been so blessed by the Body of Christ: our families, friends, church family, co-workers, strangers, nurses, doctors, the greeter at the front desk of the NICU...all the people God has used as instruments of His perfect plan. It just seems like over the last few days and weeks I have not been able to see that all as clearly as I once did. I just want the boys to get better on my schedule...so NOW. I have said "good-bye" to Max and Wes for 104 days now and I just want to say "good night." I want them to be in the nursery that Kate so beautifully decorated for them...I want things to be the way they were "supposed" to be. Many of you know that Max and Wes are in "isolation" because they are carriers for a bacteria called Serratia. This means that Kate and I have to wear gowns and wash our hands a lot. The NICU has recently cracked down even harder because the bacteria seems to be spreading to more kids, and we now have to wear gloves, can no longer do skin-to-skin, and there is even talk that we will not be able to kiss them any more. This might be the worst news we have heard yet. I would rather have the jet vent back than be told I cannot touch my kids, kiss them or do skin-to-skin with them. The boys do SOOOOO much better when we hold them and can touch them. Even tonight, Max was acting up a bit and he really likes his head rubbed, so I was trying to calm him down. It was doing nothing so I took my glove off and started to rub his head again. Within about 15 seconds he was asleep. I completely understand that an outbreak of Serratia is not some little game, particularly in a NICU with small, very sick babies. But I am also convinced that the lack of physical touch could literally set our children's development back months from a physical perspective and maybe permanently from an emotional perspective. This situation combined with the talk about the trake for Max has no doubt spurred on this exhaustion and loss of perspective.

I will get back to the kids now. Max has been quite stable. His vent is still at a pressure of 28 (an improvement over the weekend), and we would love to see that start coming down quicker, but we are happy about the stability. His oxygen needs have been in the 40-45% range, but this is largely due to the INO gas. They had been weaning him down over a couple of days and had him down to an INO of 1 part per million (the lowest that they can go). They want to get Max off of the gas because they cannot give him and MRI until he is off it completely. On Sunday they decided to turn it off and see how he does. His oxygen needs went from 45-50% to 80% in about 15-minutes. They gave him an hour or so to see if his body would begin to compensate , but they could not budge him from 80%, so back on the INO he went. This is actually fine with us, because that gives Max more time to prove to the docs that maybe he doesn't need to have a trake. After the MRI that they had been planning for Monday, talk about the trake surgery was really going to ramp up...so thanks Max!! You bought yourself and your parents some time!! Now if we could just do skin-to-skin with you, we could have you on CPAP in no time!! Oh yeah...we can only touch you with latex gloves on!! Yeah!!

Here is the latest picture of Max. His head is looking a lot better, and he has actually lost some weight over the last few days, which is what we wanted to see. He spends A LOT more time with his eyes open and checking things out than he ever did while on the jet vent. He weighed 7 pounds 10 ounces tonight.

Wes has just been doing his thing. He continues to provide his parents with a lot of entertainment. This child puts Houdini to shame. There is no amount of swaddling that can hold him down. I think we need like an old belt or some sort of strap to keep his arms inside the blanket. And once his arms are out...there is only one place they want to go...playing "so big" with himself (refer to the picture below). Wes weighed 7 pounds 1 ounces tonight...way to go buddy!! Seven pounds already? You are catching up with your older brother pretty quickly. You know, Wes, John Elway wore the number seven...

I wanted to give you all an update on the latest with the house. You may recall we had been talking about selling our house following the loss of Kate's job. I actually went as far as listing the house with a realtor. It was for sale for roughly 36 hours. After signing the listing papers and seeing the "for sale" sign in the yard, it became clear to me that this house needs to stay for now. Not only do we not have the energy or time to keep the house spic and span for showings, open houses, etc., but it became obvious to me how important the stability and comfort of our house is right now. There is no doubt that selling the house is the right fiscal decision, but we are going to take a leap of faith. Many of you probably already know about the Facebook group that Kate's cousin Ann Blystra and friend Laura Barton started. Ann sent an email asking for financial support for Kate and I so that we could stay in our house in the near term. This actually happened a few weeks ago now, but I really struggled with saying anything about it on here for fear that it would come across as some sort of recruitment effort. Please do not take it that way. I am merely bringing it to light because I believe that it is a God thing. I am a financial analyst, and selling our house is with out a doubt the right thing to do. Kate lost her job, and we have decided to readjust our lives to a point where she does not have to go back to work and can stay home with the boys. They will undoubtedly have very different needs then most babies and we feel that her full-time effort gives Max and Wes the best opportunity for "normal" development. So, the house has to go. What my financial analysis did not take into account was the emotional strain of doing what I thought was so clearly the right thing. Every time I pulled into the driveway I saw only a list of things that needed to be accomplished, and the corresponding time that would cost me at the hospital with the boys. God has worked through literally hundreds of people who have pledged financial support to make it possible for us to stay in our home at least until the boys are out of the hospital and settled. Maybe we will still put the house up for sale next spring, but for now, we have committed to following where God leads. I am not sure why it did not strike me earlier that God was speaking through this outpouring of support and saying "Mark, just relax. Do not worry. I will provide. Focus on supporting your wife and your sons." Pulling into the driveway has again become a blessing and not a burden. Wow, even just writing about this has made me realize that God's hand is evident. Maybe it has not been as evident to me at the NICU, but it has been working elsewhere, providing us with the means to be with our boys, and I can see that now. This is why I call the blog "free therapy!!"

I wanted to leave a link on here to a youtube video that Amy Sluiter sent me last night. I was not having a great day, and this song really touched me. Amy, you have a real gift. Your emails always come at the exact right time. Thank-you.

http://www.youtube.com/watch?v=G6LTfueFPpM

There is another video about the story behind the song "Always," and the artist surmises that God's response to the question "God, where are you?" would be, "My child, I am before you, I will be long after you, and ALWAYS, I am with you." That gives me chills. How important to be reminded that not only is God with us, but He is so much bigger than us. Here is the link to that video.

http://www.youtube.com/watch?v=j4c3NOwpceI&feature=related

New digs

2009-07-04T11:51:00.004-04:00

This is Mark again. I have been encouraging Kate to get involved with the "blogging" a little more because I think she has a different perspective than I do on some things. Anyway, it has been a challenging couple of days since our last post. Everything had been moving along hunky dory until Thursday. The NICU has decided to put all of the babies with Serratia into the same nursery, or actually the same two nurseries. So the boys were moved from their corner of the world in nursery 3 to nursery 2. We are actually still sharing the same wall...but it is different. The moved happened on in the afternoon and Kate was there. As soon as they got everything switched around, Kate started holding Maxwell. He was a little fidgety and his oxygen saturation dropped and was not recovering as quickly as it usually does. 9 times out of 10 this indicates that he has a goober in his ET (breathing) tube that needs to be suctioned out. This is done by threading a smaller tube down his ET tube to a specified length (usually just past the end of the tube in his lungs), and then suction is applied and the smaller tube is pulled back up. The suction tube is then flushed with saline to get all the gunk out and all of the "stuff" collects in a little bucket near their incubators. Apparently during the move, the suction hoses were never checked, turned on, etc., so when the nurse went to suction Max, she pushed the tube down, pulled the tube back up, flushed with saline, but nothing came out. So she did it again. Then Max had what they call a bradycardia or "brady" for short. This is when their heart rate falls below 80 beats per minute (bpm - typically Max is around 140-160 bpm depending on how awake he is). It is not a rarity in the NICU for kids to have bradys, but Max was not recovering. The nurse called respiratory and had to "bag" Max for a couple of minutes (using an apparatus to give Max "manual" breaths...we have all seen these on the 14,000 ER and other medical dramas on the major network channels these days...this one is just really small). He did eventually recover, but it took a while to figure out that the suction had never been turned on. With out the suctioning force, the saline the nurse used to flush the tube out all ended up in Max's lungs. Keep in mind that all of this drama happened while Kate was holding Max, so she was very shaken up. And needless to say, he has not been a very happy camper since then. His gasses on Thursday and Friday morning were garbage. His vent pressures increased from 27 to 30 over about a 12-hour period following the "incident", and only as of this morning were they able to make a change in the right direction to a pressure of 29.

We received a phone call from Dr. Dr. on Tuesday and he wanted to discuss the possibility of Maxwell needing a tracheostomy. This would be a surgical procedure where they would install a device to near the base of the neck to allow access to the lungs without having to use the mouth or nose and have a tube down the throat. The most common need for a trachesotomy (I will be calling it a "trake" going forward) is that the lungs are strong but the airway is restricted. Thetrake bypasses the airway allowing for ventilation, CPAP, oxygen, etc. to still be used without having to intubate a child and possibly further damage the airway and vocal chords. Max's case is the exact opposite. His lungs are very sick and underdeveloped, but his airway looks very good. The reason they are considering a trake for Max is because they feel he will need longer term lung support and having access to his lungs from a location other than his mouth allows for him to learn how to feed from a bottle, have a pacifier, etc., and they do not want the presence of a tube in his throat long-term to damage his airway or harm his vocal chords. These all seem like good reasons, but it is a scary thing for Kate and I. From what we gather, the decision is ultimately ours to make whether we "Ok" the trake or not. This is a difficult thing for us to be faced with, because we believe that God has the power to heal Max's lungs. The trake is a very long-term thing...maybe up to a couple of years before they would remove it. Max could eventually go home with a trake, even on a ventilator as long as he has learned to drink from a bottle...but there are a whole host of reasons why we would no want this. From what we understand, a respiratory therapist would likely be in our house for 8-12 hours a day, we would need to notify the county of the situation so that the roads leading from our house to the nearest ER are plowed before other roads in case of emergency, and the list goes on. Our heads are just spinning right now, and I do not feel like we have all of the facts just yet, but please pray with us that God will reveal the direction we should head in a very prompt and clear way.

Wesley is still on the CPAP at a pressure of 5. He is starting to remember how much he hates it, I think. He has been a little more angry as of late, but usually a head rub from his dad and a song from his mom can calm him down. Or he has a dirty diaper. The nurses have commented on numerous occasions about how easy these two are going to be to potty-train. They do not tolerate even a wet diaper for very long.

We hope everyone enjoys their 4th of July holiday...God bless America.

Slow but Steady

2009-07-01T22:10:00.002-04:00

The last couple days have been quite good. Both boys are doing well with their breathing apparatus'.

Maxwell has been able to have his conventional vent setting decreased from 34 to 27 since he has been off the jet, and his INO is also slowly being lowered by one each day (starting at 10 now he is at 3). His oxygen needs have increased slightly, however, that is to be expected with all the other changes going on. He also had a doppler ultrasound done Monday on his neck. The doctors were concerned that the edema (swelling) in his head wasn't going away. The ultrasound checked his veins to ensure they weren't blocked. I am happy to say that the results came back normal and over the last couple days his head is slowly starting to get better. We might finally get to see what our son looks like!!! Tonight Max weighed 7lbs. 1 oz.

Wesley is again rocking the CPAP. He's now on a CPAP of 5 (coming down from 7). His oxygen needs have been consistently in the low 30's. He is still feisty as ever. Last night he managed to roll over from his side to his back and some how throw off the blanket that was swaddled in. Wesley's weight tonight was 6lbs. 5 oz.

Mark and I are extremely pleased with the headway the boys are making. We are trying not to get too far ahead of ourselves though. It always seems our sons take a step forward and two steps back. The boys still have some hurtles to jump over, but for today we are enjoying their progress. We are praying for more days like the last few, and hope that the boys can show the doctors how "big and strong" they really are.

Role Reversal

2009-06-28T21:22:00.005-04:00

The boys have had an interesting weekend. They have had a little bit of a role reversal as far as changes go. Maxwell continues to fight to stay off the high-frequency ventilators, and has actually even gained some ground. The docs made a change to the way the conventional vent is working for Max (they have a few different "modes"), and the easiest way I can think of to describe it would be: instead of telling Max how to breathe, the vent is now helping him with his own breathing. Max has been doing some of his own breathing as of late, which on the "old" setup would actually hinder the vent and set off copious amounts of alarms. The new setup seems to be a little better for Max's size, weight and general attitude towards ventilation. They made the change earlier this morning (Sunday) and a follow up gas showed that it was working well and they were able to come down a little bit on his pressures. Not only is he still off the jet, but he is now gaining a little ground on the "regular" vent. His feedings continue to go well (still over three hours, and I think still into his intestines, but that might change soon) and his oxygen needs have been in the 35-40% range, which is good for him. Oh, that reminds me: Max is still on the Inhaled Nitric Oxide (INO) which helps the transfer of oxygen into the blood from the lungs. A number of weeks ago he was on a dose of 20 parts per million (ppm), and they successfully weaned him off altogether. A weeks or so after that, his oxygen needs began to climb so he was put back on it. Since then, he has been on a dose of 10 ppm, but they turned him down the 5 ppm this morning in an attempt to get rid of that machine for good. Please pray with us that this change will be an easy one for Max. He also has an ultrasound tomorrow to look for the circulation in his neck. His head has remained very puffy, and we had hoped that a few days off the jet would help a lot, but there has been no real change. They are going to look and see if there is any clogging in the neck area that would prohibit proper circulation. We pray that everything appears normal, but are ready to see the puffiness do down too.

Maximus and I had our first "skin-to-skin" or Kangaroo care time today. Studies have shown that the familiarity of our voices, heart beat, respiratory rhythm and even our smell are all very comforting to the kids. The comfort leads to deep sleep (not something they get a lot of with all the lights, people, other babies, alarms, etc.), and deep sleep is when most of the growth and development of the brain takes place. We were told this long ago, but recently watched a video on it at a NICU parent meeting and have recommitted ourselves to doing it whenever possible. It is a little more of a hassle than just swaddling them, but we will do whatever we can to give these boys the best shot possible. Needless to say, it works. Max and I took a nap for the better part of 2-hours, and I can only hope and pray that it was as special and healing for him as it was for me.

Here is a picture of Max staring at my hair. I have been getting a lot of people staring at my hair lately. In an act of desperation I cheated on my two normal stylists (sorry Heidi and Jordan) because I wanted it cut that day. All was going well until the lady asked if I had any kids, then she stopped paying attention to what she was doing, I think. She would be very successful in a military barbershop. Anyways...the picture:

Just to give an idea about how far these little stinkers have come, and how gracious and powerful our Abba Father is, here is a picture from the first time I held our son Max:

What a mighty God we serve.

Wesley has not really had a bad weekend, but they did end up putting him back on the CPAP. His oxygen needs had crept into the mid-50% range, and his breathing was getting a bit labored. The decision was made on Friday morning to put him back on, and since then his oxygen needs have dropped to about 30-35% range, so it has clearly made a difference. The docs thought that maybe parts of his lungs had collapsed, leading to the increased oxygen need and labored breathing, but "before and after CPAP" chest x-rays showed no change. This led them to think maybe he has some fluid building up in his lungs, so they started him on a diuretic called Aldactazide. Wes was on this drug once before, and it really stalled out his weight gain for about 10-14 days. In fact Kate and I feel that is why the boys' weights differ so much (Max weighs 6 pounds 13 ounces, Wesley weighs 5 pounds 14 ounces). We are praying that God will work through this drug and clear any fluid from his lungs, but not let it affect Wes' weight gain. Putting on the pounds is very critical for every aspect of their development right now. Weight gain means bigger lungs, bigger muscles, bigger brains, etc., so we hope we don't lose a few weeks of consistent gains like we did last time.

Wes is still incredibly feisty, but we don't think that reintroducing the CPAP has had a profound effect on his attitude. What does seem to have a profound affect on his attitude is his desire to move his bowels and his body's decision not to comply. His body will allow him to pass copious amounts of gas, however, and most of the people in the room are convinced that he needs to be changed...but no, his diaper is clean as a whistle.

Here is a picture from before they put Wes back on the CPAP...but he heard the docs talking about it and was assuming the position to ward off any attempts:

90 days

2009-06-25T22:30:00.002-04:00

I can't believe that the boys were born 90 days ago. it is one of those strange paradoxes where it seems to have gone fast, but looking back, some of the big events seem like forever ago. Life is a lot different for us now. We have decided to call it "new normal." It has been a real blessing to watch with our own eyes the development of the human body that many will never witness because it happens in utero. God not only knit Max and Wes together in Kate's womb, but He has continued to knit them together outside the womb. It is so amazing to me that the boys have developed very unique personalities despite their often desperate circumstances. Wesley is just a spitfire. If he is uncomfortable with ANYTHING...he lets us know. Red face, flailing arms...this child's neck muscles astound me. Lou Ferrigno has got nothing on Wes. He likes to be held upright against our chests, but if he is uncomfortable (usually because of something in his diaper), he does a move that can only be described as a proper military push-up with perfect form. Toes together, hands shoulder width apart, back straight and butt down. And then there is Max. His personality has really started to shine through since the evil jet vent was turned off. He spends a few hours a night calmly absorbing his environment. Eyes wide open, looking around until he sees something of interest, and then focusing very intently on that. It seems like my hair is one of his favorites things to contemplate...so we certainly have that in common!!

Max is still on "just" the conventional vent!! He has had a couple of "iffy" gases, but they have been able to find his happy place without increasing the pressures to the point where they need to think oscillator or jet vent. In fact, the doctor told Kate this evening that they now have some room to play with the conventional vent if he has some bad gases, so that was good to hear. Kate got to do skin-to-skin with Max and Wes at the same time today!! I was sad I couldn't be there to see it, but she said they were both just conked out. We are both very curious what their reaction to the other will be when they finally are introduced again. They spent 24 weeks and 5 days sharing a very tight space but have not really been near or touched each other for 13 weeks.

Wes continues to do well on the nasal cannula. His oxygen needs have been creeping up a bit over the last few days, and one of the doctors told Kate that they might opt for putting him back on the CPAP machine for a few days to give him a little rest. That doesn't sound great to us, but we don't want him to digress at all either. He also had another "throw-up" episode today. He had bee doing well on gravity feeds (the breast milk simply drained into his stomach via gravity), but he threw up once, so they move him to a compression feeding, so instead of getting his whole feeding in a bout 10 minutes, he gets it over 1 hour. He did well on that, so they tried to wean him to 30 minutes, but he threw that up. This was all a few weeks ago and he has been tolerating the hour long feedings well since. Kate said she thought this episode was spurred on by him "working" so hard to get "things" moving. I am trying to be discreet but I am not sure it is working. The throwing up is a little concerning purely because once he is stable on the nasal cannula, learning how to take his feedings from a bottle is the next big milestone before he can come home. We are praying this is just a little bump in the road, and I realize that children some times throw up, but with their delicate lungs, the docs don't mess around and hope it was a one time event in case they aspirate something into their lungs and really set things back.

I have to say that I am more than impressed with the number of mechanically inclined people that read this blog. Maybe their wives are the ones reading the blog, but, at any rate, I received some very comprehensive and immensely helpful emails concerning our car that took a little too big of a drink of water on last Friday evening. Using the great advice I got, I was able to get the car running fairly well. The engine is running well once started, but it feels like the battery is almost dead when I turn the key. I had Autozone test the battery both on the car and off the car, and it is in good shape. They also tested to see if the alternator is doing its job of recharging the battery and that seems to be working well too. Any ideas what might be causing the hesitant starting if not a bad battery?

I apologize for hijacking this blog for car advice, but I am sure Max and Wes don't mind too much. Maybe these car woes are God's way of saying it is time to buy that minivan Kate has always wanted!!

Big days

2009-06-23T22:13:00.009-04:00

Things have change a bit since I last was able to post. Almost all for the good. I will start with Wesley for simplicity sake. He had been weaning off of his CPAP apparatus (he does all the breathing, but it provides "back-up" pressure to keep his airways and lungs open) for 4 hours, twice a day. Yesterday (Monday) morning we called to find out that the doctors had decided that Wes could be off his CPAP indefinitely as long as he keeps up the good work. more than 36 hours later, he is rockin' and rollin'!! He is still very feisty, but is much easier to calm down, and if he gets real angry it is almost certainly a dirty diaper issue. His blood gases have actually looked better since he has been off the CPAP. His oxygen needs are up a bit to around 50%, but this is to be expected because the "flow" or volume of air delivered is quite a bit less than it is on the CPAP. He is putting on some good weight also, and tipped the scales at 5 pounds 10 ounces tonight!! I am attempting something new by uploading a video of Wes with the hiccups. This kid always has the hiccups...and they make his so mad, but Kate and I just melt. Hopefully this works:

Now for big brother Max. It is official...Max is off the jet ventilator and currently just on a conventional ventilator!! This is not so much a big step from a "lung development" perspective as it is a big step from a "Max's well being" perspective. This child hates the jet ventilator with all of his heart, soul, mind and strength. The story really starts on Monday morning when Dr. Gelfand was examining Max after a bad blood gas (CO2 was in the high 80s...ideal range for Max tops out at about 65). He just felt like there was something mechanically wrong with the whole ventilation system versus Max's lungs becoming less compliant. So he extubated Max (removed his breathing tube from his lungs) and found that it was full of "schmutz" to use his words. He then attempted to reintubate in Max's other nare (same thing as a nostril, they just change the words to be confusing), but it did not work. So he intubated Max orally, meaning his breathing tube goes down his mouth versus his nose. There is not a real benefit to using the nose versus the mouth or vice versa, but the rule of thumb is that noses are for breathing and mouths are for eating. Max is doing neither of those things in the traditional sense, so who cares. So the tube was put in his mouth and because they went with an oral tube, they were able to size the tube up a little to allow for better suctioning of the "schmutz" that his lungs make. Everything seemed hunky dory...until Max realized that instead of "fighting" against the jet, he could bite the breathing tube, effectively cutting off all ventilation, and actually turning the jet vent off. Yep. the jet vent would actually turn off. Stop. Completely. And the best part...when the jet vent TURNS OFF, it does not sound an alarm. Keep in mind this device is very much sustaining his life, and it does not even alarm when turned off. By the patient. A patient that is 12 1/2 weeks old and still 2 1/2 weeks from his original due date. On one hand I am proud of my child's resolve, on the other hand I am concerned about the idea that his ventilator will calmly shut off if he bites the breathing tube long enough. I suggested that they put some sort of collar around the tube that is a little more resistant to being gummed than the ET tube. Turns out the respiratory people were way ahead of me and found something that would work. Problem solved!! Kate and I realized that we had not seen Max's nose without it being covered in tape with a tube sticking out of it since maybe day 2 or 3, so it was good to see some more of his face...which is still very puffy. He weighed 6 pounds 4 ounces tonight...down 3 from the night before. We are looking for weight loss because that might indicate he is passing some of the fluid in his head. Back to the story at hand though. I called this morning to check up on the boys, and the nurse said, "oh, by the way, they took Max off the jet about an hour ago." This was not one of our regular nurses, because if it was, she would have known that we have been praying for months to have this jet vent gone. Kate got to the hospital this afternoon (thanks Sarah) and was able to hold him for almost 2 hours, and he did great. Max is till on a conventional ventilator (what you or I would be on if we could not breathe on our own), and his pressures are right on the cusp between conventional ventilation and needing a high frequency ventilator. The docs have indicated that they likely will not go back to the jet, but there is another high-frequency ventilator called an "oscillator" that they would use if necessary. This is a new piece of equipment for us, but what we do know is that there is no holding on the oscillator. There are two almost poles that come of the machine which make maneuvering for us to hold impossible. That is the worst news, so we are praying that today is the day that God had planned all along for Max to be done with high frequency ventilation. Just so that everyone is up to speed, high frequency is a more gentle approach than a conventional vent, which is why they use it in kids whose lungs are about 60% developed (i.e. born at 24 weeks). When they get bigger and hate the box 2 inches from their head pounding 360 times a minute, then it is a little less effective.

This is the new and improved and puffy Max. Can you guess which nostril the breathing tube was in? The nurses actually told us that insurance typically covers plastic surgery for kids who have been intubated through the nose as long as Max has been. That is very literally the furthest thing from our minds!! I just like to see his nose!!

I decided to take some scenery pictures to share with everyone what our little corner of the DeVos Children's Hospital NICU looks like. This picture shows the square footage dedicated to Maxwell and Wesley Wiersma, and where Kate and I and at least one nurse typically spend our time:

Our "area" is contaminated with love, so they have to put black and yellow tape around it. And Max and Wes both carry the Serratia virus, but that is not as big of a deal.

This is a picture of Wes' bed and "gear." On the right is all of his breathing related stuff. There is a humidifier (thingy at the bottom right with the digital readout) and hookups and adjustment for his nasal cannula and oxygen. The top left is the monitor that shows his heart rate, oxygen saturation and respiration (number of breaths and how "big" each breath is). Then there is the little sideways machine in the middle left of the picture that delivers his feedings over exactly an hour.

Here is what Max's bedside looks like. A little more involved from a hardware perspective. The biggest difference is the ventilation side of things. The machine on the far left is the dreaded jet vent, that currently sits there with a blank screen (THANK-YOU GOD!!!), then in the middle left is the Nitric Oxide machine, and then the conventional ventilator is next to his bed. The only other difference is that Max has one more "sideways" machine (I know they have a technical name...some sort of pump I think, any nurses out there know?) for the antibiotics he is getting for his infection.

I thought I would add some other pictures to show what an amazing group of nurses there are taking care of our boys. The first is a picture of the posters that Nurse Ashley puts together every month. They serve as great reminders of how far God has carried these two boys...and their parents:

This last picture is something that Nurse Pat made for us. It will forever grace the wall of whatever room Max and Wes call home:

First Father's Day

2009-06-21T21:37:00.002-04:00

The last few days have been pretty good. Maxwell was heading the right direction quickly following his feeding tube being moved into his GI tract. He is currently at a pressure of 42 on the jet, so down about 3 since the last post. The doctors had expected to see a decrease in the amount of goo they are sucking out of his lungs once the feeding tube was moved into his intestines, but it seems like there are gobs and gobs of secretions every time they suction him. That could be every 2 hours or every 30 minutes...doesn't matter. So the docs decided to do a "culture" of the secretions, and have since discovered the presence of both serratia and another bacteria. This was a little surprising because none of his blood work indicated that his white blood cell count was on the rise. Max has had both of these bacterias before, so that could be part of the explanation. Apparently, when he already has known colonies of these bacteria and an immature immune system, it is possible for these bacteria to sort of "over take" the immune system and the bones cannot produce white blood cells quickly enough to combat them. Long story short, Max is on antibiotics again and does seem to be a little less cheerful than he had for a few days. We pray that God will work through the medication and heal Max quicker than anyone could expect, and keep those pressures on the vent coming down. Max reached the 6 pound club on Friday night and tipped the scales at 6 pounds 3 ounces tonight. I cannot believe he actually gained weight after the diaper I changed today. I could tell just by holding him that he was working on something, but I was not prepared for what I saw. I won't even try to describe it, but it weighed 90 grams...or 3 ounces. Quite a Father's Day present buddy!!

Wes has been doing very well. He is still a very angry child, unless his CPAP is off. He has tolerated his "trials" or "weans" very well thus far, and is currently off CPAP 2 times a day for 4 hours!! It is so much fun to hold a child that can be moved around a little bit and repositioned easily. I thought Wes had given his mother a little bit of a present during a diaper change...but he left the finale for Dad. Thanks Pal...that was really special. These two kids can clear out a room. I am looking forward to the day they no longer need their mutli-vitamin, because we are pretty sure that is the culprit.

Our basement survived the 7+ inches of rain on Friday night...but I am not so sure about our car. We were heading home from the hospital at about 9:00 on Friday night and decided we needed some ice-cream from the Drenthe Village Dipper. In hindsight, the ice cream may have been a poor decision. The driving conditions off of the highway were maybe the worst I have ever seen. I could see maybe 30 feet in front of the car and the wipers were not nearly fast enough to actually clear the water from the windshield. We made it to the Dipper...and then about 100 yards from the entrance to our neighborhood, we hit a puddle that was a little bit longer and deeper than the previous 500 puddles we had successfully navigated. This was complicated by a silver Dodge Caravan straying directly into our lane in the middle of said puddle. The water actually came over the hood of our Mazda Millenia and I had just enough inertia to make it out of the deepest part of the water. The car then stalled. I was able to get it going after a few minutes, but it has not really run well since.

This is where the post ends for the casual reader and now becomes a forum post for the mechanically inclined: I took the entire air intake side of the vehicle off and dried it out. The air filter was soaked through and I know for a fact that water made it into the cylinder heads. The engine oil has some opaque bubbles in it and I checked the spark plugs and found the electrodes in good shape, but the firing end was completely white. I do not know where to go from there. The car starts and runs fairly well (I only drove it up and down the street), so would it only need an oil change and some new plugs? That would be nice. I fear the worst, however. Email me at markwiersma@yahoo.com with any tips.

Where to start...

2009-06-18T21:50:00.007-04:00

It has been a crazy couple of days, that is for sure. Sorry for the delay in getting an update on here. I will start with Maxwell. He did not have a great couple of days. When I last posted on here he had been moved up to a pressure of 43 on the jet vent. On Tuesday he had another bad gas and they moved him to 45 and then to 47 after a follow up gas. That afternoon he had another bad gas and they moved him up to 49. Tuesday was when we also found out that he had tested positive for breast milk in his lungs via a test that sounded to me like it was called "lippy lappy macrophage," but I am guessing that is not phonetically correct. That meant that his feeding tube needed to be moved past his stomach an into his intestinal tract. They do his by blowing air down his feeding tube to force the valve at the bottom of the stomach open and then feeding the tube further down his throat. They can then test the pH of the liquid they aspirate from the tube to see if they are in the intestines or still in the stomach. Once the tube is positioned correctly, the valve at the bottom of the stomach closes and no more refluxing. We did not want Max to have to go through this, but we're in some way relieved that maybe the reflux is why he has been backsliding on the vent so much. We were hopeful of a quick turnaround on the vent pressures. What we got was a bad gas and the move to a pressure of 49. I will recap what the blood gas looks for. They primarily look for the pH of his blood and the CO2 count. An ideal blood gas is a pH between 7.35 and 7.45 and a CO2 in the 40-50 range. Most often if the CO2 is too high or too low, the pH will move accordingly. Too much CO2 makes the blood more acidic and the pH will be below 7.35, too little CO2 and the blood will be more alkaline or higher than 7.45. His gas on Tuesday night was 7.22 and 89, and that is why they went to a pressure of 49. His gas three hours later (this kid gets his foot pricked a billion times a day) was 7.55 and 36...which is WAY too good. We were excited about that change, but then he had a terrible gas again...back to 49...then good gas...down to 48...then okay gas so no change...then really good gas again, and now we are at 45. This is over a few days, but I think you get the general drift of how this delicate balance works. We are glad to see 45 again, and just the general move in the right direction. We are praying and praying and praying that this is the first of MANY good gases and the stepping off point towards coming off the jet vent for good. We are trying not to get too excited...but we want God to know that we are cool with that plan if He is!! After they moved Max's tube into his GI tract, he has been a little "plugged up." So much so that Nurse Alaina had to give him a little tiny piece of a child's suppository to get things moving. It did the trick, and she described the fallout as something similar to molten lava. Can you believe how much we talk about bathroom related topics on this blog? And to hold them in such a good light? Very bizarre. Max is still quite puffy, but his follow up head ultrasound showed no change from the last, just a bunch of benign fluid around his head and maybe just a touch inside his skull. He weighed in at 5 pounds 12 ounces tonight. Here is an up-to-date picture with his "rhino" outfit on:

Wes has had a big couple of days too. The docs actually okayed him to start "trials" off CPAP!! So he did his first hour long trial (or "wean") on Tuesday afternoon, and then again on Tuesday night. He did great and we got some good pictures of him. This kid makes me laugh...a lot.

That is the face of a child who loves his new found freedom!! He still needs to have oxygen and usually has a nasal cannula on, but Kate wanted a few pictures with just Wes...no other "gear." He is so wide awake when he gets to do his trials, which have been going so well he is up to twice a day for 2 hours, and it is just a riot for us. The nurses say that he keeps his eyes open so that when they try to put the CPAP back on, he knows when to retaliate and throw a fit. This child is not yet 37 gestational weeks old. He weighed 5 pounds 1 ounce...welcome to the 5 pound club little buddy!!

Today was the nurses favorite day...treats from Grandma Wiersma day!! I think I slipped a disk carrying the bag from the car to the NICU, and when I got there, the nurses were so excited. They said that all nurses are pigs. I said that I think all nurses are heroes. They said, "sure, whatever...now hand over the treats." The bag was quite heavy and a group of nurses said that they had to weigh if to see if it was a new record. So they found a scale...and it was!! 19.25 pounds of pure delight. Thanks Mom...we are officially the most famous people in the NICU. I had at least a dozen nurses tell me that they love you today...and so do we!!

Why?

2009-06-16T11:09:00.007-04:00

Mark sometimes refers to this as his "free therapy," so I thought I would give it at try.

This morning Mark called the NICU (as he does every morning) and got the update on how the boys night went. As usual Wesley was exactly the same. Max was a different story. Over night Max has gone from 43 to 47 on his jet vent. His settings haven't been that high in weeks.

I wish I could say that I am handling this well, but that would be a lie. I am officially in the "why us" stage of all this.

Why did God make our babies come so early?

Why did God take my Mom away when I feel like I need her the most?

Why doesn't God heal Max's lungs? He is so little, he should't have to fight this hard.

Why do we have to sell my house after we've worked so hard?

When is all this crap going to stop?

Mark is great at not looking at the bad, but looking at all this as a sort of opportunity. He is soooo strong. He doesn't ask the questions that can't be answered. It is one of the MANY things I admire in my husband.

People tell me that God is making me strong. I don't feel strong, I feel weak; and scared, angry, exhausted, sad.... All I want is for my sons to be heathy--not even healthy, just on the road to getting healthy.

I have hit my breaking point. I knew this road was going to be difficult, but for some reason I thought it was going to be shorter (or something).

I'm sorry to be so whiny and negative. We do have many things to celebrate, they just seem to get covered up by the bad. Mark and I are so thankful for our amazing family, friends, and brothers and sisters in Christ. We often talk about what we did to deserve such unbelievable people surrounding us. Thankyou for all your prayers, card, gifts, and words of encouragement. They are all treasured very much.

Hopefully Mark will write a post tonight with good news. Until then thanks, and have a great day.

Kate

Arrrrggggghhhh

2009-06-15T21:19:00.002-04:00

80 days of this? I am not sure if that went fast or slow. Depends when you ask me. Maxwell continues to befuddle the masses. He showed some good improvement yesterday and had some very good blood gases that led to the jet vent being turned down from 41 to 39. That was great news...finally some changes in the right direction. Then today came. After a number of bad gases and changes to his vent pressures, Max is currently at a pressure of 43. That is as high as he has been in at least 4-weeks if my memory serves me correctly, and some times it does not. Dr. Gelfand, a doctor who has been following the boys since day one, said he is not terribly concerned with the "small changes." He said bad gases can be very mechanical and not indicative of actual regression, meaning when they draw Max's blood can have a big impact on the results. If he is steaming mad and clamping down on his ET tube...his gas likely will not look too good. The problem is that he knows when it is time to prick his foot, and he does not like his foot pricked, so he retaliates. Dr. Gelfand did say the trend as of late is mostly up, however. He ordered a culture be done on the junk they are sucking out of Max's ET tube. He does not think Max is sick, but wants to test the junk to see if there is any food residue in his lungs. Essentially, he is wondering if Max is refluxing and breathing the milk into his lungs. This would not be a good thing, because the remedy if he is having some reflux is to push his feeding tube further into his GI tract, actually through his stomach and into the intestines. This comes with a lot of risks and likelihood of surgery and re-training Max how to eat using his stomach in the future, so that does not sound like the alternative we are praying for. Dr. Gelfand said that Maxwell is a mystery to all nine doctors in the neonatal practice. His blood work does not show any signs that he is fighting an infection, he does not physically appear to be sick, he is more alert, opens his eyes a lot more...they just are not sure why his lungs do not seem to comply with the vent. It feels like the bases are loaded for God to step in and hit a grand slam that medicine cannot explain. That sound good to you God? My patience is worn thin. My energy level is down. Kate and I have decided to sell our home following the loss of Kate's job, and the stress of what needs to happen along those lines seems like too much. Will You begin right where I end?

Wesley had a normal day for Wesley. We had a new nurse today named Erin. She was across the nursery and Wes began to desat (his oxygen level dropped), which happens regularly. Both boys do this a lot, but almost always bring their saturation back up on their own. After a minute or so his saturation did not come back up, so another nurse poked her head in to see how he was doing. She said to Erin, "Where is his CPAP?" She replied, "It is on his face, where else could it be?" It was not on his face. In a fit of anger against this thing that sticks up his nose all the live long day, he got a hold of it, pulled it completely free from his face and the tubes, and threw it down to the foot of his bed. The nurses could not believe it. The kid is negative 4 weeks old and I am scared about what he will accomplish tomorrow. This child is going to be his Mother's undoing and a source of great pride for his Father.

I forgot to mention that the boys had eye exams last week Tuesday, and the doc said their eyes are still immature. That is a good thing, we found out. They are at the gestational age where if there was a problem emerging, they would likely be able to "see" something by now (no pun intended). They are a long way from "out of the woods," but thus far there is no evidence of the ROP disease that can lead to retina detachment and possible blindness.

By the way, does anyone know when these stupid white fuzzy things go away? I have been averaging 4 Claritin D 24-hour pills a day and still cannot get a decent night of sleep!!

Also, Max has a head ultrasound tomorrow to see if any of the fluid build up in his head is also building up under his skull. He had one about a weeks ago that showed minimal, benign fluid inside the skull, so we are praying for either no change or improvement there.

Backslide

2009-06-13T21:50:00.003-04:00

The week as a whole had been going very well, but the last 36 hours or so have not been real great for Max. His blood gasses have not looked great and they have turned his vent pressures back up to 39 from 37. We were also surprised to see that they started Max on the Inhaled Nitric Oxide again. We thought that machine was finally out of our lives, but its ominous structure resides by Max's bed once again. They docs put him back on the INO because his oxygen needs had climbed from around 45% to 55-60%. He is on a dose of 10 parts per million (about half of what he was on for a long time), and his oxygen needs did come back down into the high 40 to low 50% range. The nurses continue to get a lot of goo out of Max's ET tube as well, which is kind of good, kind of not. It would be good if he was showing signs of improvement and it felt like getting this junk out was really helping, but right now it feels like he is manufacturing the goo at a faster rate than they can suck it out. Every time they suction him, more goo takes the place of the old. In my opinion, his head does seem to be getting a little smaller, but Kate does not agree. Max did lose about an ounce (25 grams) last night and now weighs 5 pounds 2 ounces. And at this point, a little weight loss is a good thing.

Wes is unchanged. Which is starting to get a little concerning. He has been on the CPAP at a pressure of 5 and 40% oxygen (not 39%, and not 41%) for about 5 weeks now. The doctors are not concerned, Kate and I just hoped his progress would continue at the pace it was going. It has been a real blessing to have him be so stable, however, and we love that we can pick him up and hold him, put him in his bouncy seat. etc. In fact, he and I took a nice hour long nap together this afternoon:

Wes has put on a few ounces as of late too, and now weighs 4 pounds 9 ounces.

We sing "Sanctuary" an pray with each of the boys every night when we leave, but were not able to last night. A little girl that has been in our nursery for about 10 days was not doing well. Kate was in the "Mother's Lounge" and my parents and I were watching Wes checking out the world from his bouncy seat. Then I heard a nurse say, "I will get the crash cart!!" That is not a good thing. I got my parents out of the room and started putting Wes back in his incubator. I over hear things like "I will do chest compression and you work the bag," which are all terms I have heard on ER before. We decided it was time to take off, and we were not able to get back into the nursery to pray with the boys. On our way out of the hospital, we passed the little girls parents, who had obvioulsy just got "the call" that all NICU parents fear the most. When we got to the nursery this morning, there was an empty incubator where Syriana (the little girl) had been. Our hearts are just broken for her parents. We do not know all of the details, but we know that she was born at about 28 weeks, and had been doing well earlier in the day. It was a reminder of both how fragile these little kids' lives are, but also how much Kate and I have to be thankful for. It is really easy to get caught up in the little details, and while it is true that both Max and Wes' lungs are very very sick, we have been blessed by the boys overall health. We pray that Syriana is now sitting on Jesus' lap, and that her parents knew Jesus as their personal Savior and can grieve with Hope.

Here's the pic

2009-06-12T21:59:00.000-04:00

I don't think the other picture worked...hopefully this one does!!

Some quiet days

2009-06-11T21:56:00.003-04:00

I am happy to report that no news has been good news this week. Maxwell has now been off the Inhaled Nitric Oxide for nearly 4 days, and is doing great. His oxygen needs have been consistently in the 45% range, which is really good considering his body is now responsible for absorbing the oxygen from his lungs without the aid of the INO. His blood gasses have really been quite good and they have been able to adjust his vent pressures down to 37 from 40. We are happy with the progress, and Max just seems happier and healthier than he has in a while. He has been opening his eyes, following the sound of our voices, he appears to make some significant breathing efforts on his own (despite the ventilator) and perhaps the best part is we have been able to hold him a number of times in the past week. Max has been doing very well with his feedings (and poopings) and has broken into the 5 pound club!! 5 pounds 2 ounces to be exact. This is likely still overstated because of the edema in his head, but we will take it!!

Wes continues to be Wes. Kate and I often talk about how he is going to be our angry child. Then again, I may have been a more angry child if my life has started with as many hurdles as these little dude have had to face. His fiestiness continues to be a source of stress for his nurses because he can quite easily pull his CPAP apparatus of his face...and he does this regularly just to keep them on their toes (way to go buddy!!). His oxygen needs are still in the 40% range and he just cannot seem to make any moves in the right direction from that range. My personal theory (I am not a full doctor yet) is that his weight gain is a little behind and if he could pack on some ounces and hit a growth spurt, maybe his lungs would grow a bit and have a little more surface area with which to exchange oxygen into his blood stream. This theory is not backed with any actual medical facts, but it sounds reasonable enough to me. He tipped the scales at 4 pounds 5 ounces last night, so he is heading the right direction. He had a little issue with a feeding the other day and spit up some of the breast milk. The docs have moved him to a compressed feeding over 1 hour instead of the "gravity" feeding that he had been getting. They are not too concerned with this event since it has only happened once, but do not want to set him back from a nutrition stand point, hence the compressed feeding. Max is actually on a "drip" feeding which simply means his food is delivered constantly. This is largely due to the fact that he is still on the jet vent.

Kate actually got to hold both the boys at the same time the other day, albeit only for a minute or so. I am bummed I wasn't able to be there, but it really warms my heart to see my twin boys near each other for the first time in almost 11 weeks. I never thought that the first picture of my wife holding our boys would include $100,000 worth of medical hardware!!

Better day

2009-06-08T21:37:00.002-04:00

Today feels like a better day. I am not sure why exactly, it just does. Max is actually up a bit on his vent pressures to 40 from 38, but the nurses and doctors felt that is to be expected because he is now off his Inhaled Nitric Oxide. I didn't think that was a very big deal, but the nurses have all said they are so proud of Max for making it as long as he has off the INO. They took him off it completely this morning at 6:00 A.M., and he had the same night nurse tonight as he had last night (Ashley), and she jumped up and down when she walked in the nursery and saw the machine was still off. She said the pressure changes are minor compared with being off the INO for this long. I guess I didn't see the INO as being a big deal, it just helped the transfer of oxygen into his blood via his lungs. Obviously that is a big thing, but he was doing that on his own before they started him on the Nitric. I guess it is a good sign of improvement that he is off the INO and still doing well. His oxygen needs are up to around 50%, but that is to be expected without the Nitric. He is still really puffy though. His neck ultrasound today essentially said he has Edema, which is not news to anyone. It is good news that the fluid is not anything serious and the ultrasound did report that his glands in the neck and chin area look good. It is going to be a wait and see type thing...our favorite. I think Kate and I just selfishly want it to go away because we almost feel like we don't know what he looks like. We have also noticed that he has a hard time opening his eyes, and we love to see him when he is awake. According to nurse Ashley, awake time for both boys is around 2:00 A.M. Please pray with us that God will change their schedules!! That will be so hard on Kate when they come home!! Max also had a heart ultrasound and the results from that looked good. Everything looks normal and his pulmonary and systemic blood pressures are what they would expect for a little guy like himself.

Wesley is just cruising along. He already scoots around in his incubator to the point where he either has to be swaddled better or placed at the bottom of the bed. The doctors are going to add a few calories to his feedings because he has not been gaining as much weight as they would like him to. I suggested that it is likely because he has been burning so many calories working out his neck and back muscles. I thought that was a somewhat funny comment because he was arching his back to the point were he almost rolled over when I said it...but there was only crickets. These people need a sense of humor.

As of tonight, Maxwell weighs 4 pounds 14 ounces and is 17 inches long. His weight is certainly overstated because of his Edema, but we are very proud of him none-the-less. Wesley tipped the scales at 4 pounds 4 ounces and is 16 and 3/4 inches long. Those are starting to sound like actual baby measurements. They are both getting a vitamin supplement in their feedings that is designed to help them start making their own blood. They have both received numerous blood transfusions over the last number of weeks because their bodies do not make new blood as fast as fast it is drawn out of their bodies for the 1,000s of tests that are run each day. But now that they are "big boys," they want to get their bodies producing blood on their own, so that is what the multi-vitamin helps with. What it does not help with is the odor of their gas and BMs. I had my first genuine gag reflex while chanigng Max's diaper tonight...and it was not cool at all. All of the nurses in the nursery could smell it, which is impressive on one hand...but a little scary on the other hand. My siblings have all told me that the diaper changing doesn't get too bad until they start eating pureed peas and squash...they lied to me.

I want to say a big "thank-you" to everyone who has taken the time to post comments on this blog. It continues to be a huge source of encouragement and Godly advice. Some days it feels like we are going through this alone, but the posts from family and friends remind us that we are not...and that is an amazing feeling. So thank-you. Your words have meant so much to Kate and I since even before the boys were born, and we plan to one day print all of these posts off, including the comments, so that we can share with our boys how many people cared about their well-being and prayed for their health. What an amazing testimony you have all been. Jesus has used you to speak to Kate and I...to re-energize and revitalize our spirits and our will to face another day. Thank-you.

...and not so good days

2009-06-07T21:34:00.002-04:00

After a few days of stability and improvement for Max, things took a bit of a turn on Friday. Max's blood gas on Friday morning was really bad. The doctors had been talking about "sizing up" his ET tube (the one that goes up his nose and down his airway into his lungs), and decided that it was time to do so. So Max was extubated and they found that his other tube was quite plugged up with "junk." Max also made some attempts to breathe on his own while he was extubated, and they said that is very encouraging. Max was then intubated with the larger size ET tube (it looks a lot bigger to Kate and I then the last one), but things didn't really improve. We were hoping that with the larger tube and that fact that the last tube was pretty plugged up, that this was going to be just what Max needs to get off the jet vent and get things heading the right direction. Quite the contrary. He is currently at a pressure of 38 on the jet...which is about where he was 5-weeks ago. It just feels like we have taken a big step back. His oxygen needs have been pretty low still (roughly 30% on average) and they have weened his Inhaled Nitric Oxide down from 20 parts per million to 2, so that is all very encouraging. It is just hard to see his vent needs increase when he was so close to getting off the jet altogether. We saw a glimpse of how much happier and calmer he is on just the conventional vent without that constant pounding in his chest. We understand that Max has some gas trapping in his lungs and the jet is the best way to open those areas of his lungs that are "closed off," but we certainly hoped that it would have done its job by now. Max is still really puffy, particularly in his head, so they have ordered a neck ultrasound for tomorrow to see if there is something causing the retention of fluid in his head. They have already done a brain ultrasound and that actually looked really good, which meant that all the fluid is on the outside of his skull. He is on the highest dose of a diuretic called Aldactazide that is designed to help relieve him of excess fluids, but it does not seem to have done much for his head. We are praying that if the ultrasound reveals anything that it will be a very treatable issue. The unknowns are hard to deal with. At least with infections, they can give them antibiotics and then we wait. But these other mysteries get really hard to "wait and see" what the cause is or if something will help, etc. My brain works best when there is an identified problem and a mapped out course of treatment...the medical mysteries are hard for me to deal with because I feel so helpless. I just want to switch places with Max...to give him a break for a little while. We hate that we have gotten to the point where we say, "at least they won't remember any of this." We just want God's timing to be our timing right now. Would healing Max's lungs really mess up Your plans so much, God?

Wes continues to be very stable. His oxygen needs are relatively unchanged (right around 40%), so the doctors are not going to let him do any "off CPAP" trials. We got to give Wes his third bath today...and if that child's strength and will continue to grow at the same rate as his body...Kate and I are in trouble. That kid is going to break his way out of his crib in the near future. He weighs just over 4 pounds and Kate could hardly control him while I shampooed his hair.

I heard this song on the radio a few weeks ago called "Savior Please" by Josh Wilson, and I feel like the lyrics completely embody the prayer I have peen praying since the day Kate went into the hospital on March 10:

I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me