Tis the Season!

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

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!!!

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

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

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!!!

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

886FF053-8F7E-DB8E-8FD2-22F500A01475

1.03.01

GREAT Changes!

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!!

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

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

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

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!

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!!

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?

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.