Wiersma Family Blog

A glimpse into our lives as a family with micro-preemies. Our twins boys (Lovingly referred to as our Miracle Men) were born almost 16 weeks early.

Our journey continues when our son Max was diagnosed with cancer at the age of 3. This is his story....

Thursday, July 30, 2009

Surgery #4 in the books

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!!

Wednesday, July 29, 2009

Another Surprise

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.

Tuesday, July 28, 2009

Family Time

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!!

Sunday, July 26, 2009

So far, so good

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.

Saturday, July 25, 2009

Come on Buddy!!

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.

Thursday, July 23, 2009

Still chuggin'!!

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):

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

Wednesday, July 22, 2009

Guess what...

...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.

Sunday, July 19, 2009

Great Weekend

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!!

Thursday, July 16, 2009


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.

Tuesday, July 14, 2009

Another successful surgery!!

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.

Monday, July 13, 2009


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.

Sunday, July 12, 2009

Due Date

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!!)

Wednesday, July 8, 2009


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.

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.

Saturday, July 4, 2009

New digs

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.

Wednesday, July 1, 2009

Slow but Steady

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.