Wiersma Family Blog

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....


Sunday, June 28, 2009

Role Reversal

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:

Thursday, June 25, 2009

90 days

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!!

Tuesday, June 23, 2009

Big days

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:

video

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:




Sunday, June 21, 2009

First Father's Day

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.

Thursday, June 18, 2009

Where to start...

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!!

Tuesday, June 16, 2009

Why?

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




Monday, June 15, 2009

Arrrrggggghhhh

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.

Saturday, June 13, 2009

Backslide

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.

Friday, June 12, 2009

Here's the pic


I don't think the other picture worked...hopefully this one does!!
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Thursday, June 11, 2009

Some quiet days

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!!

Monday, June 8, 2009

Better day

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.

Sunday, June 7, 2009

...and not so good days

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

Thursday, June 4, 2009

Good days

Wow, where does the time go?  I feel like I just posted an update, but I was reminded today by a few people that I have not.  I am happy to report that no news is good news!!  No big changes over the last few days, but that is okay.  Max is still pretty puffy, but he seems like he is feeling better and his oxygen needs have been quite low.  He has been in the 27-35% range for a few days now, and even got as low as 21%, which is room air!!  I cannot remember if he was ever on room air, and if he was it was not for long.  He is still on the jet vent at a pressure of 32.  The best part is that he has just been stable.  He went through a few weeks of wild swings which were both good and bad swings.  I would say that we as parents prefer the slow but steady approach in hindsight.  They have started to ween Max off the Inhaled Nitric Oxide as well.  The INO helps the transfer of oxygen into the blood by opening up the blood vessels in the lungs.  Max was on a dose of 20 parts per million for many weeks and they currently have him down to 10 parts per million and there has not been a noticeable increase in his oxygen need.  The INO does not have any negative side effects, but the docs want to get him off of it if possible because the INO is not something they send home with the kids.  I don't want that statement to come across as an indication that the docs think that is going to be anytime soon.  It is possible that Wes would come home around their due date (July 11), but Max still has a long way to go and will likely be in the NICU for a number of months yet.  That is what the doctors expect anyway, but Kate and I know that Max has a lot of fight in him and if he can stop getting infections we feel like he could start making some good progress.  If we have learned anything through this journey, it has been that God's timing is perfect.  That has not been an easy realization to come to with the boys being born 16 weeks early, Kate's Mom passing away 5 weeks after their birth, and now with Kate losing her job.  That all seems like pretty crappy timing if you ask me.  But the things that I think Kate and I will remember and treasure is that Kate's Mom got to meet our boys, Kate was able to spend a lot of her mother's last days at her side and has since been able to spend her time with our sons.  I can tell you that if it was up to me, none of these things would have happened...but a lot of special, life changing moments that have taught us infinitely more about what it means to be a son and daughter of our Heavenly Father and a brother and sister in the Body of Christ would not have happened either.  That is why His timing is perfect.  Dear friends of ours posted a comment on here a few days or weeks or years ago (my sense of time is ridiculously messed up right now) about how sometimes the bigger the mountain we have to climb in life, the better the view on the other side.  A lot of times we have wondered how much deeper the valley can get, and just when we think we are nearing the top we realize that it was only a foothill in our journey up the mountain.  But along the way, God has provided us with a unique perspective.  A perspective on how He cares for us.  In the span of weeks we experienced Max and Wes' lives beginning months too soon and Mom's life ending years too early.  The only constant in those two events was God.  I always knew in my head that God was "bigger" than myself (and that is saying something!!)...but I now have a glimpse of how big and powerful He really is.  Nothing is outside of His control...His perfect timing, and I love that about Him.  He is God and I am not, and now I know why.

Back to Max.  With Max being quite stable,  means that Kate gets to hold him.  She has done skin-to-skin or "kangaroo care" with Max for three days in a row.  One of the nurses (Emily Geerlings) that has literally been caring for the boys (and us) since the day they were born said that the last three days have been the three best consecutive days she can remember for Max (and Kate too!!).  Wes continues to be himself.  Still on his CPAP, but they have resorted to a head band over the traditional wool cap because he pushed his way out of his stocking cap three times in the span of a morning.  He is rocking more of a LeBron James look now.  Both of the boys are now old enough to regulate their body temperature a little better, so the tops on their incubators have been raised so they are at "room temperature."  They still need to be clothed and swaddled to keep them warm, but Kate and I really like it because we feel like we are closer to them in a way, versus talking to them through a plexi-glass enclosure.  Wes even spent a bit of time in a bouncy seat..which I found absolutely hilarious, so I posted a picture of it below.



He appears to be a little hesitant of this new environment!!

Grandma Wiersma got to hold Wes for the first time last night too, so I thought I would get a picture of that on here as well.  My Mom loves the lime light, so I know she will appreciate this.



While all this commotion is going on, Wes' big brother Max just saws logs.  We hope this is a trait that continues for a long, long time!!!



Monday, June 1, 2009

Hold fast

The boys have had a pretty good couple of days.  There have not been any huge changes to speak of.  Max is still at a pressure of 33 on the jet vent, but his oxygen needs have come down quite a bit...even into the 30s for the better part of the last few days.  He is getting albuteral and palmicort, which are both very common inhaled treatments, or so I am told.  They seem to be doing something because his oxygen needs are down so much, but they certainly don't make him happier.  It doesn't take a rocket scientist or even a senior commercial credit analyst to tell how much Max hates the jet vent.  He is now big and strong enough to actually clamp down and close his ET tube to momentarily stop the thumping in his chest.  He does this until his oxygen saturation drops so far that he gets faint and his body relaxes and allows the ventilator to help him breathe.  Once he regains his strength, he does it all over again.  It so tough to see him struggle against the very thing that is sustaining his life. They have upped his dosage of Valium to keep him more docile, but we don't like that either because he just doesn't act like himself.  We are continually reminded that he just needs time...and that is fine, we will keep coming to see him everyday, keep singing Sanctuary with him and keep praying with him...but we just want to know he is somewhat comfortable and it is so clear that he is not.  Please pray with us that the Great Healer will touch little Max's body and help to grow and develop his lungs so that he no longer needs to be on the jet vent.

Does this kid (his new nick name is Puff Daddy) look happy to you?

Wes is doing well.  He is still on a CPAP of 5 (that is the lowest setting they use on the CPAP), but his oxygen needs have actually been climbing a little bit into the higher 40% range.  No one seems too concerned about this, but it does mean that he doesn't get to try breathing with out the CPAP.  The doctors indicated that he needs to be in the 20s before they will do regular trials off the CPAP.  That is a bummer for us because I am convinced he would be a happier child without those prongs shoved up his nose...pretty weird, huh?  What kid doesn't like stuff shoved up his nose?  He has been very stable overall though, so we have been able to hold him everyday.  Grandpa Blauwkamp even got to hold him for a little while today.  Those of you that know Kate's Dad will likely know he is afraid of small children, but between Kate and nurse Lindsay, he didn't have much of a choice.  Once he found out that it is good for the boys to be held, he got used to the idea...and maybe even liked it a little bit.  I have included a picture below as proof that he actually did hold Wes:


Perhaps the biggest news of the weekend had nothing to do with the boys.  We found out that Kate no longer has a job.  Many of you know that Kate has been a nanny for more than a decade now, but has been with the most recent family for more than 5 years.  Kate loved her job very much.  I think God is really impressing upon us that He is our provider.  That is something that I have such a hard time with.  We desperately want to seek God, to follow where He leads, to trust that He will provide...but that is so difficult some times.  Maybe He hasn't fully convinced Kate and I that we are not in control.  I have often wondered what 2009 will look like in a few years.  Will it be a good year or a bad year?  It seems to change from day to day.  I feel like I am whining so I am just going to stop...but for all of you faithful and amazing prayer warriors that have lifted up my wife and our sons in prayer...if you have an extra moment, please pray that God will calm our anxiety and reveal His plan for us.  Pray that we can hold fast.  We are willing to go where God leads us, whatever it may be...but the uncertainty of knowing where that is seems like too much to handle along with all of our concerns for our sons.  God has been faithful throughout the last 3-months.  He has calmed the storms when I thought I had not only lost my two babies but my wife as well, He has carried us through so many nights wondering if the boys were going to survive, He holds us in His arms as we grieve the loss of Kate's Mom...so we know with our hearts that this is not too big for Him.  Sometimes it is tough for me to believe that with my head, though.  I just want to know that we will be able to provide for Max and Wes.  Everything else seems so meaningless right now.

I thought I would put one more picture on hear as kind of a "scale" shot to show how big the boys are.  As you can see...Wes is at least 10 times smaller than I am!!  Notice the stylish bright yellow gown that I am forced to wear because it is the only size that allows for a full range of motion.  The nurses call me a "big ray of sunshine"...and I don't think it is a compliment.