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....

Saturday, May 30, 2009

Crazy times

Wow.  It has been a too long since I have been able to post an update on here.  The boys have had a pretty good week.  I will start with Max.  As I mentioned, he has serratia or pneumonia or some sort of infection that is causing him to be pretty sick.  He is still really puffy, and the doctors said that is a common reaction to being on the jet and being sick.  He had another short lived sting off the jet on Tuesday I believe, but he has been back on it since Wednesday.  He seems to finally be a little more stable in the last 24 hours or so than he has been for the last week.  Every time we would call to see how his blood gases looked, it seemed like they were either too good or terrible, so they were constantly making vent changes up and down, then the next gas would show that the changes were too much so they would turn him back up.  After a few days of the pendulum swinging too far in each direction, it feels like we have finally found a comfortable range for Maximus.  Right now he is at a pressure of 33 on the jet with a rate of 360 breaths per minute, and the conventional vent is giving him 6 breaths per minute.  Max has also gained a lot of weight in the last week...he tipped the scales at 4 pounds 4 ounces last night!!  That is too much weight gain, but the doctors believe it is just retained water from being sick and puffy.  He actually lost 30 grams last night (about 1 ounce) and that is a good indication that maybe he is starting to feel better.  His oxygen needs continue to be pretty low for him...in the 45-55% range depending on his mood.

The picture below shows Max in his favorite position...his belly.  I know that is a big "no-no" for infants, but these kids get whatever they want.  You can see he has an IV in his left arm and they strap a foam board to that arm so that Max doesn't bend it at all.  The IV is to deliver his antibiotics.  You can also see the size of the scar from his PDA ligation surgery...and that was when he weighed about 2 pounds!!

Wesley has had a good week.  No real changes for him.  Kate and I gave him a bath on Wednesday evening, and he seemed to like that okay.  This is not a bath in the traditional sense, but more of a sponge bath using wet cloths (sponges harbor bacteria you know) with a little soap to clean him up and rinse him off.  What he really seems to like is having his CPAP apparatus off his head.  He hates that thing!!  He did do one trial off the CPAP on Thursday morning and he did great.  The nurses told us they would start weening him off of it one hour at a time twice a day...but then the doctor put a stop to that saying his oxygen needs are to high.  He has been in the 40% range pretty consistently with a few days in the 30s and a few in the high 40s.  The doctor said he needs to be in the 20s before they start to ween him.  That was a bummer for us, because Wes does so great with that thing off his head...and we love to see his face!!  But we are most concerned about what is best for him long-term, not our own selfishness.  Wes has had some decent weight gain too...he is up to 3 pounds 14 ounces.  He had been "backed up" for a few days and we were getting a little concerned that something might be wrong with his digestive system. I think he had gone more than 3 days with out a stool...and then on Thursday night (a little present for his parent's 5-year wedding anniversary) he had a diaper that the nurse described as "spectacular in a bad way."  Atta Boy!! 

This is a picture from bath time on Wednesday.  As you can see, Wes does not know how to feel about this silver camera thing we stick in his face all the live long day.  I titled this portrait "Nude and Confused."

Monday, May 25, 2009

Not again...

Happy Memorial Day everyone.  Hard to believe the "long" weekend has already come to a close.  Kate and I got some planting and weeding done...thanks in large part to Kate's Aunt Louise and Aunt Gwen.  I really should not have said "I" in that last sentence...I did very little weeding and no planting.  I did clean the grill though, whatever that is worth.  Anyway, other than a few hours outside, we spent the lion's share of the weekend with the boys.

Wes had a very good holiday weekend.  The big change with Wes is that they went down to a pressure of 5 on the CPAP.  That is a big step because that is the lowest they go with the CPAP, so next step would be breathing all by himself with maybe just a little oxygen.  If he continues to do well with the pressure of 5, they may start trying him off CPAP for an hour at a time by the end of the week. 

Max did not have such a good weekend.  He went back on the jet vent on Sunday morning.  That is not a huge deal, the jet vent just works a little differently than a conventional vent, and it works better to get rid of CO2.  When they switched him back to the jet his pressures were at 35.  This was too much, and by the time we got to the NICU on Sunday morning, he was down to 25.  That was great news...but then his blood gases started getting bad.  He had a few gases where his CO2 was in the 90s, which is WAY too high.  They have made a number of changes over the last 36 hours or so, all of which were to higher pressures.  He is currently at a "top" pressure of 32, but this will be adjusted upward based on a gas that nurse Ashley pulled at 8:00 p.m.  which showed his CO2 in the 80s.  The other disappointing news we got with Max is that he has pneumonia...again.  We can just tell he doesn't feel well, and he is starting to get really puffy again.  That poor little guy has been through so much.  It seems like every step forward is a huge step, followed by a bunch of little steps back.  I would say that his overall trend is slightly in the right direction, but it certainly feels like we are treading water a bit.  I just want to take it all away from him.

Kate and I continue to struggle with celebrating Wes' off the charts status while his older brother continues to be on life support and very sick.  I don't know if that is just us or if that is human nature.  We know that God has a different road planned for Max than He does for Wes...it is just tough for us as parents to walk both paths simultaneously.

Here is an update on their stats:
Wes weighs 3 pounds 9 ounces as of Sunday night and is 16 inches long
Max weighs 3 pounds 11 ounces as of Sunday night and is 15 inches long

Saturday, May 23, 2009

8 weeks!!

Hard to believe those little stinkers are almost two months old.  They have grown a lot in two months.  Last night, Max weighed 3 pounds 10 ounces...up from 1 pound 10 ounces on 3/27/09 when he was born.  Wesley weighed 3 pounds 7 ounces...up from 1 pound 9 ounces at birth.  They just look like little guys now!!  Kate and the nurses have started to use the boys as runway models for preemie outfits.  I personally think it is a hassle when it comes time to change their diaper...but they do look awfully cute in them!!  I have posted a few pictures below:

The following picture is Maximus in a striped green and blue ensemble.  Notice how loosely it fits him and how long the sleeves are...which is why they are doubled over themselves (bound to be this summers latest fashion!!).  Max is also "playing up" the baby thing by sucking on his thumb. (I do not know why this text turned orange...but luckily it is one of my two favorite colors)

The following picture is Wesley in a vintage 1920's "old man" type bathing suit thing in blue and white stripes.  It is easy to tell by the look on his face and his tongue sticking out that he is loving his new wares!!

The boys have been doing pretty well over the last few days.  Without a doubt, the biggest change in the last few days is that Max is no longer on the jet vent, just a conventional vent.  Apparently the respiratory therapist was suctioning out Max's ET tube (the tube that goes down into his lungs), and something "broke free" in there, and the jet vent was working too well.  They turned down the vent pressures by a lot, and within a few hours or so they ended up getting rid of the jet altogether because it was just making Max uncomfortable.  That was 2+ days ago.  The nurses and doctors said they did not expect him to stay off the jet, and he has already exceeded their expectations.  Being off the jet is a step in the right direction, but Max is on about as high of pressures as they would go before putting him back on the jet.  The jet is just more gentle at higher pressures.  Currently, he is at a pressure of 28, compared to 39 on the jet.  We have learned that this is not an "apples to apples" comparison, so it is tough to really gauge how big of a step this is.  The docs are certainly impressed that his blood gases continue to look pretty good, but it sounded like if he has one or two bad gases in a row, it is very likely they will put him back on the jet vent.  He had a bad gas last night (CO2 of 76), and we went to bed thinking he would be back on the jet when we called this morning, but the Gas looked good (CO2 of 66).  They really want his CO2 in the 60-65 range.  Anything lower than that and they will likely lower his settings.  Anything in the 65-70 range and they will probably wait, and typically anything over 70 means an increase in settings is likely.  So we wait.  Max;s oxygen needs have been in the 50-60% range, which is still an overall reduction and trend in the right direction according to my line graph.  They have also started to "compress" Max's feedings over 2-hours, were when he was on the jet vent, it was a continuous drip.  The docs prefer that kids on the jet not have a full tummy because the pressure of the jet can cause reflux.  Now that he is off the jet, they are ramping up the timing in which he gets his meals.

The only real change with Wes is that he is getting his meals via "gravity gabage" (I think?), so it takes about 20 minutes to give him a full feed.  He has been on a 1 1/2 hour compressed feeding about a week ago, so it is very encouraging that he is tolerating this quicker feeding well.  He is still on CPAP with a pressure of 6 and his oxygen remains at 40% with almost no variation.

Other than the vent change, the other highlight of the last few days is that we got to hold the boys at the same time again, only I got to hold Max this time.  This is the first time I have held him outside of the incubator, and he did very well.  He was a little ornery for a few minutes, but then he fell asleep for a good hour or so.  Wes did the same with his Mom holding him.  It is so cool to both be holding our kids at the same time because it just feels like we are all "together."  If Max were to continue to stay on the conventional vent, the nurses indicated maybe we could reintroduce Max and Wes to each other.  They said it is good for them to touch each other again after spending so much time together in the womb.  That will be an amazing day!!  Just like so many days over the last 8-weeks have been.  We thank our heavenly Father for His providence, for growth, improvement, active digestive systems, good brain ultrasounds, improvement in their lungs, being able to hold them, being able to hold them at the same time, for their spunk and attitudes, and for the opportunity to be parents...even in a very non-traditional way!!

Wednesday, May 20, 2009

Good times

The boys have had a good couple of days...so I am told.  I have been buried with work at the bank, and on top of that have had a nagging "sick" feeling that has kept me from visiting the boys for two days now.  It is really difficult not to see them...and I am pretty sure the nurses are getting sick of me calling every 2-3 hours to see how they are.  Kate, on the other hand, has spent a lot of hours in the NICU, so this post is based on her reports and not my own.  

Max had been at 41 on his vent pressure for a few days and his O2 needs were up to 77% at one point.  They have been pulling blood gases on him 2 times a day to check his CO2 and the acidity of his blood.  The gases were not looking so good and it seemed to us that they were going to turn up his vent again.  This morning was a real answer to prayers.  Max's blood gas showed that his CO2 levels were pretty low and his blood was more on the alkaline side of the pH scale.  So they turned down his vent to 39, and they also turned off the conventional vent completely (it had been giving Max 3 breaths per minute in addition to the 420 breaths per minute given by the jet vent).  His oxygen needs have actually come down to the 60% range, which is a bit counter intuitive considering they are giving him less oxygenated air.  I do not know all of the medical reasons why Max is heading the right direction...I just know that his Heavenly Father has heard and answered our prayers.  In addition to all of this good stuff, Max is also starting to move some more fluid and more...bowels...and he seems to be a little less puffy.

Wesley is just doing his thing.  The nurses have all commented that when they do his care every 3-hours, he just stares wide eyed at them the whole time.  The doctors moved his CPAP pressure from 7 to 6, and he has tolerated the change very well.  His O2 needs remain in the 40% range.  The doctors indicated that once he moves down to a CPAP pressure of 5 and handles it well, they will start to try him off the CPAP altogether, but only for a few minutes or hours at a time.  This is likely a few weeks down the road, but it is an exciting thought nonetheless.

Kate and I just want to express our thanks to the nurses and doctors at the DeVos Children's Hospital NICU.  We are blown away that such a sophisticated, top-notch facility is located so close to lovely Drenthe, MI.  The drive gets old, but we are so thankful we are not driving to Ann Arbor or Chicago on the weekends.  On top of the proximity, we do not feel like we are compromising the boys' well-being at all...like we could get better care somewhere else but have "settled" for the DeVos because of location.  Not only are the doctors at the top of their game, but the nurses are so amazing.  We have become good friends with many of them, and they take such great care of Max and Wes.  I thought that they just genuinely liked Kate and I...but I have recently changed my theory.  My Mom has been making goodies for the nurses every other week or so...and I am pretty sure they only treat us well because my Mom is such an amazing cook.  Almost like she is buying friends for us.  Regardless of their reasoning...Max and Wes get a lot of extra attention and care.  They are spoiled to say the least.  And I am starting to think they know it.  When Ashley was changing Wes' diaper last night, he peed all over himself and the bed.  He knew beyond a shadow of a doubt that he was going to get a new crib sheet if he peed on it.  Our boys are getting used to a certain level of care that might make their homecoming less enjoyable for them than it will be for us!!  Either way, Kate and I are so very thankful for the way that God has used the doctors and nurses of the NICU.  What a calling to choose to care for preemies and other babies with severe medical issues.  Thank-you all so much for doing what you do.  You have made this journey a lot easier!!

Monday, May 18, 2009

Paging Doctor Doctor

Today was our second "family" meeting with Doctor Doctor.  This meeting was much more constructive than the first.  We first talked about Max.  He said that Max's recent brain ultrasound looked quite good.  There are no signs of any bleeding, the area in the thalamus that had previously shown signs of stroke right after birth appears to have "normalized" (thank-you Jesus!!), and obviously his septum pellucidum (SP) is still absent.  The absent SP has nothing to do with him being severely premature, that is just the way God made him.  We have talked with other doctors and told them about Max's absent SP, and there response was "so?" So we are encouraged by that, but not ignorant to the possible ramifications.  Dr. Dr. went on to say that Max's lungs are very sick, and he would classify them as "severe" at this point.  He said that we are in the midst of a waiting game, and he does not expect that all of a sudden Max will decide to open up his lungs one day.  He did say that Max is handling his feedings very well and is following the growth chart very closely...and that is a very good thing.  Dr. Dr.  said that if Max continues to handle his feedings well, he would expect that his body will continue to mature and make new lung cells that have not been exposed to the stresses that his existing lung tissue have.  If Max was not handling his nutrition well, Dr. Dr. said he would be much more concerned than he is now.  Coming from Dr. Bleak, that sounded okay to us.  

On to Wes.  The Doc said he is more than surprised that Wes is still on CPAP.  He said if you put the two boys' chest x-rays side by side, Wes' looks worse.  That is why they treat the patient and not the x-rays!!  The appearance on the x-rays could also just be a timing thing, i.e. if the x-ray was taken when Wes had just exhaled, etc.  Wes is also closely following the growth chart for a 24-week old micro preemie.  Dr. Dr. also said that Wes' brain looks worse than Max's.  I am still at this point not sure why he said this, because Wes' last head ultrasound was on April 3...6-days after his traumatic birth at a gestational age of 24-weeks 6-days.  When I asked if they would do a follow-up ultrasound to see how his brain has progressed over the last 6+ weeks...he said, "no."  I think he just had to throw a negative comment in there about Wes for good measure.

Overall, Kate and I feel like the meeting went well.  It still seems that the good news is drowned out by all of the statistical information about cerebral palsy, low cognitive abilities, etc.  At the end of the day, we are not giving either of these little dudes back, so we have decided that we will again focus on one day at a time.  God has not given us the strength we need to handle all of the "maybes"...but He gave us what we needed today.  We will go forward in faith leaning on His promises and do what we can to find joy in each and every day of this journey.

Sunday, May 17, 2009

Family time

The boys had a pretty uneventful weekend.  Last night they were both at or over the 3 pound mark...another milestone under their belts!!  Max is still on the jet, and his pressure is up to 41 for the time being,  He has been hovering in the 39-41 range, so we are praying for a good gas tonight so they can turn him back down.  His oxygen needs have been quite good...in the 50% range for most of the weekend, which is quite low for him.  This is particularly good because he is down to 2 parts per million on the INO treatment, so the doctors will likely continue to ween him down on that.  Wesley also had a good weekend.  He continues to be the 24-week superstar on the CPAP, and his oxygen needs are still in the 35-40% range.  He is completely off the INO treatment, and has really shown no sign of regression since that treatment was stopped.

The highlight of the weekend was undoubtedly on Saturday when I was holding Wes and Kate was holding Max simultaneously.  It really felt like we had the whole family together for the first time.  Kate and I held hands and were just in awe of how far the boys have come in 50-days.  It was a very emotional time.  It did get a little scary at one point when Wes "swallowed" a bit of water that had condensed in his CPAP tubes.  He had a bradycardia (or "brady"), which means his heart rate dropped below 80 bpm.  He started to turn a deep shade of purple because he stopped breathing...but Emily (one of our favorites!!) was right there and got Wes propped up and stimulated him and got him breathing again in no time.  This all happened while I was holding him...and afterwards I found out that being frozen in fear was the right thing for me to do.  Praise God for nurses who are on the ball!!  We like Emily so much we even decided to post a picture that she happens to be in.  She is the one in the top right of the picture working her tail off on something, like always.  And now that I know she found the blog, I am going to do my best to embarrass her.

Also, Kate is sitting in the coveted "blue chair" that we have had the privilege of having in our area of isolation for a number of days.  It has since been ripped from our grasp due to the groans of the other families in the NICU...apparently it is the only comfortable chair in the unit.  This picture also gives a pretty good perspective of what life in the NICU is like.  On either side of Kate and I are the boys incubators...and that is about all of the space we have.  You can see the yellow and black tape on the floor, which signifies that the boys are in isolation and all inhabitants require a gown and gloves before entering.  Apparently bacteria are afraid of the black and yellow tape, so they are safely contained either within or on the outside of the "barrier."  If you click on the picture to enlarge it, you can see two incubators across the nursery.  Those are identical to the ones that Max and Wes have called home for 51 days now.  They are quite sophisticated pieces of machinery, and run about $60,000 each.  Nothing but the best for our boys!!

With every milestone comes the realization that we cannot physically share the moment with Kate's Mom.  Please continue to pray for peace for Kate and her family.  The "adrenaline" and busyness of the days following her passing have worn off, and the realization that she is no longer with us has become increasingly evident.  We are so proud of the boys, and we know she is celebrating with us from Heaven and singing along each night when we sing "Sanctuary" with the boys.

Friday, May 15, 2009

7 weeks

No news has been pretty good news over the last few days.  The boys are kind of doing "their thing" as the nurses like to call it.  Max climbed to 41 on his vent pressures the other day, but is down to 39 now and seems to be quite stable there.  Wes continues to do just fine on the CPAP, but certainly seems to be a little too strong for his own good, which gets him into some trouble (pulling his feeding tube out, pulling his CPAP off, kicking off the bean bags that the nurses use to pin his arms and legs down, etc.).  Both boys have been on Inhaled Nitric Oxide (INO) which helps the exchange of oxygen from the lungs to the blood stream by opening up the blood vessels.  They have both been on a dose of 20 parts per million (ppm), but the doctors have decided to ween them off of the INO.  The gas does not really have any side effects, they just want to know how much it is helping their oxygen levels.  They are currently on a dose of 3 ppm, and I would say that Wes has really not shown much of a change in his O2 levels (still in the 35-45% range depending on how mad he is), while Max has seen a bit of a rise in his needs (up to the 65-75% range).  My feeling is that the doctors are happy with the results, and Wes will likely be off the INO completely in a day or two, but Max might hang out where he is for a couple of days to see if his O2 needs start coming back down a bit.

The highlight of the day was that Kate was able to do "skin-to-skin" with Maximus.  Kate or I (or both) have been holding Wes almost everyday over the last week or so, but Max is still on the jet  vent, and the rule of thumb is that kids on the jet vent don't get held.  Not sure why exactly , I think there is just an inherent instability with kids needing a jet vent.  The nurses have been huge advocates of Kate (or me) holding both kids whenever possible...but the doctors have the final say.  The biggest fear is that if something goes wrong, the baby is not in the incubator, certain necessary tools are then out of arms reach, etc. - so they make double dog sure the kids are doing well before they get out of their "beds."  Needless to say, Kate was loving it.  She held him for almost 2 hours and Max did great.  A few minutes after she put him back in his bed, his O2 dropped from 78% to 64%.  They say that skin-to-skin is incredibly good for a baby's O2 needs...and I would say that was definitely the case today!!

One of our favorite nurses (Cathy) told us today that Wes is really the exception and that Max is following the "expected" path of a 24 week old micro preemie.  In a way, that was really good to hear.  For Kate and I, we were so proud of Wes, but also felt like Max was really lagging behind, and it worried us a lot.  Now, with a different perspective from someone we trust, we can celebrate Wes' progress instead of letting our worry about Max "get in the way" so to speak.  It is really crazy how a little perspective can change the way we feel about the boy's progress and change the way we pray for them.  We are just so proud of them both.  God's hand throughout this whole experience has just been so evident.  From the timing of their birth, the five times they got to meet their Grandma Blauwkamp, the nurses that God has put in our lives, the support of our family, friends, small group, church and employers.  My human side desperately wanted "normal" kids so they wouldn't be made fun of and they could play sports and have a "normal" childhood.  Instead, God gave me extraordinary kids, regardless of the road that lies ahead.  I do not think that I could ever have a fraction of the impact on these two boys as they have already had on me.  They have changed my perspective.  They have taught me what love really is...my love for them, my love for my wife, my love for my parents, my family, my friends...it is all different in a good way.  Most importantly, they have profoundly changed my perspective on what it means to be a child of the King.  

Tuesday, May 12, 2009


Well, after all of our personal preparation for today's eye exam, the eye doctor said...the boys have immature eyes.  I think my limited medical degree could have made that diagnosis!!  After some further discussion, it sounded like that is a very common diagnosis at this gestational age.  The boys will now have eye exams every 2-weeks, and our nurse today guessed they would have the same diagnosis after their next eye exam.  The bright side is...we didn't hear any bad news!!

The boys had a good day.  No real changes, but their personalities continue to develop.  They were both just WIDE awake tonight, which is always a lot of fun for us.  Wes had a bit of a bee in his bonnet while we were doing his care and he had his breathing treatments, but after that, he cooled down, was flipped to his tummy, and just watched the world go by.  Max was much more relaxed, and I got to hold him for a few precious seconds while one of our favorite nurses, Ashley, changed his bed.  We took lots of pictures, which are shown below.  

The first one is Max yawning a bit and getting ready for a long, hopefully quiet night of sleep.

And this is Wes, all wide eyed and trying to reach his CPAP tubes so he can rip it off.  There is a running joke that Wes secretly lifts weights in preparation for his next opportunity to pull his breathing apparatus off.

Monday, May 11, 2009

Good day

The boys continue to pretty much behave themselves.  They have developed their own personalities for such little guys...all of the good traits from their father of course, and maybe some of their mother's quirky tendencies.  Wes insists on having his hands above his head (or, as I call it, playing "so big" by himself)...which is exactly where his CPAP apparatus is, so naturally he latches on to that and tends to cause a ruckus for the nurses.  His oxygen needs are still in the 40% range, but he climbs into the 50s when he gets agitated or is very awake.  One of us (usually Kate) has been able to hold him every day because he continues to be quite stable and doing well on the CPAP.  That is so awesome.  Every time we do get to hold him though, we are reminded that we cannot hold his brother Maximus.  Max is still at 38 on the jet vent and in the 50-60 range on his oxygen.  He has started to get pretty puffy again after a few days of improvement.  We are not sure  exactly sure why, and it doesn't seem that the doctors really know either.  We will continue to patiently wait and lean on God, trusting that He holds Max in His hands.

Tomorrow is kind of a big day.  The boys are going to have their eyes examined and we will have somewhat of an idea how they are developing.  Eye disease is very common amongst micro-preemies, it is called Retinopathy of Prematurity or ROP.  There are 5 stages of ROP 1 being the best, 5 being the worst.   Stage 5 is a full detachment of the retina (I think).  From what we have been told, stage 4 and 5 have very poor outlooks (blindness in some cases), stage 3 can be treated with some laser treatments, and stage 1 and 2 usually lead to potentially good vision.  These stages can improve and worsen over time, so we will try not to get do to discouraged if the reports tomorrow are not good..but we would really love a break!!  A good report would really be a plus after two heart surgeries, both boys having chronic lung disease, and Kate's Mom passing away not even two weeks ago.  We know we have so much to be thankful for...the fact that we are parents at all is a miracle from God...but our boys have so many challenges ahead of them, and I do not think that Kate or I have the capacity to handle a bad report.  But that is tomorrow, and God will give us the grace and mercy we need to handle what tomorrow will bring.

Saturday, May 9, 2009

Six weeks?!

Hard to believe that it has been six weeks.  The boys are doing well.  Wes is still doing well on the CPAP, and his oxygen needs were in the 30-40% range today, which is as low as they have been since he was taken off the vent.  Max's pressures are starting to climb a bit.  He is currently at a pressure of 38, but his oxygen needs have been in the 40-50% range, which is good.  He has also been passing some good fluids and he is not nearly as puffy as he has been in the last few days.  The boys are actually in isolation right now due to a bacteria that they both tested positive for.  Apparently the NICU has seen an influx in kids testing positive for Serratia (I think), which is somewhat unusual because they work so hard to prevent the transfer of bacteria.  Right now, kids in every nursery in the unit have it, so all of those kids (10-11 total) are in isolation.  That includes Max and Wes.  Isolation simply means we need to gown up in this awkward robe thing (that is clearly not a "one-size fits all" type of garment) to be near their incubators.  It is a bit of a pain, but the upside is that we have two of the most comfortable chairs in the entire unit (a very hot commodity), and other people cannot steal them when we are not there...because the chairs are "unclean."  I have been knocking down crossword puzzles in record time simply because I am comfortable.  

The big highlights of the day was that I got to hold Wes for almost 2-hours.  Kate has been holding him almost every day because he has been doing so well on the CPAP, but today was the first time I got to hold him.  I wasn't able to do skin-to-skin because of the awkward gown things, but I was able to swaddle him, which was awesome.  He was kind of jumpy at first and he got the hiccups (which I personally hate but find absolutely adorable when my 2 1/2 pound children have them), but after a few minutes he settled down and we took a nice long nap together.  It was really a special time.  It is hard to describe, but that was the first time I have really been able to hold either one of my sons and they are 6-weeks old.  Maybe "surreal" is the best way to describe it.

Kate and I are so excited that the boys have had a good couple of days.  We are so proud that Wes beat all the odds and is breathing like a champ almost by himself.  Max's pressure are climbing, but overall he is much improved over even 4-5 days ago.  Please join us in praising God for His providence...for watching over our little boys and carrying them through a lot of difficult times in the last number of weeks.  It is crazy to believe that they have both had heart surgery and they are barely 30-weeks old from a gestational perspective.  It will be fun to celebrate Kate's first Mother's Day tomorrow...but at the same time, the reality that Kate's Mom is not with us will be very evident.  I covet your prayers for Kate, her sisters and her Dad tomorrow.  Pray that God will surround them with His love and comfort in a very special way.  

Thursday, May 7, 2009

Update on the boys

The boys both had very good nights and are doing will so far today!! Praise God!! Max's pressure is back down to 32 and he has been stable there for quite a few hours now. His oxygen needs are in the 50-70% range, but that is a far cry from the 80-100% range he had been in for weeks. He is still really puffy, so they have increased his dosage of this drug that he gets mixed with the breast milk to try and help speed the passage of additional fluids. They said it takes a little time to start working, so we will keep being patient. Wes continues to do well on the CPAP and had is "pressure" reduced from 8 to 7. This is a completely different kind of pressure than what we have been used to on the conventional and jet vents and is purely to keep his airways open in case he doesn't feel like breathing for a while. His oxygen needs are also down in the 40-50% range and all of the doctors and nurses have been very impressed with his progress and ability to breathe all by himself. Kate and I obviously know that God is helping him with the breathing when the doctors and nurses stacked the odds against him making it even through the first night on the CPAP. Tomorrow will be 7-days!!

Thank-you all for the prayer support...God heard and answered our cry for help. I love the fact that the doctors are stumped by Max's recent and significant improvement and Wes' continued success and improvement on the CPAP. When I ask what they think it was that helped Max turn things around, the list is as long as it is boring. Life is so much easier when you know that God is in control!!

Wednesday, May 6, 2009

Prayer request

Just wanted to get a short post on here asking for your prayers for Max. After all of his improvements over the last few days, things are heading the wrong direction. He was down to a pressure of 30 on Monday, and as of this morning is back up to 44 because his CO2 has been high (indicating that he needs more oxygenated air, hence the increased pressures on the vent). There does not seem to be a real clear reason why he is back tracking so quickly. They did stop his steroid treatments for a day due to high blood pressure, but that seems to have come down a bit now and they were able to give him two doses of the steroids yesterday. The steroids do cause him to retain water, and his poor little head is super puffy right now. He looks like a very miniature version of the Stay Puft Marshmallow Man. They have started him on a drug to help him pass additional fluids.

Wes continues to prove everyone wrong by staying on the CPAP and even improving a bit. His oxygen needs have come down to the 50% range when he is calm (which is not very often). The doctors have twice prepared to intubate him and put him back on the vent, but Wes has shown his mettle and they have continued to let him breath on his own. We are so proud of Wes, but so concerned for his brother. Please pray with us that God will just touch Max's lungs and get the healing process underway. May God grant Max peace and comfort as he is poked and prodded and jarred around by the jet vent. We just feel so helpless as parents as he has to endure so much for such a small little boy. I know that Max and Wes have their Grandma's courage and desire to fight, I just don't want them to have to rely on that every second of the day.

Monday, May 4, 2009

God is good

Wow.  It seems like a lot has happened since I last posted an update.  Wes is still on the CPAP machine and therefore breathing on his own with only some assistance to keep his airways and lungs from collapsing.  The doctors have indicated that he is toeing the line of being re-intubated and put back on the vent, mostly because he seems to be working very hard and has not really found his rhythm yet.  They don't want to exhaust him, but he does have almost 3 1/2 days under his belt off the vent.  We are so proud of him!!  Even if he does have to be put back on the vent for a period of time to allow him to regain his strength, the last few days have been a real gift from God as He has given Wes the strength to outlast all of the doctors' and nurses' expectations.  Considering all of the other events of the weekend, it was a real joy to be able to call and hear that Wes was still breathing on his own.  He continues to do very well with his feeds of 20 mls of breast milk every three hours, and is currently on just enough sugar water to keep his PICC line open.  There have been discussions amongst the doctors that Wes could be ready to have his PICC line removed (that is the IV that threads all the way up his arm almost to his heart).  Max has had a crazy couple of days.  Crazy in a good way for the most part.  He had been on very high vent settings of roughly 46-50 and high O2 in the 80-90% range.  The doctors did decide to go ahead with the steroid treatments.  As expected, Max's blood pressure elevated.  To combat this, the doctors have implemented Inhaled Nitric Oxide (INO) which is used much like Nitro Glycerin in people with high blood pressure.  It helps to open up the blood vessels, and Max's application is used in conjunction with his jet vent and delivered right into his lungs.  Also, I mentioned that Max got a larger ET tube as well.  Needless to say, one of these things worked worked, and since it is hard to pin point what variable lead to the changes detailed below, we are just going to say it was God.  When we left the hospital tonight, Max was at a vent pressure of 30 and his oxygen was about 65%.  He has not been on vent settings that low in weeks!!  The respiratory people have been suctioning a lot of liquid out of his lungs, and this fluid shows evidence of Staph bacteria and possibly pneumonia.  Also, Max seems to have episodes where he fights the jet vent and his body starts to shake quite a bit.  Not shaking like in The Exorcist, but pretty active shaking for a 2+ pounder.  The doctors are a little puzzled by this, and they may be leaning towards using the conventional vent more than the jet at this point.  We are ecstatic about the improvement on the vent settings, but a bit concerned about the shaking and possible pneumonia.  We trust that God will continue to hold Max tightly in His grip and grow and develop Max's body in His timing.  Also, both boys weighed 2 pounds 7 ounces last night...so we are very happy about their weight gain as of late!!

This weekend was both beautiful and difficult at the same time.  It was incredibly hard to commit Mom's earthly body to the ground at the graveside ceremony, but the memorial service at night was such a beautiful celebration of her life.  God has certainly been covering us with His grace over the last number of days, but the reality that Mom is gone is starting to set in.  With it being the week leading up to Mother's Day, it is particularly difficult.  Please pray for Kate, Dad, Becky and Lisa (and myself, Henry and Joe), that God will continue to pour out His grace, to grant a comfort and peace that only comes from Him.  We all know that Mom is in Heaven and no longer has to fight or suffer, but there is still a void in our hearts that will never again be filled.  We do not anticipate the healing process to be quick, easy or anything in between...it never is when you love someone as much as we loved Mom.  But as Christians, we have hope.  Hope that we will again see Mom when Jesus has finished preparing our homes in Heaven.  I cannot wait to sing the song "Sanctuary" with her again.  It was a song that she loved, a song that we sang at her graveside ceremony, and a song that Kate and I have sung to the boys every night, either in Kate's belly or in their incubators.  It is a daily reminder to me of her legacy...a life lived for her savior Jesus Christ.

Lord, prepare me to be a Sanctuary
Pure and holy, tried and true
With Thanksgiving, I'll be a living
Sanctuary for You.

Saturday, May 2, 2009

Thank-you Jesus

Where do I start?  The boys have been doing well over the last few days, and we praise God for giving us some relief from having to worry too much about them with all of the other things going on.  Max has been on roughly the same vent settings as before, but his oxygen needs are starting to come down.  He was in the 60-70% range yesterday compared to weeks in the 80-90% range.  That is great news as it may be an indication that his lungs have healed a bit and that areas that had been "closed off" could now be open and exchanging new, oxygenated air.  Max is also getting "full feeds" for his weight and age which is 18 mls every 3-hours, and he seems to be doing very well with that.  Max also got a new vent tube put in yesterday.  As the boys have grown, so have their throats and the vent tubes that have been in place for 3-4 weeks are now too small.  So Max was intubated with a larger size tube, and that seems to be helping quite a bit.  They tried to use his other nostril (just to keep his nostrils maturing at the same rate), but the doctor hit a blood vessel and started quite a nose bleed, so they had to use the same nostril again.  Wes has had a great couple of days.  He had the same issue with his vent tube being too small and a lot of air from the vent was leaking out.  He had been doing really well on his vent settings, so when the doctors took out his tube, they gave him a chance to breath on his own.  Think of it as kicking a baby bird out of the nest to see if he/she can fly.  They hooked Wes up to a CPAP machine that only provides pressure to keep his lungs from collapsing, but does not breath for him at all.  The nurse that I talked to felt like he had a 50/50 chance of staying on the CPAP versus having to be re-intubated and put on the vent again.  That was about 24 hours ago, and he is still flying!!  In fact, they have been able to turn down both his oxygen and reduce the pressure given by the CPAP machine.  Thank-you Lord!!  The nurse said it took him a little time to get his rhythm going, but he is breathing on his own.  Not bad for a kid who weighs 2-lbs 6-ozs and is supposed to be in the womb for another 10-weeks!!

We are so thankful the the boys have had a good couple of days.  We are also thankful that they really only have issues with their respiratory systems at this point, too.  One of the nurses told us that she would take chronic lung disease over brain bleeds and digestive issues, because the lungs continue maturing and developing for many many years.  It is good for us to hear that because it allows us to change our perspective and find more things to be thankful for...and we need that right now.  Kate said that she thinks the boys have been doing well because their grandma can watch them all of the time now, so they have been on their best behavior!!

Yesterday was the visitation for Kate's mom.  I think the whole family was kind of dreading it, but my feeling looking back was that it went really well.  A TON of people came, which is just a great testimony to the kind of lady that Mom was.  We did not do an open casket, but Kate made these beautiful little "gifts" from Max and Wes with their pictures and a set of their hand prints and foot prints and a note telling Mom how much they love her and how much they will miss her, and we put that in her casket.  Today will be a tough day.  Please pray that the family will be given an extra outpouring of God's grace as we say goodbye to Mom. 

John 11 verse 4:
4When he heard this, Jesus said, "This sickness will not end in death. No, it is for God's glory so that God's Son may be glorified through it."