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....


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.  

4 comments:

  1. Thanks for the update. We praise God that the boys continue make steady improvements! We pray for the four of you every day... your precious sons and also the faith that both of you have demonstrated through this journey have blessed us so much. What an incredible testimony to our Father and His providence and lavish love!

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  2. I found your blog throught the Busscher blog. I don't them personally but found them through another blog. I just wanted to let you know someone you don't even know is lifting up your family. Your strong faith in our Lord is a beautiful testimony. I will be asking my bible study to lift up your family in prayer also.

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  3. Hey Mark and Kate!
    I found your blog (Thanks to google!!) I love the pics and updates on the boys, even though I am lucky enough to see them on an almost daily basis! Thanks for making things fun in nursery 3 this weekend. I'll be praying for the boys, and I'm sure I will see all of you soon!
    Max and Wes's favorite nurse,
    Emily (or at least one of the favorites!!)

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  4. Your extraordinary boys have extraordinary parents!!! This post brought tears to my eyes ... skin to skin w/your babies is the BEST!

    Ruth

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