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....


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!!!



5 comments:

  1. Your posts continue to move me to tears, Mark. God's timing ... yeah, sure not ours. I'm learning that whole "wait upon the Lord" thing and feel like I've run up this mountain before. But HIS timing is right ... how fabulous you and Kate can align yourselves with that NOW!

    Blessings -
    Ruth

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  2. Wonderful news, it's always great to check the blog and see that things are going good. It seems like more and more time goes by with good news-Love that!!
    We are missing the boys (and you two)! We will say lots of prayers that things can continue in this direction for both boys.
    Love to you all,
    Stacy

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  3. Hold Fast. Thank you for sharing your journey with us. Priceless pictures and updates on your beautiful Family. Praying fervently for you. In our Precious Jesus.

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  4. Hi Kate and Mark!
    Once again, your words of faith are so awesome. You give all of us something to think about. We are praising God for each little success. It is hard to even think about a discharge date! WOW! We love the pictures-especially the bouncy seat pose;) What adorable boys!!
    We all like to know what is going on but truly see no news as good news!
    Steve and Kerry

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  5. I know I haven't written in a while, but please know that we continue to lift up the four of you in our prayers. So anxious to see those handsome sons of yours! Love, Aunt Allie, Uncle Bob and family

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