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....


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.

6 comments:

  1. Mark and Kate-

    Stick with the good news and ignore all the statistical mumbo jumbo, just focus on loving your boys. Our son Jasper is at high risk for cerebral palsy, learning delays, etc. because he has PVL, a brain injury he has from his prematurity. The statistics and maybes don't matter because God called your boys just as they are.

    This little paragraph from Max Lucado's book "Traveling Light" always reminds me not to look at the future.
    "The key is this: Meet today's problems with today's strength. Don't start tackling tomorrow's problems until tomorrow. You do not have tomorrow's strength yet. You simply have enough for today." Max Lucado

    Many prayers for your family.

    Tina Jacobsen

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  2. Mark, I love the sense of humor and story-telling ability that God has given you! You're putting it to great use. We continue to pray for Max, Wes, Kate, and you!

    MBIKLG

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  3. "I lift my eyes up, unto the mountains, where does my help come from? My help comes from you maker of heaven, creator of the earth. Oh how I need you Lord, you are my only hope, you're my only prayer. So I will wait for you to come and rescue me, come and give me life." From God's holy word and the song 'Psalm 121'
    Praying,
    Ron and Karen Boersema

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  4. I'm so glad to be able to share this journey with you. Focus on the good, breathe deep, and love those little miracles!! Here's hoping you get tons of skin-to-skin this week!!! That's great therapy for both you guys and the boys. :)

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  5. read about these little ones:
    Caring Bridge: EstherHope
    Carepages: hope4hope

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  6. more encouragement can be found in the People mag from May 18, 2009, I hope that is right. They gave stories of several young people that were micro preemies and their success now.

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