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, September 4, 2009

That didn't take long

I intend for this to be a short post. At 11:00 last night Kate and I took Wes to the ER at Spectrum. His breathing was very labored, his oxygen needs had increased, he had not slept for about 24-hours (neither had Kate) and he was coughing a lot. They admitted us to the pediatrics unit (the NICU is a one-way exit, no babies come back through the front door as a patient) and that is were Wes remains. There are a number of theories flying around, but it is clear that his chronic lung disease has flared up for whatever reason, hence the labored breathing, coughing and increased O2 needs. We are not sure where things are heading right now, but it is pretty clear that he will be getting the same G-tube surgery that Max recently had where they wrap the top opening of the stomach to prevent reflux and install a port directly into his stomach. This is simply a much safer way to feed him for the near term to protect his airway/lungs from reflux. Wes was also "scoped by and ENT doctor who looked at his voice box because Wes makes very little noise. Wes does have a paralyzed vocal chord. We do not know if this is permanent or not, but the chord is not moving at all. This can also be an issue for his lungs because the vocal chords come together to protect the airway when swallowing, drinking, etc., so that is why the G-tube is almost a certainty. They just moved his feeding tube from his stomach into his intestines (Max had the same thing for a long time prior to his G-tube surgery), and they are giving him his second breathing treatment in 3-hours (he usually gets his treatments every 6-hours). His oxygen needs are currently more than 5-times what they were when we took him home.

I am going to end this post now. Kate and I are really hurting. We are mad, angry, scared, frustrated, wondering why we were allowed so little time to celebrate Wes being home before being thrown into the fire for the umpteenth time. 5-months of this crap is enough...don't you think, God?

17 comments:

  1. I am so sorry to hear this... it is really hard to understand what God is doing through all of this. We will pray for peace and strength, and healing for both of your beautiful boys.

    Kelli

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  2. Katie Postma (De Kleine)September 4, 2009 at 5:40 PM

    Mark & Kate, I am so sorry that this happened. We had this happen when Jacob had his brain surgery, he came home 5 days later, for about 36 hours, and then was re-admitted for 27 days. It was horrible. Please know that we have experienced all the feeling you are now, and you are allowed to feel all of them. Sometimes we just plain do not understand, but I'm not sure if we did, that we would be ok with that either.....I know from experience that telling you that we are praying, and pulling for all 4 of you, sounds old....but sometimes it's all we can say. If you are looking for someone to talk about some of this stuff with, please call, I would love to try and help...in some way. God's greatest blessing to each of you! You can always ask Matt & Beth for my number, they go to our church.

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  3. Yes, I would agree. 5 months is enough! I'm so sorry you guys! Please hang in there and we'll be praying you and the boys through!! I pray you may find comfort in God's Word from Job (his declaration of faith in the midst of horrible tragedy): "I know that my Redeemer lives, and that in the end he will stand upon the earth." Job 19:25 He will! Jesus is the Victor. He will NOT let you out of His grip and out of His love! We love you guys! The Sluiters

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  4. I am praying for you ..."I cried out to God for help; I cried out to God to hear me. When I was in distress, I sought the Lord; at night I stretched out untiring hands and my soul refused to be comforted...Then I thought, to this I will appeal: the years of the right hand of the Most High. I will remember the deeds of the Lord, yes, I will remember your miracles of long ago. I will meditate on all your works and consider all your mighty deeds"...Psalm 77

    In His Grip..barb baumann

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  5. Dear Mark and Kate.
    I'm sorry.
    Blessings and prayers,
    Glady Kuipers

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  6. Mark & Kate,

    No words can be enough. Our prayers are with you.

    -Chris & Denise Van Dis

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  7. "Failure doesn’t phase You, worry doesn’t win,
    Loss doesn’t leave You afraid to start again,
    Our sin doesn’t shock You,
    Our shame doesn’t shame You at all

    Mistakes do not move You, terror doesn’t tame,
    Death doesn’t doom You to life in the grave,
    Our suffering doesn’t scare You,
    Our secrets won’t surprise You at all

    There is nothing above You,
    There is nothing beyond You,
    There is nothing that You can’t do…
    There is no one beside You,
    There is no one that’s like You,
    There is nothing that You can’t do…

    Whatever will come, we’ll rise above,
    You fail us not, You fail us not,
    No matter the war, our hope is secure,
    You fail us not, You fail us not,
    You fail us not…

    Hatred doesn’t hide You, evil doesn’t ail,
    Despair can’t disguise You and tell You that You’ve failed,
    Our doubt doesn’t daunt You,
    Our darkness won’t defeat You at all"

    This song has spoken so much truth to difficult situations. He will not fail you.

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  8. All I can say is, Kate & Mark, we are praying for you for strength and stamina and for healing. Aunt Allie, Uncle Bob and family

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  9. Mark and Kate,

    Our hearts are breaking for you. Know that we're praying hard for stength and peace for you both and healing for Wes (and Max too).

    Please let us know if you need anything. We're close by and have an extra bed that you're welcome to if you don't want to have to drive back and forth to Zeeland. Whatever you need...even if it's real food or another care package...don't hesitate to ask!!

    Marie and Chad

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  10. You are in our thoughts and prayers! Our hearts are with your family during this time!

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  11. we are standing with you in love and prayer.
    Cara and David Maat

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  12. I think Wes just wanted to be closer to his brother!

    You can do this, you have done it so many times already. We all have faith in you!

    Lots of prayers,
    Stacy, Geoff, Cassidy, Evan & Sadie

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  13. Imagining your exhaustion and frustration... storming heaven with you in the whys.

    praying for some sleep for all of you as you grieve this setback.

    How long must I wrestle with my thoughts and every day have sorrow in my heart?
    How long will my enemy triumph over me? Look on me and answer.
    Give light to my eyes, or I will sleep in death.

    Psalm 13:2-3

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  14. We are prying for the boys, the family, the doctors, for God's will to be done and his Grace for You and Kate.
    Jim and Kath Terp

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  15. I'm so sorry to hear this happened. I continue, every day , to pray for all of you! Stay strong!

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  16. (That last comment is from me, Lindsey Singer Grant)

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  17. Know we are crying out to God for you. You have come through a lot, and you can get through this too. I have faith in that. God is way bigger than all of this. May he bless you this coming week. Lots of love -Sue and boys

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