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....

Sunday, June 7, 2009

...and not so good days

After a few days of stability and improvement for Max, things took a bit of a turn on Friday. Max's blood gas on Friday morning was really bad. The doctors had been talking about "sizing up" his ET tube (the one that goes up his nose and down his airway into his lungs), and decided that it was time to do so. So Max was extubated and they found that his other tube was quite plugged up with "junk." Max also made some attempts to breathe on his own while he was extubated, and they said that is very encouraging. Max was then intubated with the larger size ET tube (it looks a lot bigger to Kate and I then the last one), but things didn't really improve. We were hoping that with the larger tube and that fact that the last tube was pretty plugged up, that this was going to be just what Max needs to get off the jet vent and get things heading the right direction. Quite the contrary. He is currently at a pressure of 38 on the jet...which is about where he was 5-weeks ago. It just feels like we have taken a big step back. His oxygen needs have been pretty low still (roughly 30% on average) and they have weened his Inhaled Nitric Oxide down from 20 parts per million to 2, so that is all very encouraging. It is just hard to see his vent needs increase when he was so close to getting off the jet altogether. We saw a glimpse of how much happier and calmer he is on just the conventional vent without that constant pounding in his chest. We understand that Max has some gas trapping in his lungs and the jet is the best way to open those areas of his lungs that are "closed off," but we certainly hoped that it would have done its job by now. Max is still really puffy, particularly in his head, so they have ordered a neck ultrasound for tomorrow to see if there is something causing the retention of fluid in his head. They have already done a brain ultrasound and that actually looked really good, which meant that all the fluid is on the outside of his skull. He is on the highest dose of a diuretic called Aldactazide that is designed to help relieve him of excess fluids, but it does not seem to have done much for his head. We are praying that if the ultrasound reveals anything that it will be a very treatable issue. The unknowns are hard to deal with. At least with infections, they can give them antibiotics and then we wait. But these other mysteries get really hard to "wait and see" what the cause is or if something will help, etc. My brain works best when there is an identified problem and a mapped out course of treatment...the medical mysteries are hard for me to deal with because I feel so helpless. I just want to switch places with Max...to give him a break for a little while. We hate that we have gotten to the point where we say, "at least they won't remember any of this." We just want God's timing to be our timing right now. Would healing Max's lungs really mess up Your plans so much, God?

Wes continues to be very stable. His oxygen needs are relatively unchanged (right around 40%), so the doctors are not going to let him do any "off CPAP" trials. We got to give Wes his third bath today...and if that child's strength and will continue to grow at the same rate as his body...Kate and I are in trouble. That kid is going to break his way out of his crib in the near future. He weighs just over 4 pounds and Kate could hardly control him while I shampooed his hair.

I heard this song on the radio a few weeks ago called "Savior Please" by Josh Wilson, and I feel like the lyrics completely embody the prayer I have peen praying since the day Kate went into the hospital on March 10:

I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me


  1. still praying hard for you all... i think that's the best thing i can say. hopefully God's timimg starts to match yours pretty quickly!

  2. You are all so much in my prayers. We know how frustrating and hard it is to see your child have setbacks. We will be praying for Max and praying that the neck ultrasound will reveal the reason he is retaining fluid and an easy treatment for it. Praying for healing for both Max and Wes and praying for you and Kate as you continue to wait and see. God loves you and your boys so much and he is holding you all in his grasp.

    Tina Jacobsen

  3. We are praying for the ultrasound to go well and that the outcome will be good.
    God has done a wonderful job with Max and Wes, He taken them a long way-you can all handle this!!
    Sending lots of prayers your way, for understanding, for the fight, for comfort for the boys, for the doctors-for everything!!
    Love you guys!

  4. Mark, Kate, Max & Wes-
    We are praying for you today. We are praying with faith like children-simple faith in a God who can move mountains, but can also be heard in the gentle breezes.

    God, be with this young family today. Do amazing things in their lives. Astound the "experts" with your healing touch in Max & Wes' lives.


  5. I love that song, too. In fact, just in the past few days I've been singing that song and using the lyrics as a prayer for you guys as well as the Ver Beeks.
    "Thank you, Jesus, that you are strong enough to carry us through the storms in life. Thank you for your never-ending love. We are truly nothing without your love. Lord, be strength for Mark & Kate right now. Give healing, strength, and peace to Max & Wes. Savior, please keep saving us... we're just not strong enough. We need You!" Amen

  6. This song comes to mind as well...
    May the Lord Bless you
    May the Lord keep you
    May his loving arms surround you
    And give you peace,
    give you rest,
    in His arms.
    We will continue to pray for your family. I'm sure the days are long yet short up at the NICU. I remember having that feeling of just wanting to know what's wrong too. But, just think...God already knows. He knows EVERY hair, every breath, every inch of your little guys. When it's time for you to know, you will. Until then, I'll pray that God gives you peace. That He grants you wisdom and understanding through this roller coaster ride. Hang on my friends! - Love you - Sue