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....


Saturday, June 13, 2009

Backslide

The week as a whole had been going very well, but the last 36 hours or so have not been real great for Max. His blood gasses have not looked great and they have turned his vent pressures back up to 39 from 37. We were also surprised to see that they started Max on the Inhaled Nitric Oxide again. We thought that machine was finally out of our lives, but its ominous structure resides by Max's bed once again. They docs put him back on the INO because his oxygen needs had climbed from around 45% to 55-60%. He is on a dose of 10 parts per million (about half of what he was on for a long time), and his oxygen needs did come back down into the high 40 to low 50% range. The nurses continue to get a lot of goo out of Max's ET tube as well, which is kind of good, kind of not. It would be good if he was showing signs of improvement and it felt like getting this junk out was really helping, but right now it feels like he is manufacturing the goo at a faster rate than they can suck it out. Every time they suction him, more goo takes the place of the old. In my opinion, his head does seem to be getting a little smaller, but Kate does not agree. Max did lose about an ounce (25 grams) last night and now weighs 5 pounds 2 ounces. And at this point, a little weight loss is a good thing.

Wes is unchanged. Which is starting to get a little concerning. He has been on the CPAP at a pressure of 5 and 40% oxygen (not 39%, and not 41%) for about 5 weeks now. The doctors are not concerned, Kate and I just hoped his progress would continue at the pace it was going. It has been a real blessing to have him be so stable, however, and we love that we can pick him up and hold him, put him in his bouncy seat. etc. In fact, he and I took a nice hour long nap together this afternoon:



Wes has put on a few ounces as of late too, and now weighs 4 pounds 9 ounces.

We sing "Sanctuary" an pray with each of the boys every night when we leave, but were not able to last night. A little girl that has been in our nursery for about 10 days was not doing well. Kate was in the "Mother's Lounge" and my parents and I were watching Wes checking out the world from his bouncy seat. Then I heard a nurse say, "I will get the crash cart!!" That is not a good thing. I got my parents out of the room and started putting Wes back in his incubator. I over hear things like "I will do chest compression and you work the bag," which are all terms I have heard on ER before. We decided it was time to take off, and we were not able to get back into the nursery to pray with the boys. On our way out of the hospital, we passed the little girls parents, who had obvioulsy just got "the call" that all NICU parents fear the most. When we got to the nursery this morning, there was an empty incubator where Syriana (the little girl) had been. Our hearts are just broken for her parents. We do not know all of the details, but we know that she was born at about 28 weeks, and had been doing well earlier in the day. It was a reminder of both how fragile these little kids' lives are, but also how much Kate and I have to be thankful for. It is really easy to get caught up in the little details, and while it is true that both Max and Wes' lungs are very very sick, we have been blessed by the boys overall health. We pray that Syriana is now sitting on Jesus' lap, and that her parents knew Jesus as their personal Savior and can grieve with Hope.

3 comments:

  1. Mark, Kate - Wes and Max .... You are not alone as you walk this path God has set before you. Even as you have been a testimony to us you can be sure that each of you is being brought before God Almighty seeking His merciful hand.

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  2. Praying with you that God chooses a different path for your little boys than He did for that girl....That God will raise them up to be strong and courageous for Him and they will live long and happy lives and know the Lord their Savior with all their heart!
    Holly

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  3. Lindsey Singer GrantJune 14, 2009 at 10:10 PM

    Mark, Kate, Max and Wes- I continue to keep all of you in my prayers. Yall have a strong couple of boys are your hands! Thanks for all the updated pictures!

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