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, August 13, 2009

Uphill?

The boys continue to be very stable and make good progress. Max is down to a CPAP of 7, and seems to be much more comfortable there then he was at 8. His oxygen needs are actually down a little bit, more in the 35-40% range than 40-45 like he had been before the move to 7. This is almost certainly due to the fact that he is more comfortable closing his mouth, which allows the CPAP to deliver both the pressure and the oxygen to his lungs. When he was fighting the higher pressure of 8, he would never close his mouth, so much of the support from the CPAP and the oxygen never actually made it to his lungs. Thanks to Nurse Ashley who really campaigned for us and got the docs to make the move to 7...he has been a much happier baby since. Now that Max has been so stable on the CPAP, talk of the trach is starting to really pick up steam. 6 different docs in 4-days said something to Kate about it. Yep...we know...we are not ready to pull the trigger on a very permanent, life-altering surgery when our God just performed a bonafide miracle in this boy's lungs not 3-weeks ago. Not only that, but he is still improving, still growing and still getting stronger. Kate and I fully understand that if he got a trach tomorrow that we could more than likely take him home in a month. But we have come this far, and we are going to do what is best for Max for the next 90-years, not what is easiest for us over the next 90-days.

Wesley has been an absolute rock star lately. I think I talked about how he was off CPAP but on high-flow nasal cannula, which is really a lot like CPAP, but a little more comfy. Well he is down to low-flow nasal cannula full time, and not only that, but he is down to 0.10 liters of flow, which is almost as low as he can go before they start trying him without oxygen support altogether!! That probably won't happen for a while, but we leave every possibility open for God. the other big change for Wes is that they have started to compress his feedings over a short time period. He had been getting fed over 2 hours, so his feeding of 70 ml is given to him consistently over 2-hours versus a baby taking a bottle in a 10-15 minutes (I really have no idea how long it takes to feed a "regular" baby, so that could be way off). He is fed over time to prevent any refluxing and then aspirating that into his lungs and setting back progress for weeks and weeks. Now that his lungs are getting strong and he needs minimal support from a respiratory perspective, it is time to start working on feeding...the last hurdle before he comes home. Anyway...they have been slowly weaning his feed times down, and they moved to a 1-hour feeding today, and he seems to be handling it well. Please pray that he continues to do so. If he does, they will try 1/2 hour, then basically a gravity feeding, and then a bottle. Talking about this all seems like a pipe dream. In a weird way, it is hard to picture the boys ever living in this house. We have become so accustomed to them being in the hospital that it almost feels strange to think about them being home. Hard to explain.

Now for some videos!! I was sick like a dog for a good 5-6 days and not able to get to the hospital for a whole week. That really sucked - no other way to put it. So, I had Kate take lots of little video clips with our digital camera just so I could see them move and make noise. She got some good ones. Here are a few of our favorites:

This is Max playing with his toys. Kate and I think he is a very smart little boy!!

video

And this is Wesley...this little guy really likes his pacifier!!

video

As the title suggested, there is a feeling that we are maybe climbing the hill and actually making some progress. For months any step up seemed to be followed by fall off a sheer cliff. But over the last 2-3 weeks it really feels like we are stepping on firm ground and moving forward. We are still cautious because of the rocky road behind us, but thankful for the way God has redeemed it into an amazing journey. I am reminded of the song by Jars of Clay called "The Valley Song" where the chorus says, "I will sing of your mercies, that lead me through valleys of sorrow, to rivers of joy." That really says it all. What a mighty God we serve.

I did want to mention that the boys had an eye exam recently, and both boys have mature eyes!!! That is such amazing news, and a true rarity for 24-weekers. Yet another way that God has answered our prayers in a way we would have never thought to ask. We so often prayed that they would not have ROP, an eye disease that effects so many micro-preemies, but I am not sure I ever prayed for the boys to have "normal" eyes. That seemed like asking too much, but that is why God is God and I am not.

9 comments:

  1. I'm so happy to hear all the good news!! Micro-preemies might be little, but thay are strong and they can fight! Way to go Max and Wes!! Praying that the boys continue making uphill progress and continue to amaze those docs!! Praying for you all!!

    Tina Jacobsen

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  2. We need to see these little guys in person again! It is awesome to see how Max and Wes are growing. It is also great to know that God knows each step (forward or backward) of their lives as if they were the only people on the planet! Thanks again for the update Mark and Kate. We love you all!

    MBIKLG

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  3. Praising God for continued prgress for the boys! We're still trusting God that He will completely heal Max so he won't need the trach. We love you guys and we'll keep praying!

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  4. So neat to see Max playing-something so normal!
    Also, it was neat to see Wes' eyes grow wider at the sound of his mom's voice! And yes he sure can suck on that pipe,once a bottle comes with real food,he will probably inhale it!

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  5. We are praying for you guys. It is awesome to see the miracles God has done on these little guys. We'll continue to pray for you all.

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  6. I cannot wait to see them again! I am so happy for you two and praising God for answered prayers! It's good to see Max playing with the mobile: adorable.

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  7. Hi Mark and Kate -
    So happy to hear about this wonderful progress! Can you e-mail me your mailing address?

    Thanks!!!
    Sande Quenneville

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  8. markandsande@sbcglobal.net

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