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, July 26, 2009

So far, so good

Max has made it more than 96-hours on CPAP now, and things are looking good!! His gases had been trending towards higher CO2 numbers (60 and then 64), so Kate and I had a bad feeling in the pit of our stomach. His gas last night had dropped back down to a CO2 of 60, and his gas this morning improved even further to a CO2 of 57!! The doctors felt like he was doing well enough that they moved him down from a PEEP of 9 to 8. Now that Max is off the ventilator, he only has one number to really pay attention to, and that is the PEEP, or the pressure that is ever present regardless of inhale or exhale. The higher the PEEP, the more support the apparatus is providing, a lower PEEP requires bigger breaths on the boys part. Wes has been at a PEEP of 5 for about 19 months now, and that is the lowest they go. The move down to 8 for Max is a big deal for us because we now feel like we are one step removed from going back on the vent...there is another alternative if he is not doing real great that does not require him to be reintubated. Thank-you Lord!! I love when HE answers our prayers in such a bigger and better way then we could have ever let ourselves believe was possible. Thank-you to everyone who has been storming the gates of Heaven with us...there is little doubt that prayers for Max's strength and endurance were heard and answered.

Kate and I had a chance to talk with one of the NICU doctors this afternoon about Wes and the weaning situation. He is the doctor that cancelled the weans because Wes' oxygen needs were starting to creep up a bit. He now feels that Wes is ready for a trail off CPAP. No weans, just one and done. Kate and I couldn't agree with him more. Wes' breathing has been very rhythmic and consistent and his O2 needs have been in the high 20% range. This news came as a bit of a surprise to us after the events of last week, but we are ready to move one child to CPAP and another child off...two is too many. I imagine that the boys' disdain for the CPAP is similar to a child with Colic are acid reflux. As a parent the only feeling to describe it would be "helpless." Join us in praying that maybe this will be the last Sunday Wes is on CPAP.

Another prayer request we have is for Wesley's vocal chords. Max has actually stated to cry out loud a little bit since being extubated on Wednesday. It is a weak, raspy cry, which is too be expected after being intubated for the length of time that he was. But we were reminded that Wes still doesn't really make any noise. There is always a risk of paralyzing the vocal chords when a child is intubated, particularly when they are as little and fragile as these two were. This paralysis can either be permanent or temporary. We are obviously praying for any paralysis to be temporary. We don't even know if that is why he doesn't make any noise, but given their pathway thus far in life (multiple intubations and extubations), it is the most likely scenario. An ENT doctor will scope Wes' larynx at some point, but nobody except Kate and I seem real concerned with it, so there is nothing on the schedule at this time. Pray that God will touch Wes' throat so that we can hear his sweet little voice for the first time.


  1. God is really working miracles! How exciting for all of you to finally see these amazing results of a lot of hard work by your boys and a lot of hard prayer and love by you two! Congrats on such great news. We'll continue praying for you and the boys. Hugs - Sue and boys

  2. Yeah Max!! I pray that you never see the vent again!! So glad to hear that Wes will get the opportunity to go it without CPAP, that is awesome, sometimes you just gotta go for it and let them fly :) Praying for milestones this week for the boys and praying for strength, rest and peace for you all.

    Tina Jacobsen

  3. Praising God for the great steps the boys are taking! And we'll keep praying for God's complete healing for both Max and Wes in His perfect time. With love and prayers, Amy & Brent Sluiter

  4. Praise GOD!! What wonderful news!!

    We will be praying for this to be the last day of Wes needing a CPAP and Max to start using that voice of his.

    We love you all and miss you much.