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 28, 2009

Role Reversal

The boys have had an interesting weekend. They have had a little bit of a role reversal as far as changes go. Maxwell continues to fight to stay off the high-frequency ventilators, and has actually even gained some ground. The docs made a change to the way the conventional vent is working for Max (they have a few different "modes"), and the easiest way I can think of to describe it would be: instead of telling Max how to breathe, the vent is now helping him with his own breathing. Max has been doing some of his own breathing as of late, which on the "old" setup would actually hinder the vent and set off copious amounts of alarms. The new setup seems to be a little better for Max's size, weight and general attitude towards ventilation. They made the change earlier this morning (Sunday) and a follow up gas showed that it was working well and they were able to come down a little bit on his pressures. Not only is he still off the jet, but he is now gaining a little ground on the "regular" vent. His feedings continue to go well (still over three hours, and I think still into his intestines, but that might change soon) and his oxygen needs have been in the 35-40% range, which is good for him. Oh, that reminds me: Max is still on the Inhaled Nitric Oxide (INO) which helps the transfer of oxygen into the blood from the lungs. A number of weeks ago he was on a dose of 20 parts per million (ppm), and they successfully weaned him off altogether. A weeks or so after that, his oxygen needs began to climb so he was put back on it. Since then, he has been on a dose of 10 ppm, but they turned him down the 5 ppm this morning in an attempt to get rid of that machine for good. Please pray with us that this change will be an easy one for Max. He also has an ultrasound tomorrow to look for the circulation in his neck. His head has remained very puffy, and we had hoped that a few days off the jet would help a lot, but there has been no real change. They are going to look and see if there is any clogging in the neck area that would prohibit proper circulation. We pray that everything appears normal, but are ready to see the puffiness do down too.

Maximus and I had our first "skin-to-skin" or Kangaroo care time today. Studies have shown that the familiarity of our voices, heart beat, respiratory rhythm and even our smell are all very comforting to the kids. The comfort leads to deep sleep (not something they get a lot of with all the lights, people, other babies, alarms, etc.), and deep sleep is when most of the growth and development of the brain takes place. We were told this long ago, but recently watched a video on it at a NICU parent meeting and have recommitted ourselves to doing it whenever possible. It is a little more of a hassle than just swaddling them, but we will do whatever we can to give these boys the best shot possible. Needless to say, it works. Max and I took a nap for the better part of 2-hours, and I can only hope and pray that it was as special and healing for him as it was for me.

Here is a picture of Max staring at my hair. I have been getting a lot of people staring at my hair lately. In an act of desperation I cheated on my two normal stylists (sorry Heidi and Jordan) because I wanted it cut that day. All was going well until the lady asked if I had any kids, then she stopped paying attention to what she was doing, I think. She would be very successful in a military barbershop. Anyways...the picture:

Just to give an idea about how far these little stinkers have come, and how gracious and powerful our Abba Father is, here is a picture from the first time I held our son Max:

What a mighty God we serve.

Wesley has not really had a bad weekend, but they did end up putting him back on the CPAP. His oxygen needs had crept into the mid-50% range, and his breathing was getting a bit labored. The decision was made on Friday morning to put him back on, and since then his oxygen needs have dropped to about 30-35% range, so it has clearly made a difference. The docs thought that maybe parts of his lungs had collapsed, leading to the increased oxygen need and labored breathing, but "before and after CPAP" chest x-rays showed no change. This led them to think maybe he has some fluid building up in his lungs, so they started him on a diuretic called Aldactazide. Wes was on this drug once before, and it really stalled out his weight gain for about 10-14 days. In fact Kate and I feel that is why the boys' weights differ so much (Max weighs 6 pounds 13 ounces, Wesley weighs 5 pounds 14 ounces). We are praying that God will work through this drug and clear any fluid from his lungs, but not let it affect Wes' weight gain. Putting on the pounds is very critical for every aspect of their development right now. Weight gain means bigger lungs, bigger muscles, bigger brains, etc., so we hope we don't lose a few weeks of consistent gains like we did last time.

Wes is still incredibly feisty, but we don't think that reintroducing the CPAP has had a profound effect on his attitude. What does seem to have a profound affect on his attitude is his desire to move his bowels and his body's decision not to comply. His body will allow him to pass copious amounts of gas, however, and most of the people in the room are convinced that he needs to be changed...but no, his diaper is clean as a whistle.

Here is a picture from before they put Wes back on the CPAP...but he heard the docs talking about it and was assuming the position to ward off any attempts:


  1. We had such a nice time seeing you guys last night and we are so glad that you could come!! Your beautiful boys are in our prayers always.
    Thinking and praying for you
    Julie Arnoldink(and dave..)

  2. Still praying for Max & Wes. It is amazing to see how far they have come...God is Good!

  3. When I saw the picture of Max and how you are holding him this verse popped into my head..."see, we are engraved on the palm of God's hand" Isaiah 16
    God is faithful!
    Blessings & prayers