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....

Monday, June 8, 2009

Better day

Today feels like a better day. I am not sure why exactly, it just does. Max is actually up a bit on his vent pressures to 40 from 38, but the nurses and doctors felt that is to be expected because he is now off his Inhaled Nitric Oxide. I didn't think that was a very big deal, but the nurses have all said they are so proud of Max for making it as long as he has off the INO. They took him off it completely this morning at 6:00 A.M., and he had the same night nurse tonight as he had last night (Ashley), and she jumped up and down when she walked in the nursery and saw the machine was still off. She said the pressure changes are minor compared with being off the INO for this long. I guess I didn't see the INO as being a big deal, it just helped the transfer of oxygen into his blood via his lungs. Obviously that is a big thing, but he was doing that on his own before they started him on the Nitric. I guess it is a good sign of improvement that he is off the INO and still doing well. His oxygen needs are up to around 50%, but that is to be expected without the Nitric. He is still really puffy though. His neck ultrasound today essentially said he has Edema, which is not news to anyone. It is good news that the fluid is not anything serious and the ultrasound did report that his glands in the neck and chin area look good. It is going to be a wait and see type thing...our favorite. I think Kate and I just selfishly want it to go away because we almost feel like we don't know what he looks like. We have also noticed that he has a hard time opening his eyes, and we love to see him when he is awake. According to nurse Ashley, awake time for both boys is around 2:00 A.M. Please pray with us that God will change their schedules!! That will be so hard on Kate when they come home!! Max also had a heart ultrasound and the results from that looked good. Everything looks normal and his pulmonary and systemic blood pressures are what they would expect for a little guy like himself.

Wesley is just cruising along. He already scoots around in his incubator to the point where he either has to be swaddled better or placed at the bottom of the bed. The doctors are going to add a few calories to his feedings because he has not been gaining as much weight as they would like him to. I suggested that it is likely because he has been burning so many calories working out his neck and back muscles. I thought that was a somewhat funny comment because he was arching his back to the point were he almost rolled over when I said it...but there was only crickets. These people need a sense of humor.

As of tonight, Maxwell weighs 4 pounds 14 ounces and is 17 inches long. His weight is certainly overstated because of his Edema, but we are very proud of him none-the-less. Wesley tipped the scales at 4 pounds 4 ounces and is 16 and 3/4 inches long. Those are starting to sound like actual baby measurements. They are both getting a vitamin supplement in their feedings that is designed to help them start making their own blood. They have both received numerous blood transfusions over the last number of weeks because their bodies do not make new blood as fast as fast it is drawn out of their bodies for the 1,000s of tests that are run each day. But now that they are "big boys," they want to get their bodies producing blood on their own, so that is what the multi-vitamin helps with. What it does not help with is the odor of their gas and BMs. I had my first genuine gag reflex while chanigng Max's diaper tonight...and it was not cool at all. All of the nurses in the nursery could smell it, which is impressive on one hand...but a little scary on the other hand. My siblings have all told me that the diaper changing doesn't get too bad until they start eating pureed peas and squash...they lied to me.

I want to say a big "thank-you" to everyone who has taken the time to post comments on this blog. It continues to be a huge source of encouragement and Godly advice. Some days it feels like we are going through this alone, but the posts from family and friends remind us that we are not...and that is an amazing feeling. So thank-you. Your words have meant so much to Kate and I since even before the boys were born, and we plan to one day print all of these posts off, including the comments, so that we can share with our boys how many people cared about their well-being and prayed for their health. What an amazing testimony you have all been. Jesus has used you to speak to Kate and I...to re-energize and revitalize our spirits and our will to face another day. Thank-you.


  1. Wow...73 days and going strong! Those little guys are fighters! Just wait until they come home - you'll appreciate those nurses even more when you're the ones doing those 2 am feedings! :) Enjoy your sleep now while you can...
    Love you guys!

  2. Mark and Kate-

    Glad to hear Monday was a better day and the results from the ultrasounds were good. It's amazing how things change so quickly from one day to the next. All these little improvements the boys make are all adding up, there will come a time when you will say, has it been a year already. Praying for you all everyday.

    Tina Jacobsen

  3. Oh, you are not alone. We look forward to your posts and are praying for you and the boys everyday. They have proven strength already, but pray continued growth in that area.

  4. Never alone, guys, not for a moment- praying for you, hugging you from here, wishing we could all take a turn to give them AND YOU a break from the struggles. Jonny prays for them and asks every day if there is more news... I can't wait to meet them in person and hold them and tell them how proud we are of their fighting spirits and strength of character --both of which they got from you, to be sure.

  5. You guys are never far from our thoughts and prayers. Our kids, especially Noah (he loves babies), remember to pray every day for Baby Max and Baby Wes. We love looking at the pictures you posted. You have precious sons and we believe God has great plans for them (and you). With love & prayers, the Sluiters