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....

Tuesday, July 28, 2009

Family Time

The last couple of days have been good days. Max continues to do well on the CPAP and is quickly growing to hate the apparatus as his little brother did many months ago. The decision was made to move Max to a bubble CPAP like Wes has...in other words, CPAP without a ventilator. It feels so strange. Max was at one time a collector of expensive machinery, and now he is hardly even using any electricity!! I was talking with one of the doctors the other night and said, "I feel like we aren't getting our money's worth around here anymore. First they move out of their $60,000 high-tech incubators into these steel cage cribs that look like they are made at Jackson State, and now the boys respiratory needs are taken care of via some cheap tubing and a jar full of distilled white vinegar." I don't think he caught the sarcasm in my voice and awkwardly walked away. That was fun. Max's oxygen needs have been in the 37-45% range. His gases over the last 24-hours have been very good and likely warrant another change to the CPAP pressure, but the doctors and NNPs (Neonatal Nurse Practitioner) have decided to give him a few days between PEEP changes so that they do not "pull the rug out" too quickly. Kate and I agree with this approach and are enjoying just being ecstatic about Max's progress. I cannot believe how many prayers God has answered in the last few days alone. After months of no change or bad changes, this has really been an revitalizing couple of days. Max weighed in at 8 pounds 6 ounces (I think). One down side to the steel cribs is the lack of a built-in scale, so we are trying to find a new "base-line" weight measurement with a new scale.

I would say the talk about a trach (trake) for Max has kind of quieted down for now. I have to start calling it a "trach" because Nurse Anne read the blog and made it a point to correct the error of my ways. Sorry Anne, I am a humble banker and prefer to spell made up words in a phonetic way...but you are the expert. So from now on: trake = trach. If I were to guess at what a doctor would say in response to the "does he still need a trach?" question, it would be as follows: "He has really surprised us in the last week or so, but I would imagine a trach is still a very good possibility." So we are not going to ask and just focus on enjoying Max's improvements. The picture below is of Max on the CPAP. He is also all dolled up in his Denver Broncos themed outfit for his 4-month birthday pictures (Monday was 4-months):

Wes got to start weans AGAIN. We have voiced our concerns about the inconsistencies with the whole weaning process and feel like we may now have a plan. So Wes has been getting 1-hour weans twice a day since Monday evening. He loves it..but maybe not as much as we do. He is such a sweet little boy apart from the CPAP. We thought for sure that Wes was going to be an angry child and a real menace, but after seeing him off CPAP a couple of times, I think we may have grossly misjudged him. Wes also tipped the scales at 8 pounds 1 ounce tonight!! Way to go
Wesley!! You are catching up with your big brother pretty quick!! The picture below is of Wes sitting on my lap while I share with him the story of John Elway and the Denver Broncos and the road to back-to-back Super Bowl Wins. He was mesmerized by the story, as pretty much everyone is.

With Wes on nasal cannula weans and Max on CPAP, we had the opportunity to take some family photos. Kate and I were reflecting together on the way home last night how much fun it was to just enjoy being parents. This may sound odd, but we have not been able to do this yet. Our days have been filled with so much worry and concern about the next 5-minutes, 5-hours or 5-years, what kind of quality of life do the boys have to look forward to, when is the next bad gas coming, when is the next infection coming, etc. But last night, we just had fun.

Notice the Denver Broncos and University of Michigan outfits. We had to get the boys dressed up for their 4-month photo shoot with Nurse Ashely, and Kate is adamant about "coordinating but not matching." I can think of no better way to accomplish this then by donning the team colors!!


  1. Mark & Kate, great news and great pictures! Max still being on the CPAP machine is great. I couldn't help but notice that, while you have to wear the gowns and gloves, you still get to wear flip-flops and bear feet. :-) We are praying that the current course of improvements will hold! Max & Wes, you have awesome parents. Keep up the good work!

  2. I love your sarcasm and sense of humor, Mark. I bet the look on the doctor's face was priceless after your comment about not getting your money's worth! :) I'm rejoicing with you guys about the many answered prayers in this past week. Trusting God for many more! You are a beautiful family; so glad you could enjoy some time together with the 4 of you! Brent and Amy Sluiter

  3. Love the pics! And thank you for your continued updates. We continue to keep you in our prayers and are so thankful and praising God for the many miracles he has done with these little guys!

  4. Awesome, great to hear that they are both still doing well. We can't wait to see them soon. Keep up the Broncos History lessons. I will be quizzing them someday.

  5. Happy 4 months to your precious boys! How wonderful you could have some fun, relaxed family time together. Praying for many more great family memories for the 4 of you. You all look great!

  6. So Glad to hear the boys are having good days and praying that continues...no more setbacks only steps forward :) Continued prayers for healing, strength, rest and peace for you all. Way to go Max and Wes...keep surprising those doctors and showing them how strong you are...John Elway Strong!!

    Tina Jacobsen

  7. What a blessing to enjoy this time as a family. Another answered prayer. May you continue to rejoice in the "baby steps" of progress - God has given you an eye for these and it blesses us all when you share them. Continued prayers are being sent on your family's behalf.

    Joel and Sarah