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....

Saturday, December 19, 2009

And we're back

Hi everyone! It has been a LONG time since the last post, and I apologize for that. This whole "living in two places" thing is getting really old. Every time I wanted to sit down and write a post, something came up, or it was too late in the day, or there was an issue with the computer...but I am back.

The last couple of weeks have been challenging. To answer the question most people will likely have: Max will not be coming home before Christmas. He was doing really, really well right up to the vent discharge meeting, and a number of changes were made to his medications, dosages and frequency right around that same time period. This combination of changes did not sit well with Max and his oxygen needs increased to the 45-50% range for a long enough period of time that it "reset the clock" so to speak on him going home. I am happy to report that after a little recovery period, Max is doing well and seems to be back to himself. His oxygen requirements are back in the high 20% to low 30% range, and he is on a manageable breathing treatment schedule (4 times a day instead of 6). Even though Max is no longer scheduled to come home next week, we had this past Thursday night planned for what they call "rooming in." This is when Kate and I (and Wes) spend a 12-hour period (overnight) with Max in a room adjacent to the NICU, and we are responsible for all of his care. This was kind of scary and really exciting at the same time. We got there around 5:30 and got settled in (the room was about 10x14 if I had to guess). The room has a couch that folds down into half a bed, so we took along the Aero Bed (thanks AGAIN Tony and Cara), and we also had the Pack-n-Play for Wes, and they had to fit Max's crib and all of his hardware in there too. Needless to say, it was pretty tight. By in large, the night went well. We did have one event at about 11:00 where we had to change out his trach because he was desatting a bit. This is not an easy procedure, but it needs to become second nature for us, so the practice was good. The problem is that it was just practice and wasn't necessary. The reason he started to desat (meaning his oxygen saturation fell outside of the desired range) was because of a nebulizer that we had plugged into the "ventilation circuit" for a breathing treatment that was not properly assembled. It took us a little bit of time to deduce down to the nebulizer being the problem, but it was a very good exercise to go through in the hospital vs. our first night home. "That is why we have people room in" was a common phrase the next day. Nurse Ashley was actually in the room when all of this happened, but she did her job and stayed out of the way and offered what I will call "limited" hints. I ended up getting some good sleep, but I had been up since 4:30 in the morning and had worked 11-hours before driving straight to the hospital...so sleep came a little easier for me than Kate, not that she didn't have a stressful day getting everything together that we would need to have Wes out of the house overnight. Max sets off a few more alarms than his brother does, and they are certainly more shrill. Turns out I can sleep through those too, which should come as no surprise to anyone who has ever had the pleasure of sharing a house with me, but they kept Kate awake. In time I am sure she will get comfortable with them and the fact that we will have a nurse in the house when we are sleeping should help a little bit.

So the new date for Max coming home has been penciled in as January 4 or 5. We are so excited. It would have been great if he could have come home before Christmas, but at the end of the day we want him home when he is ready to be home. Please join us in praying that Max can stay infection free for the next few weeks (and years!) and that we won't have any unexpected bumps along the way.

Wes has been a good boy with all of the crazy stuff going on. We had a lot of training on the equipment Max is coming home on and he slept through the whole thing. Then he slept for about 13-hours straight at the hospital on Thursday night, despite all the new alarms and surroundings. We did finally get his surgeon to agree to an upper GI, and that all looked good, so hopefully no additional surgery. Naturally, the day after the procedure Wes spit up formula for the first time since he had his surgery. So something is either wrong and not showing up, or the retching is some sort of learned thing. We don't know, we just know we want it to go away.

We covet your continued prayers for the boys and for us. The last few weeks have made us realize what exactly it will take to care for Max at home, and it seems pretty daunting right now. Pray that our nerves will be calmed and we can make all of the arrangements necessary before he joins us here at home.

Here are some more recent pics:


  1. You guys can do it..there's no doubt in my mind!! Look how much you've survived up until now. I know how daunting it is right now...hang in there. After a couple weeks, you'll feel settled in.

    If you have any questions about our set-up at home for Ella's trach let me know.

    Don't forget to breathe...keep taking one day at a time. We will continue to pray for you all.

    Enjoy your boys, the best Christmas presents ever!! What a great new year this will be!!

    Love you lots,

  2. Sorry to hear that Max won't be home for Christmas. It's great to hear that it shouldn't be long.
    That picture of Wes is so funny. He seems a little silly.
    Sending lots of prayers your way for peace during these difficult holidays.
    Love-Stacy, Geoff, Cassidy, Evan & Sadie

  3. That first picture of Wes is SO CUTE!!! What a pout. We always pray for you and will continue to pray for Max's homecoming and that you have peace about it. You can do it! :) Love you guys!

  4. We're praying for continued good reports for Max as his body prepares to come home. We know God will give you all you stand in need of to care for him as you've cared for Wes so well at home. Praying that God will give you peace and patience as you anxiously anticipate the coming days.

    Joel and Sarah

  5. Thanks for the update!! Max will be HOME soon, how awesome, what a great way to start the New Year!! Praying for no unexpected bumps for Max, that boy needs to come home!! Praying also for answers to Wes's retching. We will be praying for you all over the coming weeks as you get prepared for Max to come home and get into a good routine caring for both boys. Have a very Merry Christmas...your 1st with your boys...so very special!!

    Tina Jacobsen

  6. Still thinking about you all the time! We will pray extra hard these next few weeks while you anticipate Max's homecoming.

  7. Hello Mark and Kate,
    We continue to pray for you and the boys.
    Praying that Max will gain strength and be able to come home soon to play with his brother.

    Have a blessed CHRISTmas

    Jim and Kath

  8. Thanks for the update. We're continuing to pray for Max's health so he can join you guys at home. Praying for God's strength, hope & peace to fill each of you!
    In Him,
    Amy & Brent