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, August 24, 2009

Big Day for Max...and Wes?

Well, nothing ended up happening today. But we did find out that everything is going to be happening tomorrow. We found out at about 5:00 this evening that Max will be going down to the OR at 7:30 tomorrow morning, and he will be having really 3 and a half surgeries. The first will be what they call a "nissin." This is a procedure in which they wrap the opening at the top of the stomach, I think with part of the muscle around the esophagus (but I could be way off, I am recalling that info from about a 2-months ago) to prevent any reflux. Surgery #2 with be the G-tube in which they install a port directly into Max's stomach for feeding purposes. Surgery # 1/2 will be a circumcision...might as well just shock every system in the kids body while we are at it. And surgery #3 1/2 will be the trach. I think that is the order they go in, but I am not exactly sure. What I know is that when he gets wheeled into the surgical room where we cannot follow, the next time we see him he will have a lot of new hardware, but likely nothing on his face!! It has been 5-months and we have yet to see a completely unobstructed view of Max's face without tubes, hoses and tape. This is me looking for the bright side. All of our "primary" nurses has been great through this whole process: supporting us when we wanted to give Max a shot and the docs didn't, and also telling us when it was time to move ahead with the trach knowing how we felt about it. Their experience and the great relationships we have built with them over the last 5-months have been paramount in Kate and I finding some peace about this whole situation with Maxwell. So a huge THANK-YOU to Nurses Ashley, Becky, Cathy, Emily, Jessica, and Sara (I put your names in alphabetical order on purpose), and, although not our primary nurses, Amy, Anne and Monica (they have been there when we needed them to be)...we love you all. You have been through the trenches with us, supported us, fought for the boys when we couldn't be there and left an indelible mark on Max and Wes, Kate and myself. Now here we are, the night before the trach surgery. This has been in the making for 2-months. Trach surgeries usually don't get contemplated as much as Max's has. 9 out of 10 trach surgeries are because the patient has a bad airway and access to the lungs is constricted, and a lot of times are done almost on an emergency basis. Max is the 1 out of 10 where his airway is fine but his lungs are chronically sick. Kate and I have tormented about this for a long time. We did not want this for Max, but it is obvious to us that this is the right thing for him now.

He wanted us to know he is ready to rock and roll tomorrow:

And now for something completely different. Kate got a call from Dr. Dustin this morning and he said...and I quote, "I think Wes can go home on Friday." When Kate called me, I couldn't speak. It is every emotion you can possibly imagine all at the same time. The thought of him actually being here in our house seems like a cruel joke. I have been looking at their empty cribs every day for a long, long time. With everything going on with Max this week, we are actually going to push him coming home until Monday I think. That probably sounds ludicrous, but we have to do the following before he comes home:
1) Take the "Going Home" class
2) Get certified in CPR
3) Take the car seat class (you know, 90% of all car seats are installed incorrectly)
4) Learn how to thread Wes' feeding tube up his nose and into his stomach, testing to ensure proper positioning
5) Being trained on Wes' respiratory treatments, which are done 4-times a day (one of those times is at 2:00 in the morning...sorry Kate!!!)
6) getting set up with an Occupational Therapist who will work with Wes on bottle feedings
So, that is a lot of stuff to do before Friday with Max having major surgery tomorrow. Hope that all makes sense.

At the end of the day, the reality is that these kids will leave the hospital some time. A few times I didn't think that would ever happen. I am going to miss being a parking garage and hospital snob. I will not miss the cafeteria for one second. Unless they have chocolate covered raspberry ice cream. That is the only redeeming thing about the cafeteria. And Sour Watermelons. I guess we will have a number of weeks visiting Max yet to enjoy a lot of those things.

I am going off on a tangent. We cover your prayers for Max tomorrow. Or right now. Tomorrow is a really big day, a lot of invasive surgeries, a lot of room for error. Pray for the doctors, pray for the nurses, and pray for Kate and I. We will be at the hospital at 6:00 or so tomorrow morning following a poor night of sleep I am sure. But focus your prayers on a successful procedure, and a lighting quick recovery. We cannot move Max around too much or hold him for a few days, so we hope that those days will pass quickly. Thank-you to all of the faithful prayer warriors who have been with us through this journey. A journey that started on March 9. A journey that is taking a turn, but will not be ending in the near term. Thank-you for your support. Your prayers have sustained us.


  1. Now I understand more fully Kate's Facebook post. We're praying for you. That's really all I can say, because I can only imagine the emotions. I'm waking up and praying first thing tomorrow as well. You know... You may not be able to be in the operating room, but someone even BIGGER is going to be there. Max is in good hands. Hugs - Sue and boys

  2. Lord Jesus...you are the Creator of Max and Wes...you know them by name. You see them, hear them, knit them intimately in their mothers womb. Lord we know you will be present with Max tomorrow. We ask for successful surgeries, that you would guide the hands of the doctors and that we would all be able to look back and say TO GOD BE THE GLORY, GREAT THING HE HAS DONE!
    Bring peace where peace is needed, bring healing where needed and most of all bring your presence into that operating room in Jesus name. Amen

  3. Mark and Kate-
    I have continued to pray for all of you very consistently. I hope all goes well with the surgeries. I can only imagine what you both are going through. Just know that you have so much love and support behind you! God is GOOD!!!

    Lindsey Grant

  4. Wow...what a lot of things to pray about, think about, and plan for! I'm sure you're excited to be bringing Wes home, but probably a little scared too. I remember having mixed thoughts when we brought our boys home one at a time...wanting them home, but feeling more secure with them in the hospital knowing that the nurses and docs were taking such good care of them! All of the time you have spent in the hospital taking care of Max and Wes has prepared you for this, though. You will be GREAT parents (you already are!). God didn't choose just "anyone" to take care of Max and Wes - he chose you two! He knew you'd be the perfect parents for them and that you would do an amazing job, with His help!

    I will be praying for Max and all of you tomorrow. It will be so neat to see his little face without all of the hardware! And I'm hoping that he'll be able to make bigger strides once these surgeries are over, and before too long, you'll be able to have him come home, too!

    Love you,

  5. Hey Wiersmas! Been following your blog for a while now and am finally getting the courage to comment. You guys have been so patient through all of this, such a looong time. I admire that. The moment you bring Wes home will be so wonderful (my son's hospital stay was a mere 74 days but nonetheless, coming home is beautiful!) Then Max's turn!
    I will pray tomorrow morning that all goes perfectly for Max. Go Max go!!! Our son Milo had a G-tube/Nissen procedure in July and we joke about the advantages of it (it's actually the top portion of the stomach that they wrap around the esophagus). We can feed him anywhere- even in the car! It's really not bad, and there is comfort knowing that they are not having any reflux pain or risk of aspiration.
    Praying to our Almighty God for you precious boys!

  6. What a cute picture of Max!!! Praying his surgeries go well tomorrow. My niece had a g-tube (and Mic-Key at one point too - not sure the difference) Praise God for great news for Wes, how exciting!! What a wonderful life change that will be for you!

  7. Hi, I just found your blog and wanted to let you know that I will be praying for you and your little guys. Sounds like a bunch of activity this week, but it is all progress. My son (also named Milo) had a trach from 4 months old until 1 month ago and was vent dependant until just before his 2nd birthday. He still has his g-tube and has just shown more of an interest in eating. He didn't get to come home until he was 16 months old. I just wanted to let you guys know that life can continue in a normal-ish fashion even with all the equipment, hardware & nurses. In time you will be able to take little Max anywere with the vent, it takes a little preparation and planning but it is doable. Learning to crawl & walk attached to a ventilator was interesting but he did it. Please don't hesitate to contact me if you have any questions about living with a trach/vent. Good Luck to all of you in the coming week!

  8. Mark & Kate,
    According to your post, you are already at the hospital for Max's surgeries. We're praying for you that God will guide the surgeons' hands and the nurses too as they work on Max. We pray too, that these surgeries will give a big boost to Max's growth and development and healing. How exciting to hear the news about Wes! How scary at the same time! :-) I'm understanding Kate's FB status from last night a bit more now. We love you Kate, thanks for a glimpse into your heart, so perhaps we can know best where to help! We are praying!


  9. Praying for Max and rejoicing in the fact that Wes may soon be able to try out his very own crib in his very own room at his very own home! :)

  10. Mark and Kate, My prayers are with you all the time, God is good, God is in control, Glory be to God from whom all blessings flow. Prayers go up to God for Max today and Wes also, also prayers go to God for both of you, that you may remain calm and at peace with God's decisions. On a different note I would like to wish Kate an early Happy Birthday, some of the most wonderful people have been born on this day, me included. Have a great day. God Bless You.

  11. Kate and Mark,
    I will be/am praying for your precious son, Max, a lot today. And for the two of you and Wes.
    Zephaniah 3:17 says---
    The Lord your God is with you,
    He is mighty to save.
    He will take great delight in you
    He will quiet you with his love,
    He will rejoice over you with singing.
    My prayer is that the four of you will feel that quieting love today.
    Glady Kuipers

  12. Praying, Praying, Praying.......

    Tina Jacobsen