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, October 4, 2009

Where to start...again

Man, I am getting bad at updating the blog...sorry about that. It has been a mixed week. I will start with Wes. He has been home for a week now an things are really going well. It has been a lot of fun for Kate and I to "be parents" in the more traditional sense, meaning we get to do everything. Wes has a fairly busy schedule, I think, but he is the only baby I have ever had to take care of 24/7, so I am not sure. Probably the biggest difference between Wes and other, non-micro preemie babies are the breathing treatments. Every 6 hours he gets 2 nebulizer treatments and gets a third treatment twice a day. We also do what is called "Chest Physical Therapy' or CPT (we just call it tapping) where we use this little inverted rubber cup to "tap" his chest. The idea is that the cup traps air and as we tap, there is a percussion type action to loosen any extra fluid in his lungs so he can cough it up. We do the treatments at 11:00 and 5:00 (morning and night), and so far, Kate basically gets stuck doing the 11:00 A.M, 5:00 P.M. and 11:00 P.M. treatments, and I do the 5:00 A.M treatment. She is fine with this setup as long as she doesn't have to get up for an hour at 5:00 in the morning. Needless to say, it has been a bit of an adjustment for me!! So I have been trying to get to bed right around 10:30 or so, up at 4:30, then work, get home around 5:00, and then one of us goes up to see Max for the night and the other takes care of Wes. Notice there is not a lot of "sit down and update the blog" time in there!!

Wes does seem to be getting a little infection of sorts around his G-tube site. It has been pretty red, but that is to be expected considering he just had a hole punched through his abdominal wall into his stomach a week and a half ago. We noticed it was a little white around the actual opening, but the surgeon who performed the surgery is not too concerned. We have been putting Neosporin on the site for the last couple of days and it seems to be helping quite a bit.

Max has not had such a good week. His oxygen needs have been climbing dramatically and as of this afternoon, he was at 95%. The docs have run the gamut with Max trying to figure out what is going on; his blood gases have actually improved over the last number of days (last night was 7.43 and 43), his demeanor has been great (lots of smiles), and his blood work all looks very good. They did do a culture of the junk they suck out of his lungs (he cannot cough or clear his through as you and I would because of the trach tube), and that grew two different bacteria, both of which he has had before. They have him on antibiotics to kill those off again, and luckily the bacteria are not very resistant to the medication. The infection could be contributing to his increased oxygen needs, but I don't think anyone feels that is the main issue. The neo docs had a lung doctor come and examine Max on Friday. She suggested that Max be given a follow-up heart echo and that they start a steroid treatment. So he got a heart echo done on Friday afternoon which showed no discernible change in his pulmonary hypertension, and the doctor that dictated the report estimated that Max's pulmonary pressure was about 58%, compared to 66% that the last doctor suggested. That is obviously a change in the right direction, but these are just pictures and not exact measurements. The fact remains, pulmonary pressure higher than 50% is a very serious issue. Please pray with us that the plethora of treatments Max is enduring as I write this are exactly what God will use to heal our son. God has asked so much of our baby boy and he still has such a sweet attitude and approach on life. His nurse just tonight said that Max is without a doubt the first child in the history of her nursing career to give her a smile following "trach care." By definition, kids are supposed to loathe trach care (every night the trach site needs to be cleaned with soap and sterile water, a new sponge has to be put in place and the ties the hold the trach in place need to be changed) but Max seems to understand that it is important and waits patiently until it is finished. We just really want him to feel better. I am sure most of you have heard of the Mark Schultz song "He's My Son" (you can find the lyrics here: http://www.christianlyricsonline.com/artists/mark-schultz/hes-my-son.html).
I have always liked how powerful this song is, but I cannot say that I ever wanted to be able to sing it from the author's perspective. But here I am. My 6-month old son is on life support with two man-made holes in his body to help him eat and breathe. So can you hear me God? Are any of my prayers getting through to You? What more can you possibly ask of my little boy? I believe that You are mighty to save, that You alone have the power to drastically change my son's circumstances. You have done so before, and we need You now more than ever Lord. You see he's not just anyone. He is Maxwell James Wiersma. He's my son.

Since it has been so long, I will include a handful of pictures for your viewing pleasure.

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  1. I'm sure life is a blur, especially with dividing your time between home and the hospital. But I am always so happy to read an update, so thank you for taking the time to fill us in on the latest developments with your little guys. I'm so glad things are going well with Wes, and I will pray that Max makes steady uphill progress and can soon join his brother at home. I also will pray for both of you, that you can sleep soundly when you have the chance, and that you will be able to avoid the colds and viruses this time of year brings around! (Great photos by the way!)

  2. Continuing to pray for all of you! Saying prayers of Thanksgiving that Wes is home again! I pray that he stays there for good now! I lift extra prayers for Max this morning! God knows your needs. I love that song as well and have thought about what it would be like to be in the authors shoes...I pray that you feel God's BIG hands around you!

  3. Enjoy your time at home with Wes and in your "second home" with Max. Your love and care for these boys reflects God's love. May God continue to give you perseverance and strength - and the same for each of the boys, in their own needs and ways. I think of you every time I listen to that Mark Schultz song, which is often, and it's just another reminder to lift you guys up in prayer. God has provided and He will continue to.

    Sarah Schreuder

  4. We forgive you for not updating the blog so often. We continue to check the blog and pray for you all daily (usually more!). It is great to hear about your time with Wes-that has to be so cool. We will pray extra hard for Max-that he will grow and heal, and that there will be answers to his increased O2 needs.


  5. We continue to lift you all up in prayer and praising God that little Wes is home again and doing well :) Praying that Max's lungs will grow and develop and get strong so he can join you all at home! Praying that God will heal Max's lungs and guide the docs in the right direction. Praying for you all and praying for rest and healing for your family. Love the pics, as always they are some handsome dudes!!

    Tina Jacobsen

  6. Thank you for taking the time to let "us" in on your world. We pray for you daily and think of you more than that. You see, I can only imagine what a busy life you and Kate are living right now. You have two precious little lives to care for and love upon. I love hearing how they are doing, but I also love to pray for you too. As a former NICU parent, I know it's tough. I felt like almost every song on the radio I could relate to...either gain strength from or break down in tears. God's sooo amazing and sooo out of our "ordinary". He knows things we will never imagine to know. To that I am glad. I pray God will change things around for Max so he can come home too. I'll pray for him every time I think of him...if even a little arrow to heaven. Please know you are loved! hugs to you and Kate and your beautiful boys! -Sue Nykamp

  7. Wow, powerful words. We are praying and will continue to pray. You all have been through so much and I pray that God will provide extra strength to each one of you this week. Max and Wes are touching lives....thank you for sharing them and their story with us.

    The Meyaard family

  8. You don't know me, but I just found your blog through http://margaretshopechest.blogspot.com/. I've been reading about and praying for your precious boys all morning. We have twin girls and although we didn't face complications with their birth I can just imagine how it would feel to have faced what you have. That Mark Schultz song always makes me cry, but now it will also remind me to pray for you again. Your sons are extremely lucky to have you as parents. God knew what he was doing by giving these special little boys, very special parents. I pray for continued healing of their little bodies and God's peace for your whole family.

    Angel Eagen, in Minnesota

  9. The photos are so, so sweet! Thanks for the update...we always keep the boys in our prayers but it's nice to know how to pray specifically. I can't imagine how busy you are and how absolutely exhausted you must be. Praying for energy for you both and for good news on Max soon.
    Love you guys!