Wiersma Family Blog

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, November 9, 2009

Winded

It is getting harder and harder to find time to sit down at the computer to get the ole blog updated...but I will keep finding that time one way or another. The last week has been okay. No real bad news, but we did get our hopes dashed with Max coming home for the time being. The NICU docs had written an order to get Max a home vent (the vent he will have for the foreseeable future). When the person from pulmonology who orders the home vents stopped by to see Max, she noticed that his oxygen saturation range was 85-100. Apparently Max has to be at a saturation range of 90-100, but this change has caused his oxygen needs to climb above 40% (into the mid 50s). If his oxygen requirement is over 40%, no home vent and no plans on coming home. This was especially hard to hear. We feel like we have been patient, and we were really excited about the idea of Max being home by Christmas. Now that idea seems like a pipe dream. I just want my family together again. I don't care if I never sleep again, I just want to spend time with Kate and our boys, not driving back and forth to the NICU. Right now, Kate and I take turns going to visit Max each day, so the other stays home with Wes. The rest of the day I am either sleeping or at work, so we spend about an hour during the week parenting Wes together, no time with Max together, and maybe a couple of hours on the weekends. It is getting old. We are just worn out and cannot wait until those nights spent apart visiting Max in the hospital can soon be spent together with both boys at our home. We let ourselves get very excited, only to be knocked down for the umpteenth time. It is even more difficult knowing that something as seemingly simple as Max's oxygen requirement is what is keeping him there. I haven't updated weights recently, but Max tipped the scales at 16 pounds 5 ounces last night. He is growing out of 9-months clothes, and he is a 7 1/2 months old micro preemie who entered the world weighting 1 pound 10 ounces. He is officially on the growth chart for kids who are born at term for his age. Everything just seems to be working so well, but his lungs just don't want to cooperate. Please pray that God will grant healing to Max's lungs, and patience to his parents while we try to wait on God's timing to reunite our family.

As you can see from the video below, being in the NICU doesn't seem to bother Max too much. He was ALL smiles yesterday!!

video

Wes continues to be himself. He has Kate wrapped around his finger something fierce. One little whimper and he knows he gets to take a walk around the house while getting his little butt patted and listening to his Mom sing him songs. Sometimes I think he looks at me with a, "ha ha" type of look. The reflux continues to be an issue and Kate and I are getting sick of it. We have doubled his dose of Prevacid, gone back to drip feeds, and it feels like the reflux/retching has maybe worsened a bit. The surgeon who performed the Nisin G-tube surgery won't agree to another upper GI procedure (an x-ray procedure to examine the esophagus, stomach and upper intestines), he would rather put an extension on Wes' G-Tube so he again is fed directly into his intestines. Kate and I would rather not do this because Wes will be beside himself hungry. We are contemplating taking Wes to a Chiropractor to see if that would help. Pray with us that God will reveal a clear path towards healing, and if He wants to do that apart from medicines and other methods...that would be good with us!! Wes weighed in around 13 1/2 pounds last week, so he is going to have to step it up if he thinks he is going to win any wrestling matches against his big brother in the near future!!

Here are some random pictures from the last couple of days:







Those of you keeping track of the Twinners on the Lamar's blog already know that Adalyn and Emma were born on Thursday morning at 25 weeks 2 days weighing about 1 pound 15 ounces each and 14 and 13 inches long, respectively. I was blessed to met them yesterday with their dad Dave and grandma and grandpa Lamar. The girls are doing great thus far, Adalyn is even breathing on her own with no ventilator and no oxygen!! Quite a feat for such a little girl. There will be a battery of tests and test results in the coming days, so pray for the girls and pray for their parents. We pray that those little girls breeze on through the NICU at lighting fast pace.

It was a real blessing for me to see those little girls as reminder of how far God has carried Max and Wes. It is very easy for me to forget the past and get angry and lose patience about the present, but seeing Adalyn and Emma reminded me that God has never let go of our boys, and he will never let go of the Lamar's girls. I have really been struggling with God's timing in the past few months and it has given way to a lot of anger. Meeting Adalyn and Emma was a really good reminder to me that God is still in control...even after 226-days.

9 comments:

  1. It just doesn't seem fair--all that you've had to endure. I'll pray for a reprieve. I'll pray for your situation to improve with the right levels to come so that you can be a family of four--at home. Your boys are both beautiful and it's no wonder why God chose the both of you to be their parents. I'll pray for the Wes to not need to be hungry either--for their to be a solution.

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  2. Dear Mark & Kate,
    226 days is a long time.... we're talking endurance beyond any marathon or iron-man here! We have not...and will not...stop praying for you guys each day. My prayer for you guys today is that God gives you His strength when you are weak and tired. That He would remind you that He is the same... the King of kings and Lord of lords... just as He was 226 days ago, 226 years ago...and He'll still be the same in 226 days, 226 years... forever! Always perfectly loving, faithful, gentle, Holy, and holding you tightly in His hands. We're going to continue to ask Him... the Almighty Healer... to touch Wes and Max with His healing hand. May the doctors and nurses be astounded as He gives healing to their lungs! May He recieve all the glory! And as you wait and continue to endure through this long race: "I pray that out of his glorious riches he may strenthen you with power through his Spirit in your inner being." (Ephesians 3:6). Love you guys! Amy Sluiter

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  3. P.S. I love the pictures and video. They are just precious!!!!

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  4. Dear Mark & Kate,
    I will continue to pray that Max will join you at home sooner, rather than later. And my prayer for you is "those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" (Isaiah 40:31). Thanks for your witness to God's faithfulness through all of this. You have truly come a long way!
    Larry

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  5. We are still here consistently praying for all four of you!

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  6. That video is so sweet!!
    We are praying for GOD to give you answers to these hard questions and the strenght and patients to carry you past all of this.
    Your boys are GREAT little boys!
    Love you all,
    Stacy, Geoff, Cassi, Evan & Sadie

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  7. Mark, Kate, Wes & Max-
    My prayers go out for you. I can only imagine the frustration that you are feeling. I will continue to keep the two of you are your boys in my prayers. I know how easy it is to forget that God is in control when you are feeling frustrated. Unfortunately I think those are the times He is testing to see if we still trust Him. I pray for peace for both of you as you continue on this journey. I boldly ask God to decrease Max's oxygen needs so that he can come home and you can be a family. I also pray that Wes begins to tolerate his feedings better. My heart is with you!
    Lots of Love,
    Abi, Dave, Adalyn & Emma Lamar

    P.S. I stinkin love both of your boys chubby cheeks! I keep tellin Adalyn & Emma they gotta work on their cheeks on both ends :)

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  8. What a blessing your boys are! I just adore the pictures. They are looking so different than just a few weeks ago. Love those cheeks and LONG eyelashes! We will continue to lift you up in our prayers...never thought when we met you that you'd be up there more than 226 days! You are an amazing couple and family! I am sure your knowledge of the NICU is helpful for many people up there. If you ever run into the Westras - Nicki and Jeff - they have a little 26 weeker up there - Melanie. Please continue to shine God's love and power and we will pray you are united as a family once again!
    Hugs to all of you - Sue Nykamp and boys

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  9. Thanx for all the updates Mark,
    We continue to pray for you and Kate and the boys.
    Jim and Kath Terp

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