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....


Sunday, July 12, 2009

Due Date

107 days. 15 weeks and 2 days. Kate's original due date was on Saturday, July 11. With twins, they pretty much told us that if Kate went into labor anytime after about 36 weeks they wouldn't stop it, so we never really thought 7/11 would be the day/week the boys were born. Regardless, it was a big day because the boys are no longer "negative" days/weeks old. They are term babies now...in the very lightest sense of the word. The only difference is that they have both been on life support for many many months (Max still is), have both had heart surgery, require a very skilled team of nurses and doctors to sustain there livelihood and will continue to be in the hospital for many weeks or months. This is not something we ever really think about, frankly we don't know any better. But this weekend it was a little different.

I will start with Max. He had been hanging out with no real changes over the last few days. They have weened his INO down to 1 part per million, and his oxygen needs had been in the 45% range. Still at a pressure of 28 at the vent. Notice I am writing all of this in the past tense. Kate held him for a while to day and he started to get a little agitated, which almost always means he needs to be suctioned out (tube down the throat into the lungs = no ability to cough, clear throat, etc. to get rid of secretions in the lungs) or he needs his diaper changed. His diaper was clean, so we asked nurse Mandy to suction him. She wasn't assigned to the boys today, but our nurse was at dinner, so Mandy was nice enough to help. We ended up having a repeat of the "incident" that happened a few weeks ago when the suction hose did not work, meaning Max got a shot of saline into his lungs. Apparently some time while Max was moved in and out of his incubator, the suction tube came disconnected from the wall. I personally reconnected the tube this time...and it will require the strength of 10 men if they think that hose is ever coming off again. This all happened at about 6:00 tonight. Max has recovered much better than he did last time (I hope it is not because he is getting used to it), but only his blood gas will show the real level of his recovery. His gas last night and then again this morning were both great...but no vent changes were made. The last time Max got a shot of saline in the lungs, his vent needs went up by quite a bit, so we are praying that is not the case this time. Max tipped the scales at 7 pounds 15 ounces last night (don't have tonight's weight yet).

Wes has had an okay couple of days. No real changes, but he does seem to be working a little harder than usual with his breathing. There is a technical term for it, but it escapes me right now. They did start both boys on a multi-vitamin a few days ago. I hope it has some good medical benefits because the side effects include terrible gas and a backed up intestinal tract. This has been particularly true for Wes. He has been trying very very hard to go poop and has not been successful. He does send up plenty signals that would lead you to believe he has finally "done the deed"...but no. We are hoping that a very full belly and intestines are keeping his lungs from fully expanding...because his breathing is very labored. This was the reason he was taken off nasal cannula and put back on CPAP. A step back from here is a ventilator. I think I can speak for both Kate and myself when I say that would just be too much to handle right now. Wes weighed 7 pounds 8 ounces tonight.

Kate's Mom purchased two outfits for the boys to wear home from the hospital. It was something that she really wanted to do when it became clear that she would likely be watching from Heaven that day. It looks like the boys will be in the NICU for much longer than we originally thought, and will certainly be too big to fit into these outfits, so Kate and I got them dressed up for a little "due day photo shoot" yesterday. Here are the results:

Max and Mom (the outfit is not very visible here, but it matches the blanket he is wrapped in)

Super Wes (This picture was taken through a very coordinated effort where I held Wes' pacifier in his mouth until Kate was ready to take a picture...then we did a "1-2-3 go!" type of maneuver where I jumped out of the picture and Kate snapped a shot. As you can see, a millisecond is all Wes needs to spit out his pacifier and get his hands over his head!!)

3 comments:

  1. I know that none of this is at all the way that you expected it to be when you foudn out that you were going to be parents...one thing is for sure, God has a plan. Even before Max and Wes were born he had a plan for thier lives... right now I know it is very over whelming for you and your tired and frustrated hang on.... Hang on to Jesus, He is holding onto each one of you! He promises that.
    Max and Wes are precious, I can only imagine thier grandma smiling as she sees them in the cute little outfits they are wearing that she picked out special just for them.
    Blessings, hugs and prayers too...

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  2. This is what Wes is saying,"NOOOO not another pic PLEASE!!!!
    Praying that he will stablize with his breathing and not take a step back!

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  3. *hugs and prayers* I just read this in an e-mail i subscribe to about grief. your tone sounds sad in this post, so maybe this will help some.

    "be strong and take heart, all you who hope in the LORD" Ps 31:24

    Anne Graham Lotz defines hope: "biblical hope is aboslute confidence in something oyu haven't seen or received yet, but you're absolutley confident that whatever God has said is going to come to pass"

    She also declares that "Jesus is your hope for the future. One day JC will come back, and he will set all of the wrong right. Good will triump over the bad. Love will triump over hate. Righteousness will triump over evil. He's going to make it all right, and you can have absolute confidence that's going to take place. That is your hope"

    Soverign God, i choose Hope. I choose faith, I choose life. Give me an unshakable faith in you. Amen.

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