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....


Wednesday, September 9, 2009

Hanging in there

The boys are both doing about the same. Max has had some more up and downs than Wes has, but mostly from an oxygen perspective. He was as high as 80% a few nights ago, but after some dips down into the low 30s, he has settled right around 50%. This is still higher than his post-op baseline of about 40%, but they have made a number of changes to his ventilator, so it is hard to really compare. they have not changed any of the pressures on his vent, which are the numbers I typically reference on here, the changes have been to the way the vent works with his breathing. I did not understand hardly any of what the doctors and respiratory therapists had decided to do...but thanks nurse Mandy for trying to explain it to me!! We had a nice 15 minute conversation that basically ended with me saying "in English please." I don't want to toot my own horn, but I have become pretty familiar with this particular vent, and I have no idea what the changes they made are actually going to do. We were concerned that Max might be getting sick as well, and that was causing his O2 needs to jump. We are starting to feel like that might not be the case. He is cool as a cucumber as always...but if he is uncomfortable, his frowny face will break your heart. The corners of his lips can actually touch his jaw line...it is quite remarkable. Anyways, he never seemed to be feeling ill, but he was requiring a lot of "suctioning"(the trach keeps Max from being able to really move any "stuff" out of his lungs via coughing, so it needs to be suctioned out periodically so it does not plug up the vent tube). That seems to have decreased as well, so we are hopeful that God has once again answered our prayers and spared Max from getting sick. He has been through a lot in the last few weeks, and we just really pray that God will continue to be very near to him and keep him company with Wes gone...although Wes is not too far away.

Here is a recent picture of Max. Kate and I have been trying tirelessly to get him to smile. I think it is hard for him because his cheeks are so big and it requires so much energy to lift them. That is another way of saying he usually just gives us this look and we have not been too successful just yet.



Wes is still doing about the same as he was on Monday, at least from a clinical perspective. His is still on a CPAP of 6 and his oxygen remains right around 45-50%. His attitude is quite a bit better though. He has gone from being inconsolable and clearly in a lot of pain to being much more himself. Kate has even been able to get a number of ear to ear smiles out of him...not bad for a kid with two giant prongs shoved up his nose, a head band that he hates, a feeding tube that goes up his nose, down his throat, through his stomach and into his intestines, and a monster IV in his foot with basically a cast on to protect it. We were not able to catch any of his smiles on film, but we did get this picture which shows the contrast between how he looks/feels about his Mom and how he looks/feels about me. He definitely recognizes me, but it doesn't always bring a smile to his face. It is more of a "I have got my eye on you mister" type of look.


Kate was able to get this cool video of Wes watching his Fisher Price Rain Forest mobile. He is in love with this thing. He had one just like it in the NICU, and Grandma and Grandpa Wiersma though he should probably have the same one at home. So Grandma search high and low and finally found it. Okay, maybe it wasn't so hard to find, but whatever...Wes loves it. It was still in the box when I took it up to Wes' room, and the PICU was nice enough to provide the batteries. I asked the nurse if there was any chance they had a phillips head screwdriver because I had left my tool chest at home. She thought they might (for changing batteries on mobiles and such) and came back with a flat head screwdriver that was as big as a paint scraper. Thanks!!! So I did what any dad would do for his son: I assembled it with a pair of scissors. Only one band aid too!! As you can see from the video below, it was well worth it!!

video

8 comments:

  1. Your sons are precious! I just love seeing pictures of them!Max does have chubby cheeks, our daughter had really chubby ones too!
    Wes, must really love his mommy if he smiles even with all the stuff attached to him!
    Well, daddy someone has to keep their eyes on you it might as well be your son!
    grandma enjoyed being able to do something special for her sweetie I am sure she did not mind looking high and low, far and wide...LOL for the Mobil!That's what grandma and grandpas are for to love on their grand babies!
    As always your family is in our prayers, along with every one who takes care of Max and Wes...keep singing to them....I am sure they relax when they hear you sing...
    Jesus loves me this I know
    For the Bible tells me so
    Little ones to Him belong
    they are weak but He is strong!
    Yes, Jesus loves Max
    Yes, Jesus loves Wes
    Yes, Jesus loves them
    the Bible tells me so!

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  2. Great pictures! Your sons are so precious. We're continuing to lift them up daily (and more), crying out to God to touch their lungs with His Almighty Healing hand. Praying for strength and peace for you guys as well. With much love, the Sluiters

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  3. The pictures and video are SO precious!! Dave and I think both boys look a lot like Kate but we can definitely see a little Wiers in them too. :) You and the boys are in our prayers daily.

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  4. I know that having Wes go back to the hospital was horrible, and we wonder about Gods plan. I feel that God put Wes back in the hospital so you(Kate and Mark) could continue to see both your boys and not be conflicted about time, distance. Knowing that both boys are being taken care of to the best of everyones ability must be somewhat a comfort. Wes and Max, you both are being held by our great Physican, hold on to him and trust that things are working according to His plan. Praying for all of you along with several friends and family who know about your struggles. May God bless you and keep you. Becky S.

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  5. Keeping you all in our prayers, the pictures and video are so adorable...what strong beautiful boys you have been blessed with :)

    Tina Jacobsen

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  6. Mark, Kate, Max & Wes,

    The new video of Wes is a big hit in the Mast household... Bella has requested the "Wes and his sleepy toy movie" at least five times already! We say a prayer for the boys each day and today Bella said that when the doctors do a check up on Max and Wes and look at their hearts they will see Jesus in there... so true:)

    Praying!
    Jason, Mary & Bella

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  7. What adorable little boys! Thanks for sharing the pictures and video! You're continuously in our prayers and thoughts (a ton). Hugs to you! Sue and boys

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  8. Thank You for your faithfulness in posting/updating... the boys are so very precious. Praying for you all.
    Lil K

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