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, April 12, 2009

Happy Resurrection Day

Happy Resurrection Day everyone!!  I refrain from calling it "Easter" as "Easter" is a derivative of "Isthar" who was a pagan goddess of sexuality and fertility.  A festival in her honor was offered in the early spring when pagans were hoping that Ishtar would provide them with a bountiful crop, but the festivals also included many sexual perversions, and her followers would refer to them selves as "sacred prostitutes".  Some of the symbols used to represent Isthar included eggs and rabbits...symbols of great fertility.   I prefer to keep pagan traditions out of my celebration of what I consider to be the most significant event in history.  So you can all feel sorry for Max and Wes as they will likely never know the joy of finding more eggs than anyone else on an Easter egg hunt.  It seems that the pagan or secular world has a habit of hijacking any and all religiously significant holidays.  When is the last time someone handed out a copy of Martin Luther's 95 theses instead of a Snickers bar on Reformation Day (also know as Halloween)?  What a monumental event in the history of Christianity when Martin Luther had the gall to suggest that salvation could not be purchased or earned by good works, but that it was God's alone to grant.  How could that be?  How can the church continue to build churches like the basilica of St. Peter if people believe that the only way to eternal life is through Christ Jesus and not through purchasing salvation from your local church?  Let's dress like clowns, demons, princesses and Darth Vader and collect as much candy as humanly possible to commemorate this historic event!!  I assume my sarcasm is shining through.  

Back to the theme of this blog.  Max and Wes have very different circumstances to face, so I will begin to discuss them individually.  Max is not doing real well.  He remains on the jet vent in an attempt to open up areas of his lungs that are filled with fluid or otherwise blocking the passage of air.  He has been receiving daily chest x-rays and the x-ray today showed further deterioration of what I will call his "free lung capacity."  As I mentioned yesterday morning, they are monitoring a culture of some fluids that were extracted from Max's lungs.  this has yet to grow any pneumonia bacteria, but the doctor today said they are going to treat Max as if he has pneumonia.  This includes the use of antibiotics, which was started this afternoon.   Kate and I saw the chest x-rays and the free lung capacity shows up as black in the picture, and the "blocked" areas show up as opaque.  The most recent picture we saw was of Saturday's x-ray and I would estimate that his lung capacity is in the 35-45% range.  After today's x-ray showed continued deterioration, the doctors made some adjustments to the pressures on the jet vent.  There is a delicate balance and they are trying to find where they provide enough pressure to open the blocked air ways, but at the same time do not over inflate the air ways that are currently open.  Over inflation can cause permanent damage to the lungs.  As the doctor explained it to us, Max's lungs are too immature to have "air sacs" like you and I, but there are similar cavities in his lungs.  There is enough mucous like fluid in his lungs to "trap" old, under oxygenated air in these cavities, so his oxygen dependence has continued to be high.  In addition, the heart echo confirmed that his PDA is again open.  This is also contributing to his oxygen dependence as blood is essentially being diverted away from his lungs as long as this valve remains open.  The doctors are now saying that surgery is the most likely form of treatment, and that Max will be pretty high on the list to have the procedure done.  We will know more about when this procedure might take place tomorrow.  The procedure is quite common and is actually done right in the incubator.  An incision is made between two of his ribs on his left side and they have to collapse his left lung to access the valve.  Once they do,the valve is stapled shut, the lung is re inflated, and they glue the incision shut.  I am certainly concerned about having to collapse his lungs as he does not have a lot of good lung left.  Please pray that before the procedure is performed that the jet vent will free up some of the blocked areas of his lungs while not damaging the good areas.  Wes has been doing well on the traditional ventilator, but his oxygen needs have been in the 40% range, which is higher than it has been.  His heart echo showed that his valve is open as well, and will likely have the same surgical procedure as Max, but the time frame is not yet known.  Wes has been more stable, so Max will likely have the procedure done first.  Kate and I are obviously concerned about all of this. Max is going through a lot right now and we just want to be able to switch places with him, to take away the challenges that lie ahead. Wes is doing much better than Max right now, but nothing is certain with him either.  Please pray with us that God will touch their lungs, remove any fluid that is keeping them from getting the precious air that they so desperately need, and help their brains to continue to mature.  This setback for Max has reminded Kate and I how delicate this whole situation really is, and we are scared for our sons.  God has been so faithful in protecting our little boys, and we were selfishly hoping that God's plan would be to have Max and Wes sail through the NICU like no other kids their age and size ever have.  It pains us to hear that they are on a "normal" course as the doctor said, because we want their course to be extraordinary, unexplainable, never-before-seen, etc.  Our prayer throughout this journey that began 33-days ago is that regardless of the path that God has laid out for us, that it be for His glory.  We are struggling with that prayer right now because we want our sons to grow big and strong, not suffer and have setbacks.  It is a much easier prayer when things are going better than expected, not so much when things are getting worse.

Please join us in praying for wisdom for the doctors as they make key decisions on the day to day care of Maxwell and Wesley.  We also pray that the healing hand of our Heavenly Father will be so evident that no medicine or science can begin to explain it.  

6 comments:

  1. I'm so sorry things seem ti be deteriorating. We continue to pray. Out of curiosity, do they administer any anesthetic (local or otherwise) to the boys prior to the procedures? Have you asked how much pain they might register?

    Continuing to pray...

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  2. oh how I wish I was there to give you both a hug and tell you that everything is going to be ok. Even though we have never met I am a mother and I know what it means to hold a child in my arms that has difficulties, knowing that there was nothing I could do but pray, and let my child know how much I love her...as I know you are doing for Wes and Max Keep looking up I know at times it is easier said than done...Prayer is a Powerful thing! God is a Mountain moving God! so I continue to join you in praying....

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  3. Mark and Kate, we will continue to pray fervently for you and the boys! Thank you for continuing to post to the blog, for giving us specific things to pray for, both joys and concerns!

    MBIKLG

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  4. still praying for you and your boys... i can understand how you would have difficulty praying right now, rest in the peace that others are continually praying on your behalf, and that the Spirit constantly intercedes for us when we don't have the words to say.

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  5. We will continue to pray for you and the boys, especially now with these setbacks. God will sustain you. He holds you.... He holds your precious children and loves each of you so much!
    Ron and Karen Boersema
    And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. Rom.8:26

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  6. Mark and Kate, thanks for your honest faith-filled words. Know that God is using you as you walk this road. We continue to pray that our Almighty Healer would touch your boys and that you would have the faith to trust Him no matter what.

    Love, Aaron and Lacey

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