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, May 4, 2009

God is good

Wow.  It seems like a lot has happened since I last posted an update.  Wes is still on the CPAP machine and therefore breathing on his own with only some assistance to keep his airways and lungs from collapsing.  The doctors have indicated that he is toeing the line of being re-intubated and put back on the vent, mostly because he seems to be working very hard and has not really found his rhythm yet.  They don't want to exhaust him, but he does have almost 3 1/2 days under his belt off the vent.  We are so proud of him!!  Even if he does have to be put back on the vent for a period of time to allow him to regain his strength, the last few days have been a real gift from God as He has given Wes the strength to outlast all of the doctors' and nurses' expectations.  Considering all of the other events of the weekend, it was a real joy to be able to call and hear that Wes was still breathing on his own.  He continues to do very well with his feeds of 20 mls of breast milk every three hours, and is currently on just enough sugar water to keep his PICC line open.  There have been discussions amongst the doctors that Wes could be ready to have his PICC line removed (that is the IV that threads all the way up his arm almost to his heart).  Max has had a crazy couple of days.  Crazy in a good way for the most part.  He had been on very high vent settings of roughly 46-50 and high O2 in the 80-90% range.  The doctors did decide to go ahead with the steroid treatments.  As expected, Max's blood pressure elevated.  To combat this, the doctors have implemented Inhaled Nitric Oxide (INO) which is used much like Nitro Glycerin in people with high blood pressure.  It helps to open up the blood vessels, and Max's application is used in conjunction with his jet vent and delivered right into his lungs.  Also, I mentioned that Max got a larger ET tube as well.  Needless to say, one of these things worked worked, and since it is hard to pin point what variable lead to the changes detailed below, we are just going to say it was God.  When we left the hospital tonight, Max was at a vent pressure of 30 and his oxygen was about 65%.  He has not been on vent settings that low in weeks!!  The respiratory people have been suctioning a lot of liquid out of his lungs, and this fluid shows evidence of Staph bacteria and possibly pneumonia.  Also, Max seems to have episodes where he fights the jet vent and his body starts to shake quite a bit.  Not shaking like in The Exorcist, but pretty active shaking for a 2+ pounder.  The doctors are a little puzzled by this, and they may be leaning towards using the conventional vent more than the jet at this point.  We are ecstatic about the improvement on the vent settings, but a bit concerned about the shaking and possible pneumonia.  We trust that God will continue to hold Max tightly in His grip and grow and develop Max's body in His timing.  Also, both boys weighed 2 pounds 7 ounces last night...so we are very happy about their weight gain as of late!!

This weekend was both beautiful and difficult at the same time.  It was incredibly hard to commit Mom's earthly body to the ground at the graveside ceremony, but the memorial service at night was such a beautiful celebration of her life.  God has certainly been covering us with His grace over the last number of days, but the reality that Mom is gone is starting to set in.  With it being the week leading up to Mother's Day, it is particularly difficult.  Please pray for Kate, Dad, Becky and Lisa (and myself, Henry and Joe), that God will continue to pour out His grace, to grant a comfort and peace that only comes from Him.  We all know that Mom is in Heaven and no longer has to fight or suffer, but there is still a void in our hearts that will never again be filled.  We do not anticipate the healing process to be quick, easy or anything in between...it never is when you love someone as much as we loved Mom.  But as Christians, we have hope.  Hope that we will again see Mom when Jesus has finished preparing our homes in Heaven.  I cannot wait to sing the song "Sanctuary" with her again.  It was a song that she loved, a song that we sang at her graveside ceremony, and a song that Kate and I have sung to the boys every night, either in Kate's belly or in their incubators.  It is a daily reminder to me of her legacy...a life lived for her savior Jesus Christ.

Lord, prepare me to be a Sanctuary
Pure and holy, tried and true
With Thanksgiving, I'll be a living
Sanctuary for You.

6 comments:

  1. Oh goodness, you are very good at making me cry... but in a good way. What a beautiful tribute to Kate's mom. I can't imagine the emotions that you all must be going through... with the aching in your hearts over losing her but yet the joy in knowing that she's no longer suffering and that she's with Christ! It's just an awful lot to process... especially for you guys also deeply concerned over your precious baby sons.

    I am praising God though for the progress your boys are making!!! That is wonderful! I am still praying for them... they (and your family) are never far from my mind.

    God bless!!!

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  2. Praise God for both the progress that Max and Wes have been making and the testament that Kate's mom lived. We pray for all of you everyday. Even Gavin prays, "Be with Max and Wes in the hospital."

    Love you all!
    MBIKLG

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  3. "Fear thou not; for I am with thee: be not dismayed, for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness" (Isa. 41:10). It is because of this that the believer may confidently reply, "Yea, though I walk through the valley of the shadow of death, I will fear no evil: for Thou art with me; Thy rod and Thy staff they comfort me." Our very weakness appeals to His strength, our emergency to His sufficiency. Most blessedly is this principle illustrated in the well-known words "He shall gather the lambs (the helpless ones) with his arm, and carry them in his bosom" (Isaiah 40:11). Yes, His strength is made perfect in our weakness. "Precious in the sight of the Lord is the death of his saints"
    Psalm 116:15
    Love and prayers,
    Pam

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  4. Mark and Kate,
    Your family has been an incredible testimony. Your blog bring tears to my eyes every time I read it. Tears of joy, tears of sadness and tears of awe that despite all that you have experienced you can bring it back to God. Congratulations on the boys, their weight gain, Wes' extubation success(WOW) and Max's decreased settings! We continue to pray for you as you grieve the loss of Kate's mom.
    Nancy

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  5. mark,

    i just wanted to tell you how much i appreciate these updates and how much i admire your expressions of faith! kate is SO blessed to have you! praying for you guys daily - can't wait to meet those little men.

    laura

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  6. Your family is never far from my thoughts, which makes me send a little prayer for you and on April 21 I sent 2 at Notre Dame and St. Chapell while in Paris... glad that you are finding strength, peace and support from angels here and Jesus above...

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