Thursday, April 14, 2011

day 19 and off ecmo

Grace is no longer on ECMO, she still has the cannulas (really its cannulae) in case they need to go back on but she is not being supported by it any longer. It wasn't a move that was made because she was ready for it, it was a decision made because the risks of ECMO were beginning to outweigh the benefits of being on. she had more areas in her brain that they arent sure if its bleeding or not.She is on an oscillating ventilator, it works a different way than the traditional vent. she wasn't very well sedated when they started her on it and she got very upset because her whole body shakes on this vent. They are hoping to have her on this for a few days and then be able to tranistion to a traditonal ventilator.Grace is also on Nitric Oxide to help lower her blood pressure and relax her blood vessels,. Graces's issue is that she has alot of pulmonary hypertension, and she can oxygenate pretty well and actually always has but she cannot ventilate, she cannot rid her body of enough co2. So her blood becomes too acidic. So though her heart is very strong, her hernia was not huge, it was closed without needing a patch and they would have been able to fit all of her organs back into her abdomen (her being on ECMO was why they left her intestines in a silo, because with ECMO they didn't konw how much swelling she would have) her issue has always been severe pulmonary hypertension which makes her a much riskier case. The ECMO was supposed to help that, and though it did, it didnt get rid of it. So that's where we are. They have been happy with her blood gases so far since coming off ECMO. For her she is doing very well, she is doing better than they expected since her body wasn't really ready to come off ECMO. she still very much needs prayers. I know God has a plan for her and I know I can't change it, but my feverent prayer is taht His plan for her is in this world and our family and our home.
It has been a hard day because as soon as I got to the hospital today one of the surgeons started talking about coming off ECMO and the serious questions that nobody wants to think about and voice, that are too painful for me to type out and I KNOW that even if they see the worst, she can be fine. He can carry her through and she can overcome this, I KNOW it's true. I've read a few CDH babie's stories and there are some that sound so much like Grace's so far and they are beautiful healthy thriving children now, and I've seen my own cousin completely defy everything the doctors have said so I know it's possible but it is so so so hard to hear his words running through my head. Pray for Grace to continue to be strong and overrcome this, and for Adam and I to be strong enough for her, for our boys, they are having a hard time. Our little girl is such a strong little lady and she truly is amazing. She is so  small and has had such an impact on so many people already, I know she will continue to do so for many many years.


  1. Im a friend of your cousin Helen(we actually met her through the NICU-She was our son's nurse) Im praying hard for Miss Grace and your family and I know that God has a plan for her and you. Praying her body remains strong and that she continues to fight. I also sent your blog to a friend of mine's Aunt whose son was born with CDH and is now a thriving, energetic 9 year old. Hope that gives you faith and hope as you go on your journey with your amazing beautiful daughter!
    Thinking of you and your family
    Amanda Byersdorfer

  2. Continuing to pray hard for Grace's recovery.

    As I mentioned before, your story sounds so familiar - our son had pulmonary hypertension too - like Grace, he had a fairly small hole and didn't need a patch but had SUCH a rough time with pulmonary hypertension. He spent 13 days on ECMO and we almost lost him the very night before they took him off. He is now a very healthy, active almost 2 year old. There is hope!

    Praying that the pulmonary hypertension begins to resolve very soon and that God continues to watch over your amazing Grace and your entire family!

    If you ever need someone to talk to who understands the exact spot you are in, please don't hesitate to look me up - I am on facebook - Michele Dudek Snyder.

    I will continue to follow your blog and pray for your family.

    Mom to Andrew
    CDH/ECMO Survivor

  3. I am a friend of Helen's mother,Rosie.I have known Helen since she was a child living in Rome. Our God is a awesome, powerful, loving God who is Sovereign over all. He loves all of His creation abundantly. Praying that peace and assurance in our Lord will comfort Grace and your family. We pray for healing of the pulmonary hypertension and comfort of breathing. We ask for God's wisdom to the the nurses and doctors caring for Grace. Lord, we asked that your Will be done to your Holy purpose not yet known. Father, we trust and know, that when we walk through this valley, you are right there holding our hand including Grace's. Thank you Lord for sustaining us through these dark places and being the light for us to follow. We ask for continued healing and grace for Grace. A Hebrew word Hesed means faithful love. God offers His love freely and maintains that love to us faithfully. Our Lord and Savior is with you. Amen
    Barb Heinauer

    Our Lord sends you, Grace, and your family this message as it is written in Isiah 43:1-3

    Fear not, for I have redeemed you,
    I have summoned you by name, you are mine.
    When you pass through the waters,
    I will be with you,
    and when you pass throught the rivers,
    they will not sweep over you.
    When you walk throught the fire,
    you will not be burned,
    the flames will not set you ablaze.
    For I am the Lord, your God.
    The Holy One of Israel, your Savior.

  4. I am praying for strength for Grace and your entire family!

  5. I was given your link by Amanda, who commented above. My son is a CDH survivor. CDH is a very rough road, but know that you are not alone. My son was never on ECMO, but had severe pulmonary hypertension. He is now a thriving little boy. Please know that we are praying for you. If you would like to talk to other CDH parents, please let me know.

    Mother of CDH survivor

  6. Brenda, thank you, and I would love to find other parents who have been through this.