ECHO results

So the ECHO results were not the best news – her pressure in her heart/lungs is higher than her body, when at the last ECHO post birth they were equal. Add to that her PDA valve closed (many times in CDH babies this valve stays open which can help alleviate pressure) which means her right side of her heart is working much harder than it was designed to. Also, it can only operate at that level for a finite period of time. This means they need to be a little more aggressive. Step one is the Sildenafil. If she doesn’t show some improvement by Wednesday, they will add the Decadron into the mix. The hope is that they will be able to use these medicines to start making some things happen so that we can achieve the previously mentioned goals. The other disconcerting news was that even though ECMO has not been on the table as a consideration yet – it has always been out there as an option, but the doctor mentioned today that there will be a time when it isn’t an option any more as her time on the high freq vent and other factors make it something that won’t help. One thing that struck me that the doctor kept mentioning was how there are a number of factors that are out of his hands- how her anatomy was made (how god created her) and how the die has been cast already with many things – things set in motion that he can’t help. All I kept hearing is this is in God’s hands. The doctors can try these certain number of things – but this so truly is in his hands.

God, I know you are a God that can work miracles – that is what we are asking for today- work a miracle in my precious baby.


6 thoughts on “ECHO results”

  1. I wish I had a magic wand to wave to make it all better. The best I can do is let you know that you are all at the top of our prayer list & we will continue to keep you there as long as it’s needed.

    We remember how long the days get. Please try to get rest when you can.

    Shelly Moore

  2. Dear Liz I am amazed at how you were able to hear this news today! You sat there with so much grace and heard so well all that the doctor said! God is so obviously filling you with strength and peace and hope! I too was struck by the phrase the “die has been cast”! The good news is it is Gods plan, and with Him there IS HOPE! Praying for miracles with you and for Gods peace to keep you! Love you, Lisa

  3. Praying for your sweet girl! Don’t give up hope! Many prayers that the medicine will help the PH!!!!!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  4. My heart is aching for you all…..tears as I can’t imagine how this is for you guys. Please know that GOD MAKES and creates MIRACLES each and everyday and I will be praying he does so for Finley. I have added you all on another prayer list at our neighbors church—all prayers are heard. See my prayer below that I just now prayed for you guys.

    Dear God~
    Bless this lil’ baby that you created by LOVE and give her strength to endure whatever comes her way. Help her to surprise everyone with her will to live and her strength. Give Jon and Liz power to fight, and energy that fills their souls deep with your unending love. Please create the miracle one more time (once to make finley and once to help her Grow in you). Help each and every person that Jon and Liz encounter be of assistance in help and most of all prayer. I ask all of these things from you.
    In your precious name

  5. I have been checking on Finley daily and I just wanted to let you know that so many people are praying for her.

    Mom to Braden, RCDH survivor born 3/13/08

  6. Praying for Finley’s miracle! Keep fighting baby girl!! Hope the new meds help with the PH and she can get to her surgery! Sending you positive thoughts and energy for a strong week for your little girl.

    Tracy, Ian’s mom from CHERUBS

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