Friday, May 20, 2011

The girl is a puzzle

It seems just as Grace gets figured out, she throws another curve ball at us. So they are pretty sure that all the fever and irritability and issues were caused by the Viagra, which has been stopped but now her pphn is not as controlled as it was and when she gets upset she has a hard time recovering. Her Nitric was bumped up to 15 ppm last night because she was having a hard time bringing her heartrate down out of the 200's. They decided yesterday morning that she could try feeds again, again at 1 cc per hour. She seemed to be fine for most of the day and then around dinnertime she just got very irratable and her belly was very puffy and hard. She was given a supository and put on her belly and her nurse was pulling air from her feeding tube, she had alot of air in her belly. Her feeds were stopped for two hours and restarted at only .5 cc. She still couldnt tolerate it. On Monday they will do an upper GI study to see what is going on. Please pray that she is just needing time and to start very slowly, not that there is an issue preventing her from feeding. Feeding is such a battle for CDH babies and one that I was really really hoping and praying would not be so huge for Grace. When she is not feeding she is very happy to be held. She got a bath last night and didnt seem to mind it at all, but afterwards I think her belly started huring because she got so upset. They made thier first vent wean today since last weekend when we went way back up on her settings. Hopefully her gasses continue to be good and she can keep her heartrate down and bp down and sats up. When she was upset last night she was desatting into the 50s which is not good! She's usually pretty good at satting between 95-100 with no shunting until last weekend! Grace had her first cranial ultrasound since coming off ECMO and it showed that the spots on her brain that they were concerned about bleeding were gone! If you don't remember the reason she came off ECMO was not because her blood gasses and stats were good, it was only because she started having so many spots on her brain that they couldnt continue because the heparin that thins the blood would have just continued allowing bleeds. Now they are not there! How wonderful!
Grace is so beautiful and is so strong, she has a will like I've never seen. I thought my boys were strong willed but I had no idea what a strong will was. She was on her belly the other day and she was moving her legs and body like she was trying to get up and crawl out of there, her surgeon said she'dhad enough of this place and was tyring to get going. I think so too! For being so heavily sedated, she can get moving amazingly.
CDH is very daunting, it is so much more complex than most people can understand, and even though I now know alot about it, its' more than I can understand at times. I research alot and know what all the facts say and I know that all the facts go against everything I want for my daughter. Sometimes it's hard to stay positive. But I was listening to the radio on the way up yesterday and I heard a story about a mans life. He said about his situation "I was letting the facts water down my faith" and it hit me that that's exactly what I was doing. To keep thinking of the things that could go wrong or the things that havent gone right or the things that we have to overcome still before coming home (tons!) because that's what all the facts say, well that's just wrong. I know the Lord is faithful always, I know that He can and will carry Grace through the hell she is currently living.  Even though she is not feeding yet and her pphn is not under control like it should be she is still doing amazingly well for how sick she was. I need to always remember that, He has already performed miracle after miracle for this sweet girl and He will continue to. A mother is supposed to teach her child things but Grace has already taught me more than I think I could ever teach her.
Please continue to pray that Grace would be able to continue to wean the vent and control her pphn and that we could extubate within the next few weeks. Please pray for her to be able to tolerate feeds soon, that the dont find anything big with the upper GI on MOnday and that if they find something that it would be an easy fix and she could still make it to oral feeding at some point. I still want so badly to nurse her at some point.


  1. Very well said! You are right CDH is SO daunting and complicated. How could just a hole cause so many problems right? It is amazing what these babies have to endure and the stong will they all have to live. Grace's journey has been a very difficult one and she has come SO far. Praying that no big issues are revealed with the GI study and that Grace can begin to tolerate feeds very soon. Hoping that the pulmonary hypertension will get better and that they can figure out a way to control it without the NO. Hang in there - you are doing a great job!!

    Mom to Andrew
    CDH/ECMO Survivor

  2. We are praying and praising!
    Love you guys!!!

    Aunt Lynette and Uncle Mike

  3. Our granddaughter Clara was born on March 23 with CDH. As I have stood by her bed since then, my mantra is: "She won't remember this, she won't remember this, she won't remember this..." And Grace won't remember this either. You sound like an incredibly wonderful mother. I know you are so tired...I will be praying for Grace and her family.

    Mary Ann Davis
    Grandmother to Clara
    Winston-Salem, NC

  4. I am so glad that you aren't letting the facts get you down! Miracles happen and these CDH babies defy the odds all the time. Throughout my son's fight with CDH, he continually surprised and surpassed our expectations. I'm praying that Grace does the same!!

    Mom to Ramsey,
    LCDH survivor born 1-12-11

  5. We are praying and know that God is holding your sweet little girl up.

    Stay strong.


  6. I am one of the RN's that took care of Grace at Flower Hospital when she was born. Every day since then I have thought and prayed for your beautiful baby girl. She has been surrounded by an amazing group of caring professionals. What a blessing, thank you Lord!

  7. Continuing to pray for precious baby Grace & your family.