Well, we are definately going to be perfecting our lesson in patience. When I got here this morning they had already changed her wound vac (I was hoping to see how the skin graft looked). The plastic surgeon was here when they changed it and apparently the skin graft DID NOT TAKE!!!! I just about started to cry. My poor baby went through that surgery for nothing. She will also have a nice wound (and scar) on her leg she is recovering from for no reason. Also, the surgeon wants to keep the wound vac on her for 2-3 more weeks!!!! We are waiting to see if we can go home on the wound vac. There are two obstacles, we have to see if insurance will cover it and if Dr. Kouretas (the doctor who did her heart surgery) will be ok with us doing that. So, obviously, this is a huge disappointment. On the bright side, she is tolerating her feeds well on her NG tube. They are going to start bolus feeds which will make her body start acting like a normal baby who gets her food all at once, every few hours.
We are still so thankful for all the support and prayers that have been sent our way. We are wondering if any of you out there could pray and fast for her this Fast Sunday, June 1st. We really think it is in Gracie's best interest to get at least a little time at home to recover before having to come back for her second surgery (which is typically done at 3-6 months of age). I would love for her to be able to take a breath of fresh air and be in a quiet room at home with LOTS of love from her family. I think that is the best medicine! Thanks again for all of your support!
12 comments:
oh, I am so sorry! Definitely count on us praying hard and fasting for Gracie on Sunday. It has to be so amazingly difficult to have to see Gracie go through all of this and not be able to "fix" it. I'm sure she feels your love through your touch and voice. That has to be so helpful and comforting to her!
-Suzette
You better believe we will pray and fast for your Gracie this Sunday! Hang in there... you've come SO far and are close to getting her that breath of fresh air! What a day that will be, and it IS coming! Kiss her for all of your daily blog addicts! :)
I will be praying and fasting Sunday for Gracie. I know how hard this must be to have this set back. It will be so wonderful when you finally get Gracie home. I know Heavenly Father is watching over Gracie and as we keep putting our trust and exercise faith in the Lord, Gracie will get the care she needs all in accordance to the will of the Lord.
My thoughts and prayers are always with you.
Love
Grandpa Gledhill
My family will fast for little Gracie! I am so sorry to here that the skin graft did not take, seems so pointless to have her suffer so much for something that didn't even work! Just want to let you know how much Gracie means to all of us that check daily for updates! She is such a fighter and we hope that our prayers help her as she struggles each day! She is AMAZING and such an inspiration to all of us!
Heart Hugs
Caralee Baker
Me and my family will deffinately be praying and fasting for Gracie!
Hello. I am your friend Natalie Peterson's neighbor and Heather Stowell's sister. They both love you so much and share your Miracle baby with me. I will be praying and fasting this Sunday for Gracie and all of your family too. Thank you for the strength you are to so many of us.
Dang it Geeg. How could it not take? I don't get it. I guess she is just not healing well. I think it's that dang wound vac. Not only does Gracie need some fresh air, so does her wound. Do I need to come down there and start yelling?
Of course we will fast and pray! Anything to help get your sweet baby home with you. How frustrating it must be but at least she is tolerating the feedings. That is a positive thing! As others have said, we all appreciate you sharing her with us. Several of us are "daily addicts" to your blog and so appreciate the updates. Have a great weekend and I just know with all of us fasting, things will work out.
We are all so used to getting good news that this one took me by surprise. I'm so sorry. Does that mean that they will do another graft or will they just continue trying to heal her original scar? Thank you for the opportunity to pray and fast for Gracie on Sunday. Our whole family will join the many others on her behalf. We hope that there's lots of good news to come. Love you all...hang in there!
Poor poor baby! I didn't know it was possible for a graft not to take, I am so sorry. I bet it is hard to watch your baby suffer and not see good results. She is a fighter though and with our fasting and prayers hopefully things will continue to get better and she will be home sooner than later. We love you guys and your always in our prayers. OXOXO
Glad to help.
Michelle and Tom-
We will be fasting and praying for Gracie on sunday.
Love, Shari
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