Today Grace is a whole week old.IT's 5 am Sunday April 3. A week ago I was sitting in at Flower Hospital while Grace was being prepared for transport at Toledo Hospital to U of M. In some ways I'd like to go back to last week. This was all less real then. I still did not have any concept of what her having CDH really meant. Now the concept is overwhealming and I'm not sure I am handling it ok. I want my baby girl to be healthy, I want her to be in my arms and nursing and I want her brothers to be able to see her. I want my family to be whole and happy and not broken up and sad. I hope this comes soon.
Grace has had some more rough times. When we got to the hospital yesterday morning, we found out that a few hours earlier she had strarted bleeding from her chest tube. The bleeding really picked up and the NICU went crazy, we were asked away from her so they could figure it out. They don't know where it is coming from but were able to stop it for now with upping all her "product". ie different types of medicine. They need to figure out if maybe it's just all old blood that has been slowly pooling for a week and found it's way out or if its new blood, in which case they will have to open her back up to find out. Opening her up is a huge huge risk. She is still on ECMO and so her blood is being thinned by heparin and transporting her and the ECMO machine to OR is very risky. I didnt get a call overnight so I am hoping, praying this means she is back on the upswing. I love this baby so much, need her and want her more than I ever could imagine. Please pray for her to be healed. Pray for me to find my strength, any I thought I had has escaped me.
Her cranial ultrasound showed no growth to the area of ischemia which is a good thing, they don't think it's likely that it's a bleed but rather just an area that didnt get alot of oxygen. Pray it's not going to affect her much.
The boys are having a hard time, I know they are being well taken care of, and I know that they are having fun and being given things to do but I can hear when I talk to them how sad they are and it's so so hard. I tired to be with them and with her and it's just too hard but it's too hard to be without her or them. I just dont know how to divide my time and love.
Going to head to the hospital, I really hope there's some good news. Thanks all so much for the thoughts and prayers, they mean alot and we really could use any and all you've got.
My heart hurts for you and your family. I will be experiencing all the same feelings in a matter of weeks; not anything anyone wants to go through.
ReplyDeleteSending extra thoughts n prayers your way this morning.
Janna Caravia
Due with LCDH Baby Boy 4/26/11
www.ourdhstoryblogspot.com
I wish I had the words to take your hurt away but I don't. You know I'm here for you, always.
ReplyDelete**huge hugs**
Grace is so beautiful & is a wonderful gift & miracle from God. I cannot imagine what you are going through. I pray you & your family every night. Grace seems like a fighter & she is so lucky to have you as her momma! Please let me know if you need anything.
ReplyDelete"I've seen dreams that move the mountains,hope that doesn't ever end, even when the sky is falling, I've seen miracles just happen,silent prayers get answered,broken hearts become brand new,that's what faith can do" chorus to "What Faith Can Do" by Kutless
My heart goes out to you and Adam and the boys. Prayers are abundant here in west Toledo and Mich also. Why things like this happens is such a difficult thing to understand. God has a plan for this beautiful baby and his plan is for you too. Keep the faith at all cost. You all are in my prayers. God Bless!!! karen Varner
ReplyDeleteMany, many good thoughts and prayers are being sent to you. My heart truly goes out to you and your family. This journey you are on is so very difficult for the entire family. My girls had a rough time as well but you will all come out of this so much stronger.
ReplyDeletePraying for stable days for Grace and for strength for you and your husband and boys as well. Keep the faith, I can tell Grace is such a fighter, she will do this on her own time. These babies do amazing things and your Grace is no exception!
Hang in there -
Michele
Mom to Andrew
CDH/ECMO Survivor
I'm crying as I read this, because I could've posted it. Camden was doing so very bad at day 8. No improvement. It is so devastating to have to live to say, "I didn't get a call last night" Im so sorry you are going through all this, as it was the hardest thing I have ever had to do. As for dividing your time, I have 4 other kids and it was soooo hard, but I would see them in the mornings before I went to be with Camden all day up until sometimes midnight. It killed me, but the baby needed me more, and my kids aren't going to remember how mommy left them, they will hopefully say "I'm glad she was there for our baby brother." I know it is still hard, just wanted to share some thoughts with you. Prayers for strength and healing for precious Grace, and they they wont have to go back in!! (((hugs))))
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