Tom and I were able to go home last night and sleep in our own bed which was lovely. We got back here this morning and things were pretty status quo. They did change out her ECMO circuit again this afternoon because it had too many blood clots in it. This will kind of set her back about a day because it is fairly traumatic to her little system. They will try to wean her off the ECMO machine on Wednesday or Thursday.
Tom and I talked to the transplant specialist and it is really looking like she is not a good candidate for a transplant. We will keep this option in the back of our heads but it is not something that we are going to be putting a lot of thought into.
We had PCMC's child life specialist come by and take plaster molds of her hand and both of her feet. We already got them back and they are precious. These will be great to have of her in the future. Her hand is in the expression of the I LOVE YOU sign, we thought that was cute.
So the rest of the day into the evening should be fairly quiet, including all day tomorrow. Not a lot will be happening until Wednesday or Thursday. So we will continue to wait and be grateful for everyday we have with her.
6 comments:
Always in our thoughts and prayers. I have Faith in you, your family.
With Hope and Love,
Shauntelle
Kaidence's Mommy
I am glad that they made sure you had molds. . .how precious that she was holding her hand in the "I love You" sign. Truly a treasure!
I do believe in Miracles!!! Keeping you in my thoughts and prayers.
Hugs,
Carolyn
Angel Hope's mommy
www.picturetrail.com/littlemisshope
We are praying for your sweet Gracie. Everyday brings new blessings! Hope you have a peaceful couple of days.
Andrea
Owen's (HLHS) Mommy
Michele,
I've been wanting to tell you that since we're only 5-10 minutes from PCMC, any time you and Tom would like to come here and rest or shower or anything at all, please call. If you need anything, I'm just minutes away and can run up there if you need me. I love you all and continue to learn and grow from knowing your family. Gracie is a beautiful little blessing to all of us. You are so thoughtful to share this journey with all of us through your words and darling pictures. Thank you so much. Love, Susan
You do not know us at all. We were sent your link from another Heart Mom requesting prayer for your family.
We know the pain you are walking through. We are praying for your daughter and your family.
Something we hold precious in our hearts is our son's handprint and footprint that hangs around my neck with his picture.
Here is the link of just one place that you can get this from.
http://www.tearcatcher.com/thumbies.html
Basicly if you have a good inkprint of your daughter's hand or foot, you can send it off at some point to have jewelry made.
Our prayers are with you during this very stressful time. We lost our son to a CHD over a year ago. We are praying that God will strengthen and heal your daughters heart.
Terri Grabb
I can't even begin to imagine what you are going thru! She is so precious & I'm impressed by your strength! You're amazing! Hang in there & love her up, she is just too tender & sweet!!
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