Hello, I finally have a moment to write in the blog myself. I must say a HUGE thank you to Tricia for what a tremendous job she is doing on the blog and Facebook updates (keep up the great work), as well as just being a huge resource for my questions. Tricia, I am so grateful that you are in my life and that God has blessed me with such a wonderful friend.
Things don't look great today. We called the nurse about 10am and he said that they tried during the echo to wean her ECMO and her hypertension is still there, so they had to restore the setting to where it was at. They are also concerned about the coloring in her legs. They are watching it. The lower abdomen swelling is also an issue. They are watching it. The xray showed that her left lung is almost completely collasped. She they increased one of the vent settings to try and inflate it more.
I want so badly to bring my baby home. The unknown is killing me. I know God is trying to teach me to have faith, trust, and hope in Him. To leave it in His hands, I have never felt at the mercy of anyone, and I feel at the mercy of everyone now. Ok, I just realized I haven't taken my medicine. I will not keeo rambling on but when I read in other blogs the personal feelings of the parents I related and felt relieved and not so alone.
Thank you for all of the continued prayers. God has truly blessed me with amazing people praying for Averi!!!
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Thinking of you and your family!
ReplyDeleteNicolle
I am thinking of you and praying for you and Averi! I believe she will get through this. I too read all the blogs I could find where the baby was on ECMO while my baby was on ECMO. I took hope in the survivor stories and they helped me sleep tonight. Look at Olivia's journal (you will have to go back to November 2008) because now she is a thriving 1 year old but she spent almost a month on ECMO and had some very tough days on it. Lots of prayers for forward steps!!!!!!!
ReplyDeleteHugs,
Jennifer
Mom to Dakota 12-25-2008
RCDH/ECMO survivor
sorry, I forgot to give you the website for Olivia: www.oliviahope.org
ReplyDeleteHugs,
Jennifer
sorry again, I spelled it wrong:
ReplyDeletewww.oliviashope.org
=)
Hugs,
Jennifer
Hi. I am not sure if I have left a comment before, but I have been praying for your family and sweet Averi. I lost my son earlier this year to CDH. I just wanted to let you know that I am thinking of you and asking my little angel to watch over yours.
ReplyDeleteAshley
Hi. I just found your blog through Liz Nelson's site and I just want you to know that we're thinking about you. Our son was born with CDH at UCSF and we know how hard each day is in the ICN. Please know that we will continue to keep Averi in our prayers. Stay strong and know that God is watching over you.
ReplyDeleteChelsea
We are thinking of you and praying for Averi. You will get through this storm. Don't give up hope. Keep giving Averi pep talks.
ReplyDeleteI too am a mom of a CDH Survivor. Kayla is now 9 months (almost 10) and doing very well. We didn't go on ECMO but Kayla had some bad hypertension that required Nitric for multiple days. Try to stay positive. We are praying for little Averi!
ReplyDelete