Faith had an eye exam today. Everything pretty much looks the same, which is both good and bad. The good side of it is that the retina has not detached- the bad side is the scar tissue is still pulling. Once again she will have to be closely monitored and we'll have to just wait and see.
Today's other good news is she was weened to 1/2 liter on her high flow which she seems to be handling pretty well. The bad news is her feeding has taken a turn for the worse. She manages to nipple about 1 full feeding every 24 hours. Her docs want to give her time to work on the respiratory before a g-tube is considered, but if she is still not eating by July then it will be time to seriously talk about it. So that's where things stand now. As always Faith struggles with the basics; eat and breathe. We have confidence that she will ween well on the high flow and make it to the low flow- it's the eating that makes us worry. That's why we'd like to come together in full force and pray for Faith united as one. We know this is a lot of ask but...Faith eats every 4 hours at 4, 8 and 12 (in am and pm) if you happen to look at a clock and it is that time please say a prayer for little Faith! She is like the little engine that could when it comes to feeding- it's slow going and she just putters out- if we have a lot of people praying for her at those times, we know she will regain strength! We really appreciate all of your support. If there is one thing this whole ordeal has taught us it's that we are truly blessed to have such caring friends and family. We love you all dearly!
Thanks again for everything!
Brian and Jen
5 comments:
I will be praying for Faith (((HUGS)))
Never apologize for asking for prayers! She is as well as y'all are ALWAYS in our prayers and we will definitly put a special word for more prayers especially for her eating!
Faith : You really need to eat...we all want you home and we KNOW you cant wait to meet your "siblings" at home and see your new home and room! You need to chug a little harder and show them again as you always have, that YOU CAN AND WILL DO THIS! Aunt Susan KNOWS you can do this.
Brian and Jen: You hang in there. This week Faith WILL show you that she will eat more and chug just a bit harder to get home!
We will pray for her to breath easier and eat more!
We love you and thanks for the update! Man, is it good that I can be home nad write to y'all. I was going crazy when on vacation.
Aunt Susan
XO XO XOXOX
Another one from a lady my website that wanted me to forward to you!
Aunt Susan
XOXXO
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I will continue to lift up this precious little girl!
Becky
Proud Military Mom
This gal is also from my website and has been praying for your family since the begining! Wanted to post for you!
I hope today is a good day!
I love y'all!
Aunt Susan
XO XO XOOX
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Faith is on my mind. I keep looking forward to updates and pray for good news. If she were my child I would be reaching out for prayer and support. How hard this must all be for her family. I don't know the medical stuff too well but I understand the struggle. God Bless her and those who love her. And I know she can't articulate it yet but I hope she continues to believe "I think I can."
Deb
"Therefore I say to you, all things for which you pray and ask, believe that you have received them, and they will be granted you." Mark 11:24
I BELIEVE Faith will eat and breathe on her own :o)
Lots of Love,
Marni
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