Maci is currently getting a unit of blood. Her hematocrit dropped. Anytime when it's below 30 you are a candidate for a transfusion and hers was 25; normal is 50-53. From my understanding thus far, due to the kidneys failing to function in filtering the blood, you can be anemic and not produce red blood cells, lowering the hematocrit. This will be her 4th transfusion.
Maci had a problem with some new formula they introduced earlier this week. They increased the calories and the volume and all that day she had a good bit of "spit up". It turned out it was just a formula intolerence but they put her on IV fluids only to let her tummy rest. Since they planned surgery yesterday, she couldn't have formula until after. Today was the first day she had formula. She was going to get to bottle feed for the first time but I guess from her being awake all afternoon, having a big day chatting with Mommy, she was too tired to wake up to eat. We are going to try the bottle again tomorrow. She still has her NG tube (tube running down her nose into her tummy) so that's how she got to "eat" tonight.
Now, as I type, I can see my baby girl laying in her bed sleeping soundly. I sure do love her more than anything, tubes and all.
That's a pic from today as I was holding her, chatting. Today was the first day she had both eyes open for a long time....I loved it.
Story of a little warrior born in renal failure, beginning dialysis at 16 days old, diagnosed as blind at 17 months & with cerebral palsy at age 2. This is about Maci's battle with dialysis, her road to receiving a kidney transplant, post transplant challenges, as well as her other demands of being medically fragile. We strive to teach tolerance, inclusion & to Educ8 to Motiv8 to Don8 - Recycle your parts. Be an organ and tissue donor. www.donatelife.net
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She is so very beautiful but you already know that. If you need anything please don't hesitate to say the word. I think about Maci, Rick, and you throughout the day. I know this is an extremely difficult time for y'all. I'm here if there's anything I can do for y'all. Lots of love and prayers. Amy
ReplyDeleteI love this picture of her. I want to kiss her little checks. I am praying for everyday. I love.her so much.
ReplyDeleteThis picture is SO sweet! Maci is simply beautiful!
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