I think that is the absolute worst thing about the whole NICU experience!! IT is either REALLY good or REALLY bad!
Today was not such a good day. In the AM everything looked awesome… our favorite nurse was there… the doctors agreed to allowe her to incrementally up each feeding 5 CC… and as far as surgery goes- they are done keeping her in NICU… now its all up the the cardiologist.
AND!!!!!!! I get to try and nurse her!!!! I am SO SO SO excited!!!
So I didn’t pump before we headed there tonight and by the time we get there the new nurse says she feels like we should just feed her the bottle. She is not eating GREAT and doesn’t know how well she will nurse. Well I mean – for three days we have told the kid she CANNOT EAT… its going to take a minute to TEACH her to eat now!! So… I am there not getting to nurse her which I am bummed but okay.. we feed her at 6 pm and she cannot get the full 30 CC down- so her IV has to stay in. Even more bummed. THEN to top it all off…
The head NICU doc comes over to talk- GREAT here we go. He says that her kidneys look fine.. her arms bones are fine and normal… BUT there is some extra fat around the base of her spinal cord as indicated on X-RAy… if this is true this is a form of Spinal Bifida. I must have turned 6 shades of green because he immediately reached for a chair for me. I could have thrown up on his shoes at that very moment.
My heart dropped straight out through my shoes. So once again we wait. We won’t know until 3 months when we meet with the neurosurgeon for an MRI if that is correct or just a blunder on the films. No sweat… I am sure I will DIE before then- so you won’t ahve to explain anything to me!
I don’t think I have EVER felt so scared, upset, tired, and instantly SICK at any one point in my life… tonight is not a good night… my boobs are about to explode. My groggy baby isn’t eating so well and we have three months to wait to find out if she has a form of Spinal Bifida….
I don’t think I can do this much longer.
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Amber & Troy….you have angels with you. You are in our prayers daily and we pray for your strength and peace as well. Keep your chin up…your princess needs you strong and healthy.
LOVE YOU!
Jewels
Amber that sucks. I’ll be keeping you and your family in my thoughts and prayers.
Hope you have a better day tomorrow.
Amber, I hope things look better tomorrow. She is an absolute doll!!
Oh Amber, so sorry to hear this. Been thinking about you guys, praying for you and your family. From a mother who has been there, it is hard, REALLY hard, but you’ll be stronger in the end, and Kyleigh is such a blessing no matter what. Thinking good thoughts, hang in there girl!
Amber – my thoughts and prayers are with you guys…you know this.
Please try and take care of yourself during this time..it is important that princess “K”s mommy is all healthy and well when her little one needs her most!!!!
WE LOVE YOU!
\Joy
stay strong, Kyleigh and the boys need you. I’m sooo sorry that you are being faced with so many hardships and then keep having them compounded with the waiting, waiting is horrible. You will make it. Every day when you pump your “liquid gold” as I like to call breast milk, you are helping her get stronger. Everyday she does. I will continue to keep all of you in my prayers. Thank you for updating the blog. Big hugs
~lizney
Oh Amber I can’t imagine being told what you were told today. We want to protect our children, and there is nothing you can do is wait. Which has got to be just awful for you.
I will continue to pray for your sweet little one.
I hope her feeding is better today, and you are able to start nursing her.
Are they feeding her breastmilk?
((((Hugs))))
Sarah
Amber and Troy, I’m praying for you both. She is beautiful and clearly a strong and determined individual.
-Daniel Rudd (and andrea)
Amber – you all are certainly having to weather a lot right now! I’m sorry to hear of Miss K’s new troubles. We’re praying for you – please take care of yourselves, and take things bit by bit, as they come.
{{{{{{{{{hugs}}}}}}}}}}
Amber,
I know the feelings you are having. I remember when Cooper was diagnosed with cancer I thought I would die before he ever got through treatment. God will give you the strength that you need. Also remember that scans like xrays and such can be wrong! I have learned that one first hand as well! Our family is praying for yours!
Oh Amber- I could just throw up for you! Just remember…she’s here and she will always be Kyleigh no matter what path the Lord chooses for her. I’m sure tomorrow will be your upswing. Hang in there kiddo…
Amber and Troy…I will keep on praying for all of you. Wish I could be there to lend a hand or shoulder where it is needed.
Love y’all!!!!