Where do I begin?

Hey guys. We just got back from New Orleans from a weeks stay at Children's Hospital. For anyone that may not know LA, this is a 6 hr drive from Shreveport. So it was quite an ordeal. We went in on August 27th to a hospital here in Shreveport, where Evangeline had her G-Tube placed. WE were discharged 5 days later,where she was taking bottles so well, seemingly tolerating her G-tube. The next day, she spiked a temp, her BS was 206, and she was very lethargic. This is odd for an LCHAD child. Usually low BS is an indicator that something is wrong. So I ended up taking her back to the hospital. It was there, that she decided she no longer wanted to eat. At all. She began screaming every time we turned her pump on, and it was even worse bottle feeding. She was then on only D10, because her body could not handle formula. She began retching (she had a nissen done as well.) They transferred us to Children's after a week there.

Children's was somewhat better. She began tolerating some tube feeds, and we are still working on getting her to bottle feed. We have had her evaluated by GI specialists, who suggest to turn her G-Tube into a GJ tube, which I am certainly NOT a fan of. Meaning, they would internally, move her tube from her stomach to directly into her intestines, bypassing the stomach. Meaning she would eat only by tube. They would also give her meds to help with the pain of eating. They, however, can't do this until the G-tube tract has fully formed. Thank God, I don't have to make that decision just yet.

We also had her evaluated by OT and by speech therapy was well, and neither one noticed anything with her sucking/swallowing nor her gross/fine motor skills. Just having some difficulty with tummy time, because of the G-tube still being somewhat sore.

She was also diagnosed with Anemia, so it could be an issue of not having the energy to suck. We have her on Iron Supplements, for the time being, until we get the results of those tests back. We can then know if it is due to lack of nutrition, or other reasons.

Things are looking, up, however. She drank a little less than an ounce today and got 1/2 of her rice cereal from the spoon. She just loves that spoon. Anything can go in her mouth except that stinking bottle. We also received our Extended Care nurse. Things are working really well, so far. It is so wonderful to have someone who understands how to handle her and has experience dealing with special needs kids. Currently, we use her 9a-3p M-F. WE can also change hours up, if we have a special occasion or want to go on a date. It is kind of like having a Nurse for a Nanny. I am having difficulty letting her take over, but I realize that Evie needs to know other people than just her Daddy and Me. She will hopefully get used to Mrs A. pretty quickly. I would love to go back to school to work on getting either Alt. Cert to teach music in public school, or simply finish my Ed degree, only 22 hrs left. Either way, it means me finding me again and having peace in our marriage.