RYELEE"S HOMECOMING

Ryelee came home on Sat August 23 after spending 101 days in the NICU. The NICU social worker had said once during a care conference that they would have a parade when Ryelee left. Well she came through but not quite as big a parade as she would have had on a week day. Due to her recovery from her surgery to place a Broviac catheter and do a rectal suction biopsy, she was delayed a day from coming home. These were necessary because Ryelee would be going home on TPN therapy and she needed the biopsy to check for ganglain cells, and this was the least invasive way to biopsy. Ganglian cells are the cells that cause the muscle contractions to move the food along through your intestines. They thought that Ryelee may have a condition in which the cells which start out at the brain and move down through the digestive track, may not have made it to the end. This could explain her distended abdomen and the trouble she has with digesting food and pooping. Thankfully(?) she does gave the cells, which means that diagnosis is highly unlikely. I question thankfully because her surgeon does. If they did not find cells she would know what to do, go in and remove the part of her colon which does not have cells and sew it back together again. Know we are playing a watch and see game.
Before they come home the parents spend a night or more with the baby in a room close by the NICU which is set up like a nice hotel, except for the paraphenilia for babies monitors and oxygen and things like that.
At the time of her release, there were not very many babies in the NICU, which meant not a lot of staff who knew her were around, the patient care coordinator and social worker work weekdays and were off that day too. Due to construction in her room which was started almost as soon as she was moved out we couldn't even go back in there. So her parade consisted of blowing some blowers and her mylar helium balloons and princess crown that she wore home.
Then after she was home, her grandparents came over, Grampy brought her 3 aunts who had not been able to meet Ryelee in the NICU, since they are under 18. Then came the home health nurse to teach mom, dad, Grandma and Grammie how to set up, run and disconnect her TPN. She would be totally wireless for a few hours a day!
We are so greatful to have her home. We are thankful for all those who cared for her and her parents over this long battle to get her big enough to come home. It has been an amazing process to watch essentially the last trimester of pregnancy from the outside.