Christmas at home!

We had a wonderful time rooming in with our little Moonpie the weekend before last. She kept us busy, but we got a real good feel for what was to come at home.  On Wednesday 12/17/14 we were finally discharged. After exactly two months in the hospital we finally took her home! Her big sister was beside herself. She just could not wait to meet her sister. She is the most patient 4 year old I have ever met. Since bringing Morgan home she has been a wonderful helper!

Morgan is on medicines around the clock. With some work and tweaking of the routine I have finally felt like I have a good groove going. She seems to be doing well. I cannot lie there are things I miss about the hospital. First of all the staff at the St. Luke's NICU is amazing! We really had an opportunity to bond with some of them. I also have found myself missing the security of the monitors and labs. I have confidence that Moonpie is stable, strong and doing fine, but nothing compares to the security of the monitors and staff at such a wonder hospital. I even joked that I would like them to come live with us during the transition. That being said I feel that everything is going well here. Just like any baby we wish that she could tell us what her cries are about. She hates having a poopy diaper, loves her bottle, enjoys tummy time, and most of all LOVES to be held.

Randy and I have been so super busy with everything, can't always get out of the house when we want to, but with some time we will get a routine together that will accommodate leaving the house. Morgan left with a g-tube for her feeds. She gets 62 mL every 3 hours through her g-tube, by Kangaroo pump. Before starting the feed I would offer her 25 mL of that feed by bottle. She did so well with it I went up to 27 mL. Yesterday I went up again to 30 mL and she did great. It is quite a challenge leaving with her feeds and med times. Hopefully soon she will be off her feeding pump during the day time. She does so well taking half of her feed by bottle. I will continue to work her up to bottle feeding during the day.



Morgan has many doctors, nurses, dietician, home healthcare, speech therapist (for her bottle feeding), etc. working with her to ensure she remains stable and continues to improve and grow. We are really hoping that she will be able to keep her kidney in until transplant. We are also well aware of the possibility of dialysis. Right now we take it one day at a time. Thank you all again for everything. We will continue to update the blog with her status. As of now she seems to be as happy as we are for her to be home!

Hope everyone has a great Holiday season!!! Merry Christmas and Happy New Year!