It has been a long time since I have gotten a chance to update the blog. Since the last update she has been improving and seeming to feel better all the time. Last week I was able to go home to stay the night with Randy and big sister, but unfortunately ended up feeling very sick. Since I was sick I was not able to go in and see Morgan. Thankfully for our nurses they gave her extra snuggles and I was able to call every few hours to check in and see how she is doing. By the end of the week I was feeling better and we were all back to see her again. When we got back we were able to see the improvement we had been hearing about over the phone the entire week.
In the past couple weeks Morgan's feeds and blood pressure have been the focus. She went from being on a continuous feed day and night to receiving just over 2 ounces in 45 minutes during the day and continuous feeds only at night. Her biggest issue with her feeds was being able to hold everything down. She was throwing up too much of her food and medicine and wasn't able to grow the way she should. Now she is going days without throwing up, and when she does it is a very small amount. They are also adding formula to my breast milk to add more calories and other vitamins and nutrients she needs for better growth. This addition to the milk is not because my milk is lacking in the vitamins and nutrients, but because she needs more than other babies in order for her body to absorb what it needs. Her kidney is doing well enough to avoid removal and dialysis at this point, but still is not to par with a normal healthy kidney unfortunately. She just needs a little extra to keep healthy. We are hoping the extra calories gives her the growth they want to see to have her come home.
As for her blood pressure, well that is a whole different battle. She is on a slew of medicine to attempt to maintain her blood pressure. Due to her kidney disease she has a higher blood pressure other babies as well. Her high blood pressure can be hard to maintain, and that is very normal for her condition. Right now they are increasing one of her meds and also gave her another med that is more potent to keep her blood pressure under control while hopefully coming off some of those other meds. Right now she is getting close, but she determines how fast that can happen. She receives meds around the clock right now and they are hoping for her to have a more manageable home care, and she is getting there.
We couldn't be more proud of her! She is making so many improvements. Before we are able to go home with her they want to give us the opportunity to "room in with her" and become comfortable with her daily medical regime. We are very excited for this opportunity. This does not mean we will certainly be going home with her soon, but there is a chance and we are very excited to just have the opportunity to spend the weekend to stay in the same room as her for 3 nights. This is a major milestone for us. Unfortunately we are not able to bring Isabelle in with us, but if all goes well she will be able to see her baby sister soon.
At this point Randy and I do our best to remain realistic as well as hopeful. We hope to go home soon with her, but understand that she will let us know when she is ready, and we don't want to leave too soon. We embrace her milestones, and on the day that we are driving home, I cannot even begin to express how exciting that moment will be. We would love for our family to be in one spot, and we couldn't think of a better Christmas present, but we will make due with what we have no matter what. We are a strong family and we will make our Christmas as good as we can, no matter what!
Thank you all again so much for your love and support. Randy and I could not get through all of this without our family and friends. This is hard on all of us, but at this point I feel that it is becoming increasingly difficult for her big sister. She is very anxious to see her sister, and it has been a long wait for her. She was able to see her for a very short time after her birth, but other than that our little girl has been waiting since March to meet her baby sister. She is staying strong and positive, but her patience is running thin. We make sure to give her extra loves every day, and she has become extra loving in return. We want her to remain excited for her baby sister. The day they come together will be a very important day for us all! :)
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. 
