Well, we finally got moved into Julie and James' house today. It seems so weird to be in an actual HOUSE! I haven't lived in a house in over 2 weeks! I was talking to my mom today and realized how that Wednesday morning, I woke up, planned to go to the doctor, then planned to go to work. Instead I ended up at CarolinaEast Medical Center and then on an ambulance ride to Duke. It seems so weird! Trent and I are SO thankful to Julie and James for allowing us to move in for a little while. We have had several offers from friends and family to stay with them, and I am sure we will take them up on it soon!! We will have lived more places in these next few months than we ever have!
Claire has had a great day today! Her nurse taught mom and I so many important things today about the best way to care for Claire. I felt very comfortable leaving the hospital for a few hours today - something I haven't felt in over a week. I am still watching the clock and anxious to get back. But I am trying! We learned different ways to help Claire remain calm, not burn extra calories, how to plan the day by consulting with her nurse (YES! Something I can PLAN!!), and how to help her grow and develop and feel like she is safe. Germs are a huge thing with Claire. We cannot risk the chance of her getting sick at all. So if that means not touching or holding her a day or 2, we have to make that sacrifice. So if you visit Claire, please do not be upset if you cannot touch her. You will have plenty of time to do that!
Claire's weight last night was 2 lbs 13 1/2 oz, so she's gained a few ounces. She is back on feeds of breast milk every 6 hours and they are going to increase that to every 4 hours soon if she continues to tolerate the feeds. Her bilirubin went back up to 6.3, so she's back on the bili lights as well as her cool sunglasses. So we don't get to see her eyes much and don't get to take her out much. They need to get this under control, and the only way is to keep her under the phototherapy as much as possible.
We missed the doctor's rounds this morning, but Claire's nurse gave us a good update. The test results they sent off to test for Di George Syndrome came back negative, so we are truly thankful that she will not have more issues to deal with throughout her life. Claire is a tough little girl and in her past 8 days of life, she has had more things to deal with than most people do in their whole life.
The surgery team was consulted again and they feel at this point there is nothing to do with the cysts. The team said they thought that something would only need to be done if the cysts start affecting her feedings or urinating. So the nurse said she would probably have it handled via out patient. We will continue to watch this problem as it could change at any time. Claire is still experiencing some "periodic breathing" episodes where she breathes really fast, then hardly at all, then normally, etc. But this is attributed to her prematurity.
Again, we cannot express the gratitude we have towards everyone for the prayers, love, kind words, visits, emails, calls, cards, gifts, and sacrifices. We knew we were blessed, but this has put a whole new spin on how we view things. We are so extremely blessed to have this beautiful, vibrant, absolute gift from God. I cannot even express into words how we feel about Claire and how blessed we are to be chosen by God to be her parents.
PS - I would post more pictures, but I don't have my camera cord with me!! Sorry!