5/8/09 - Someway, Somehow, Someday
This is one of our favorite dresses that Kayleigh's has. She looks so precious and they have these pink shorts (or should I say undies) that go with it too.
As of right now, they have decreased the Flolan for her hypertension over the past two days. They are dropping it 10% each time, and they suspect it will take at least 10 days for her to completely come off of it. Our estimated time for coming home is no less than three weeks, which we were not happy to hear and there unfortunately are no ways to make that happen sooner.
Since our main goal is to bring Kayleigh home, we decided that increasing her feeds right now will only increase the risk of her belly blowing up more than it has and keeping her in the hospital longer. We've all decided to increase the triple mix IV fluid to give her the nutrients she needs, so she can stay healthy.
Kayleigh's breathing and irritation seems to be increasing a little more today than normal and I am not sure if that is due to the weaning of the Flolan, but we will keep an eye out on that. We certainly do not want Kayleigh to be going through any pain or discomfort. Overall, she is doing well and comfortable.
Many asked if Kayleigh will remain in the sleep-in room or go back to the NICU and unfortunately she went back to the NICU after our visit. However, since we had a great time the other day, Aimee and I will be enjoying a day with Kayleigh tomorrow in one of the sleep-in rooms. My parents will be coming up to visit and hang out for a little while. Aimee and I plan to watch TV with Kayleigh and just enjoy a peaceful and quiet day with her.
I can't wait to share some more wonderful photos tomorrow. I took over 200 photos in less than 2 hours the other day when we were in the sleep-in room with Kayleigh and the kids. Aimee and I will be there for at least 6+ hours, so I should have ample time to take some really good ones.
Thank you again for everyone who donated money and prayed your hearts out to help our family through this tough time. The emotions we are dealing with change every minute that it is very hard to describe or even explain. All I know is that we are so blessed to have wonderful friends like all who have lifted us up and kept us strong through this. I only wish I can return the favor someway, somehow, someday.