Day 4

We had a crazy day today! I was not able to post like I usually am when things calm down in the evening. They did move all of the kids over to the new unit, which is BEAUTIFUL! I can't wait to share pictures with you. Isabella has had a pretty good day over all. We have had some issues with her blood pressure which they still are trying to get under control. It was actually kind of scary... we went to get something to eat and as soon as we walked back in the room Isabella's monitors started beeping like crazy. Her blood pressure dropped into the 30s her pulse ox dropped into the 70s and she stopped breathing on her own. She is still on the ventilator, but it is only on volume control - which means if she forgets to breathe it will breathe for her after 15 seconds. They were poking her and moving her to try and get her to take a breath, but she was unresponsive. All of her stats went back to normal after a few minutes, but it was scary, and they don't really know why it happened. They are going to try some different meds tonight to see if they can get her blood pressure under control. She has her first full echo tomorrow since the surgery so we will get to see how everything looks! She did get her chest tubes & RA line out! YAY!! But she lost a lot of blood when they did that so they had to give her blood to make up for it. Thank you for your continued prayers!! We truly appreciate them!

Normally I would share a bunch of pictures of our beautiful girl, but I have a heavy heart tonight. Today is our 4th day in the hospital, and every day we meet more and more people who are really going through far more than I could ever imagine. At one point in my life (not too long ago) I thought that having a child with down syndrome was possibly the worst thing that could ever "happen" to me. I look back now and realize how utterly ridiculous that was. Not only because our daughter is a beautiful gift from God and she has brought us more joy than we could have ever imagined, but because I now know that there are far more significant things people are dealing with. More important than an extra chromosome. 

We were leaving the hospital tonight and there was a gentlemen in the elevator with us who was pulling a wagon full of stuff from the CVICU. He shared with us that his 7 year old son was having a heart transplant in 48 hours. They have been in the hospital over 2 months waiting for a heart, and they finally got the call at 9pm. I started crying right there. I cried because I was overcome with joy. Joy that his son was going to live! But wait.. in order for his son to live that meant that someone had to lose their child. I cried thinking about the pain that family must be feeling right now. How can that be? Crying for joy and sadness at the same time? WHY did someone have lose their child?! WHY did this child need a new heart in order to live!? The only thing that I kept thinking was "The Lord gave and the Lord has taken away. Blessed be the name of the Lord." Job 1:21 

It brings tears to my eyes just thinking about it. It truly puts EVERYTHING in perspective. Everyone we have met here at ACH has been so genuinely kind. We all share a common bond - sick kids. We all know the pain of watching our children suffer and we all see how hard the doctors and nurses work to save our children's lives. It's so amazing. We are only 4 days into our "heart journey" but I know I have been changed for a lifetime. 

Will you PLEASE join me in prayer for this little boy who has been given the gift of LIFE! Pray for his surgery and recovery. PLEASE pray for the family who lost their child tonight. I can not imagine the pain they are going through. And please continue to pray for our sweet Isabella. Pray that her blood pressure stays normal and that her echo tomorrow will show a fully repaired heart! Thank you!!