HLHS on the front page...

This story made the front page of The News & Observer this morning!

http://www.newsobserver.com/110/story/1453226.html

A heart friend to pray for...

When we were in the picu we met another family whose newborn son is there. His name is Ethan, and he is still in the picu. He is having a second surgery in the morning. Will y'all please pray for him? (Y'all are just so good at the praying!)

His sweet mama has a blog where you can keep up with him.

Thanks!

Update - Monday am

Sorry I didn't get a post up yesterday, although there wasn't much to say.

Except y'all can stop praying for poop. We have had an abundance!

Charlotte and Tim are down in the echo lab right now getting her echocardiogram. The results of this test will let the doctors now if they can send us home today.

She has had 2 chest x-rays, and both were clear. One of the things they are watching for is fluid in the lungs, and so far we are good there.

Charlotte has been sleeping well through the night, and she has been full of energy during the days. I don't think she even took a nap yesterday, which doesn't bode well for my schedule once we get home. I am totally over it, though. Her cardiologist told us to expect a new baby since she will have more energy now.

I think that's it on the Charlotte front. We have been keeping up with Baby K, and she is already doing better. She will need surgery soon, but her doctors are optimistic about the outcome. Her parents have seemed in such better spirits the past two days. And they appreciate all your prayers.

Thanks again! I'll be sure to let you know when we are heading out.

Update from the Floor

So we have logged one night on the floor. I don't know why they call it the floor, but that's where we are.

Charlotte had a great night. She slept most of the night, just waking up when the nurse came in twice to give her meds.

She has been taking a bottle fine, but her appetite is on the small side. But given what she's been through and the amount of pain meds she has been on, we aren't surprised that she's not too hungry. They are going to try taking her off the Oxycodone today. So far she is doing fine without it, and this should help her appetite and hopefully make her poop. (Too much?)

So that's the news. The child is just doing so well! She had open-heart surgery for Pete's sake! She was on bypass! And now she is sleeping peacefully in a private room with just the minimum of sensors attached to her. Her sats (oxygen levels) have been in the low 80s and her heart rate is holding steady around 130 without any medication whatsoever.

It's just all so crazy that you would think maybe her heart condition just wasn't that severe. But it WAS. So all this just points to the fact that we serve a big God who is mighty to save. He can move the mountains, and He can heal little hearts.

I would like to ask you all to pray for a family we met in the cardiac PICU waiting room. They have a five-day old baby who is awaiting surgery. They had no idea she had any heart problems when she was born in another part of NC. She had to be flown in to Duke while they drove here, unsure of what was wrong with her.

So please pray for Baby K and her sweet family.

Thank you friends.

Not too bad...

The chest tubes are out, she is eating and she is heading to her own room later today!

Charlotte is showing off and God is showing OUT!

Update - 8am, Friday

Tim and I went back up to the hospital last night to see Charlotte. She was off the vent but she had the little oxygen tube in her nose. She was in that state where she was heavily medicated but still kind of awake.

She still looked good in terms of her color and all, but she was having a time with the headaches. She was pretty pitiful. We could tell that she was so exhausted but the meds weren't quite helping the headaches. (I'm sure that those of you who suffer with migraines can relate!)

The nurse and staff were so good last night - they listened to us when we told them about Charlotte's likes and dislikes, and they quickly took the O2 tube out when we told them that the tube and the tape agitated her. She calmed down lots after that.

We tried everything to soothe her, but nothing was working and we finally figured out that we were making her worse. She knew that we were in there and I think she was upset that we hadn't picked her up. So we left around 11pm.

Tim called to check in on her before we went to bed, and the nurse said she was a little calmer and that they were going to try and feed her a little pedialyte.

We are about to head back up there for the day. If you want to come and visit, just call my cell phone first. If she's still as agitated today we will probably hold off on visitors. But we will certainly be happy to visit with you in the waiting room.

Thank you all so, so much for your prayers!

Update - 7:11pm

Charlotte came out of surgery at 3pm today. Dr. Jaggers said everything went as planned and that she did great. Tim and I got to go back and see her for a minute around 5:00 and she looked pretty good, considering. She opened her eyes a little, but she is pretty much out of it. They want to keep her calm and sedated for a while. She is on the vent for now, but that should come out tonight or in the morning. Her sats were in the 80s with the vent, so we will see how they are off the vent soon.

Please keep praying for her - one of the effects of the Glenn is severe headaches for a while after. And headaches make for cranky babies. So please pray for tomorrow that her sats are high off the vent, that her headaches aren't bad and that she takes a bottle.

Thank you!

Update - 1:30pm

I just heard from the OR, and Charlotte is in bypass (a machine that does the work for her heart and lungs while they work on things). The surgeon said things look great and Charlotte is doing just fine.

That's really all I have for now. I will update later once we know something else.

Thank you for checking in and for praying!

Surgery Update

Baby Girl's surgery will be tomorrow at Duke. We are checking in at 7:30 am, so I'm guessing the procedure will start around 8:30. I'll be updating throughout the morning. Thank you all so much for your prayers!