Still In The Hospital

Good evening everyone,

I feel like Captain Kirk... Captain's Log

Well Amber was suppose to be in the hospital Monday and Tuesday with the possibility of coming home Tuesday or Wednesday. On Wednesday, she had a bad day and after having no IV they called to say they needed to put one in her arm for medicine to calm her down. She was upset for an hour and ten minutes and inconsolable. I think for normal babies this would be colic, gas or just plain upset, with Amber this means a lot of hard work for her heart and loss of calories. They are trying to help her with gas (she can't burp because of the nissen fundoplication). They are also trying to help her move the milk out of her tummy. At home we were doing continuous feeds 55 cc (a little under 2 oz) over an hour. Right now they are doing continuous all day long about 10 cc an hour, this afternoon they changed it to 20 cc. Tonight they are going to try to do continuous but in the morning they will go back to 55 cc in an hour. If all goes well they might let her go home early next week again.

Cardiology - the doctor (Dr. Starnes) we thought would be doing her surgery has a family emergency and won't be back until mid June. We are now stuck looking for a new doctor to fix the common atrium and the leaky tricuspid valve. There is a doctor at CHLA taking the place of the original Dr. (Dr. Harrington) but we don't know anything about her. We are going to have Dr. Gates (In Orange CHOC) revisit Amber's case and see if he can do the procedure. He originally saw her at two days old and wanted to wait until she was older and heavier. There is also another Doctor in San Diego that our cardiologist is recommending. So we have a lot to do, since everyday is a new day with uncertainty. I was told I was in an iceberg that could shift either direction or melt but my outcome would be the same... it sounded different when we talked about it. The reason why they want her bigger, stronger, older... the heart surgery would be done, her chest would stay open for four to five days to allow for swelling to go down and fluids to drain. They would put a plastic over to prevent from infection but she would be open. She would then be closed and stay in the hospital another four weeks for recovery. She would go home and require six more weeks for full recovery. I don't share this to scare you, only to bring you into my reality.

As always thank you for your prayers, positive energy, good thoughts and love...

Good night and lots of love,
Jessie and Kurt