My name is Marriah and I'm two weeks old.
On monday, the doctors started to ween me from PGE again. I was doing well all the way through the day. I've been eating everything in sight and getting stronger and more feisty by the minute.
By tuesday, I was holding my own without the help of PGE, but I did need oxygen to help. Daddy went to our home, which I still haven't seen, for a few days. He was sad to leave, but had to help his company get some software design work done for local farmers. I was still doing well by bed-time.
Wednesday morning, however, the doctors didn't like my lowering saturation levels, even with 100% oxygen, and put me back on PGE. This time, I had gone much longer maintaining acceptable saturation. So the doctors decided to try again on thursday.
Thursday went by pretty normally. My saturations were good, my temperment was good and the doctors were cautiously optomistic that the third time might be the charm. Mommy was doing everything she could to help keep me calm for the trial. She even slept in my room with me that night.
I started oxygen therapy again on Friday, and daddy came to visit that evening. He stole mommy away for a while to treat her to a home cooked meal he made for her. As soon as they were back from dinner, daddy got to give me a bottle and played his guitar for me. I overheard the nurses tell daddy to take my mom to bed, because she hadn't been very restful the night before. I didn't see them again until early saturday morning.
By the wee hours of saturday morning, my saturation levels had fallen, again. I had to be placed back on PGE, but the nurse used half of the previous dose, this time. The doctors came and talked briefly about what the next step would be.
Since I have failed three trials the doctors will have to do an procedure of some kind. The most likely is a DA Stent procedure, by catheder, to keep the PDA open. Another possibility is a BT Shunt, which would require surgery. The doctors prefer to avoid surgery because of the higher risks in surgery. It will be a few more days before they can do either.
Mommy and daddy are in good spirits about it, mainly because even through all of this time, I have gained appetite and strength. I spend a good amount of time awake and alert, just looking around at all the flashing things, and faces I see.