9-17-10

We now have a for sure discharge date of next Friday Sept 24th whether it be with the NG feeding tube or without. It could be earlier if he starts eating more and is able to finish a bottle or breastfeeding without tiring. Right now he is so tired sometimes that he won't wake up for his feedings. I have asked his nurse practioner and Dr why they won't let him eat on demand when he is awake and they said they can't do that until he's eating his complete feeding with 80% of his feedings taken orally. We do know that it will not be until after Monday at the earliest since that is when they scheduled his hearing test and circumcision. It's exciting to know that by this time next week we could be getting ready to go home or at home. But it is scarry to think about going back to work soon. I'm definitely considering taking the full 12 weeks off of work now to get adjusted to having him at home. Especially if he has to go home with the NG for feedings and is on oxygen.

Other changes the team made today was to decrease the frequency of morphine now to every 8 hours in the hopes he may be off it before we go home. The ECHO yesterday showed normal pulmonary pressures which means the pulmonary hypertension is gone!!!! So they are going to do a room air trial off the oxygen on Sunday to see how he tolerates it and if his saturations drop that would indicate going home with the oxygen for at least a month. They also are going to do an MRI of his head today just to see if that will show anything of why his organs are so big but he is so small. I guess his liver and spleen are now enlarged as well. Oliver's weight today is 5 lbs 15 oz so he is gaining weight. The bad news about the MRI is that they have to put an IV back in him to give him contrast.

Shawn is coming back tonight for the weekend. Hopefully this will be the last time he has to come down before taking Oliver home!!! We both can't wait to have our family all together and so that Shawn can also get used to caring for him. The nurses have recommended that I do not stay at the hospital at night because you get less sleep here than we would when we go home with him and they say it would deplete my milk supply by being tired. I'm okay with that, the couch is very hard. I'm usually at the hospital for around 12 hours a day taking care of Oliver's needs and getting in my snuggle time. He's really starting to develop a personality and smiles frequently (and I don't think it's just gas). Guess I better quit writing, Oliver is waking up now.