Andrew day 19

Andrew is down on his ventilator pressure today so that is one step closer to being weaned of the vent entirely. His feeding and pooping is going well too. Stats are looking great today so overall its been a day of progress for him. We'll take as many of those as we can get.

Andrew day 18

Andrew is doing great today. He looks so good. He is so alert when he is awake. He opens his eyes wide and moves his arms and legs. Its so fun to see him look right at me. The docs have adjusted the settings on his vent so that he is initiating all of his own breaths and appearing to like it.

He still requires a couple doses of sedative a day. It takes a lot for him to digest his milk. That, among a host of other things could be causing him discomfort. When he can't calm down on his own they give him some sedative.

He also appears to be very sensitive to sound, to people moving around, and he loves to be swaddled. He has been getting very warm when swaddled and he sets off the alarms.

I got to hold him for over an hour and he was very relaxed and happy. I almost fell asleep.

Andrew day 17

Andrew is doing well on the conventional ventilator so they changed the setting on it so that he initiates each breath and it helps him along. They don't know if he will be able to maintain this level because it often makes him very tired. So he might go back and forth between assisted and not assisted. So happy.

Alex got to take Andrews temp yesterday.

Andrew day 15

Last night they transitioned him to the conventional vent and he is tolerating it pretty well. He had had a few episodes where his oxygen saturation went way down and they have to bag ventilate him to get him back up where he belongs.

The great news of the day is that I got to hold Andrew! It was 45 minutes of bliss.

Andrew day 13

Andrew has had a great day. He is tolerating his feedings well. And making  wet diapers more than he ever has before. Chris is with him at the hospital today and he says that Andrew is alert and opening his eyes and giving cues of discomfort. His stats also look very good today.

They gave him a little blood and a diuretic which may have helped him feel better.

Andrew day 12

Andrew is doing well today. He is still recovering from the infection. The docs are looking to transition him to the conventional vent in the next couple days. He is tolerating tube feeds well. The edema in his body is much better.

baby Andrew

Andrew was born on December 9th at 10:53 pm. He was born with only one developed lung because his diaphragm only partially developed in utero. The large hole in his diaphragm allowed his belly organs to develop in his chest and the lack of space is what inhibited his left lung from growing.

The last eleven days have been a roller coaster.

Day 1-3: The goal was to get him stabilized. The docs didn't know if his lungs could function on the ventilator, so it was a surprise when he was stabilized in a couple days.

Day 4: Surgery to put the belly organs where they belong and patch the diaphragm

Day 5-6: Stabilize

Day 7: Switch to conventional ventilator in AM. Stats dropped by afternoon and they put him back on the oscillating vent. Went off the paralytics.

Day 8-10: Fighting an infection. Being treated on antibiotics. Friday was the first real low because he was maxed out on oxygen and ventilator intensity. They started putting him on his belly.

Day 11: First milk feeding. They will give him 10 ml every 6 hours through a tiny NG tube that goes down his nose into his stomach. His CO2 levels remained high today and needed a lot of suction of the secretions in his lungs.