Hoping we're headed uphill from here!

Sorry I haven't posted much the past few days. It has been a pretty frustrating and overwhelming week for all of us, especially me (Allison). Seeing Landon eat less and less and fall asleep during feed after feed when I know he must be hungry has been really hard. There has been a constant stream of people and activity and I joke that if I try to pump, go to the bathroom or take a quick nap (5 minutes, 10 minutes, anything!) someone will inevitably come in to talk to me.

It's such a struggle because a hospital is a terrible environment to try to establish any kind of schedule and get quality uninterrupted sleep because of the constant stream of activity. Tests, vitals, monitors alarming, people coming in and out- it doesn't exactly make for a relaxing atmosphere. However, in order for Landon to heal enough to get home, he has to sleep really well so he has the energy to feed and gain weight. It feels like a catch 22 and a neverending cycle. This morning he ate a little bit more than he did all night (after 30 minutes of coaxing him with an occupational therapist by my side) and then he got upset after eating when I was giving him all his medications (6 of them now) and he threw up everything he had eaten and all his meds. Of course this happened during "rounds" when there were like 8 people in the room listening to his heart and stuff. He hasn't ever really thrown up significant quantities like this so I'm hoping and praying that it was a one time situation. It's pretty common for babies with heart surgery to have problems learning to eat again, so it's not a rare or particularly alarming situation, just challenging (even for the docs) to figure out what is going to work to get him back on track.

This afternoon he ate a little bit more too and seemed to not be in as much pain while eating due to the reflux- hopefully some of the meds he's on for that are finally starting to make a difference. He's no where near the "goals" they have set for him but I'm hoping he's on an upswing and that he'll really start to get this rhythm down of eating and sleeping enough! No word on any estimated discharge date as of right now. I'm pretty sure they'll at least keep him a few more days even if he does rev up and start eating great. Going home with a feeding tube is still a possibility if he doesn't get up to the volume and calories they want him to be getting in thr next few days. I'm not thrilled about taking him home on one, but we will do whatever we can to get him home now and I think just getting home in a little more relaxing environment will help us figure out the best schedule for him. They're saying that they're going to let him eat "on demand" all day today so instead of waking him up every 3 hours or so to eat (which often doesn't work anyway since he's so sleepy that he can't stay awake to eat), we'll let him sleep as long as he wants to and then wake up when he's ready to eat.

Please continue to pray for Landon and also Gary, my mom and I. It has been a physically, mentally and emotionally draining week for all of us and I know we could all use some encouragement.