11:30pm: Well, we finally got the boot. Kristen got to the NICU, helped Reid get situated in his stroller and several of the NICU staff helped her get all of his things moved to the new unit. She said it was very overwhelming as a large portion of the NICU gathered to say their goodbye's. She made an exit out the NICU doors and trekked down the hallway to the TICU where her and Reid's two primary nurses and respiratory therapist helped Reid get settled. The nurses gave report to the new nurse and tried to detail every small nugget of information that they had learned/discovered over the past 5 months. They were essentially saying their goodbyes and making sure that he would be taken care of like he was one of their own. A few tears were shed as they said goodbye - I know we are only a stone's throw away from our Egleston "family" and they will occasionally pop in to say hello, but we are on our own again. Time to develop new relationships with a new set of doctors and team of pulmonologists...

Reid's new room is one of nine in the unit and is very isolated - inclusive of a door, a window to the outside world, a couch that folds out into a bed and our own bathroom. The nurse put new sheets on the bed for Kristen if she wanted to stay - but that might have to wait until this weekend?? The ratio of nurses to patients is 3:1 and we feel that we have a larger burden on our shoulders for making sure that Reid is properly taken care of. While I know that nothing bad is going to happen under their watch, I think we are going to be counted on for taking up a lot of the responsibility that our nurses in the NICU graciously did every day. I guess this, in essence, is a big fat welcome to parenthood of a medically fragile child. Managing time between work, trips to the hospital and taking more care of Reid is going to be harder than it has been in the past. Ideally, we will have this same (and more) responsibility when he comes home, but having this shoved on us today with less than 24 hr notice has made our heads spin.

Kristen was able to speak to one of the new doctors this afternoon and it doesn't appear that there are going to be many changes right now. They want to assess Reid for the next 2 to 3 weeks so that they can get a baseline of where he stands. On Monday's, the doctors round to decide what kind of changes will be made for the week. Reid is probably one of the sicker kids (I say kids as the age range can vary from infant to 21 yrs) in the unit and didn't even officially qualify to be in the unit to begin with. There are rules around the respiratory support level to even get in the TICU and Reid falls outside of the threshold. I guess this shows you how bad the NICU was hurting for bed space for the kids that are much sicker than Reid. Not even $18,000 a day can get you a spot one of the best NICUs in the country...

It is hard to explain the feeling that we both have right now; the only way I can describe it is feeling lost, no longer welcome and without help. I had this same exact feeling the day Reid was transported to Egleston back in December and I am sure that these feelings will pass with time, but for the moment, life sucks. Maybe it isn't as bad as I am making it out to be, but being in DC right now makes me feel powerless and not in control of the situation. I HATE that Kristen is having to do this on her own.

11:30am: A few updates:

• They moved Reid back up to 2.5 liter flow. They noticed while bathing him this morning (reason as to early morning bath noted below) that they saw some pulling by his ribs (i.e., working harder to breath). Another step backwards...


• We are getting moved to the TICU today where we will have a whole different set of doctors and a team of pulmonologists. Our time ran out in the NICU and we are sad to say good bye - we had built a "family" in the past 5 months and will miss many of the doctors, nurses and respiratory therapists that we were so used to seeing on a daily basis. Guess it is time to start from scratch for the third time since Reid was born...


• Reid woke up in a pool this morning. His diaper weighed 390cc (about the equivalent of the contents of can of soda). In addition to that diaper, he had soaked through his shirt, boppy, sheets and his beloved stuffed bunny. The rule has always been to not wake a sleeping baby... so instead of running the risk of repeating this process again, they have changed the time he gets his diuretic to noon rather than 6am.


• Kristen is getting ready to go into the hospital and work on getting Reid moved into the TICU. Unfortunately, I am in DC this week and won't be able to help her out. We should have more details later today when the dust settles.


• We need to keep those prayers coming Reid's way. I think our hopes of having him home this summer are becoming very slim!

5:15am: We took a few videos when we got back into the NICU yesterday evening. After Reid's bath, he was in a pretty playful mood, so I had to share: