Friday, May 19, 2006

A new room

Three families with short gut babies went home yesterday. One to Washington, DC, one to the Boston suburbs and one to somewhere that I'm not sure of. They had each been here for more than a month and one had been here since December. We had spoken with the parents a lot in the past wekks about our kids, their treatments, and their progress, an informal support group of familiar faces on the floor. Sometimes I think that the dynamics in prison must be similar and I want to ask folks how long they are in for, but resist.

It was encouraging to see them pack up and get out of here, even if if was nerve wracking for them to leave the comforts of the hosptial where help is only seconds away and lots of help is only a bit further if you push the red button. But red button or no, home is the goal and off they went.

What this meant for us is a change of scenery to a single room without the musical chairs approach to roomates that we have seen over the past three and a half weeks. By lasy count we had just shy of 10 different roomates during that time. Some were there for multiple nights, some were there less than 24 hours, but none were long term guests of this crazy hotel (I still slip every now and then and call it a hotel) and sharing a room was not so much fun.

Now we are in the penthouse, with our own bathroom with a real shower, a TV remote that we can turn up without disturbing the neighbors (or vice versa) and our own space for our stuff, that doesn't have a line of bathroom traffic going through it.

I spent last night in here with Ellie and we did just fine. We skipped her 6 PM feeding because she barfed just before my parents left yesterday afternoon and by 12 she was fired up and fussy and slurped her 3 ml of milk like a champ and went to sleep for me, off and on until 6 this morning. We both slept soundly in the dark without the hiss of another baby's ventilator or the beeps of another baby's machines.

Maybe we slept too soundly because at 6 I heard gassy noises coming from her crib beside me. Using the auto-daddy response, I got out of bed and there I stood in my pajamas and t-shirt staring at our nurse who had quietly slipped in and was venting Ellie's gas from her G-tube.

I have to give her an A for professionalism because she never flinched at me standing there, half dressed and frazzled. She just went about her job. I on the other hand realized my state and quickly lay back down to try again at getting up with dignity (and the dorm style 'half twist').

I wonder what kind of good stories the nurses have about parents sleeping in the rooms. I know that they have stories baout the labs across the way and what they have seen through the windows late at night....

Maybe on Saturday morning I will be expecting the early AM visit and will get up in a better way.

Gonna turn my TV on now and not worry about the volume.


Martha Brogan said...

It was wonderful to spend the day with Abby and Ellie yesterday. Dad and i are amazed at what a pro Abby at taking care of a tiny baby who is connected to tubes but then she is a take charge person. She's a great Mom. Ellie and I had long cuddle time so I am far less afraid of the wires and tubes. She is a beautiful girl, very alert and interested in what's going on.

Leah said...

Hi Gib,

Both my parents called me about the arrival of your (very cute!) little girl and her illness.

I am sending my best wishes up to your family and hoping that little Ellie gets through this well.

Leah (Johnson) Russell

jack said...

I believe in Mother's intuition. Your choice, Abby, to just say, "Now is the time to feed real food to Ellie was inspired." It is interesting the number of times I've heard both of you make decisions about changes in Ellie's program, and see those choices work out.

Ellie was much more vital, kicking and screaming and moving yesterday. She slept the first two times I was in Boston to see her.

I like the kicking and screaming version.

Phillies tonight. Clement. Tilt.

Jenny L. said...

Hi Gib and Abby-
Judy forwarded me your blog along with news of Ellie's birth. The strength of both of you while you deal with the challenges of Ellie's condition is inspiring. Ellie is clearly a fighter and has greatly benefited from the strength of her parents. I just wanted to let you know I'm thinking about you guys and will continue checking on your progress.

Best wishes,
Jenny Litz