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Friday, August 6, 2010

One of *Those* Days

Often I hear people comment, "I don't know how you do this!" or "You look like you're handling this all so well!"

Enter yesterday.

CHOP's team is decidedly much slower at things than Chester County. MUCH. SLOWER.

The Speech Pathologist at CHOP was talking yesterday about waiting another 3-4 weeks before doing the swallow study. Her concern is that we want Charlotte to have the best possible outcome from the swallow study, so we can see her real potential. If right now, she were to have a "bad" swallow study, everyone would be like, "well, that's what we expected," and not much would change. Giving her more time would allow her to {A} grow and {B} practice more with the bottle.

So I get that. However, the whole reason we were transferred down to CHOP was to have the swallow study done, like, you know, before she starts walking. Why am I taking a train into Philly every day, when she could growing and practicing at CCH?

So then, the Fellow comes in and is like, "I think we might transfer her back to Chester County. Let's do a swallow study on Wednesday and transfer her back on Thursday." To which I say, "Fantastic!" Except, of course, if she needs a surgery of some sort, then its ANOTHER transfer back to CHOP. If she is ready for a swallow study to be transferred back, why isn't she ready for a swallow study to get her on the path to coming home? Why all the transferring?

Pull yourself together here CHOP. Make a plan. DO IT.

And then of course, in true "I'm in charge here, you're just along for the ride" Charlotte-fashion, she brady-desats (Heart rate and oxygen saturation drop) while "eating" her 2-4 mLs. 2 mLs? Charlotte, seriously, time to pull yourself together here, too.


It was just one of those days.

So what's the plan? The current plan is to pull myself together and make a plan with the CHOP team. Is she going back to Chester County? Is she staying at CHOP? What's our goal? I'm no longer sure of what her requirements are to come home and I think that's where we need to start. I KNOW no one has a crystal ball (right? No one has one of those, right?) so we can't have a schedule-- but I think we can have a goal.

I'm hitting a wall here, and I know, this is going to happen by day one billion in the NICU (OK, more like 155 or so, but still...).

I feel as though I needed to show you how NOT put together we can be :)

So you can all stop being impressed and come over and eat chocolate with me. Much better.

See you Monday.


  1. Hey, um, could I come over and eat chocolate with you? Seriously. I can come to you, wherever you are, and have a little rantfest.

    After being secretly happy Charlotte could come back to CCH (I never know if that should be a happy thing or not) my next thought was "but they put those two babies back in Charlotte's room!" and someone was using her crib, but I think it's available again. Obviously, I know CCH is in on the plan and will prepare accordingly but I really feel like I should go in there today and be like "Do you know CHARLOTTE might come back! Do you have a plan? Where will you put her? It better be a GREAT SPOT. ALL HANDS ON DECK!"

  2. I totally understand!!! Rant away, we sure did. Sometimes that is the only way to get things done. And despite what you think, you are doing great. Prayers go out to you.

  3. Is the requirement that Charlotte needs to walk out of the hospital by herself?--because I can see that becoming a real possibility. Thinking of you today. . .

  4. hillary, i think they've actually upped Charlotte's requirements to "Being able to sing her ABC's with minimal errors" ...that's normal for discharge, right?

    sorry girlie. oh how i hate the "end" part of the NICU. i hope you're able to have a fun meeting and get this all figured out. (i say start lobbying for going home on a NJ tube.. like tomorrow? haha...ok... i'll stop now. )

  5. I'm thinking of you, a little meltdown was bound to happen. Sometimes it just feels good to have a hissy fit...Would love to have CA back at CCH but know that God's plan is best, despite all the planning we do. I hope NYC was fantastic, you were overdue for some girl fun. But think what girl fun you and CA will have soon (evvntually)!