Thursday, August 29, 2013

Homecare Adventures

10 days post stitches and ALL kinds of fun. In not sure if its an oversight by the hospital or the nurse or me for not asking. But they forgot to tell me how to change the tape on the stints. It should be pretty standard except that the rubber bands are literally sewn in. Hmm. Challenge accepted.
I managed to figure out how to stretch the bands without snapping or cutting them and get the old tape off. But this process was a good 20 minutes at a time. Then you get to lube them up with some sort of jelly safe for a baby and her nose. Never mind the screaming that happens once you get them back in her nose or the ripping she does at her cheeks to get the tape off.
I have a lot of parents try to pat me on the hand and tell me that they understand. No. You don’t. Unless you have a child with a medical condition that requires constant attention, you simply don’t. I recognize you’re trying to make me feel better, but as I’ve mentioned before, until you know what it is to hold you child praying that the choking will pass because there is NOTHING you can do to help, you don’t understand. I appreciate your empathy, but please don’t give me advice because you simply don’t understand.
Once I mastered getting the tape on the stints and the tape on her cheeks, there was a new challenge  each morning: Find the damn thing. Ondine woke up a few days ago and the stints were MIA. Sheer panic. Had she thrown them somewhere? We’re they in the crib. Please God tell me she didn’t swallow them!
Four days go by. It’s the Monday after we noticed them gone and they suddenly and mysteriously appear on the changing table. But not in a diaper or something. Oh no just casually hanging out near the wipes.  I’ve decided this is the ongoing “WTF happened to that” syndrome. It means you hand the baby a toy or something and seconds later its completely gone. Weeks later the garden gnomes have returned it and all is well.
We kept at if for a few days after we found them, but frankly they became more of a hassle then they were worth. We decided it was not worth it to make her cry over anymore. We have plenty to make her cry just being a regular baby. The struggle with the cleft, well lets try to make this as easy as we can and let her BE a regular baby.
Goodbye stints. Goodbye tape. Until we meet again at years end. 

Monday, August 19, 2013

Stitch Free, the Return of the Tape

So excited! August 19th and the stitches (finally) come out. This was a longer than normal stitches in situation due to schedule conflicts. The doc was out when we were in so to speak.  But huzzah they’re out! …
And the tape is back.
We knew she would have to have stints- little plastic tubes- to help her nose keep its formation after surgery. We forgot that there would be tape again.
She was NOT a happy camper.
Well such is the way of it. We don’t often like things thrown our way. More often than not we are fully prepared for one challenge and life throws us a curve.
For Ondine, the challenges will be life long. I have friends who are so excited. They think her journey is over. I don’t have the heart to explain there are at least two more surgeries.  This one was substantially cosmetic when you get down to it. The future holds a much more significant and difficult surgery. But we can only face them one at a time.
So for now, we will dutifully put her new device in and e the mean parents. Because the rest of her life she won’t remember this pain.