The crying hasn't stopped, except for a few moments at a time for over 48 hours. I have never been so frazzled, worn out or tired in my life. Jason and Katie are pretty stressed over it all, too.
I broke down and called UVA cardiology dept. last night after Sadie cried from 5-9pm (it continued until after 11) and they diagnosed withdrawals... again. She's just not kicking the methadone like she should. They recommended I get in to see our local cardiologist ASAP, so I took Sadie in this morning, screaming. The cardiologist was alarmed at first - sure that she was in pain and that something must be wrong. But they did the full work-up - EKG, PulseOx, etc., etc. and everything came back perfect. Except that she was screaming, and appeared to be in pain. I asked if it could simply be colic, and they said that they doubted it - that it appears to be an extreme reaction due to withdrawals. They told me that she's one of the sickest TGA babies they've ever had, and as such, it took longer to stabalize her before surgery and she required higher dosages of medications than most. She did so well after surgery that she came off the meds very quickly, but her body just can't seem to cope without the narcotics. So... back home we came with a new script for yet more methadone and another week to deal with going back up on the dosages and then coming back down.
It's reassuring to hear that she's a miracle baby, but it's always hard to be reminded by the doctors just how close we came to losing her. It kind of brings back those early days in a flood of feelings that are almost unbearable. I know we are over the hump now, and that it's ok to look back, but I'm still a little jumpy about it all. It's odd that it's hitting me now more than it did then that we were so close to the edge at the time. I guess I've just had time to process it - then it was just a flurry of stat numbers, diagnoses and medicine doses that I could focus on so that I wouldn't have to let in the emotion of it all. That's not to say I didn't realize what was going on, or what was at stake. It's just that now that the worst of it all is over and we're resurfacing a little that I'm finally able to let go and realize just how much we've gone through, and how much little Sadie has overcome.
Anyway, since getting her increase on the methadone again last night, we haven't seen much improvement, except that we're getting longer periods of sleep (an hour at a time sometimes! Wow.). I'm so exhausted and worn out that I just want to cry. I can't stand seeing her crying. They keep reasurring me that she's not "really" in pain, that she only "thinks" she is - but that's not enough reassurance for me. She cries for HOURS at a time - with only 15 minute or less catnaps in between.
The good news in all of this is that all of the tests came back beautifully - Sadie is healing well. Now if we could just figure out why she's crying so much. Tomorrow we go to the pediatrician. I'm thinking that there might be some colic involved, maybe in addition to the methadone withdrawals. Who knows. Hopefully we can get some answers so that at least I know that she's ok, and there's nothing more seriously wrong with her (as if it's not enough for her - poor baby).
On a side note, I feel like there's something I need to say to some people who have been reading this post (most of you will have no clue what I'm talking about, so please ignore this). It came to my attention yesterday that some people that have been reading this blog that have been offended by some of my comments. I'd like to just take a moment to say that this is my PERSONAL venting post, and it doesn't reflect my family's opinions, or anyone else's, for that matter. If you don't like what I say, don't take it out on one of my loved ones - just stop reading. We're all going through enough right now without strangers reading my comments and making life even more stressful for us.
That being said, everyone else has been so wonderful through all of this. My mom has been awesome - she's been here every day helping with Sadie and Katie. Jas's parents came and watched the girls for a couple of hours today so that I could be on a teleconference (unfortunately, as a small business owner there's no such thing as maternity leave for me!). A group of our friends who have kids that went to school with Katie last year have brought meals every night this week, which has been a HUGE help since Sadie rarely allows us to put her down even for a moment. The whole day goes by in a flash (although the crying never seems to end), and I don't get a thing done - our home looks like a series of tornados have blown through it. Friends and family have been calling, stopping by and offering support and encouragement daily, and it means a lot -especially when I'm so worn down. Thank you to all of you who have helped make life easier for us as we've gone through this nightmare - we love you!
Thursday, October 05, 2006
AAAARRRRGHHH!
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