Betsy Bailey

Notes from Jake’s hospital stay:

A friend posted this for me to my mama group on Wednesday, August 13:

*Update from Betsy*
( I totally should have taken notes, I’ll try to get this right)

I just got off the phone with Betsy- after three big doses of fluid Jake is definitely more perky, but this flu bug is turning into LOTS of testing and concern at the hospital. There’s a gastro…DR. involved and he’s having Jake tested for all sorts of things, even Cystic Fibrosis. Jakes Liver count was off a little and his thyroid was a little low. So the poor bub’s been poke and prodded tons and tons with blood tests etc.. It could be nothing, just genetics, or, even without presenting any other symptoms he could have some sort of mal-absorption issue. The doctors are concerned because Jake is So far off the bottom of the charts. Again- could be just his unique genetics (we hope so of course,) but they want to rule out anything else.

Betsy and Scott are tag teaming at the hospital and her girls are staying with their father, who had just texted Betsy to inform her that now Mira is sick with a cold. Betsy got VERY little sleep last night, so Scott’ll stay there with Jake tonight while she goes home and tries to get some sleep. The good news is that he hasn’t thrown up in almost 24 hours and he’s nursing just about every hour. Betsy has been updating her facebook and flickr accounts from her iPhone so you can check those out if you like, I don’t have a link to them, but the post above has her flickr account link. She said she had this long post for us all texted out this morning and it got lost!

Me, on Thursday, August 14: Sorry for the lack of email updates – turns out the hospital doesn’t have wireless access. Thank HEAVENS for the iphone so I’m not completely cut off. However, I lost a long update message I have typed up on it yesterday (which is a huge time/effort investment on any phone lol) and I was so discouraged I didn’t have the heart to do it all over again).

Thank you for this thread, Amy and thank you for posting updates for me, Alissa!!! Oh, and thank you Molly for posting that photo – I’m so glad you did that. It’s so awesome to see him getting back to himself after DAYS of being just… no smiles, no laughs, no chatter, no interest in toys/books, etc..

Anyway, Jake has been making great progress – a new baby now that he is rehydrated. But his progress is slow. He’s nursing like crazy (like a newborn – every hour, 30 min at a time). A lot of comfort sucking, tho – my supply isn’t high since he has so many solids normally.

He’s not ready for solids, though. We tried some yesterday and he vomited last night again around 10 pm. I was devastated. We were naively thinking maybe he would be home by tonight, but now I realize that is so very unlikely. ( We’ll probably be there until the weekend, if not *through* the weekend. He has to be completely normal in the eating, peeing/pooping department before I have any desire for that IV to be removed. The trauma of having it inserted was too hard to contemplate going through that again.

And as hard as the hospital is on all of us, I know when he vomited last night and I was sobbing, I was also thinking thank god he’s here with that IV so that he won’t get dehydrated. It took 3 boluses to get him hydrated. He was in a pretty sad state and it scared me to death.

There’s more… as you all know Jake is less than 3rd percentile for weight (25-50th for length). Aside from a cold or two, he has always been in perfect, perfect health until this week. However, the doctors are convinced that something is medically wrong with him that is causing him to be small.

Based on Scott’s personal and family history (and mine!) we think that while Jake is a statistical outlier on the charts of the general population, he’s pretty much average on the curve of Bailey men. The gastroenterologist brought in to consult disagrees. He feels 99% sure (based on Jake’s weight for age) that there is something wrong and that’s what is causing his weight to be so low. So Jake has had lots of extra blood drawn for testing and had a cystic fibrosis test last night (pray! vibes!) to see if they can identify a problem. I’m so worried about my little guy on many levels. And exhausted from advocating/being treated like an idiot/navigating the system.

His thyroid is a little low and bilirubin is elevated. The panels could be all fubar from his extreme dehydration, though, so I’m not investing much worry into them until they can run them again on a HEALTHY baby. They say the thyroid wouldn’t be affected by the dehydration, and that may well be, but the guy is definitely not chronically hypothyroid as identified by the symptoms list – he doesn’t have ONE SINGLE symptom of hypothyroid. They are looking and looking for symptoms. I think they think I’m lying when I say he doesn’t have excema or constant GI problems. “Are you SURE he doesn’t have diarrhea? no funny rashes?? etc etc.”

I’m home right now. I had only 1.5 hours sleep in a 60 hour period and I was a sobbing mess last night, so Scott sent me home to catch up on sleep. The alarm woke me up after 7 solid hours.

You know how you have a bad dream and you’re so relieved when you wake up and it’s not real? I had the exact opposite experience this morning. My house is empty and lonely. I miss my girls and my normal life. But at least I got a good night’s sleep – I feel much, much better. I haven’t called Scott yet – I don’t want to wake him up if he’s lucky enough to be asleep. Poor guy, I hope he was able to get SOME sleep last night.

I hope Jakey is well enough to be home soon. He is certainly chipper enough on the IV (good times, good times – constantly disentangling an active baby from his IV line).

So I’m hopping into the shower and headed back to see my baby. I hope he’s hungry. Especially for nummies. )

Thank you all so much for your well wishes. Please keep them coming!!!!

XOXO