BeBa

Oh a couple other tidbits about BFing (thank you for putting up with me – I’m working through the experience mentally and putting it all down in writing is soooooo therapeutic for me).

When I took him to the doctor on Tuesday, one of the assistants was watching me nurse him and you could see the gears grinding as she put two and two together… here’s a little 12 month old baby nursing right in front of her eyes! She just had to ask: “Has he ever had any solid foods??”

Then the GI doctor, the second day we saw him: “You understand that breastmilk alone is not enough nutrition for a baby over 9 months old, right?”

This AFTER I told him and his assistant AND the nutritionist AND the two different pediatricians in detail what his normal daily intake of solids/breastmilk was. I saw them all taking notes – does no one ever READ this stuff? No, they just look at me nursing him through a freaking illness and extrapolate that to well child care.

My god, the frustration. If I’d had another day there, I would have been saying, if you’re just going to breeze in here on your rounds, say stupid shit and leave, then don’t waste your time and MY MONEY. If you want to have a productive conversation with problem resolution and total health and wellness in mind, then grant me the courtesy of LISTENING to me when I talk, otherwise how in the hell can I take you seriously??

I despair of our health care system. Would socializing it make us even MORE powerless than we already are? That might be one for the debate thread LOL.

And on that note, I don’t even want to think about the bill we’ve incurred. <groan> So much for being out of debt….

We are all much recovered this morning. Jake seems to be pretty much 100%. He was eating well last night and all go go go energy. This morning he had a huge boob of breastmilk when he woke up, followed by 1/2 an avocado and yogurt, then cheerios, then later a bunch of daddy’s scrambled eggs. I think he’s back to normal eating. PHEW.

I’m keeping a food diary and being more conscious about giving him calorie-dense foods. We’re also buying a baby scale so I can log his weight. In hindsight, I should have been doing these things all along. But really, I’m only doing it for CYA, which is annoying. But the fact that I didn’t do it before (and wasn’t doing WBV) is part of what got us into this pickle. We were in no way prepared for the system when we were suddenly forced to participate in it.

He won’t have anything to do with pediasure in a sippy cup. I will try it as a frozen concoction later and see if he likes it better that way. He is a boobie baby though and when he wants to nurse, he wants to nurse. Does it really have more calories than breastmilk? The nutrition people were very forceful that we should give him lots of pediasure to get his weight up. (Of course, they are all adamant that he is failure to thrive.) I need to investigate this.

Scott and I are recovering. Wow, what a hard, traumatic week this has been. We’re still processing the whole thing. I can’t wait to see my girls again later today. Bailey’s been keeping up her blog during this whole affair – it’s awesome. She always claims she hates writing, but set the assignment up as a blog and she’s looking for things to write about. I think what she REALLY hates is longhand. Funny, huh?

It felt so good to sleep at home as a family again last night.

Also, if I ever have a puking baby again, I would manage it very differently from the beginning. Again, in hindsight, I completely mismanaged it by just letting him nurse and nurse. I hope there is never a next time, but if there is, I would give him tiny portions of fluids frequently via syringe until he could keep that down and then gradually increase the fluids. What finally got him keeping breastmilk down in the hospital (once he was hydrated via IV) was letting him nurse no longer than 5 minutes every 10-15 minutes. Once he was keeping that down, then we added BRAT diet foods, again in very tiny, frequent portions every 15 minutes. It’s basic nursing 101 really, but we had 4 nurses before we finally got one who gave us awesome advice and guidance (the same one who suggested the pediasure) in getting Jake on the road to true recovery.

They never did identify the illness. It was not rotavirus per stool sample testing. The ped thinks could be viral, or could be a clue of something ongoing and chronic.

The GI doctor thinks 100% NOT viral and that something is wrong with Jake. He thinks FTT is first red flag and this vomit episode is the second. The end. He was all but rolling his eyes at us for thinking it could be anything else.

Scott thinks 100% viral and is very skeptical that anything is wrong with Jake (both Scott and his father were skinny babies who freaked out the doctors and their mothers, but nothing was ever identified wrong with them). This is a very emotional issue for Scott and his mom especially – they are very frustrated to see history repeating here.

You can imagine how he butted heads with the GI doc. Oy.

I think that Jake’s weight is a red flag meriting investigation. I think it’s more likely that it’s just the way he is, but I can’t help but be concerned that something else is going on and if there is I want to know about it. If there isn’t, I would be thrilled to have stuff ruled out so I don’t have to wonder anymore.

I was so glad Scott wasn’t with me during that conversation with the pediatrician yesterday. He ended up with a migraine all day Thursday and didn’t sleep much Thursday night. He went home to get some sleep when I arrived at 7 am on Friday morning. The way that conversation went, I’m glad he wasn’t even around! He is actually very unhelpful to me in those situations, because he can’t contain his frustration AND be articulate at the same time. He agrees that I should be in charge of interfacing with the medical community LOL. Once we worked out the tag team strategy, we had some good teamwork in force. Scott would take the night shift and I’d go home to sleep. Thank goodness Jake sleeps through the night without nursing most of the time! Even when he woke up, Scott had no problem soothing him back to sleep.

Then I’d arrive in the morning fresh and armed with research I was able to do while home with the computer. It was far better for us if I was the one who had her wits about her when the doctors did their rounds.

Oh I just remembered the part where he said that Jake’s “language delay” could be indicative of autism.

MORON, there is NO LANGUAGE DELAY.

Seriously, you guys, it seems surreal that this conversation even happened. I think he got flustered when I got aggressive with him and just went off the deep end.

Yay! That sippy cup contains the Pediasure that Jake is mostly not interested in.

Otherwise, he seems to be keeping his solids down (he’s advanced to yogurt and Cheerios). He didn’t have much appetite in the hospital, but interestingly he thought eating sounded like a great idea once we were home and he was strapped into his highchair.

His energy is good, he’s crawling all over the place. Ahhh, my baby is on the mend.

Of course, there is lots of follow up planned for monitoring his weight and exploring any potential GI issues. I’m on board for that (not that I have a choice, but I’m on board for it anyway at this point so we can just KNOW one way or another), but I am REALLY frustrated by the alarmist methods used by medical staff.

Even the pediatrician, whom I previously respected, trashed his credibility with me when he starts in on how he’s concerned because Jake isn’t meeting his milestones because he wasn’t talking nor being very active when he (the ped) was observing him. Well, he’s not going to talk or squeal or be excited when he is so frustrated by his environment. He’s not going to show you all of his tricks when he’s in my arms or penned in a baby jail. He’s recovering from a serious illness and you always come during naptime, plus the boy’s got a sleep debt because now that he’s better he’s too alert to nap in this place. WTF? Not to mention that 2 out of the whole 3 times you’ve seen him, he’s been asleep!

Then he says, I’m also concerned because his fontanel is closed and that means his head/brain may not continue to go. Hmmm. Interesting that pretty much every single resource I’ve checked says that 15 months is average and as early as 9 months is still normal.

Then he tilts his head and says, “Does he ever call you mama?” I said: Mama, dada plus about 20 other words we identified before we stopped keeping track. He says well I’ve got a one year old across the hall who shrieks mamamamamamama anytime I’m in the room and I see this baby who is mute the whole time I’m in here, so how can I not be concerned for him. He should be talking more by this age.

My friends, I went off on this man. What kind of idiot does he take me for? I said I understand your position here. I respect your concerns and to some degree I share them. If something is wrong, I want to know about it. I have consented to testing and will continue to follow up so we can eliminate or identify any issues. HOWEVER, I do not appreciate your alarmist tactics in an appeal to my emotions. I am an analytical person who intensely researches the issues. Any decisions we make about his continuing care will be informed and rational.

And I went on further in that vein. PISSED. I said, I can handle the idea that his low weight might be CF or gluten/dairy allergies (even in the absence of ANY symptoms, mind you) but I would feel a lot more confident about YOU if you conceded that there is some chance this is *just the way he is*, particularly given his genetic legacy.

I keep telling myself the man is trained as a doctor, not a lawyer (i.e., it’s no surprise his persuasion skills suck so massively), but it’s hard for me to respect the intelligence of someone who would make such nakedly uninformed remarks about my son. DOES NOT INSPIRE CONFIDENCE to say the least. Although I understand his motivation is to ensure we do follow up care.

AUGH.

God, I’ve been dying to get that off my chest. And what the hell kind of hospital in 2008 doesn’t have Internet access for people? I felt so incredibly vulnerable without having informational resources and support readily available. I realize, of course, the medicos probably like it that way…

Anyway, I am worried about little Jakey now. If something is wrong that can help him grow better, I hope we can identify it easily and quickly with minimal intervention.

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