I didn't understand what he meant. So we went back to the pediatric neuro-geneticist who had done the muscle biopsy and really was the lead in investigating everything. She said they had done all sorts of tests and the autopsy, and that she was 99.9% certain Dominic died from Infant Botulism. She said she couldn't say 100% because she'd been wrong before, then told us of another family who had a child die who they said wasn't from a genetic condition, but it ended up that a subsequent child became ill and they did find that both siblings did have a genetic condition. But she felt confident that without any other real results other than the botulism, we need not worry about our other children. She felt our pediatrician just had too big of an ego to admit that all those times we took Dominic to him, that he failed to recognize all the symptoms as Infant Botulism.
Well, today, I saw this story: Hampton mother endures infant botulism scare. I guess it just really hit my heart. The mother worried about her daughter, took her to the ER. The ER tells her the baby is okay, and to take her home. But the mother trusted her instincts. She drove nearly an hour to another ER at a children's hospital. And they were able to see there that truly there was a problem with the little girl. She was able to get help, and is now recovering from what would have otherwise been a fatal condition.
When Bridget was flown to the same hospital, the same pediatric neuro-geneticist told us that Dominic did die with Infant Botulism, but not from it. Whatever had caused their crisis events was from an underlying genetic condition, likely a mitochondrial disease.
It just makes me sick, though. Did Dominic die because I didn't keep going from one doctor to another until I found one who would really see how sick he was? Did Bridget die because I didn't do that for her, either?
I think I've been too concerned about what everyone else thinks . They don't see things as concerning as I do, and so I feel embarrassed that I've over-reacted and then question myself when I feel concerned again.
This is particularly true in regards to what my husband thinks about things. He would tell me over and over that he didn't think anything was wrong with Dominic. He was just small. Some babies are small. And he also tried to reassure me many, many times when I would tell him how worried I was about Bridget.
I have been looking at the chat records from when I'd talk with him and tell him I was very concerned about Bridget, how lethargic she was being just like Dominic had been... I've been looking at those conversations. I want to know if I tried hard enough. I want to know if I was just over-reacting about some things.
This is one of those conversations, which was our back and forth for an hour:
ME: of course i don't have the car so i can't really take her in, but bridget is not really eating today :(
HIM: ack, sorry. :(
ME: I keep trying to wake her up and she's just not really doing it. she's not exactly lethargic, cuz she spent like an hour being alert and awake, but she's just not sucking... i'll try a bottle again, though
i'm really discouraged :(
HIM: sorry. don't give up, she'll perk up.
ME: but if she stops nursing, i'll lose my milk even if she does perk up, so i won't be able to nurse anymore
HIM: it's only been a few hours, you're not going to lose your milk.
ME: and she's not even really taking the bottle either
she'll get started on either, but then just give up within the first minute
HIM: weird. is she acting ok otherwise?
ME: she doesn't seem to have a fever or anything
i'm not sure what suddenly changed, because yesterday I was feeling confident enough to stop writing all the nursing stuff down
HIM: maybe she's just extra tired this morning
has she been pooping? maybe she's backed up and not feeling hungry.
ME: but she was wide awake for probably her longest span
she's been pooping, yeah
wet diapers too
ME: well, i did get her to latch on and stay on, but she is definitely not so vigorous
i'll still offer another bottle afterward. don' tknow what more i can do
still won't take the bottle
This one was over a two hour span:
ME: i'm wondering if i ought to find out about domperidone
The next day, this was our conversation:
This was about five days later:
ME: bridgets making me nervousI look through these conversations, and many others. I look at notes I'd written down, journal entries. It is obvious I was concerned. And there are even times it seems I'd respond to that concern in a way more heightened than perhaps it should have been. And yet, ultimately, my response was not enough. I discounted all those things because I wanted to be "level-headed" about it and not get "carried away" in fear.
ME: hasn't pooped since yesterday. shes making those weird noises
she was wide awake when the nurse was here
went to *'s school and ran into april, and we were in the parking lot talking for probably about an hour
i think it was too hot for bridget, so now Im' worried i fried her brain or something :(
she's nursing, kind of, but weakly
HIM: if you were just outside and not in the car or anything I'm sure she didn't overheat.
she's probably just tired, maybe getting a little sick from what the other kids had
ME: but toward the end I did get the kids in the car. had both sides of the doors open
but not sure, maybe 10 minutes in there? It was pretty warm when I got in, even w/ those doors open. i turned on the air conditioner full blast, but maybe something's wrong already
doesn't help i'm in hyper paranoid state this time of yera anyway
HIM: no, it wouldn't have made a difference especially with the doors open. she didn't overheat
ME: and nursing a floppy baby is just kind of freaking me out alitle
HIM: I'm sure it is. just keep an eye on things, but she's ok.
ME: the nurse did say that she'd never felt a soft spot on the back of a baby's head like bridget has
said to definitely meniton it to the dr
but said her soft spots were not sunken or raised, so that was good
she said there's a soft spot usualy on the lower back of the head, but closes up pretty quickly after they're born, so it was really unusual to her that bridget had that extra soft spot area
also said the lower jaw may be making it harder for her to eat so to bring that up w/ the dr
and to ask about the RSV shot, but she's not sure if she'll have that covered or not
And here I am. Still trying to figure out if the concern I'm feeling now is legitimate or inflated. I still wish we could figure out if Dominic really just died from botulism, but then if so, what did Bridget really die from? And if they both died from the same thing, then what is that "thing?" You'd think after this long, we'd have a clear answer. So knowing that even good, smart doctors can't help us always, that mixes in with feeling embarrassed about "getting too worked up about 'nothing'" and the fact that really, my kids are overall doing okay, then make myself feel justified for not trying harder to find what is going on.
Then I read stories like the one above. And I hear people talk about how their child lived because they were the advocate that their child needed. I feel bad. I feel like I failed my two kids who died. I feel like I'm failing the ones who are having these things that sometimes seem inconsequential, and other times seem to be a symptom of something bigger. I feel like I need to gain confidence to be more bold and "fight" for my kids, and I feel like I need to settle down and be more calm so my kids don't have to be in the middle of a fight for no reason.
This blog is titled "It Might Be Mito." But it could have easily been titled "It Might Be Nothing." So I struggle.... unsure. Even with hindsight.