Our little man had a very hard week...

Sorry for being MIA, but we had a really really hard week, good news is all is on the upswing and we are home...

We came home from the hospital on Saturday, and all seemed fine. Sam was a little fussy, but to be expected. Caroline asked me about some twitching he was doing, and I didn't see it, and I told her newborns are kinda like that, they have jerky movements etc-

Saturday night and Sunday it became apparent to me something else was going on - it was becoming increasingly apparent he was having very rhythmic twitching after some neck arching and mouth movements/gagging when he was trying to go to sleep- I was still trying to shake off the feeling something was wrong -

Sunday night and Monday, it was happening every time he was trying to sleep, and getting worse, after the neck arching etc and before the twitching he would scream, my little boy was having seizures, I was beyond myself with grief - Ray had seen it happen, but was not convinced until Monday that there was something actually wrong - We made an appt to go to the ped a day early, and went in and described what was happening - She said it sounds like seizures, but because it is only happening in the wake/sleep transition that is a very good sign, and because they are short he is at little risk - Said we don't need to be admitted, but she was setting us up with a Neuro appt for the next day.

We got home after the appointment and it happened 2 more times, with increasing severity, he was screaming a bit longer and very inconsolable afterwards - we went into ER -

There the nightmare really starts, my poor innocent boy, just days before warm and cozy in my womb, started the medical journey from hell.

He did end up demonstrating a seizure in ER when they were trying to take blood for the first time...and the Dr saw it, so we are tagged for admission. In the ER they took blood(took 2 tries) attempted, a lumbar puncture(failed but poked him anyhow), got an IV started in his head(took tries on both sides) and cathed him for a urine sample. WE also got chest exrays and a ctscan of his head.

His blood sugar was very low, 37, despite eating an hour before, so they put a glucose solution into his IV(ER didnt have the right strength, so doubled the volume on the lower concentration, ped was pissed)

His calcium was low, and they said that could contribute to the seizures.

WE got up into a room and the admitting ped saw a seizure, and noted how it looked and said this isnt an all over brain seizure, but a localized seizure in the motor cortex.

By morning, they had really decreased in severity, much shorter and milder - as a side note, I have not recounted both the troubled pregnancy story and every minute detail of his seizures to at least 1/2 a dozen people, with many more to do in the next 2 days)\

But I was still so fragile, the woman came to draw blood and my tears just start flowing, I just cant stand to hear my boy hurting, and again, it takes 2 tries to get it, with me holding him down again telling him it will be ok...

The pediatric neuro came in, I really like him, said we should get an MRI and do 24 hours ov video EEG - but maybe should wait a little bit to see if they go away as the calcium etc comes up.

That day, Tuesday, was horrible, I was still working on no sleep
since I just had him on Friday, the ped orders the MRI and video eeg- he had an MRI at like 2, they didnt want to sedate him, so wanted him to be asleep, which he was when we strapped him into the machine, I sat in the room where it was done, with earcovering, and it was so loud, I was just so sad for my boy, after 30 min of this he come out looking like he was in a coma, they say look he slept through the whole thing, I told them no way, he shut down to prevent the assault.

We get back up to the room and have about 40 min for him to eat, and they I wanted him to sleep, but the EEG people come in -

They procced to epoxy glue 20 leads on his head with the most rancid smelling glue, and the tech is having me help hold again. He was so tired, and again being held down and manipulated was too much for him (and me).

He started to seize again, this time like 4 in a row, I ask him to wait, I just wanted to hold him and comfort him, but he was half connected- I call the nurse, tell her to talk to the neuro because I think they need to start the seizure meds( we were waiting because things seemed so much better in the am, and ask her to get someone else to help him hold Sam, I was done.

I went out into the hall and sobbed, uncontrollable, just sobbed - Ray got there about then, he hadnt talked to me since before the MRI - and I broke down even more-

The eeg stuff gets done, and it is discovered EEG man has disrupted the IV on the head so we cant give the phenobarbital until a new IV is placed- more stress on Sam, I still can't hold him he is STILL crying, and on and on -

They get him the meds and he still has 3 seizures, captured on video this time. Neuro calls me and tells me he wants him moved to PICU for now as he will need another loading dose of pheno, and it can effect respiration etc- I cry, I cant stay there with him etc, I need to pump, etc-

PICU staff comes in and talks to us, I feel a bit reassured because he will be well taken care of.
Anyway, he gets moved, we visit him then go home, I was running on about 10 hours total of sleep since he had been born, and needed a little rest. Slept a few hours that night, got up to pump for him, etc.

They next day he was totally out of it, but not hurting, and not having any more seizures. He needed most of his food via NG tube, as he wouldn't stay awake to suck the bottle. The eeg 'hat' was heavy and cumbersome though. They converted is pheno dose to a normal maintenance dose wednesday. We stayed all day and I pumped so he would have enough milk for the rest of the night, then we went home, pumped and slept -

I felt much more human on Thursday, they took his eeg head stuff off thursday morning, (with acetone, poor baby) and he was mad, pulled the NG tube out, and was happy to have the stuff off his head. I asked the PICU staff if we can go back to an on demand feeding schedule, as the every 3 hr schedule wasnt a good one for him, he wants to eat less more often.

So, for the rest of the day, we have a baby again, he eats, he is awake when he should be - We get moved back to a normal room, and he is amazingly wonderful, waking to eat, big eyed and beautiful, and not seizing. I stayed there Thursday night. Oh, on Thursday we find out his urine culture from the ER comes back positive, he has a UTI, so we get an ultrasound, and I have to go back as an outpatient get get another test run on him to rule out urinary reflux, treatment is a daily antibiotic to prevent infections. I bet he is perfect though, and the catch was contaminated in the ER.

We came home yesterday with a baby that is perfect, on the meds for 3 months and will taper off - The MRI and everything came back normal, no brain lesions etc- they think the seizures wont come back, and were prob caused by some sort of brain immaturity due to his womb experience, and possibly triggered by the low glucose/calcium.

The neuro said he was demonstrating alot of preemie signs, even though he was full term, the low glucose, inability to maintain body temp etc-

So we are home, had a great night last night and I truly think the worst is behind us. I am still pumping and bottle feeding, as he is so small, he wasnt sucking hard enough to get enough food. The lactation consultant thinks as long as I keep my supply up we should be able to get him back on the breast without too much difficulty, I really hope so...

So even though you all didn't know what was going on this week, I could feel your strength with me, all the prayers said have helped us through another challenge, seemingly no worse for wear and possibly in better shape than before.

If you actually were able to read all of this, I applaud you!

Catherine