Updates on Laurel: April 2001

Laurel is NOT having a good first day at the new sitter's!

Not the sitter's fault, I don't think - I think Laurel just knows she's not at home and Mommy and Daddy are nowhere to be found. We haven't had any trouble the couple of times we've left her with someone at our house, and she usually behaves fine for us when we take her places - but the sitter said the minute I walked out the door (and I THOUGHT she was asleep!) she started to cry and all she has been doing is fussing and throwing up and NOT settling down for her nap (and she must be exhausted by now...). I feel so terrible!! But I'm not ready to quit work and stay home - I NEED something to think about besides Laurel's problems, and housing prices in C'ville are so high we'd have to go back to an apartment if I quit and I hate that idea...I'd go back to the sitter-at-our-house idea since she seems to do better with that but it's just so hard to find ANYBODY to watch Laurel...wah...

OK, so I overreacted a little about the babysitter...by the time I picked Laurel up, she'd already calmed down quite a bit. (Although she HADN'T gotten enough sleep and zonked almost instantly when I put her in her crib.) I expect given a little more time she'll be fine...I guess part of my problem is, I feel guilty about having her at a babysitter. I can't even claim that, if we could afford it, I'd stay home...because I probably wouldn't. I like to work outside the house anyway (I HATED the six months I was unemployed after grad school), I take pride in my career working for the environment, and frankly it feels like a vacation worrying about mundane things like meeting schedules and project deadlines after facing Laurel's problems. But every time you guys go on about what a wonderful mother I am, I think, "Yeah, if I were a wonderful mother I'd stay home with her..."

So there you have...well, something...

Those of you who have been around awhile may remember that my aunt has liver cancer...

Laurel has her first cold today!

Anyway...this just figures (given the whole thing with the sitter)...my poor miserable baby, though, she hasn't been able to sleep for more than 2 hours in a row since last night. Bob stayed home for a while this morning so that *I* could get some sleep, but he had a meeting to go to so now it's just me and the unhappy little camper (who is at least for the moment sleeping, thank goodness...).

Well...today we had a reminder that things could be worse...I have read about kids like this (the ones that I've read about were due to severe brain damage, don't know the story on this one) but hadn't seen one...We took Laurel in today to have her "button" (where we hook the feeding tube up) looked at b/c it's been bleeding and tender around it (she often cries when we hook her up). Anyway, in the pediatric clinic waiting room was a child, couldn't tell what age. I tried not to stare but guess I must've given how clearly I can picture him...He was in a cart and hooked up to oxygen, his eyes were bulging, red, and filmed over, and I don't think he could see. His mouth was hanging open and his head was misshapen and way out of proportion to his body, which was stiff as a board (they had him inclined on a platform). If he was conscious it wasn't obvious...I looked from him to my little girl, who was in her stroller clutching the edge of her blanket, wide-eyed and looking around, and thought, Phew. If Laurel had lost oxygen for longer this could have been her...I mean, we're pretty scared about her future but right now anyway the difference between her and this other child is night and day. I feel so much for his parents. It seems to me it would be hard to have any hope at all...and inasmuch as he looked like anything, he looked miserable (those eyes looked so painful...).

Anyway...just thought I'd share...no matter how bad it gets for us there are probably other parents who have got it even worse. BTW, Laurel is doing a little better today - pretty stuffy but she slept better (4 hrs, up for 1/2 hr then another 2.5 hrs) last night than the night before. I feel bad about the button treatment - they cauterized around it and it must be horribly painful b/c she screamed during it and for a good 10 minutes afterwards...we had to walk her up and down the halls of the hospital to calm her. I just hate the things we have to do to her! But hopefully it will feel better in a while...

You know your daughter is seeing too many docs when their staff leave msgs & you have no idea who the doc is...I finally figured it out by going to the hospital's web page...turns out the guy specializes in "biochemical genetics and syndrome identification"...guess we did meet this guy briefly the last time Laurel was hospitalized, didn't realize we'd been scheduled for a follow-up visit, hopefully it doesn't mean anything...

Sigh...

I feel like we're winning some battles and losing the war...

First, the spasms that Laurel WAS having appear to be getting better. Two weeks ago on Sunday I counted 700...a week ago Sunday I counted 160...and this Sunday, I counted about 90. And they are ALL getting better regardless of what her left arm is doing. Her neurologist had said that they were only seizures and therefore only controllable if her left arm made a hooking motion; well, they are all going away at about the same rate - a week ago Sunday she had 40 with the hooking motion and 120 without, and this Sunday she had 26 with the hooking motion and 63 without. Second, she has loosened up considerably! Both her feeding therapist and her pediatrician commented yesterday on how much better her muscle tone was than even a couple of weeks before. And she is more and more returning to using her hands - yesterday we had her in a little woven-cotton sundress (it was SO cute!), and she had never worn anything with that material (and only once wore a dress before and she was pretty drugged at the time) and she kept feeling the fabric and playing with the hem. Finally, we have been offered a wonderful gift for her! A friend at our church had a baby last summer and stored a large quantity of breastmilk in a deep freeze (in which it's supposed to be good for a year) against her going back to work. Well, it turns out that it's been easy to take her DD to the office and she hasn't used any of the milk and has offered it all to us for Laurel. I am so thrilled, I was crying when Bob told me - I wanted to give her my breastmilk so badly but (as people who were around in Dec/Jan might remember) after 4 lactation consultants, 3 rounds of mastitis and pumping up to 6 hours a day I was never able to produce more than half of what she needed, and was driving myself into the ground trying and had to give up. I feel a little weird thinking of her eating someone else's BM but I so want her to have it - I know it's the best for brain development, and maybe it will help with some of her tummy problems.

But now the bad news. Laurel started having a new type of spasm shortly after we brought her home from the hospital the last time and in the last few days they've gotten considerably worse. I counted 200 of them on Sunday! They look sort of like an infantile startle response with a twist to the left at the end, but the really horrible thing about these is that they clearly hurt very much - she always grimaces and often cries. After a long series of them, she cries hysterically, I just want to cry too! Her neurologist informed me this morning that he thinks (having never seen one, of course) that it's just a movement problem b/c she has so many. Well, she does have some odd movements, but they don't make her cry! Anyway, I INSISTED on another EEG and a long one (6-8 hrs) b/c she only has these a few times a day (so far). Hopefully he will come through. I know that some parents of children with infantile spasms have described them as causing the babe to cry and appear in pain, the neuro says no but I know what I have read (and I've read a LOT - there is so much on the Web about this, especially stories from other parents). So we shall see. We were holding on the second opinion b/c the first type of spasm was getting better, but this neuro is treading dangerously close to second-opinion land, I am not going to stand by and watch her suffer b/c he says it's a movement problem w/out even having looked at it! He suggested Valium, for pete's sake! UGGGHHH! Right now I can't decide whether to be terrified or angry so I'm somehow doing both at the same time!

Thanks for reading - it is so good to have you guys to vent to...

I can't get an EEG for Laurel sooner than 2 weeks from now! I'm all ready to go for the 2nd opinion, but Bob says that between his parents coming and him going out of town we can't go before May anyway...I don't know that I can watch her suffer that long...on the other hand, Bob and I have been sharing this pretty equally so I don't want to cut him out...I don't know what to do!

Well...phooey...I don't know...

I talked to our pediatrician and she didn't see any point in doing the EEG any sooner b/c she says we can't change Laurel's medication anyway until she is off the phenobarbital completely (not for another month!). I told her I couldn't watch Laurel suffer like this for another month but she said that the only thing that we could do would be to give her the Valium when we see a series of spasms (she said it can actually be used to stop seizures quickly [2-5 min] once they've started, although that wasn't what the neuro sounded like he was thinking of using it for). I think I did (unlike the neuro) convince her that they are probably seizures, but I had a harder time convincing her that Laurel is in real pain or that if she was, it would have anything to do with this being seizure activity. I told her that I would tape them and bring a tape by Thursday (we don't have a camcorder, I have to borrow one and can't get one until tomorrow). Maybe that will convince her that we need to do something. We are also now supposed to take her for testing for blood levels of her anti-seizure meds tomorrow. Right now I don't have either the pediatrician or Bob behind me on the second opinion front (for the moment anyway, Bob might be in favor of it next month after his business trip is over) so I am feeling pretty much up a creek. I actually stayed home sick today but have spent the whole day arguing and being around for the cable guy (the only good news here - we have a cable modem now! YEAH!) instead of napping like I'd hoped.

Whimper...think I will cruise on over to the Infantile Spasms group and see if they can give me any more ammunition...

I am so nervous! We're driving up to Pittsburgh tonight/tomorrow (a 5 1/2 hour drive if you drive straight through). We've never taken Laurel this far before, and I don't know how she's going to tolerate being in her carseat for so long, or how we're going to get through the feedings we'll have to do on the way without her baptizing our car (I'm actually even more nervous about the drive back, which we'll do in one day [Sunday]). But her grandma (my mom) really wants us to visit...and I am really looking forward to seeing an old friend that I haven't seen since last August. Please send some no-barf vibes! Thanks!

The hardest thing about the trip wasn't actually Laurel (who only had two minor spit-ups in the car, although she threw up plenty at my mom's - I think the key in the car was that we fed her V-E-R-Y S-L-O-W-L-Y (this would drive us nuts at home, but in the car one of us just basically stayed in the backseat and fed her). The hardest thing was that, even after a year and a half, my father's death kind of hit me in the face again. First off, I've been fighting with the monument company over his headstone since September 1999 (they had initially told me a custom design would be fine, but then it was h*!! getting it done) and they just called me a few weeks ago and said it was finally done, so we stopped by the cemetery to have a look (Mom won't go, so we wanted to do it before we got to her house). They did a lovely job after all, I'm glad I kept up the fight - but then Bob asked me if I had introduced Laurel to her grandfather, so I did and totally lost it. Then, instead of sleeping in a finished room in the basement as we have for years, b/c there was no room for the Pack-N-Play in there we slept in Dad's room (my parents slept in separate rooms after I left for VA - not worth going into). I hadn't gone in there much since he died and hadn't realized that Mom hadn't done ANYTHING with it since he died. It was all just like someone was coming back any minute, in 1999. There was a coupon book for Sears home improvements (expired Dec. 1999) on the nightstand, a Penney's fall/winter 1999 catalog on the floor, a pack of fiber wafers that expired last year on the dresser...and on and on. I just cried myself to sleep the first night...

Anyway, aside from that, the weekend went OK. Laurel was doing so well in the car and the weather was so beautiful on Friday we decided to take the scenic route (Rt. 30, for those of you familiar with PA). We didn't get to see my friend for very long on Saturday, but we did manage to get in a couple of hours at the zoo (which Laurel slept through completely!). We had several lovely meals out, and as predicted, Grandma gave Laurel way too many clothes! The drive home Sunday was very hard, though, b/c the weather stank, and between that and an accident on the Turnpike it took almost *9 hours* (instead of the usual 5.5) to get home! Amazingly, Laurel slept Sunday night but she was cranky wired baby yesterday - was up for SEVEN HOURS (she can't usually last past 5) and then wanted to go to sleep but couldn't wind down enough.

Now, I have some good news that I'm scared to put into print, but here goes - we haven't seen any of those new type of spasms since last Tuesday! I had talked to her pediatrician and told her I would tape them for her, borrowed a video camera on Wednesday and sat down to wait for her to do some - and we're still waiting! I've told Laurel that if this is what it takes, I'll BUY a video camera! She is still doing the original kind of spasm but it seems like often now we are seeing them as a sort of startle reaction. She has been getting increasingly "startleable" as she's been coming down off the phenobarb, and much more alert (although her attentiveness is still pretty spotty). And she seems to be continuing to regain some of her old abilities; tonight she held a rattle for several minutes. I guess this puts her back to where she was at about 3 months, but she had regressed way past that so we are happy to see her doing these things again! We still have another 2 weeks before she's off the phenobarb, so we'll see where she is then and decide what to do about the second opinion, assuming she doesn't develop any other new nasty spasms before then, knock on wood. (We're wondering if the ones we saw were signs of withdrawal from phenobarb - I have heard it can *cause* seizures if withdrawn too fast, although I really thought we were taking it pretty slow.)

All right, enough of my ramblings, I need to clean for my in-laws who are coming tomorrow!

Laurel's physical therapist said she seemed like a whole different baby today! And she kept trying to look out the window - even when she was moved around she kept turning her head back to it. Laurel has never shown that much interest in looking at ANYTHING! The only thing is, she has been so jumpy lately it's driving us crazy. Even clearing your throat is enough to make her startle and cry! But hopefully she'll get used to the world without phenobarbital (in less than 2 weeks she'll be off it completely!). We are so excited to see her so alert!

Laurel has figured out how to suck on her tongue! Now if we could just get her to do that with a nipple...

Ugh...Bob is out of town and this is going to be such a long week...

If you get from this that Bob does a HUGE amount to make life with Laurel copeable, you're right...I don't know how I would do this without him. I didn't answer that "10 things you're grateful for" question, but one thing I AM grateful for is that I don't have a husband who has left it all up to me! But I sure wish he was here now!

I got in a big fight with Bob tonight.

Basically, we are starting to have a difference of opinion on whether Laurel should have an operation (called a Nissen fundiplication) that would (my understanding, anyway) kind of wrap part of her stomach around her esophagus and prevent her from throwing up. I really feel that we should wait and be sure she's not going to grow out of throwing up (many babies do, once they are old enough to sit up well, and also to eat solids, which tend to stay down better - she is not doing either right now) and he feels that he has had it with being thrown up on, it's time for the operation. I got mad at him - I just do NOT want to subject her to surgery unless I'm certain it's necessary, and yes I'm incredibly tired of being thrown up on too but I'm not going to have her operated on just for my own convenience - and hung up on him. That was about an hour and a half ago. I hate to go to bed mad, but I'm still too angry to call him back. :(

I couldn't get hold of Bob by phone, but I e-mailed him and just got some e-mail back. Think we're OK for now.

Ugh, I am so tired...Laurel woke up at 4 AM, I've been up ever since but I STILL didn't make it to work until 11 AM! She was up and cranky from 4-7, during which I fed her since she was obviously hungry (we've been trying to eliminate the 4 AM feeding but she wasn't buying into that idea last night), then I had to feed her again at 8! Have I mentioned that it takes 1 - 1.5 hours to feed her? (And that we have been feeding her every 2 hours during the day to try to minimize her barfing? Which worked at first but isn't doing so much now, so we may go back to every 4 hours in an attempt to reclaim our lives...) I felt like I had worked a full day before I ever walked in the office door. I just finished a 12-ounce cup of coffee and I still feel like a zombie...I've only accomplished three really miniscule things all day today. If only I could get some sleep tonight...but I'll have to deal with Laurel's laundry first...

OK, that should about do it for today's whine...in about 49 hours and 40 minutes (but who's counting?) Bob will be home and she is SO his...

So, Laurel's neurologist appointment...(sigh, other people just have pediatricians...)

All in all, I guess it wasn't very informative, but he did seem to agree that 1) she has made progress 2) we still need to work on her seizures 3) someone needs to look at her throwing up problem further. So that's good!