Updates on Laurel: August 2001

August 2, 2001

I'm sad today because my aunt died. When I got home last night, there was a message on our answering machine. I ended up talking to my cousin for about an hour and a half, then called my mom and sister. She's actually my half-sister, so this isn't her aunt, but I think she's planning to go to the memorial service anyway. Of course, I won't go - that's the tradeoff I made for getting to see my aunt one last time when she was still alive, and everyone in the family understands that. (Plus, the service is on Saturday, so I'd HATE to see what the plane ticket would cost on such short notice!)

Obviously, we all knew it was coming, it's not like it's a shock or anything. But I'm still sad. I have to go out and buy flowers and cards this afternoon.

Well, I haven't actually gone to work yet...so I need to do that...

We had a great weekend! I feel good because it was a nice mix of getting useful cleaning things done and having fun. We had a good time going on a date Saturday night - ate at Outback, saw "Legally Blonde" (silly, but cute) and played a round at Putt Putt. Then Sunday we went to the gym and to the mall afterwards. Only downside there was that Laurel threw up at the mall! I'm still trying to get the smell out of her stroller - turns out it's not completely disassembleable (that's probably not a word...). Saturday afternoon and last night we worked on cleaning. We just did things that were driving us particularly crazy (like all the maternity clothes in my closet). 

Anyway, overall I'm really happy about it!

We are both wiped out this morning b/c Laurel was up with acid reflux. We can't win - there's a med we can give her, but it makes her throw up more (we've been giving it to her for the last week or so, which is probably why she threw up at the mall). The throwing up has been gradually getting worse, so we stopped the drug, and instead had wheezy sleepless baby...sigh...we're going to try to go to the gym tonight anyway, though.

Laurel's 9 months old today and she is SO miserable! She has a nasty head cold and spent the night propped up on her Boppy pillow (when she wasn't being held) with the vaporizer running. We'll call the doc today to find out if we're allowed to give her anything for it besides Tylenol. Not a good monthday at all!

We're ALL sick now!

We took Laurel to the doc yesterday, b/c I was worried about her breathing. The doc said that she thought Laurel's breathing was OK, but b/c she has a slight rash on her chest and arms, she thinks she has hand, foot and mouth disease (she doesn't have any rash on her hands and feet, though). I have to say, it mostly just seems like a bad cold to me. But Bob and I were just getting sore throats then - now we're all three good and sick! We have to drive 1 1/2 hours each way for Laurel's second opinion (neurologist) tomorrow too, we are SO not psyched about doing that the way we feel, but of course we've waited months for this appt so we're going. Please send a few "get-well" vibes our way! Hopefully we'll at least all be well for the Beltway Babies gathering next Saturday!

Our neurologist visit...

- This doc thinks that there is no question that Laurel HAS had infantile spasms.

- He thinks her seizures are under control at this time - the movements she does when she's startled he thinks (in agreement with her usual neuro) are just exaggerated and asymmetric startle responses, not uncommon in babies with brain damage

- Although the med she's on now wouldn't have been his first choice, given that she is not seizing (or maybe seizing rarely, but he doesn't feel that it's often enough to be concerned about), that her platelet counts have stabilized, and that she's had no other problems in the 4 1/2 months she's been on it (there is a 1:400 chance of fatal liver damage with this drug for babies under the age of 2, which is why he wouldn't have used it, but since she has been on it this long with no problems he thinks her chances of having problems at this point are much lower), he thinks she should probably stay on it, and that the dosage she's at is probably a good one.

- The drug she was almost given, ACTH, has a 1:20 or 1:30 chance of being fatal. HOLY CRAP! Nobody told us that! We sure wouldn't have been so eager to try it if they had.

- He went over her MRI with us (a lot more than anybody else had). She has pretty global damage on the right side of her brain, but only a couple of damaged areas on the left. In those areas that were *not* damaged on the left, there's a good chance the left side of her brain can take over, but the prognosis is much worse for those areas that were damaged on both sides. Unfortunately, that includes the part where visual images are processed and, even worse, the frontal lobe, which is where things like problem solving and the ability to pay attention are located.

- He did tell us, in agreement with what one resident at the NICU told us (but we hadn't heard anywhere else), that it's likely that her injury actually occurred during the last few days of my pregnancy, rather than during labor itself. So I guess, at least, I should stop beating myself up for choosing a midwife instead of a doctor (although I still think that if we have another, I'm going for monitoring up the wazoo).

- I asked the big, scary question that's always in the back of our minds, knowing that he might not be able to answer but needing to know anyway: Will she eventually be able to live an independent life? And he said that he didn't feel he knew enough about her to make that call, and that he really felt it shouldn't be made until the child is 2 anyway, but that it's clear from her previous doctors' reports that they feel that her ability to live independently is very much "in peril." And now, I'm having a hard time even finishing typing this because I'm crying so hard. But, just glancing at the doctor's reports quickly while we were waiting for him (Bob picked them up a few days ago, but I really hadn't had time to look at them), there were lots of horrible words that the docs haven't had the guts to say to our faces: mental retardation, cerebral palsy, extreme microcephaly, lethargy...and in my heart I know they're right...and I can hardly stand it...I can't stop crying now.......................

Thank you all so much for the wonderful supportive messages Tuesday and yesterday...here's an update on me...

Anyway, so that's how I'm dealing with my depression...on the wellness front, I think Bob's doing pretty well, Laurel's still sounding a bit gunky, and me, well, I have had a horrible cough for several days now. I just got back a little while ago from the doctor, and she said I have bronchitis and maybe even a touch of pneumonia. So of course, I have antibiotics to take now. She said I should be over being contagious by the Beltway Babies meeting on Saturday. I'm a bit worried about Laurel though. We have a call in to her pediatrician to discuss whether we should do anything further for her.

Oh, and I just remembered - somebody asked how they know whether Laurel's accident happened before or during birth. Well, we'll never be 100% sure. The reason the docs think it was likely before birth, though, is that the vast majority of babies who sustain brain injury due to asphyxia also suffer from kidney damage. The kidney damage usually fixes itself within 3-4 days, but if Laurel's damage occurred during birth, she should have had kidney damage her first few days in the NICU. And she did not. So the docs therefore think it must have happened long enough before she was born that they had a chance to heal. There's also something about the way the blood was in her brain, I believe, that makes them think it was a somewhat older injury.

Anyway, thank you again for all of your wonderful posts! They really help. Somehow, with some combination of prayers and therapy and love, maybe Laurel will fool those docs yet...

We went to the Beltway Babies get-together on Saturday. I had a good time talking to the other mommies. The other babies were darling, but it is always kind of hard to see how far ahead other babies are compared to Laurel. Afterwards, we stopped for some shopping at the huge "R'Us" store (Babies/Toys/Kids'R'Us all in one) that's up that way.

I keep scratching my head when I try to figure out where yesterday went. We were hoping to get up and go to church and welcome our new minister (and offload all the fudge that was left over from the Beltway Babies meeting, hee hee), but we were both too sleep deprived for that. We didn't even make it swimming, which was our next goal. We did go out to dinner at a new Chinese buffet (it was HUGE!) and otherwise, I guess I just spent a lot of time with Laurel. I've been reading this book called "What to Do About Your Brain-Injured Child" that has made me realize that brain-injured babies really can get better, but they need a *lot* of stimulation - so I've been trying to avoid spending too much time sitting at the computer holding her (she's napping right now). The physical therapist dropped off several toys from the early intervention program that are supposed to help her learn about cause-and-effect even though she's visually impaired, so we played with those a lot. She seems to like this one that vibrates when she pushes on it. Today one of my goals is to call her early-intervention program case manager, because the PT told Bob that they've hired a new educational therapist. The PT also told Bob that she knew a family who tried both of the programs I mentioned last week but has gone with yet a third one, and I think she's supposed to get us that family's phone number so we can talk to them.

Anyway, I should go, this turned into a book and it's time to feed Laurel!

Well, Laurel's "official" stats are a bit lower than the other docs have gotten - 16 lbs 13 oz and 28.5".

Laurel is *still* having some cold symptoms, which the ped said was still OK but to call her if that was still the case on Monday. Laurel did sleep better last night than she has for a while, and seemed to be breathing better today, so hopefully the ped won't hear from us.

Otherwise, the ped said she looked good, and commented again that Laurel seems more alert every time she sees her!

Yesterday was pretty much just a day...after the ped's, I went to work, met Bob and Laurel at the gym (discovered that my bronchitis was still worse than I thought it was so didn't end up doing that much), came home, fed Laurel, ate, watched a little TV, straightened the living room, and went to bed (Bob did the late feeding last night - he's been doing it a couple of times a week lately and I've been feeling SO much better with the additional sleep. I'm getting worried about him now, though). A pretty normal day around here...today will be different, though, I'm taking a class in Web Page Design II (Javascripts, Flash, cascading style sheets, etc.) from the local community college over the Internet and it has one in-person meeting, which is tonight. I'm kind of nervous about the commitment for ONE class - people who are going full-time amaze me! But this will help me at work (which is paying for it), because I do our website and it REALLY needs to be updated. And I'm looking forward to the opportunity to learn something new.

This weekend, we don't have any solid plans yet, but might go to visit our friends who adopted a Chinese girl. We got her a little something when we went to the "R Us" store last weekend. :-)

Has anyone else had it happen that their baby started throwing up food that they had been fine with? We've been feeding Laurel sweet potatoes for months now, but lately, every time we feed them to her, they come back up!