Updates on Laurel: February 2001

We still don't know the long-term prognosis - all the doctors and therapists who have seen her continue to tell us "anything from functionally normal to severely impaired" - cognitively or physically or both. From our own observations, we are starting to be less worried about severe cognitive impairment - she is showing some good signs of an ability to learn, interact and even solve little problems - but still pretty worried about physical impairment. She is an incredibly stiff baby, and we are worried about how well she will do things like sit up and walk. She does have good use of her arms, though (she bats at and grabs for toys, and us). And it's still too early to tell...also, frustratingly we are still having to feed her by tube. She CAN suck and swallow, but doesn't seem to really be getting the hang of why she ought to (hey, her stomach fills magically anyway!). If nothing else, we're hoping that when we can move on to things that taste better than soy formula, that that might get her interest.

Meanwhile, Bob and I are gradually getting adjusted to "long-haul" mode instead of "immediate crisis" mode, and trying to put some of the pieces of our old lives back together (as much as we can around an every-4-hour-around-the-clock-for-about-an-hour-and-a-half feeding schedule, dictated by the tube feeding). And enjoy her without a worried-sick feeling in the pits of our stomachs - she's very cute (if I do say so myself) and showing more signs all the time that she knows and cares that we're here.

Our Laurel is a beanpole! 24.5" long but only about 11.5 lbs. She grew 2 inches in 3 weeks!!!

Laurel cried a tear last night! :( I thought this wasn't supposed to happen yet? (She's 13.5 wks)

Laurel rolled over from her tummy to her back this morning! Laurel hates being on her tummy and has struggled to do this since she was born! (Even drugged and mostly unconscious in the hospital, she would try to turn over when placed on her tummy.) I won't be surprised if we NEVER see her turn the other way, though! Maybe when she starts to crawl...

Laurel's head control is steadily improving, too. When we first brought her home, she always arched her neck backwards, but she is getting much better about holding it upright. She seems to like being sat up and will sometimes stay there for a couple of seconds after we take our hands away, so I'm more hopeful about her ultimate ability to sit than I was when she first came home.

She seems to have good days and bad days as far as attentiveness, though - some days she seems interested in us, toys, etc. and some days she just seems to be in outer space. Actually, she had been doing pretty well as far as batting at and starting to grab toys, but the last week she hasn't had much to do with them. We wish we knew what it all meant...she is overall doing better with interacting with us than she was, though. Although still not smiling much yet, and the only time she has laughed so far is once in her sleep.

NO progress on getting her to eat by mouth yet. That's another thing that some days she seems like she's doing really well with and other days she won't even let us put anything in her mouth.

She's been sleeping through the night for the last week - the frustrating thing is, I can't yet! The doctor says it isn't OK yet for her to go through the night without eating. (So I have to get up and tube-feed her even though she's sound asleep. ARRGGGHHH.) It depends on which doctor you listen to as to how long I will have to keep this up for (one says another month, one says till she's 9 months old!). I'm not really clear on why this is necessary - the one that said till 9 months mumbled something about hypoglycemia, but I can't imagine why that would be a problem.

We just recently upped her phenobarbital level - she had been having some occasional spasms that we were worried might be seizures (although she has some odd twitches and jerks anyway - still think she may end up with a cerebral palsy diagnosis), and it turned out that her blood level of phenobarb had dropped below the level where it would be doing anything. We don't feel too bad about this, though - we had been told when she was discharged that she would probably be on phenobarb for 6 months to a year, and we figure if we couldn't tell for sure whether she was having seizures without a therapeutic level of phenobarb, that's a big improvement on where she was 3 months ago when it took 3 kinds of drugs to keep her from seizing constantly!

So that's where we are right now. It's still really hard and frustrating, because one day she'll seem really great - responsive, attentive, good control over her hands, neck, etc. - and the next day she's stiff and unresponsive, just staring off. Actually, we usually have several of each of these days in a row, so the good periods last long enough that we start really thinking she's going to be OK, and the bad periods last long enough that we start to despair. And just as we really get into either mindset, she goes the other way. But today, anyway, she hit a milestone just about the time she was supposed to. That's not something we were led to expect she'd do, and that's something.

Laurel's in a "good period" right now with respect to her attentiveness - batting at toys (still mostly doesn't get the point of grabbing them, although she likes to grab fingers, hair, collars, etc., and she will grab one of her hands with the other one) and looking at us a lot. Last night she had spit up, and some had gotten on the pillow I was using to help support her head. I was waiting to make sure she was done before changing her clothes, and kept moving her head away from the spit-up and she kept moving it back. About the third round of this I got kind of frustrated and snapped "Sweetheart!" at her, and she turned her head right to me and gave me this LOOK! I felt bad that I'd snapped at her to get it, but at the same time, it was so great to see the little person in there...

Laurel had an EEG this morning to make sure that some of the odd spasms that she has been having aren't seizures. The EEG went perfectly - we'd been worried that she wouldn't do them while hooked up (she does them rather irregularly and only when awake) but she couldn't have "performed" better if we'd trained her. Bob was watching the monitor during the EEG and said that the trace didn't look like it had back when she was in the hospital (he had watched them do an EEG when she was still having lots of seizures), but we won't know for sure till the doctors get back to us (hopefully next week). I'll be sure to let everyone know what they say!

Boy, did we have a great outing with Laurel yesterday! We took her to the Maymont Flower Show in Richmond (an hour and a half from here). We fed her when we got there(and yeah, some lady was giving us weird looks [because of the tube feeding] but that's her problem). She woke up at the end of the feeding and Bob put her in her Snugli. She stayed awake and calmly looking around the whole 2 hours we were there! We got so many compliments on our beautiful baby. Because she was awake there and for her 8 PM feeding, she didn't keep us up half the night like she did the last time we tried to take her somewhere, either (which she had slept through).

It was such a great day, I just had to share.

Just got a call from our pediatrician...the EEG last Friday showed that Laurel is still having seizures, which are not centered in any particular place in her brain, meaning that her brain is still injured/scarred in multiple places. The doctor described her brain activity as "disorganized." I have to stay at work for another 45 minutes but I'm just sitting here at my desk crying...I had really thought/hoped she was getting better but the doctor said that her EEG did not look significantly better than when she was in the hospital.

Ugh...we just spent 2.5 hours at the pediatrician's office...She did not have as much additional information about Laurel's seizures as she and we had hoped she would - she is still awaiting the written report and a copy of the EEG trace. However, she spoke to us about the possibility that Laurel is developing a very difficult-to-control type of epilepsy called infantile spasms. The good news, though, is that of the seizures seen on the EEG on Friday, only one was associated with any physical movement. So I'm hoping that means this isn't Laurel's problem...meanwhile, the doctor tried to take blood because 1) they need to get another phenobarbital (seizure medication) level on her, because they want to increase the dose but need to know how much is in her blood now and 2) they've apparently thought of a few more tests to run to find the cause of her seizures (? I thought they had run all of the tests there were, and I thought they had settled on loss of oxygen to her brain as the cause). Anyway, she tried THREE times to get Laurel's blood, digging around for a couple of minutes each time - and didn't get it! We have to bring her back Thursday morning! Meanwhile, poor Laurel was COMPLETELY hysterical. And I don't blame her - I've had nurses do that to me looking for my veins, and I felt like I was going to pass out. It was just horrible and I can't believe we're going to have to go through that again...also, the doctor decided to give her three vaccinations today, which completely surprised me because I thought it was a bit too soon, and because I talked to her yesterday and she didn't mention it. All in all, Laurel ended up staying up an hour longer than she's EVER stayed up, until we could finally put our exhausted and sore baby back in her carrier, where she zonked out instantly.

In other news, Laurel has been throwing up a lot lately, so the doctor gave us a prescription for some Zantac. And she weighed 12 lbs., 5 oz. and measured 23.75". We were disappointed to see that, although her head has grown, it is falling steadily behind...it started at the 25th percentile and is now off the bottom of the chart. So her little brain is not growing proportionately. But it seems to Bob and me that most of the growth of the last couple of months has been in the last 3 weeks (she has an overlap of her skull bones because her brain isn't big enough to push them apart yet, and it's gotten noticeably better in the last 3 weeks), so maybe it was just healing or filling in the space left by the dead brain cells :( or something. I hope.

So that's the news. Bleah...I think *I'd* like to crawl into a baby carrier and fall asleep...

Our pediatrician gave us some information on infantile spasms, a form of epilepsy that she is concerned Laurel may be developing...here is what it says...

"Fifty percent of children become free of spasms by 2 years of age, and spasms rarely persist beyond the age of 5 years. Unfortunately, cessation of spasms is accompanied by severe retardation and recurring seizures in about two-thirds of surviving children. Mortality has been reported to be as high as 15% to 20%. Only about 5% to 10% of children with infantile spasms will have normal or near-normal intelligence, and over two-thirds have severe disabilities. Eighty percent of children have epilepsy in later life."

I feel like I'm going to throw up. Please pray for her...

I tried to call the pediatrician this morning, feeling that I just couldn't wait, but turns out today is her day off. Then I tried to call the neurologist and was told if I was lucky he *might* find the time to call me tomorrow before he leaves town. Meanwhile I am going out of my mind. We hardly got any sleep last night. I cried so loud and hard in the shower this morning that Bob (who was feeding her) said Laurel got very quiet and looked toward the bathroom. The thing is, that all the positive signs we have seen will mean nothing if this is what she has because this will just fry what's left of her little brain. Bob found some web pages made by parents of children who had infantile spasms. They can't talk and can barely walk. The prognosis is particularly grim if the children have already had brain damage.

Up to this point we had been collecting stories of people who had also suffered a loss of oxygen to the brain. We have friends with a daughter who had this (we had never known this was her problem until after we talked about Laurel with them) and she has learning disabilities and some coordination difficulties but she is nevertheless taking AP Chemistry and planning to go to college. Bob's parents go to church with someone it happened to and they say when you talk to her it's clear she's not 100%, but she has a job as a nurse's aide and is active in their church and seems happy with her life. We were still really holding onto hope that even if Laurel might never be "normal", that she could have a job and a life and be happy. Now we have been presented with the possibility that she might never even TALK.

I came to work today anyway because I was hoping I could think about something else for a while, but so far, it's not happening. When I came in, a co-worker asked me how I was and I burst into tears. But if I go home, Bob is threatening to kill himself so that's not going to be a real upper either (and there's nothing I can say to help, and he won't talk to anyone else about it...I think he *probably* won't, he has threatened this before and nothing has happened, but in the meantime it's pretty hard to deal with). I just don't know what to do.

Thanks for listening...I really appreciate your support and prayers...