Updates on Laurel: May 2001

Laurel had her not-quite-six-month checkup this morning - 14 lbs 12 oz, 25.5" (but was 26.5" last week at the neurologist's - I think they do a better job of stretching her there!). Unfortunately, her head circumference, contrary to what they said at the hospital, is NOT back up to the 5th percentile, but it does continue to grow (it's 38.5 cm right now). She had 4 shots which she did NOT handle like a trouper (but she puts up with so much, I think we can cut her some slack :-) ). The doc is pushing the fundiplication operation for her throwing up again, but we will get a second opinion from a gastroenterologist first (we have one scheduled for the beginning of next month). I would like to give her at least a couple more months to grow out of it before we give up, anyway. And I asked the doc what she thought of how Laurel is doing, and she said, "Better than I expected." She said she never expected that Laurel would be able to sit up, and now it looks like there's a good chance she will (although I'm sure she'll do it well after the rest of the babies on this board - she is far behind on muscle control, but when you consider that when we brought her home, she spent most of the time she was awake arched backward and it was almost impossible to get her into a sitting position, it's amazing how far she's come - she now LIKES to be sitting and can control her head fairly well). I think it's a darn good thing the doc didn't tell me what she thought early on though...

Bad news about Fuzz, (mostly) good news about Laurel...

First the bad news...it looks to me like Fuzz (our kitty who had mammary lymphoma, for those who missed this) definitely has more lumps already. I first noticed them a couple of weeks ago, but then they were right along her incision and the vet said she thought they might just be scar tissue. But now it's clear they're moving out from the incision...wah...

Now the (mostly) good news...Laurel HAD gotten to throwing up so badly at the beginning of this week, a "good" feeding went from one where she didn't throw up to one where she threw up less than 3 times. Formula was coming up as fast as it was going down, and Bob and I were panicked and fighting over whether she needed surgery. Well, Wednesday, in desperation, I dragged out the half can of Neocate sample we had left. (Neocate is a very expensive, amino-acid based formula. The first time we tried it, she didn't do any better on it than she did on Carnation Good Start, but that was back when she was *only* throwing up a couple of times a day.) It cut her back to throwing up 2-3 times a day. Then I got even bolder and dragged out the Tagamet that we had been prescribed, but the neurologists told us not to use, not b/c it conflicts with anything she's now taking, but b/c they didn't want to have to worry about it if they decided to change her meds (I figure we'll cross that bridge when we come to it). And *that* cut her back to just *spitting* up last night instead of *throwing* up (although she did throw up this morning - the morning feeding often seems to be her worst one). So, it's looking like maybe we *will* be able to live for a while without her having surgery - although she's already been scheduled for an upper GI on Tuesday, and we'll go ahead and go through with that since it looks like formula intolerance is not her only problem. The bad news part of this, though, is that at the rate Laurel uses formula we are looking at $400 a month in formula! Owww! (And of course it'll only get worse as she gets bigger, until and unless we get her switched to solids.) We may have to ask for help from family...but like I said to Bob, we've got to do what we've got to do...if regular formula is making her sick, having surgery may stop her from throwing up but it won't stop her from feeling miserable.

At any rate, we are breathing a sigh of relief that she no longer seems in imminent danger of starvation...

SHE SMILED AT ME!!! LAUREL SMILED AT ME!!!

OK, so we are so far behind everyone else...but moving forward... :-) :-) :-)

Laurel is back to throwing up at pretty much every feeding, and Bob and I are back to fighting...sigh...

Laurel sat all by herself, just for a second today! I had sat her up to burp her, then I realized that her muscles were pretty much holding her up, so I stopped supporting her and let her sit on her own. She sat for a long second, then she spasmed and fell over. She often spasms/seizes? (the ped says seizures never come as a result of stimuli, but these look just like seizures to us) when she's startled - Bob thinks she was so surprised that she was sitting up by herself, that that's what caused the spasm! Anyway, I KNOW sitting up must be coming...

She has been doing better again on throwing up - the only major urpage we had (there were several spit-ups) was the one feeding Bob has taken since I posted yesterday (I could tell he needed a big break from being urped on...). I think she may be throwing up less for me because I feed her slower - which isn't because I'm so much more fabulously sensitive or anything :-) but because I tend to space out during feedings and, depending on whether we are doing it manually or using the pump, either forget to push the syringe every 2 minutes or forget to turn the pump back on if I've turned it off because she was looking sick.

To answer the questions about the breast milk, unfortunately there did not turn out to be as much as we'd hoped. :-( We're getting a Ziploc bag-full a week (the Ziploc bag in turn has little bags in it), which is about enough for 1/2 to 1 feeding a day. We're giving it to her, b/c I think ANY breast milk is better than none, and I think she might actually be somewhat less likely to throw up the feedings with the breast milk in them, but there hasn't even been enough to do a really good test (like, a whole day's worth - I kinda hate to burn through the breast milk that fast too, I think it might do more good spread out. If it DID work, it's not like I know where I can get a bunch more). I think we were told there were eight Ziploc bags in all, and we've used two of them so far.

Time to feed her again...

Folks, I am going to lose it soon...this morning our meeting facilitator asked us to talk about how things were going in our lives as a warm-up exercise and I burst into tears...spilled the whole sordid thing, how exhausted I am and how it seems like one of us is nearly always feeding her and we're always fighting and I'm so far behind at work that I'm scared to even face it any more...ended up by confessing that I'd really rather be at Laurel's upper GI but I didn't feel like I could blow off yet another meeting. At which point the facilitator told me that I should be where I needed to be and I left for the hospital. The upper GI was HORRIBLE - they strapped Laurel in with her arms above her head, and the thing is, with Laurel's high muscle tone it is almost impossible to even get her arms in that position and it is clearly very painful for her. Then they rotated the table so she was hanging upside down! I felt like I was watching some medieval torture, and she just screamed and screamed and screamed. We were ALL exhausted afterwards...I'm glad I was there so she could death-grip my finger during the test and so I could hold her afterwards...we don't know anything yet, won't know until they send the results to our ped.

I really feel like I'm going to snap soon, though...I feel absolutely brittle. I wish Laurel's grandparents (Bob's parents) lived anywhere near us, this sounds horrible but I am wishing that we could leave her for a weekend and recoup. Bob and I have barely seen each other in 6 months and I don't think that's doing us any good, either. We still haven't even exchanged gifts from our anniversary, which was over a month ago! My mom is somewhat closer (in a relative sense, still 6 hours away) but she seems terrified that she's going to break the baby - I've never even managed to talk her into doing a feeding. Anyway, hell, if I'm going to wish for things I can't have I might as well wish for a healthy baby...

I need to get a grip, I'm sitting here crying at my desk again...

We just found out the results of Laurel's upper GI. There was NO EVIDENCE of reflux!! Which has astonished everyone, even me (I've been convinced that at least part of her problem was formula intolerance, but I thought it was part reflux too). Once again Laurel confuses the doctors...this does mean that there is NO indication that performing surgery on Laurel would be a worthwhile thing to do. I win. :-)

Meanwhile, she has really been doing much better on Neocate (even for Bob, now). She is still spitting up multiple times a day, but we haven't had a projectile vomit in days (and we were having 4-5 a day) and she is definitely keeping down a lot more than she spits up. Her ped says in light of that and the results of the upper GI, she will write a letter to the insurance company stating that Laurel needs to be on Neocate. We just have to find out if our insurance company will accept that - Bob has taken this on as his task for the day.

On other fronts (I don't think I've given a full Laurel update for a while, and now seems like a good time, on the eve of her 6-month birthday)...I'm sorry to report that we don't seem to be making any further progress against her seizures. In fact, I saw a cluster (a group of seizures where she seizes every few seconds) Sunday night and another one this morning, and we hadn't seen any clusters for weeks, so I'm afraid we may actually be slipping backward. She *is* having fewer spasms overall, but the most severe ones where her left arm hooks in are the ones we were told are seizures and she has been having about the same number of those every day for a while now (and even more when she has a cluster). She had blood taken :-( this morning (this babe has had more blood taken in her little life than I have in all of mine, and that's counting all the blood I had taken during pregnancy b/c of low progesterone and iron levels) to check her anti-seizure medication levels. We're to call the neurologist and compare information (seizure counts vs. blood levels) tomorrow. I am really getting afraid we're going to have to try something else, though.

Her session with her feeding therapist went well today! She was actually opening her mouth in anticipation of the pacifier some of the time, and even made rooting motions a couple of times. The biggest problem we are having is that she seems to have a huge aversion to having her upper lip touched - if it weren't for that I'd think we were really close to getting her to start taking a bottle, but we have trouble getting her to close her mouth because of that upper lip thingie.

She still isn't playing much with toys - not even as much as she did when she was three months old, before the seizures started - and we're worried about that. She is looking directly at things more all the time, though - I actually got some pictures of her looking right at the camera last night, which is not something we have a lot of. We have wondered if she has cortical vision impairment (vision impairment due to the brain injury), which often results in loss of vision in the middle but OK peripheral vision, and that's why she never seems to look right at anything. CVI can get better as the brain rewires itself, though, so maybe we are seeing her look at things more because her vision is getting better. I hope!

And she smiled again last night, this time for Bob. :-)

So, it's mostly good news...the biggest bad news is the seizures. Boy, someday I'd like to post with *nothing* but good news - seems like it's always something!

NEWSFLASH - Laurel likes white grape juice!

The feeding therapist left us a pacifier with a little reservoir in it, and she had suggested using diluted juice instead of formula (as we've done in the past with her feeding therapy), b/c by now Laurel may associate the taste of formula with throwing up. :-( Bob (who's home with her today) did this at the last feeding. He had trouble getting her to take it at first (in fact, at one point she put both her hands on his and SHOVED! Which actually makes us feel good b/c we've been worried about how little she uses her hands). But once she got the taste she loved it! She wouldn't close her mouth around it and suck for very long at one time, but she did it enough times that she sucked the reservoir dry! YAY!!!!!!

And you know, I've heard that you shouldn't give babies juice before they're a year old b/c they'll become juiceaholics, but I DON'T CARE! I just want her to take something, ANYTHING, by mouth! I never thought I'd be so thrilled that she would take a pacifier either, I was actually kind of against them when I was PG... :-)

I am so excited! :-) :-) :-) :-)

Laurel is NOT having a happy half-birthday! She hadn't really pooped since her upper GI Tuesday morning. Last night we put some Karo in her formula and I tried taking a rectal temperature (BTW - that mysterious low-grade fever she was running seems to have gone away! Forgot to mention that in that lengthy update I posted yesterday). She was straining but didn't seem TOO miserable this morning, so we gave her some more Karo and took her to the sitters figuring it would blast its way out sooner or later. Well, the sitter called me about 2:30 and I could hear that Laurel was absolutely hysterical. The sitter said that Laurel had been that way for half an hour and that she thought it was because Laurel was constipated, so I called the pediatrician's office and they told me to get glycerine suppositories. (They also told me that babies are frequently constipated after upper GIs, thanks for the warning folks!) I did that and went out to the babysitter's...we had some success, but I think we'll have to have some more before Laurel is a happy camper again. Poor baby! What a way to spend her half-birthday!

Laurel is still VERY enthusiastic about diluted white grape juice! She has sucked down several pacifiers-full now, and the feeding therapist thinks we can try a bottle soon. She's also eaten several spoonfuls of rice cereal mixed with diluted grape juice. We started a little with that at Monday's session, and it went even better today. :-) She still has an aversion to having her upper lip touched, but she loves the grape juice so much that she is starting to close her lip down anyway as she is learning that she can get more that way. :-)

But the bad news is, Laurel is having more clusters of seizures. She is also having more of these episodes where her eyelids flutter and her eyes move up and down. Yesterday she saw the doc at the Children's Rehab Center who is following her, and had one of those episodes and he said it looked like seizure activity to him. :-( I have been trying to reach her neurologist since last Friday with no luck. (Not only that but - and this really pissed me off - we took her for blood work last Thursday, and the doc's office called Monday and said they didn't get enough blood and we had to bring her back! Which we did on Tuesday, but isn't it those people's jobs to know how much blood they need and take enough THE FIRST TIME? ARRRGGGHHHH! Pointless baby torture!)

And as far as Bob and I...we're doing OK. I think we really need some time together. Which we will get at least some of Memorial Day weekend...I haven't quite gotten my wish for a full weekend off, but one of Bob's friends (they play in a string quartet together) just happens to be a pediatric occupational therapist who was Laurel's feeding therapist in the NICU. She has babysat Laurel I think 3 times now and has said she will take Laurel Memorial Day weekend from Saturday morning until Sunday afternoon. I wish we could get even more time - I think we may still need to work on that - but meanwhile, I'm not going to look this gift pony in the mouth. At least I know she will be in good hands, with someone she knows and who has lots of experience with special needs kids! And who can work on feeding her more grape juice. :-)

Well, Laurel is probably the last baby on this board to be sleeping in a cradle, but I do believe it's about time for that to end. This morning I found her wedged in one end of the cradle sideways! And every morning for the last several she has wound up in a different strange place. I'm happy that she's moving around so much, but I'll miss her...the cradle is in our room, her crib is not. 

Well, Laurel has slept in her crib two nights now...we did decide that it was time for her to move out of her cradle. We could have taken her Pack 'N' Play and put it in our bedroom, but it would be a bit cramped. I also think Bob was right when he said that he thinks sometimes we wake her up. So...Saturday night she was asleep when I put her down. Thought everything was fine and good, I cleaned up after the feeding, stopped in the bathroom and was just getting ready to set the monitor down on Bob's nightstand and climb into bed when I could hear her start to stir. Well, I knew the last thing I needed to do was to get her started with the idea that every time she stirred, Mommy would come get her, but I also knew I wasn't going to sleep wondering if/when she was going to start crying. So I went into our "office" (i.e. the room where the computer lives and papers go to die) and looked at the board one last time...stirring harder...so I did some work I had brought home...it took her an HOUR to finally settle! But she did. When Bob got her in the morning, though, she had rotated 180 degrees! I think this was probably what she was trying to do in the cradle when she got stuck sideways. I've seen her do this a couple of times in her Pack 'N' Play recently, too. Her new trick, I guess. :-)

Last night went better except for the wee detail that she woke up and threw up at the end of the last feeding, and then she was really wound up. It was an hour and a half before she looked like she was calming down enough to think about going to sleep. I put her to bed, sleepy but not quite asleep, and she settled after about 15 minutes.

So, I guess I should think about taking the cradle down soon... :-(

We have a babysitter from tomorrow morning until Sunday afternoon and we're going to stay in a hotel near D.C. What we do (besides sleep!!!!!) will depend on whether/how much it rains - looks like it's not going to be a very nice weekend :-( , but we're excited to get out anyway!

Bob took Laurel to the babysitter's and I miss her already! Wish I could have the baby around without the work!!

We had a good trip to D.C., too short though! And it was too bad the weather was so rotten Friday night...we ended up going to Potomac Mills and then seeing "Shrek." We bought a cheap bottle of wine (Beringer Zinfandel and it was GROSS, almost vinegar - remind me not to be THAT cheap again!) and exchanged our anniversary gifts, finally (our anniversary was March 31)! We stayed in Alexandria and walked down to the waterfront Sunday morning, and took a harbor tour. Then we stopped by the REI store in Bailey's Crossroads and used the certificates we got toward a new tent that would be big enough for us and Laurel, and even Laurel's little brother or sister should there be one. :-) (The tent we had was just big enough for two.) Then we made a REALLY quick stop by Merrianne's (mags_66) house to drop off some formula, we were running really late though because the traffic on 66 was nasty so I couldn't stop and socialize. Then home! I wish I could have stopped and been social - we know lots of people in the D.C. area, actually - but that would have been totally not the point of the trip! I was just starting to relax by the end of the trip, so I do wish it could have been longer - on the other hand, we were so glad to see Laurel we were telling her she was cute and we loved her about every 3 seconds last night! Laurel was pretty good for the babysitter, so hopefully she'll do that again for us sometime. We DID miss Laurel, but it was really nice to be just the two of us for a while too...

Laurel & Bob had a "conversation" last night! 3-4 minutes back & forth.

[Bob's addition] It was actually more like singing to each other...she makes louder sounds more often when she's on her back. Last night, as she was doing that, I got on the floor with her and started to make similar sounds back at each her. It was more like singing than a conversation (different tones and vowel-like sounds with a few "m"s thrown in at the start of some of them), but I definitely felt she was doing things in response to my doing things (in response to her...). Lots of fun!

It happened again last night! Bob had been worried that it was a fluke or coincidence, but clearly not!

And actually [this in response to a comment about music therapy], we do tons of musical stuff with Laurel! We noticed early on that singing to her relaxed her (maybe because I sang every day when I was pregnant?), and with a baby with too much muscle tone that's a very good thing! We sing to her and do fingerplays and pointing games (like "Head, Shoulders, Knees and Toes") and move her in time to music - we can often get her to move better that way than when we're trying to get her to move without it. I know lots of people are big fans of playing Mozart, and we do some of that too (we didn't go out and buy any special, we had some on hand because Bob just happens to like Mozart), but I have to admit that I enjoy the interactive stuff more, and she seems to like it better too. She loves to watch my mouth move when I sing!