Friday, July 29, 2005

Some people are just jerks

Did you see this story about the T-Ball coach bribing a kid to bean a disabled kid on the team, so he wouldn't be able to play? Oh, where to begin. Obviously this guy is a total failure as a human being to place winning a T-Ball playoff game over the safety of a child, any child. I'm ever more bothered that the league has NOT suspended him from coaching pending investigation. Only if he's CONVICTED of assault will they take away his position of influence over other kids.

What the hell? The jerk has admitted to trying the same thing on an umpire in an earlier game. Wouldn't even that be enough to show he's not a good sportsman or role model? And why on earth are the playoffs in T-Ball anyway? Why do they even keep score during T-Ball? It's not about the kids. It's just a way cretins like this guy can compensate for whatever in their lives is lacking.

The autistic boy is probably happy to just get to be on the field with the other kids. And why shouldn't he be there? Because he makes people uncomfortable, or because he might bring down their score? I can just imagine what it took for the mother of this child to get him into the league, to get him to the practices and games and to find a way to participate without being disruptive. I imagine the other parents treating her with either pity or contempt. Frankly, I hope she sues the league for endangering her son.

Thursday, July 28, 2005

Evidently I'm not the only one

Wow. Two days after starting this blog, an internet buddy pointed me to THIS ARTICLE in Brainchild Magazine about the exact.same.thing.

The author's pregnancy and NICU experience were very much like mine. To the extent that I thought, damn, I wish I wrote that! Her son is older and has different issues than Susan, but her feelings about the stress of a sick child and the lameness of the Holland analogy were my own.

I think the folks who hand the Holland story to someone with a premature baby are just displaying what I've found to be a common romanticizing of the disabled and the carers for the disabled. We're all supposed to be brave, cheerful, and strong in our faith in God. Our kids are supposed to be sweet and affectionate, and if not cute in the traditional sense, cute like that kid from the tv show "Life Goes On." We're supposed to be so grateful to be 'special."

Not that Susan is not in fact gorgeous and funny and affectionate. She is. But her being sick isn't a blessing. Some time last year, when Susan was really sick and I was just despondent with exhaustion, frustration, and fear, I tried telling a close friend about how mad I was that this had happened to us. She said, "But you know you're really lucky, right?" And yes, I am lucky that Susan is alive and doing as well as she is, all things considered. But compared to most new parents, I don't think I could have been called lucky. That's what's so hard. You can't even complain and feel sorry for yourself when you've got every reason to do so, because the rest of the world demands a Pollyanna.

Last night actually went pretty well. We put her on a pump at a lower rate than usual and only had to get up once to vent her at 4 and then again when she woke up at 8. Venting every four hours is totally doable.

Here's another shot of my spectacular girl.

Wednesday, July 27, 2005

You have to love Google

Ha! After yesterday's bitch-fest about Susan's digestive problems, the Google Ad Generator is putting up links for Mylicon and Enfamil AR. Gee, why didn't I think of that? Mylicon, that will solve everything!

When Susan starting eating from the bottle in the hospital she pretty much immediately had trouble. She'd take half the amount she was usually fed by tube and refused any more. Mylicon was the FIRST thing we tried. It works by decreasing surface tension on liquids in the stomach, so small bubbles will pop and gas will form one bib bubble that's easier to burp out. Never worked out for us. I was very disappointed that it wasn't a silver bullet that would allow Susan to start eating normally. It was the first of many such disappointments.

We did leave the pump off last night, and I only got up once to give her a quick feeding. After six uninterrupted hours of sleep, I'm like a new woman. The baby is like a new baby too - her mood is SO much better today than it's been the past week. I guess she suffers from sleeping badly too.

I always have ounces of formula and calories running through my head. At her current weight, Susan needs a minimum of 770 calories a day, or 38 and a half ounces of formula. At night she can take as much as 3 oz/hour on the pump, during the day she only can take about 2 oz/hour. Without the pump, there's just no way, unless I could get her onto a formula that has 30 calories and ounce. So far she hasn't tolerated that at all.

I'm setting up another round of appointments with an allergist, a new gastroenterologist, and a dietician. Maybe we can regroup and get a better plan together.

Tuesday, July 26, 2005

Getting a grip

Earlier tonight I was sitting on the couch, head in hands, crying in exhausted frustration as my daughter wailed through the monitor from her bedroom. Her dad was putting her down, as she was just as tired and miserable as we were, and even though she goes to sleep easier if I hold her, at the moment I just

The poor kid's been sick all day. I've been trying to introduce new foods to her, so I can transition her to a blenderized diet of foods more appropriate to an almost-two-year-old than infant formula. I think I can put "banana" in the not so good category. She threw up five times between noon and two o'clock; spitting out thick mucus while her stomach contracted so hard I could hear it. She's got to have some kind of allergy, but no matter what formula we give her, there's always something that isn't right. Everything we've tried - soy, lactose-free, elemental, metabolic, organic, yadda yadda - gives her some degree of indigestion that presents itself with gas, mucus, constipation, or projectile vomiting.

We've been at a pretty good equilibrium for the past six months, having found completely by accident that she does much better on liquid than powdered formula. Still, we have had to vent gas from her stomach though her g-tube on a nearly hourly basis around the clock. The last time I slept an entire night was when I went on vacation in April. On a day by day basis, it's not so bad. I can nap with the baby during the day, and at night I go back to sleep easily after getting up about every two hours. Over months though, I'm wearing down. And I'm starting to feel that this is just ridiculous. This can't be normal can it? Even for a kid with reflux and a g-tube?

Everything is a trade-off. We could get more sleep if we didn't feed her at night, using a pump to deliver formula through the g-tube, but she gets most of her calories during that time. It's been such a struggle to get any weight onto her I can't imagine giving that up. Maybe just for tonight.

About Susan

Susan E. came into the world in November of 2003, 12 weeks premature and weighing 15 ounces. Unbeknownst to me at the time, I had a pregnancy complication called pre-eclampsia that caused the blood flow through the umbilical cord to be restricted, limiting the baby's growth. The pre-eclampsia turned into a condition called HELLP Syndrome, where my internal organs began to swell and my blood pressure shot up as my liver started to fail. I was, at the time, 29 years old, healthy, and had no reason to expect any trouble with the pregnancy.

When the shit finally hit the fan, Susan was delivered by emergency cesarean. It was the first of many adjustments I'd make, as I'd always fancied myself the earthy, granola, natural birthing type. Suddenly instead of being six months pregnant I had a scar on my belly and a tiny, writhing, REAL little person with my name written on her identity card.

She was, and continues to be, a survivor. 95-98% of babies born weighing less than a pound have some degree of cerebral bleed, which cause brain damage. She did not. Nor did she develop an ulcer, or a heart defect, or retinal detachment, or "gut rot," or many of the really bad complications of prematurity that could have threatened her survival. She did spend five and a half months in the hospital, many weeks on a ventilator, suffering damage to her lungs and many painful procedures. She never successfully learned to eat from a bottle, so we reluctantly agreed to have a g-tube inserted in her stomach so we could take her home.

Over the next year at home, she has amazed us all. She is funny, engaging, and stubborn. As far as we can tell, her mental development is coming along fine. She is however, held back by physical growth. Her oral feeding deteriorated as she developed uncontrolled reflux, vomiting after every tube feed, and she refused anything in her mouth but her one, precious, pacifier. Her weight crept up, or plateaued at times, but she has remained far below growth curve.

Her gross motor skills are significantly delayed. At 20 months, she doesn't walk or pull to a stand. She won't crawl, but she scoots around very efficiently. I think her lack of crawling is more stubbornness than anything else. Her fine motor skills - reaching, grabbing, using her hands - are quite good. Since talking uses the same musculature as eating, her speech is delayed. She babbles, but is not using words yet. Feeding is a long, hard skill to learn for someone who didn't get it in the first place. She is making progress, but it will be a long time before we can take our her g-tube.

Updating this, since about two years have passed since it was written -

Susan's almost 4. She is like any three-year-old in most ways: she is funny and cute, has a passion for Clifford the Big Red Dog, walks, climbs on the playground and throws embarrassing tantrums at Target. Her speech is delayed, but making rapid progess. She can identify objects and speaks in short sentences. She reads along with her favorite books, having memorized the words.

Eating continues to be a challenge, but she's made such great progress. She can eat smooth foods like yogurt. We regularly puree whatever we're eating and feed her that orally, and (diluted) through the feeding tube. She hasn't figured out chewing yet, so solids either get spit out or she keeps them in her mouth long enough that they dissolve. But she'll put anything into her mouth, and hardly ever gags anymore. It's huge.

She's still TINY. No matter how much food I pump into her, she'll get taller but not wider. At almost four, she's about the weight of a typical 15 month baby, although her height is on the low range of normal.