There is a dirty secret about EI evals…. never.sound.optimistic. This is harder than it sounds because, clearly, we think Jack is a super genius. But the fact of the matter is, if you don’t make the situation sound really craptastic than you’re not going to get the services you need. We learned this the hard way when he came home from the NICU at 0 days adjusted (or 3 months old). He had his first evaluation and the woman doing it said that he was “just fine for a newborn” and I was all “well of course, have you seen him? I mean, he’s a rockstar – etc.etc.” Guess what happened? No services. But the minute I was like…”well he is 9 MONTHS OLD and isn’t rolling over.” at the next evaluation, well he got services.

So anyway, I was fully prepared to make it sound like Jack couldn’t eat all. I went shopping for all of his least favorite foods (pretty much everything, other than yogurt), I was set to make our case. And then the Evaluator was an hour late for his eval and the kid was starving and so I made him his favorite lunch that doesn’t consist of yogurt, Dr. Praeger’s fish sticks and potato pancakes and thought to myself, “shit, we’re never going to get services, he’s going to scarf this down.” – and he did. And the evaluator watched him as he stuffed his face and then refused to swallow. She watched our normal routine of holding his head, sweeping out everything from his mouth and trying again. She watched him hold string cheese in his mouth for 20 minutes. She watched him stuff about 10 goldfish in his mouth and not chew. And she said, “why of course he needs services, he must be starving all the time, he’s not swallowing anything.” and then I felt even more guilty. More guilty that I didn’t just go out and get him services myself while waiting for the stupid state to catch up. Guilty that I couldn’t figure out another way to get EI to actually pay attention to us.

Consider this lesson officially learned.

Oh, and he qualified for speech as well. He has no words and apparently he’s supposed to have between 8 and 10? And he only babbles monosyllabic-ly? Fuck.

So the good news is we get services. The bad news is, we need services.

Hollis was my first dog ever, and while Sarah had innumerable animals in her home growing up, Hollis was my first. We had him for 12 years, and I feel like we gave him good life. We rescued him from the streets of Queens and whisked him away to the luxury of TriBeCa, Chelsea and eventually the Upper West Side. He got to roam in Connecticut where he enjoyed nothing more than sneaking off into the woods to find dead things to roll around in. We took him to Maine, Washington D.C. and pretty much everywhere else we went for the past 12 years.

He was a world class snuggler, and even when he drove me apeshit I still loved him.

He was my dog. My first dog, and I’m crying as I type this because I can’t believe he’s gone.

I’m not being melodramatic. I swear. It’s dates, and times, and someone referencing their summer vacation, when I remember calling them from L&D to tell them I was on short term disability and couldn’t work… All of these things combine to shove, push, pull me back to that time. That time that I had my baby 13 weeks early.

A lot of preemie mom’s talk about the first “birthday,” the first “gotcha day” (when Jack came home from the NICU), the first “due date day.” They all mention that it kind of sucks. The whole thing, prematurity, the aftermath, the sights, sounds, smells, it all kind of sucks.

Except for this part:

This part is pretty awesome.

We’ve been following Kate and her family ever since Dutch blogged about them here and here.

Kate is a remarkable writer and she has done a better job of describing the NICU experience than we ever could. Sometimes I can’t finish reading an entry because it takes me right back to that place and then I have to walk away and hug the little man, just one more time.

Today, she also reminds us, (as if we need it) of how amazingly lucky we are.

We had a long conversation with the Physical Therapist we’ve hired for Jack. She is very, very good and specializes in working with preemies. She told us on Monday that Jack is about 1/2 to 1 month behind in all of his physical milestones for his adjusted age. Next week Jack turns 8 months old (how the hell is this possible!) or 5 months old, you pick. But he’s really only functioning at a 3 month level.

It’s scary to type that. It’s also scary because we’ve been told that he’ll get even further behind as the year goes on. We’re modifying our expectations (that’s all we do these days), if he’s sitting up at 7 months adjusted I’ll be over the moon.

The future is a freaky thing right now. We’ve got an almost 8 month old/5 month old that can’t role over and terrifying medical fears lurking in the back of our heads. BUT we’ve also got a super smiley, happy baby. We get that we’re lucky. We really do.

But we can’t shake our fears.

Preemies most often get a devastating diagnoses at around 2 (ish) years of age. This is when doctors can really determine: Does he have severe mental deficiencies? Does he have cerebral palsy? Is he going to have severely impaired vision or hearing? The odds are on Jack’s side that this won’t happen, but it does take our breath away that he is at risk.

The next big milestone diagnosis after age 2, are around 6 or 7 years of age. Doctors and therapists can start to determine the “minor” disabilities that might exist as the result of prematurity: psychological disorders, seizures, low IQ and vision and speech disorders are the big ones, the lingering, “curse(s) of the nicu…”

Knowing all of this, we’re very optimistic about Jack’s future. He’s a very happy boy. He’s big into making raspberry sounds and likes screeching. A lot. He makes eye contact and appears to turn to us when we call him by name. He likes banging his rattles around, and is clearly really responding to all of his therapies. And he’s big. HUGE even.

We hope we’re never going to have to deal with a bad diagnosis, devastating or minor, but the reality is that we could. These fears make it increasingly complicated for us when well meaning people say things like “he’s going to be just fine.” Because we think he’s “just fine” now. But if you’re talking about all the big scary stuff…well, if you have a working crystal ball, I’d like to borrow it…

Ever since Jack was born I’ve found myself flailing around the internet trying to find resources. Places where sensible people talk sensibly about prematurity. For the most part I have found the following two items:

1) A widely circulated short story often attributed to Erma Bombeck, about why we were chosen to be preemie parents.
2)A widely circulated short story about planning a vacation and accidentally ending up in Holland, a place you never intended to go, but maybe it’s okay, right?

I *think* that these stories are meant to make parents of premature children feel better. Mainly they have made me feel vaguely nauseous and more than a little pissed off.

So imagine my pleasure and surprise when I came across the blogs of several smart, opinionated and very well informed parents and even Neonatologists. The conversations on these blogs can get quite shrill and I’ll admit that I was in tears while reading the first couple of posts on the Preemie Experiment, but in the end, I’ve found the debates on these blogs incredibly informative.

I know that there are a lot of parents out there who read this blog. I also know that we’re getting some pretty high traffic from parents with premature children. I hope that you’re able to find some value in this information and that it makes your journey a little easier. I know they’ve already helped us.