Friday, October 9, 2009

NICU follow-up

So today was Robbie's NICU follow up evaluation.

I honestly struggled with the decision to even go. I hate evaluations. There is just no part of having your child judged that is fun. The fact that he's behind means it's going to be yet another opportunity to hear just where my kid sucks. Frankly, I know already. I know he's not crawling or walking or talking. And 95% of the time, I really don't care. I mean, obviously I care but I mean, not as it affects us day-to-day. I am far more focused on what he IS doing than what he's not. But these evaluations force me to focus on the negative.

If they benefitted Robbie in any way, it would be different. But they don't. We already have a team of therapists who see him regularly; nevermind the doctors. They benefit other children. And that's why I ultimately went. They gather the data from the graduates and hopefully learn from it and are able to improve their care for future preemies.

Getting there didn't go well. The timing was poor and the weather was worse, but we got there.

Then we waited. And waited. Our appointment was at 1, but we weren't called back until about 1:45. Since 1:00 is supposed to be lunch and naptime, I was already annoyed, now I was even more so. We go back and go straight to the therapy room. Normally the nurse checks you in first but I was informed things were "a little crazy" so they were taking people out of order. The next 30 minutes were spent with a PT & OT rushing through an evaluation. And yes, they were definitely rushing. I've been through this enough times to know it wasn't thorough.

Robbie wasn't thrilled. He rarely dislikes people, but he wasn't so keen on the therapists. And then they seemed to be choosing toys he didn't like. At one point, the PT put a small bunny figurine into a container, trying to see if he could get it out. The trouble was he didn't like the bunny figurine. He paid it no attention at all. So of course, he didn't go after it. Another time, she wanted him to put small blocks in a small hole. He was more interested in a Gerber Puff and with some prodding from me, she finally just let him put the Puff into the hole. He has the skill, he just didn't like her blocks. (Shortly thereafter, he also put about 6 of the small blocks in the hole as well.)

We then waited another twenty minutes to see the nurse. Robbie was starting to get tired-cranky. I was just plain irritable.

The nurse came in to weigh and measure him. (27 inches, 22lb 14 oz in clothes.) Then we waited again to see the neonatologist.

That was the part that I'm still trying to assess how I feel. It was a doctor who hadn't been part of Robbie's team in the NICU, but he was pretty friendly and would round in the evenings when he was on call, so we spoke a few times. I always liked him well enough.

He didn't interact with Robbie at all. He came in and started talking to me right away. Basically he said Robbie evaluated at 7 months for "motoring" and 11 months for cognition. The question was what that means. He said that with a 26 weeker with no brain bleed and no complications, he'd expect to see him closer to his adjusted age. He added that he'd expect him to see catch up to his real age between 3 & 3 1/2. But Robbie has had complications. The chronic reflux, even the couple of wheezing incidents and now the ear stuff all contribute to his challenges.

He said that his gut feeling is that Robbie WOULD catch up. He just doesn't know when. He said that it is possible that he won't. He may have "limited potential." He doesn't think that's the case. Simple from observing him (?) and seeing how alert, interactive, interested and engaged he is, he thinks he will overcome his delays. He thinks that I'm already doing everything that can be done for him and that things are going well.

On the one hand, it's nice to hear that he thinks he does have potential. On the other hand, it's never easy to hear that he thinks he also couldn't. I'm really, really trying to focus on a few things:

1) I really feel the evaluation was rushed and incomplete. Because of that, I think he evaluated lower than what he realistically should. This is backed up by the few "tests" I gave him when I got home showing that he can do some of the things he didn't do today.

2) The doctor also didn't really observe him and even with his limited observations, could see that Robbie is awesome.

3) My own gut feeling. I feel like he is making amazing strides lately and I have no reason to believe it won't continue. When I picture the future, I can see us struggling. I see us in therapy until he's 3, and I see us in IEP meetings in schools. But I see him as a late teenager as a happy, smiling, quick witted boy.

But, as usual, I have the post-evaluation slump. I hate it, but I've learned to just accept it. Wallow for a day and then just go back to it.

At least this time, the doctor didn't freak out that he won't ever speak. He did allude to speech issues because of his feeding slowness, but seemed quite content with my response that we'd already made a plan to start speech-language therapy at 16 months.

I'm still undecided if we'll go back to the next one. It's already set up for May. Once again, I wasn't consulted about a convenient day or time, simply handed a card. And once again, it's at 1:00 in the afternoon which for now is nap & lunch time. I'll decide when we're a little closer to time, I suppose. Maybe in the next 6 months I can work myself up for another crappy review. But if it were tomorrow, I'd opt out.



Stacie said...

Oh hugs, Trish. I so, so get the after evaluations low.

We haven't been back for a NICU eval because it does nothing for us. All they want is to keep the data for their statistics. I could care less about their data!

Robbie is amazing. You know that. We all know that! He will do great things and blow that stupid neonatalogist away! Just think how satisfying that will be...

sorry. I got lost in my own fantasy of that. :-)

Nix said...

The assessment sounds like it was all a bit harried and superficial, have you asked your therapists where they would put Robbie now. I would trust their judgement a bit more as they see him regularly and base their opinion on that, rather than the performance on one particular day.

I know what you mean about the post review slump, it hits me everytime.

We have the big 2 year review coming up in December and I'm half dreading, half looking forward to it. We know this doctor and the girls like her, so hopefully their performance will be represntative of their abilities.

chrissy said...

Sounds like Robbie is doing great. If I were you I would not bother going back. You are already making sure he is gettting all the help he needs. Stop wasting yours and Robbie's presious time.

Adriane said...

That really stinks. You know, we had NICU follow ups a while back and I thought it was poorly done as well. Which is surprising because I loved our hospital and the NICU facilities at St J.

Robbie is making huge strides and these people don't see him everyday. I agree that a better evaluation of him would be from his current therapists - the ones that know him and take time with him!

All that said, I think I'm not taking the girls back for the f/up appts. This is a reminder of how irritated it all made me, too!

Anonymous said...


period :)

Have a great weekend!

Patti B.

Tasha said...

"limited potential"??? Bullshit. He WILL be fine...he will just be himself. Not every child, let alone preemie, needs to measure up to every standard. Of course our kids are behind...they were born super tiny and have endured way more challenges and medical stuff than many adults I know. Time, he needs time, and dedication to catch up. Which I know you are as dedicated as they get. :)

Alex said...

You have a beautiful son. You're doing great by him. Keep focused on your instincts since you're with him 24/7, and those doctors only get a limited scope, and even more limited personality!!

Tracy said...

"...even with his limited observations, could see that Robbie is awesome."

Yes, yes, yes. Robbie is AWESOME!

"I see him as a late teenager as a happy, smiling, quick witted boy."

::goosebumps::: That rings true to me.

Trust your momma instinct. You spend more time with him than anyone.

I say you and Robbie did not get the time or treatment that you deserved. Why don't you call the office manager and vent a little? They don't exactly make it enticing for you to go back next year after this treatment.

Azaera said...

Does Robbie have any good therapists that see him on a regular basis? Skyler has an OT with the CNIB who plays with him every second week and takes very thorough notes. She was awesome and suggested she could come with us to Skyler's NICU follow-up and I'm glad she did, because she was able to verify with the follow up doctors all of the things my son does that he decided not to do that day at the evaluation.

Our OT had told us that the toys at the office sucked and we should bring some of our own. But Skyler still isn't a trained monkey. I don't believe any kid is going to do absolutely everything that they normally do in one sitting while strange people are watching them. And the doctors don't tend to believe parents as much about what their kid can and can't do. So it really helped for us to have his OT there with all of her notes. The doctors fortunately took her seriously, and I think gave him a better evaluation because of it.

But I agree if you aren't feeling up to going to the next one, don't bother. You aren't learning anything new and you are just being made to feel bad for no real reason. I honestly think you have the appropriate resources in place for Robbie already. And if anything comes up you'd find out what to do. So they really are just wasting your time.

Kristin (kekis) said...

I know it's easier said than done, but try not to let all of the eval craziness dictate the future. Bottom line is that you know your son better than anyone. He has made amazing strides, and he will catch up. Even if for some reason he doesn't, Robbie is still your baby and always will be loved by you (and the rest of us!).

Tiffany said...

I feel the same way about Randy's NICU follow. And like you, the only thing that keeps me going is knowing that it is data. And that 20 years ago, someone dragged their kid there and that is why my 26 weeker is here with me today.

Keep the big picture in mind and remember that it is the one of the small things we can do to give back for all that was done for our little miracles.

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