NICU follow up was today.

TriciaJoy

I'm still kind of processing it all.

His developmental and fine motor assessments were right on target with adjusted age- 7 months.

His gross motor was unsurprisingly behind- 5 months. We've already made arrangements to start PT anyway, so I was pretty prepared for that.

The part that left me feeling down was the feeding.
the neo was VERY concerned about how little he takes by mouth.

This wasn't a neo I knew (other team from our NICU) but had heard a lot of good things about. He was really nice, but pretty much put the fear of God into me. Basically that he's worried about his nutrition (because the GI still only had us giving him the bare minimum of milk. We are supplementing with olive oil and small amounts of solid food as he'll take them) and about the longterm effects of not using oral skills. He worried about language and speech.

He referred us to their feeding team for an evaluation with the ultimate end being a feeding clinic. Right now their first opening in May 4th, but the neo is trying to get us worked in sooner.

He did have lots of nice things to say about my involvement and how well he's doing particularly considering all he's been through, but it still sucked to hear words like "serious" "long term issues" etc.

 

here4u

I'm sorry that they added stress to your life!  May 4th is my b-day, maybe it will give you good luck that the team won't think its as serious   Sophie has her follow-up on the 28th, and I'm getting really nervous too.  They want all her paperwork from the P.T. and her coordinator info.  She has a Pedi. appt. the week before, and I'm thinking of asking them for a progress report as well. 

mhop

I'm sure that was tough to hear...I hope that it will lead to you guys getting the help Robbie needs and ultimately lead to him being all the better for it.

mcdev

We had our NICU follow up a few weeks ago and I was left with the same empty feeling. ?They didn't really tell me anything I didn't already know, but hearing it out loud hurts. ?The good news is that they have resources for you to turn to. ?Hopefully the feeding clinic will have the answers. ?

preemieparent

It does suck to hear those things.  Even if they are well meaning.

The good news: they have a feeding clinic that you were referred too.  That's fantastic.   Many kids have become successful graduates of good programs.

My other comment: while not eating or having good oral skills can have detrimental effects on kiddos, most kids do get past them without any long term issues.   Take Olivia - while she doesn't eat orally, she is now picking up new words every day and they are VERY clear.  Like surprisingly clear.     

I think that if you continue working with OT (and later ST) Robbie will be fine.  Many of the kids that end up having long term issues are those that didn't get early intervention or didn't have supportive parents who continued to work with thier kids (and we all know you work VERY hard).

Just think of May 4th as the day when hopefully Robbie will begin the journey towards regular eating

ijack

I think doctors should have to take classes on how to deliver news to patients. Seriously, it's not like we're stressed enough already. I had a nutritionist at our feeding clinic tell me that Emma's growth was probably going to be stunted because she has issues gaining weight. *** awesome, thanks

I'm sorry that he was so blunt, but I hope that the feeding clinic can deliver some results and it sounds like the rest of it went pretty well!

Mrs. Destructo

Oh man, that must have been a tough appointment to walk away from. How are you holding up now?

I really hope the feeding clinic helps Robbie slingshot himself ahead. 

Trisha, you're doing a great job. You are one hell of a fantastic mommy, and Robby is lucky to have you. I just wanted to make sure somebody told you that today

TriciaJoy

preemieparent:

 

Just think of May 4th as the day when hopefully Robbie will begin the journey towards regular eating

Ah hell, you made me cry. That's a very good way to think of it.

 

And thanks everyone. I'm...........okay, I guess. I've really been in funk all afternoon and evening.

I think the child development center needs a hope wall like the NICU had- with pictures of babies who've overcome various odds.

And PP- Olivia should go on it. I'm glad to hear she's speaking well. For now, Robbie's right on track with speech. He's started babbling in the last week (to my utter delight he's saying mamama a lot) and is extremely social and interested in people speaking. I see him trying to figure his mouth out while studying mine. So I feel good about it *so far* but he's also a boy and has all these issues.

And thanks, destructo. It's nice to hear. Honestly, the doctor was very complimentary saying that the only reason he is doing as well is because I've been so proactive at keeping up with therapy and pushing issues and such.
He was really nice, honestly.. but he just left me feeling really panicked, you know?

 

MandR

I'm sorry.  That must have been really hard to hear.  I hope this feeding clinic has the answers.  It sounds like they do so I'm keeping my fingers crossed for you.