Thursday, April 2, 2009

NICU follow up

Today was Robbie's NICU follow up assessment at the child development center.

It was both better and worse than I expected.

I went in prepared to hear that he was behind. I hoped to hear some good news with it, but I prepared myself for the bad stuff.

They mainly evaluated 3 areas: development, gross motor and fine motor skills.

Developmental and fine motor skills were good. He assessed at 7 months, which is his adjusted age. There were a few 8 month skills he was starting as well. I was pleased.

His gross motor stuff was, not surprisingly, behind. They assessed him at 5 months. Okay. Ouch. But I knew it was coming. They were pleased that we'd already made arrangements for PT. No one seemed terribly upset.

Then the neonatologist came in. He wasn't a neo that I knew from the NICU. He was part of the other team. He was, however, a favorite of several of our NICU friends, so I was glad to see him. Until he started talking, anyway.

Essentially, he's very concerned about the eating issues. VERY. CONCERNED.
He's worried about his nutrition, but also about what not eating means. He's worried about the language and speech implications.

The center does have a feeding clinic. And he wants us in it. They evaluate children twice a month and April is already full. Right now we're scheduled for May 4. The neo, however, isn't pleased with that and expressed that this "can't wait until May." So he's trying to get us worked in sooner.

I honestly was taken by surprise. Yes, obviously the feeding is concerning and extremely frustrating for me. But up until today, the feeling I got was more of the "take our time and he'll outgrow it" vibe.

He's only had the G tube for a month. I think I'm still catching my breath from having to worry about him starving to death. And now we've moved back into panic mode.

I've been in a funk all day. I keep trying to focus on the good.

Finally someone listened to me. I told him about the trouble I'd had getting GI to listen to me. He was shocked when he heard some of details.

Finally someone was helping. He said we were moving forward with or without GI. Things will not stand as they are. He needs help and he's going to get it.

He had plenty of nice things to say. He called it a "minor miracle" that Robbie is doing as well as he is considering all the issues he's had. He said lots of nice things about how proactive I've been about getting his therapy and credited that for the fact that Robbie is pretty on track in a lot of areas.

I keep thinking maybe we can really make a difference.

But I keep coming back to panicked. And sad. And worried. And guilty.

I know we'll get through it. God has seen us through much, much worse.

I hope that you'll pray with us that the therapy works and he catches up.

And if you could throw an extra moose on the spit, he hasn't gained much weight in about 2 weeks even though I'm giving him the calories in his tube. Not sure what the problem is, but he could use a boost.


P.S. If you check out Robbie's blog post from yesterday, there are pictures!


Keri said...

So glad your little Robby has the new neo on board. It already sounds like he is going to get things done! I'm thinking about you and praying for little Robby!

Two Hands said...

I am very, very glad that Robbie has a neo who is very concerned. Now you can be assured that his feeding difficulties are being taken as seriously as possible. I hope this represents the turning point for Robbie and his eating or lack thereof. You've done such a magnificent job, it's about time you had some more help.

Kierstin said...

glad a dr is really taking an interest. I hope he find some help for Robbie, but IMHO he should get points just for being so darn cute!

Heather said...

It's OK. I'm sure it was tough hearing another doctor validate the concerns you've been having about Robbie's eating from Day 1, but try to relax. It's nice that there's someone validating what you've been feeling and he can help get other people to take it more seriously. You've been doing such a great job as Robbie's advocate. No one could say otherwise.

Rachel said...

I'm glad that you got a doctor who finally has some slight notion of what you've been going through feeding Robbie. And I hope his urgency leads to real results, not just more pressure on you. You should be so incredibly proud of Robbie's developmental milestones at this point. Of course he's going to be a bit behind given everything that both of you have been through, but he is clearly making huge advances.

Melanie said...

I am glad he did so good with the follow-up. I've been wondering if maybe we should have our girl's skills tested since she was unable to do any tummy time until she was almost 5 months, due to the GERD.

He looks great, if that's any consolation for the bad news. Being cute should always get extra points!

As for his feeding issue, it is a great concern and I am glad that a doctor is finally doing something about it. With that said, I hope you can be more at ease knowing that things are going to be done to help that, unlike the stupid GI. It's such a relief when somebody finally listens!

It's always scary and hard when your baby has feeding troubles. I felt guilt sometimes, but you can't let it get to you. You have nothing to feel guilty about, as it is not your fault.
Praying that all goes well in the following weeks/months and that he can get in sooner to the feeding clinic.

Anonymous said...

I found your post because of a link on a friend's blogspot. I just felt extremely compelled to share with you, even though I don't know you, how proud of you I am...of the enduring love you have for your Robbie. It's no wonder God entrusted him into your hands...and thank you for encouraging so many other women out there, too. May God bless you with wisdom and strength as we celebrate His eternal love for us.