Babbling

I believe I mentioned that Robbie has recently started babbling.

Tonight I managed to catch it on video. I've got two. One he's mostly yelling, but you get a little "mama" action and you can see him. The 2nd you can't see squat, but you can really hear him carrying on.

Good visual, mediocre babbling:


Dark, but good sound:


For the record- no, we don't just leave him yelling. He'd been like that for hours. What good are kids for if not to laugh at?

--Trish

Ideas?

I can't believe I'm about to utter (err.. type...) the following words but.....







Next month Robbie will be one year old.


Where did the time go? Seriously. It seems so unreal. It seems like he just came home a month or two ago. Couple that with the fact that he's still only 11 pounds wearing 0-3 month clothing and it just doesn't seem possible.


Here's the part where I ask for some help.

I'd like to do something for the NICU to celebrate Robbie's birthday. I want to take (or send) a cake up there anyway, but I'd like to also do something for the babies.

Now, I can crochet but really not well. And I can't sew (it's actually embarrassing. I can't even sew a button on). Basically I'm talentless. (well, I make REALLY cute babies, but well..I'm not giving any of those away.) So.. I'm looking for suggestions. Something that would benefit the babies that I could work on between now and then.
Would anyone be willing to donate in Robbie's name? (I'm talking hats/booties/blankets or something- not money.)

If I could sew at all, I'd probably make some fleece blankets (just hem the edges.. or do that cute yarn around the end thing) but again, not so much as a button.

So I'm open to suggestions. Anyone? Anyone? Bueller?


--Trish

P.S. I might be willing to reward the winning idea with something. Again, I'm pretty talentless but I could come up with something fun!

Vent

My word of the day is frustration.

Seriously, how an 11 pound baby can frustrate me so much is truly amazing.

He's so damned cute. And happy and smiley and engaging and wonderful.

And then it's time to eat and it all goes to hell.

His eating is slightly better than last weekend. Since I've switched him back to plain breast milk again, he'll once again eat an ounce or an ounce and a half most of the time as opposed to the 5cc at a time of the Elecare fortified stuff. But he's still only taking maybe 5 oz a day by mouth. FIVE OUNCES A DAY.

That's pathetic. If we didn't have the tube, he'd DIE. That's insane.

Then there are the solids. Before the hospitalization for FTT he was doing pretty well with the solids. Not enough to make up for milk, but it was still a pretty big bonus and he'd eat almost anything.

Now he won't. I'm literally struggling to get 3 spoons of ANYTHING in his mouth. He purses his lips up and refuses to open them. If I try to get a little aggressive and open his lips myself, he just spits back anything I put in there.

Now, he thinks the spoon is great fun. He reaches for it constantly. I let him have it, thinking maybe he'd stick it in his mouth. He finds it's much more fun to shake it and bang it on his chair or leg. So we end up with sweet potatoes everything except on his tongue.

Today I tried some finger food. At first it went great. He grabbed the wagon wheel and it went straight in the mouth. And it stayed there. He chewed and chewed and licked and chewed. (See right) For just a minute I thought EUREKA! I mean, maybe he just wants to feed himself. Eventually he managed to break off a little piece of the wagon wheel and seemed to be chewing on it.

And then his spit it out.

I scooped it up with my finger and plugged it back in.

And he spit it out again.

I tried again.

We tried this 4 times or so before he started to get agitated. "STOP PUTTING THAT IN MY MOUTH, MOMMY."

I tried the baby food again. I tried dipping my finger and let him suck on it. That went okayish, but when I tried to get the spoon involved again or tried to put a little more on my finger to give to him, he'd refuse or spit it back out.

I KNOW he knows how to swallow it. He was doing great at this 2 months ago.

Even if I can trick him into opening his mouth (by making him smile) he just spits it all back out.

By the time we were both ready to cry from frustration, I just picked everything up and put it away. The minute I picked everything up, he just beamed a smile at me. He seemed so genuinely happy.

I tried to vent my frustration to my husband who just doesn't get it. I invited him to try to feed him any time he wants, but I doubt that'll happen any time soon. More frustration.

For what it's worth, they did get us worked sooner for the feeding eval. It's next Monday the 13th.

I wish I had high hopes for it. I've talked to too many other micropreemie moms who've been down this road and there just aren't any easy answers. Hell, there aren't any difficult answers.

It's all trial and error and time. Many of them are not seeing improvements until the kids are much, much older- sometimes 5 or 6 years old.

Thinking that this kind of frustration could continue for years more just makes me want to cry or scream or scream and cry.

I WANT THE BOY TO EAT.

--Trish


P.S. Seriously, go look at that picture again. How freakin' adorable is he? It just doesn't seem possible something as beautiful as he is could be so frustrating!

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.

--Trish

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

Bah!

I hate tests.

Seriously.

I did well enough in school. I kinda liked tests. Or at least, I liked classes that used tests for the majority of the grade. I hated homework, but could usually do well on the tests anyway. So I tended NOT to do homework and just skate by on good test grades.

I think my punishment is a kid who doesn't do so well on tests.

I don't like the "snapshot." I can see how well he's progressing. I know how great he is. The snapshot doesn't do him justice.

Today he has his PT evaluation.

She was nice. She was very positive and during the evaluation she said a lot of "oh, that's good!" and "oh, I like the way you're doing that!" She said it so much that I thought maybe he wasn't so behind after all. I mean, he DID start rolling yesterday, right?

And then she gave me the evaluation. She judges his gross motor "age" in three ways.

Reflexes: 5 months
Stationary: 2 months
Mobility: 4 months


OUCH.
He's 10 months actual and 7 months adjusted.

I'll say it again: Ouch.

I must admit that when she left, I felt pretty bummed.

But I'm pulling myself out of it tonight. She did say that he did seem to be on the cusp of a lot of things so I'm hoping that very soon he just takes off. Even just working with him tonight on some things she showed me today, I can see how close he is to sitting.

And she said that the stomach issues are definitely the root cause of the delays. That seems unanimous.

On a good note, she remarked that his fine motor skills were actually quite good. She also complimented ME a little bit, which felt nice. I like it when they note that I know what I'm talking about. It bodes well for being listened to later.

Of course, the worst is yet to come.

Tomorrow is his NICU follow up appointment. Instead of one person evaluating him, we get a whole team of them.

I know it doesn't matter. He is who he is today the same as he will be tomorrow. But man, seeing it all written out is tough.

I wonder if they give extra credit for being cute?



--Trish