Monday, March 30, 2009

Developments

Well, I've decided Robbie likes to make a liar of me.

The last few days have brought some interesting developments in his world. Only one of those is bad.

I'll start with that one so we can end on a good note.

The eating is the worst it has ever been. Last week he'd started spitting up quite a bit again, so I called GI. They wanted me to switch back to Elecare again. I was skeptical because Elecare was the formula he was on when he was discharged from the NICU and he threw up so much that was back in the hospital for dehydration.

But I thought I'd try. So Thursday we switched. The spitting up improved, but the eating declined severely. He went from eating between one and two ounces to eating maybe 5 or 10 ml. (Everything leftover goes into the tube.)

Yesterday he started spitting up again. So yesterday afternoon I switched him back to plain breastmilk, but he still wouldn't eat. Finally last night I managed to trick him into sucking on a bottle w/o getting any milk and eventually got him to eat and he took a little more than 2 oz. But that was a one shot deal. Since then the most he's taken has been 12ml. (30ml=1oz)

So that's frustrating. I'd like to see things improve, but I'd settle for status quo. Declines are not welcome.

BUT.. good things abound!

The rolling: He could if he wanted to. I've been saying that for at least a week, but today OT agreed with me. He had a reevaluation with the head OT lady and she said that he can do all of the things he needs to do (arms and hip wise) he just doesn't get all the way over from back to front probably because pain stops him.

And he actually has gotten from belly to back a couple of times. He's not doing it the "right" way by turning his hips, but he can flip himself over. OT says he does it that way to avoid pressure on his belly.

But it still counts!

And really, in my opinion, the most exciting thing is his language development.

The last couple of weeks has been all about the voice. He's learned to squeak, squeal and grunt. And two days ago, he started babbling. At first it was a couple of "ahbah. Ahbah. Abaah." then one or two "mah. mah."
But last night I got a whole string of "Mahmahmahmah. Mmmmmmmmmm mah. Mmmmmmmmm mah. Mama." and a few "bahbahbah."

I was so giddy I could have peed myself. I realize he's not really saying momma, but it's still the right sounds and I LOVE IT.

I was prepared more for baba or dada because he prefers those sounds, but I'll take mama!

He's also really getting good with his hands. He can find his pacifier and get it in his mouth. He's still working on how to turn it if it's aimed wrong, but even that is showing dramatic improvement. Just this morning I caught him staring at it and turning it a little like he was trying to figure out which way was up.

These things are coming just in time, too. His NICU follow up evaluation is Thursday and I've been a nervous wreck about it. Not that I don't know where he stands on stuff, but it's a different story when you're going to have to trek him into a child development center and have him judged by a bunch of strangers. They're going to assign him a developmental age and seeing it in black and white might be painful.

BUT, at least now we've got some bright spots even if some of his gross motor stuff still really sucks.

Actually it's a very full week for us here.
He had a follow up OT evaluation this morning. Tomorrow is his 9 month well baby exam. Wednesday we have a play date with some NICU friends and a PT evaluation that afternoon. Then Thursday is the NICU follow up. Robbie is going to be a little social butterfly.

I'm just his manager and publicist. It's a good job if you can get it.

--Trish

15 comments:

Mrs. Spit said...

Robert! You are driving your lovely mum crazy, and the moose are still asleep.

Glad for the talking!

Adriane said...

Yay for all the talking!!! I would KILL for a mamamamama. My girls are still on the "b" words.

I am so sorry about the eating situation. I can't even imagine. I wish you had good news in this area.

My girls NICU f/up is in a couple of weeks (we had to reschedule). Can't wait to hear how it goes and what things they look at with Robbie. I am going to be cramming between now and then and hopefully teaching them to read in time for their evaluation. You know, really impress the nurses. :-)

Slytherpuff said...

My theory is that if it sounds like a word, it's totally a word. So yes, he's saying mama. :)

Georgy said...

lmao at the manager & publicist comment, but I'm glad to hear about all the developmental progress Robbie's making.

Melanie said...

Elecare isn't working for him? That was the miracle cure for our little one. I wish it was the same for Robbie! As for you, little man, quit worrying your Momma!

Yay for words! When my baby was about 3-4 months she was babbling up a storm and would even do the "mamamama!" when she was upset, however; our little miss 6m old has seemed to have taken on a vow of silence and won't really "talk" or babble anymore. Just screeching and loud excited breathing when we talk to her. I wonder why they do that? I think Robbie is saying Momma; it is more exciting that way! And you can do the "he said 'Momma' first" dance!

I am happy for his improvements. And you have doubly proved my idiotic comments wrong about being positive! I'm sad that his rolling causes him pain though.

Does he favor all things plastic that he's not supposed to have? Ours sure does! She can't crawl and always has a plethora of toys around her yet always manages to get her hands on the wipes and the diaper disposal bags. Even when they are no where near her! I suppose she likes the crinkle. LOL! We ALWAYS watch her so she never gets so far as to getting things into her mouth though.

Here's to hoping that his eval appt goes well! Don't fret because as you've said, he's been having some major improvements this week! And the pacifier thing? Go Robbie! Good on him for figuring that out. Mine wouldn't touch one with a 10 foot pole! What's your secret to getting him to take to his pacie so well?

God bless, Momma.

Fertilized said...

WAY TO GO ROBBIE! Over is OVER .. any way he gets there. He may be more of a creative genius kids!

* sending send you love and prayers on the feeding situation

Oober said...

I demand video of the maaaaaammaaaaahhhh cuteness!!!!

Martha said...

That is such great news that your son is making wonderful progress!! Mama, what a sweet sound indeed.

Trish said...

Melanie-

No. The Elecare is the enemy. I knew it was going to be but our damned GI doc just doesn't listen to me. He was actually on Elecare when he was discharged from the NICU and was back in the hospital 3 days later because he had puked so much that he was dehydrated.
I TOLD them that last week but they wanted me to try it again.
I've officially stopped using it today and he's already starting to eat a little better again.
After 3 days of eating no more than 10ml at a time, he took 40 a couple of times today. Still not great, but better than zero.

I'm wholly convinced he can't tolerate the corn syrup solids in most formulas.

What I did tonight was fed him plain breastmilk and gave him 5ml of olive oil in his tube. That's as many calories as the Elecare was adding to his diet anyway. And it doesn't make him puke his guts up.


And yes, he loves all the non-toy items. There are piles of toys everywhere but his favorite things are:
The box of wipes (admittedly they have little Nemo on them and he loves fish)
The remote control
the cordless phone
his apnea monitor wires
his G tube stuff.



As for the paci, he's always loved it. They started giving him a special one even when he was still intubated in the NICU and he's always loved it. Even when he didn't have one, he'd suck on his ET tube. (which was actually kind of bittersweet.)

Honestly, we'd be dead w/o a paci. He's REALLY attached to it.


Oober- if I can catch it on camera, I will post it for sure! Right now it's really intermittent. I'm sure as time goes on he'll get onto longer stretches of it and I'll catch it though.

Amy said...

Oh man, sorry about the eating getting worse. :( (Though I saw in a comment it's gotten a *little* better again.) Praying that it keeps improving!
And YAY for all his developments! All so exciting, and so cute to picture. :) Gooooo Robbie!!!

ALC said...

Crossing fingers for more improvement on the eating- but GREAT on the other pluses!! They will keep coming honey!

Smooches

Snipe

Meghan, Gary & Sophia H said...

Ya to developements momma.

Heidi said...

Way to go Robbie! Wow! I can totally imagine how much your heart must be melting.

Best wishes.

Melanie said...

I was rereading the comments from the "r-word" post mostly to remind myself on the wrongs I have said, but came across this comment that I hadn't seen:

Slytherpuff‬ said...

"First, I *HATE* the r-word and will always speak up. Even my shy-as-hell never-spoke-up-in-class 12-year-old self was angry enough with some of the "popular" kids for making fun of one of the Special Ed kids that I did something about it. A firm "That's.Not.Funny." shocked the hell out of them (ha! she speaks!) and sufficiently embarrassed them."


I wanted to say BRAVO to Slytherpuff for being such a brave child. When I was in high school, there was this one special boy who was very smart, just deemed "socially retarded" by the school. He loved to pick up loose change, anything from pennies to quarters, and would do so during his entire lunch. He actually got so much change he was able to buy some pretty nice things! But the jocks thought it was funny to throw change down, say, "Hey Patrick! Here's a quarter!" and when he bent down to pick it up they'd step on it so he couldn't get it. The whole lot of them would laugh like there was no tomorrow. I'd usually rescue him from their mean reindeer games, and if I couldn't get them to stop, I'd take Patrick away and give him my change.

The special education children at my school were some of the most amazing people you'd ever meet. They were always happy and could put a smile on my face.

Those jocks are why my daughter won't attend public school if I can help it. I was always helpful and nice to these children in hopes that I could lead by example, and God forbid my child ever be in that situation, she doesn't have jocks that stomp on her pennies.

What goes around comes around.

A smile is contagious.
Lead by example.

Treat others as you would want to be treated.

And finally, never underestimate anyone because they just might surprise you.


All things I knew in high school and have forgotten until Trish, Mrs. Spit, Slytherpuff and others boldly reminded me.

And always be kind, for He is watching.

Thank you all for lessons learned.

Melanie said...

Trish ~

Sorry that Elecare is Robbie's enemy. It's odd considering it is hypoallergenic, has free amino acids and no milk or soy proteins. Although now that I think about it, Elecare didn't work for her at first either because they didn't have her GERD under control. Finally at 4.5m old they put her on Prevacid and then she could eat without projectile vomiting or spiting up the entire feed.

I hate it when doctors don't listen, and I don't like using the word hate unless I feel very strongly about something. The first three months of our girl's life, no doctors would listen to what we had to say. Apparently they knew more about her patterns than we did, even though we spend every waking hour with her and they spend, oh, twenty to thirty minutes with her. I'm sure this has happened to you. Now we have a civilian pediatrician who listens and a great GI, as I said. It is always better for the child when everyone works as a team, doctors, nurses and parents included. When the doctors cut the parents out of the team, nothing really seems to get done, does it?

As for the toys.....children are just like cats! You could spend a million dollars on all the amazing fancy toys but all they want are the boxes, bags and electronic gadgets. Lol!

Our daughter used to LOVE her Pacies, until one day she discovered her thumb. It is disheartening to me because all of my cousins and friends who sucked their thumbs past cutting all their teeth usually ended up with braces because of it. Plus I went to school with a boy who sucked his thumb in class up until we graduated high school! I've tried to reintroduce Mr. Paci but she just doesn't care for it. If milk doesn't come out, get it away, she says.

Other mothers - have you had similar problems? Is there anyway to get my girl to take to her paci again?