Tuesday, December 30, 2008

Food Wars

Sometimes I'm just so angry. So frustrated.

It all seems so unfair.

We worked so hard to get pregnant. So hard to stay pregnant. Then Pre-E came. And Robbie had to come early.
He fought and fought and endured so much- tubes in the throat, needles everywhere, wires, leads. He was so tired that sometimes he had to take breaks from breathing. It was so hard to watch him suffer, to watch him struggle.

And then things got better.

Finally he was breathing. Finally he could eat. Finally he could stay warm. Finally he could be held any time he wanted. Finally he could eat.

And it was bliss.

Over and over again we heard how well he was doing. How great he looks. How amazing his progress is.

And now there is this thing. The eating. It sounds so simple. He can eat any time he wants as much as he wants. And he seems to want to eat, only he doesn't.

He'll gnaw on a nipple. He doesn't fight the bottle any more. He doesn't seem to be in pain. His reflux is still there but the burning seems better.

But if he's awake he doesn't want to suck on a bottle. If he's sleepy- he'll suck away. Latch on and eat. But if he's awake- he'll only gnaw.

And no one knows why. Everyone seems to agree that it's not an oral aversion. He loves his paci. His loves to suck on his hands. On my hands. On a wrist ratttle. Anything but a bottle.

But he also seems to WANT to eat. If I put his milk in a Playtex Drop-Ins bottle and squirt the milk into his mouth he'll swallow it. But not if it comes from a dropper. He wants to seem like he's eating and getting milk and then he'll swallow. Only he won't suck.

Most days I can time his feedings around his sleep. He still starts off gumming at the nipple, but as he gets drowsy, he'll latch on and suck and then he eats. I'm able to get him to his daily food goal that way.

We started thickening his feedings with Simply Thick and that seems to have helped his reflux.

But then there are days like today where he doesn't want to nap so therefore he doesn't want to eat. Days when I have to put him down on his playmat and take some deep breaths because I'm so frustrated that I want to cry.

I set an alarm at night to feed him every 3 hours to be able to get as many calories as possible into him while I can.

I'm tired. So tired. I'm falling asleep feeding him at night. I wake up doing the head bob- and the bottle dropping bob.

I know what the doctor will say. A G tube. I don't want another G tube. I hated the one he had. It leaked all the time. And I'm convinced it made his reflux worse.

I just want him to eat. I want to know if or when he's going to outgrow this. I've experimented with cereal- he does okay. He probably ate a tablespoon worth tonight. Not bad for a kid who really shouldn't have solids for another 2 months.

Maybe when more of his nutrition comes from solid food he'll do better? Or maybe it will lead to more trouble? I don't know.

All I know is that I'm tired and frustrated and worried. I'm sick of worrying about every cc that passes his lips. He doesn't deserve to have an anxious, hand-wringing mom. He doesn't deserve a body that betrays him. He's already been through enough and I don't know how to fix it.


--Trish

Saturday, December 27, 2008

Brilliant

I must be brilliant.

Seriously. I mean, clearly I have ALL the answers. My husband seems to think so since he's constantly asking questions.

-Is he hungry?

-Is he in pain?

-What is WRONG with him?

-What is wrong with YOU?

-Are we ever going to have sex again?


My friends tell me that a baby's first year is really hard on a marriage. It's normal. I'm trying to be reassured.

In the mean time, he amazes me. Only in a man's mind can the same conversation contain both "I dread coming home to you" and "I want to have sex with you" and not seem odd.

So let's be clear- he doesn't like me very much but he'd like to fuck me more. Makes perfect sense to me.


To be fair- he's not without a point. I'm cranky. I can give 100 reasons why. I'm worried about Robbie all the time. I don't sleep. Probably partly a little PPD. And frankly, I don't get enough help.

But when I'm flying off the handle because both sinks are full of dishes there's a problem. Don't sweat the small stuff, you know?

So we talked.

I'm not sure anything was really resolved.

He still refuses to help at night. He says he can't because he's too tired for work and falls asleep in meetings.


I tell him to turn the World of Warcraft off and go to bed earlier. He balked.

I explained that I've almost got a negative libido. He tried to compromise. I balked.

I'm sure eventually things will get better. The good news is that we still love each other. We just don't like each other much right now.

Marital bliss abounds.

--Trish

Thursday, December 25, 2008

Merry Christmas

Christmas was busy and hectic and exhausting and wonderful. The way it should be with a wee baby in it.

After I posted my zombie post last night Robbie FINALLY gave up and slept around 3:30. He would nod off before that but wake back up from the slightest movement or sound. This time it finally stuck.

He ate again at 5 at which point I got up and put the ham in the oven. Then again at 8, which is when I really began my day. i put the beans on, pumped, dipped some cake balls in chocolate and considered taking a nap.

Of course, that's when Robbie really woke up for the day- about 9:00. Not nearly long enough but it was Christmas so it kind of worked out for the best.

My MIL got him up and dressed for Christmas while I finished the cake balls. Then we waited on my BIL to show up so we could open presents.

Robbie wasn't really sure what was going on, but he was very interested in it all.

I think the best present he got all day was a butterfly wrist rattle. He gnawed on the wings for hours. Funny how it's always the cheapest, simplest things, huh?

Lunch was fabulous. I made a 19 pound ham which turned out great if I do say so myself, my world (okay, family) famous sweet potato casserole, mashed potatoes and green beans. David made home made yeast rolls and baked beans. MIL brought chocolate chip cookies (I dipped a couple of them in leftover candy melts, too.)

And we ate until we were sick.

Robbie had passed out immediately following gift opening and woke up just as we ate. (I'm told I had the same knack as a child.) So I rushed through quickly and then tended to him while everyone else cleaned up. I knew that kid was good for something.

After lunch my dad took care of Robbie while I got a nearly 2 hour nap. IT FELT SO GOOD. I've always been a nap connoisseur but rarely get one these days because every time Robbie naps, I have to pump. He rarely naps longer than about an hour and usually even less, so there just isn't time for me to join him. So today felt fantastic.

Then we watched a movie and snacked. Robbie hung out with his grandpa and I actually got to put my feet up.

Oh! And Robbie ate great ALL day. I definitely got one day of the one thing I really wished for for Christmas- Robbie to eat!

The night was long, but the day was wonderful.

Merry Christmas to you and yours!


And of course, a holiday blog would not be complete w/o a Robbie narrated photojournal!






A Cox family Christmas Eve wouldn't be right with A Christmas Story. Daddy says it's the best. Mommy and grandma rolled their eyes a lot. I think I'm with Daddy.




I tried to stay up all night. I even outlasted the cats.




But I was still up early and impatient.



But Daddy managed to wrangle me.



Then we waited for my uncle BooBoo to get here.




Grandma held me while mommy passed the presents out.




He got here. Then we opened presents




Did you know there is a whole book about ME?



And Santa brought it for grandma!




Then it was my turn. Mommy was still in her jammies but I just climbed in her lap and she helped me open.



I think my favorite present was this wrist rattle from Todd & Paula. It's nummy!



I got lots of books!



Uncle Bradley gave me his favorite one from when he was a boy.


Mommy even read me it to me right then.




Grandma still thought her book was the best one.



Then Daddy took me for a while while mommy to get a couple of things done. Like take pictures of us!


Then I took a little nap while Mommy, Daddy & grandma made lunch. I woke up just in time for mommy to have to rush through and then feed me again.

After lunch Grandpa took care of me while mommy took a nap. Did you know he has FUR growing out of his LIP?


The day was really great, but man was it tiring. Good night!

sleepless

I'm never ever ever going to get a good night's sleep again am I?

2:58 am.

Robbie: not happy
Trish: zombie

Saturday, December 20, 2008

Babies v Cats

Know why babies are better than cats?

When you kiss all over a cat, they squirm and run away.

Babies turn their heads into your and reach up and grab your lips and try to rip them right off.


Sometimes I'm just overwhelmed that he's actually MINE.


--Trish

Friday, December 19, 2008

Better


Yesterday was a MUCH better day in Robbieland.

He had his 6mo checkup at the pediatrician.

He broke 9 pounds!!

9lb .5oz, to be exact. 23 3/4 inches.

That means he gained 30oz and grew 2 inches in 28 days. I was FLOORED. Dr. P was thrilled.

He's still right on track developmentally. He's 3 1/2 months adjusted and hitting all of his 4mo milestones. The only one he wasn't doing was rolling over, but he does occasionally do it on accident. (He gets pissed off and flings his head backward and topples over.) Dr. P says that counts. She got him to do it on the table. I laughed and told her she was full of it, but hey.. who am I to argue?

He got 2 shots. I opted to split them into 2 doses since they made him so miserable last time. Other than him being a little clingy and tired most of the day, he seemed fairly unaffected, so I'm happy with that choice. He'll get the other 2 in a couple of weeks. My doctor is very amenable to an adjusted shot schedule anyway, so she didn't bat an eye.

I discussed the OTs thoughts with her and she agreed with everything except the carb thing. She said that most of the things that cause babies gas are 1) dairy (which I gave up over 4 months ago) and 2) fresh fruits and veggies. She asked if I eat a lot of apples. I said no, but i do drink a lot of juice which has a lot of apple juice in it. She doesn't think that would be it, but who knows. But she said that most babies outgrow the sensitivity to dietary stuff between 3 & 4 months, so she hopes that he'll outgrow it soon.

For her lips to God's ears.

She wants us to continue with the solids- new food trials every three days. I'm sort of delaying that. He's still not quite sure what to do with the rice cereal, and honestly, as long as I can get enough breast milk into him, I don't feel it's really necessary. I think we can take our time getting him used to the cereal and then progress to other foods in a few weeks.

The eating is hit or miss. Yesterday was a good eating day. He managed to take in 21 1/2oz (18 being his minimum goal) and we didn't have to fight about it too much until last night.

Through the night, though, it hasn't been as great. Which is unusual because usually night time is the best time. I've been waking to feed him even if he doesn't (though he usually does) just to try to sneak in as many dream feeds as I can. But he wasn't feeling that so much last night. It amazes me how he can fight a bottle w/o ever opening his eyes. He may not talk much, but he sure does communicate well. "I DON'T WANT THAT."

I'm trying not to be too upset about it since he had such a great day yesterday. Honestly, I don't SO much mind a lighter appetite. The most frustrating thing is when he's clearly hungry but still won't eat.

And I'm really not entirely convinced it's all digestive in nature. Perhaps that's what started it (a negative association with eating because it makes him uncomfortable) but I don't think that's what keeps him from latching onto a nipple directly. Even when he doesn't seem too gassy and does seem hungry, he sometimes won't eat.
And then there are times when you can feel his tummy gurgling and he'll suck a bottle down in 10 minutes.

I just don't get it.

I just keep hoping he outgrows it.

I really do hate to wish away his babyhood. I know there will be days when I miss these days (at least parts of them) but I can't help but finding myself thinking how glad I'll be when the food wars are over.


In a mostly-unrelated note, Robbie was dressed like Santa yesterday. Dr. P loved his outfit so much that she asked if she could go show him off. Of course I said yes. So she took him out to show him off to the office staff. Pictures below.


--Trish


Ho Ho Ho! Merry Christmas!




You lookin' at me?



Will there be PRESENTS for ME?



Nummy hand!



Are you done yet?


My first food. I was very, very hungry and didn't want to sit still to be fed so Mommy had to hold me and bounce me while also trying to feed me.

On an unrelated note-I wonder why she's so tired all the time?







Wednesday, December 17, 2008

OT Eval take II

Our team of OTs just left.
Our specific therapist (Karen) came with the head of the place (Trish.)

Trish pretty much said the following:

-she doesn't think it's an oral aversion. She agrees with me that he LIKES to have his face and mouth messed with. He enjoys a pacifier. The trouble is with EATING, specifically.
-she thinks it's reflux and general digestive discomfort. He has a lot of gurgling and gas while he eats and is definitely still refluxing. She thinks the meds are working to keep the reflux from burning, but that doesn't make it any easier for him to swallow while stuff is trying to come back up.
-generally, he has so much going on in his digestive system that he just can't focus on eating.


She suggested the following:

-swaddling to eat even though it pisses him off. It just helps him organize and focus.
-thickening his milk with Simply Thick
-a warm compress (probably going to get a Happi Tummi) for his tummy to help with gas
-improved stomach strength so he can bear down and move things along better
-wants me to talk to the GI doc about possible dumping syndrome
-trying distraction while eating. Suggested baby einstein videos as a way to keep him focused on something else. She wasn't thrilled with the suggestion since we don't want him hooked on TV, but that's something we can wean him off of later.



All of that is fine but I need to find out how Simply Thick affects the life span of my breastmilk. If I thicken 3 oz of breastmilk and he only eats 2 can I still reheat that remaining 1 oz for the next feeding? Right now I can.

I don't have an oversupply of breastmilk. I only make 20-22oz of breastmilk a day at this point. His food goal for the day is 19. He sometimes eats 20 or 21 oz (a good day, obviously) so if I have to start pouring out breastmilk, that's going to be a problem.

Karen thinks it's more like gelatin than anything and shouldn't change anything, but I need to know.

And as a side note, Karen thinks it's possible he may have thrush. There is a small white spot on the back of his tongue but it could be milk. But since we see the pediatrician tomorrow, I'll have them swab him.

The feedings through the night went well. (And he slept well!) but the feeding we tried to give him while they were here was........stressful. Of course, it's hard to say how much it was affected by strangers in the house etc.

Trish finally got him to take about 2 1/2 oz. That's how she really evaluated him. But at least she got to see what I'm dealing with and was very sympathetic.

We also discussed dietary changes for me to make him less gassy. Which honestly almost made me cry. She was suggesting a no carb diet.

Can someone tell me what the hell I'm supposed to eat?

Between his gut and my gallbladder, I honestly don't know. Low fat, but high protein, but low carb with no dairy. So.. lettuce with some grilled chicken on it? I don't get it.

For now, we're ignoring the dietary thing and trying the other stuff. If we get back to the dietary stuff, I'm going to insist someone give me a menu of what to actually make because honestly, I just don't know. I'm willing to give up anything for him, but I have to eat SOMETHING.

Can someone please tell me when he's going to outgrow this?


--Trish

Better day

Today was a better day.

I've had good luck with the new bottles. A friend brought me the level 2 nipples for them. I'm not sure how much difference it made from the level 1, but he definitely latches on to them better than the Dr. Brown's that we've been using.

The annoying thing is that they leak.

But- they fit into the Dr. Brown's bottles.

Now, I'd love to get away from the Dr. Brown's bottles because I'm sick of washing 800 parts, but they do work for keeping him from getting so much air and we have an abundance of them, so I don't have to shell out a bunch of money for new bottles- just nipples.

So it's good.

Now, it could all go to shit tomorrow. He's nothing if not unpredictable. But for today- it was better.

The new nipples are really hard and they seem to wear him out quite a bit. Every feeidng that I've given him with them, he's fallen asleep. I'm not sure if that's good or bad, but at least he's eating.

We didn't end up having OT today. The weather in St. Louis was pretty shitty and our therapist opted to head home instead. It works out to my benefit because she's going to come tomorrow and bring the main therapist (she did Robbie's eval- I REALLY like her.) so we'll have a team of experts here.

They seem to think the refusing to eat is a reflux issue. I'm not sure I agree.

It's not that I don't think he's still plagued with reflux- I do. he's still uncomfortable after each meal. You have to pat him for a good 45 minutes to settle him down. But I don't think that's keeping him from eating. He seems to want to eat, just somehow can't get his head together to latch onto the nipple if he thinks about it too much.

He has performance anxiety, perhaps?

We tried the cereal again tonight. I think he ate less than he did last night. There was one spoonful I'm pretty sure he got down, but the rest came shooting back at me. He got fussy and I ended it. My goal is to upset him as little as possible. I don't want to aggravate the aversion to food any more than absolutely necessary.

Anyway, your prayers are working. Keep them up.

--Trish

Monday, December 15, 2008

battles continue

I'm so exhausted I can't even think.

I'll try to make this all make sense.

Our pediatrician called back and her thoughts were as follows:

-doesn't think it's the reflux
-does think it's behaviorial- an oral aversion to the bottle
-suggested trying to start him on solids now. Make a thick paste
-suggested trying a sippy cup
-brought up putting a G tube back in
-promised we'll get through it.

She's always very positive, but I was still crying on the phone. He didn't take more than an ounce at any given time during the day. And that ounce was a fight.

I ended up getting him to gum at a Playtex Drop In bottle and pressed on the bag to squirt extra milk in his mouth.

There were a lot of tears today- both his and mine.

The OT called back this evening. Her thoughts were as follows:

-thinks solids is a bad idea
-he's obviously regressed but doesn't know why
-if we insist on trying the solids, thinks it should be runny
-thinks he'll hate the spoon

Tonight I went out and spent a small fortunate at Babies R Us buying every bottle I could find. I also got some rice cereal and some sippy cups.

I started the rice cereal very runny. He didn't seem to hate the spoon. Even swallowed a little. And smiled some. That was amazing since I'd been fighting for smiles all day.

He was still pretty fussy from hunger, so I thickened the cereal a bit and tried again. He did NOT appreciate that. He suddenly got hysterical.

I quickly made a bottle with a new bottle. I went with the Evenflow Comfi. The trouble was that they only had level 1 and level 3 nipples. He uses a level 2 Dr. Brown's when he'll eat.

So I tried the level 1. At first, he gummed.. and then he latched! And fell asleep almost immediately. He finally managed to very, very, very slowly suck down about 2 oz. I tried the level 3 nipple but it just ran out of his mouth. It's like a faucet.

It's hard to tell how much cereal he got because I started with an ounce of breastmilk and added cereal. Then more cereal, then a little more breastmilk, but I'd say he ate at least a half ounce of it. That's more volume than he'd had all day, so I was relieved.

He's still passed out cold in his swing.

The question now is if he ate from this bottle because he like the bottle or because he was falling asleep. He always eats better in his sleep. No fighting.

Time will tell.

Tomorrow I will call around and see if I can find some level 2 nipples and send David on the hunt. In the mean time, I'll pray he eats well through the night.

We have OT tomorrow. We'll see what she has to say.


Did I mention I'm tired?


--Trish

desperate

won't eat won't won't eat won't eat.

He's crying.
I'm crying.

I've left messages for our OT and our pediatrician.

Why is this happening now? He's always been such a good eater. Maybe not the biggest appetite when his reflux acts up, but he's always wanted to eat.

Now a nipple touches his mouth and he screams.
And then he screams when you take it away because he's starving.


The only thing that soothes him is to be patted. I'm well on my way to carpal tunnel.


Even now, I type a few words- I pat. I type again. I pat.

Please pray he eats.


Trish

Saturday, December 13, 2008

Follow up

I was going to answer in the comments, but there are enough questions, I think I'll just post again.


A few answers:

-His G-tube was removed 6 weeks after it was put in. You see, he was such a GREAT eater and gaining weight SO well we didn't need it.

I'll pause while you laugh.



Done?

Okay, moving on.

-while I have not tried a cup, I do sometimes get desperate and try dropper feeding. It inevitably chokes him. I don't think he has the association with "stuff in mouth=swallow." I have to give most of his meds in a nipple for the same reason.

-we just started occupational therapy on Tuesday. It's through Early Intervention. At the time of the eval he was eating great but we were hoping to get him to breast feed, so I opted to start therapy. Thank Goodness I did so we got started ASAP.

-yes, we "play" around his mouth all the time. One of his favorite games is where his cheeks, nose, ears, and tummy are my "instruments." Cheeks say "do do do." Ears say "ding dong." Nose says "honk honk." And his favorite- tummy says "toot toot!" Our OT also has us doing some face massage exercises before a meal.


Some girls on a preemie board I'm a member of suggested that he might be teething.

so this is what I did:

An hour before his last meal, he got a dose of carafate (it coats and bonds his esophagus) and a glycerine. It had only been a little more than a day since he'd pooped, but the doctor doesn't want him to go more than a day, thinking that any extra pressure keeps him from wanting to eat.

He pooped A LOT.

A half hour before his last meal, he got a dose of tylenol.

HE ATE THE WHOLE BOTTLE! First time in 2 days. I could have danced a jig.

About 45 minutes after he ate, he pooped the most explosive poop I've ever heard in my life. I couldn't believe he had anything left in there.
When I changed his diaper, it wasn't a lot of poop- must have been a LOT of gas. He's been pretty gassy and I've been giving him mylicon drops but apparently they weren't working that well.

The pooping cause puking (normal around here) and it was so ugly it was out his nose.

After some nose sucking, diaper changing and a lot of crying, he settled down and is currently sleeping in his swing looking like a little cherub.

Now, the question is why he ate. Was it the Tylenol? The empty bowels? Coincidence?

Who knows.

If only they could tell us what is wrong.

--Trish



Thanks to everyone for the support. It was

You're invited

You're invited to a party.
My party.

My pity party.

It's been a really rough week.
The boy just doesn't eat. We started OT this week and unfortunately, it's not a magic answer.

As much as I hated that fucking G tube, I've found myself wishing for it back. Usually he eats well at night but shitty all day.

Well, last night he even ate poorly all night. which means he won't even come close to his goal intake for the day.

He does this nom-nom-nom thing where he sort of gums at the bottle but doesn't actually suck on it. So he pretty much gets what can trick out of the nipple by gravity.

I've tried changing nipples, bottles, nursing- nothing works. When my boob touches his face, he screams. He hasn't nursed since November 25th.

I weighed him last night and after a couple of weeks of good weight gain, he's only gained 4oz in the last 8 days. We're back to suckage again. (8lb 10 oz) for the record.

You can see in the pictures with Santa how much smaller he is than the babies who started out in his realm. He's tiny.

I don't know what else to do. I'm the only person who can get him to eat, and now even I'M failing.

I've even tried not fighting with him. When he gets hungry enough, he'll eat, right? But no.. you take the bottle away and he cries- he's hungry! But he won't suck on it!


I don't know if it's an oral aversion or reflux or what. He had a few days that he seemed to be in pain again, so we upped his meds again and it seems to have helped. At least he's stopped screaming for an hour after every meal.


The thing is- he seems HAPPY. Everything else is great. He's full of smiles and laughs. He's really found his hands. Oh.. he LOVES to suck on those hands! If I could get his hands to squirt milk, we'd be in great shape.

I can't tell you how frustrating it is to spend 90 minutes trying to force 2 oz of milk into him, set him down and 12 seconds later, his hands are in his mouth and all you hear is slurp-slurp-slurp.

The other day I heard this loud yell and glanced over and he'd flung his entire body upward to whack at a mobile toy on his swing that was out of reach. He's determined. And strong.

But he's SMALL. Small small small.

Some days it feels like all I do is feed him. Or try to feed him.
I'll spend up to 2 hours trying to get SOMETHING in him.. then take a break to pump some more.. then start over again.

Last night I reached empty on the patience meter. I tried to get David to take over but it just didn't happen. I ended up leaving Robbie in his swing to go take a shower (the only place of quiet in the house.) and when I got out, he was still screaming. David couldn't be bothered to handle him for TEN FUCKING MINUTES.

I toyed with the idea of just leaving. But where does a woman with no income and a baby with a compromised immune system go at 9pm?

Apparently she goes to the recliner and pats and rocks.

Oh, and to add to my woes, I'm waiting to find out if I'm laid off or not.

I work for the AT&T. You may have heard that they're cutting 4% of jobs. That includes 5 people in my office. The 5 people with the lowest seniority.

I'm losing seniority because I'm on a leave of absence (not considered maternity leave, so it's not protected.) so I may be one of the 5. All week has been at least daily phone calls from the union trying to determine if I'm going or not.

It's not the end of the world. Last day on payroll would be March 16th, I'd get 12 weeks of severance and 6 months of benefits- we'd manage. But seriously.. it's just one. more. thing.

Oh yes, and let's see, there was the $1300 in taxes that I owed on a previous car from 2006 that I didn't know about until last week. That was fun, too.

I'm just tired. I'm tired of worrying about everything.

I just want Robbie to be normal. Average. A C student is fine with me.

But I just need him to EAT. Babies are supposed to EAT. And mine doesn't.

If you could please just say some prayers for Robbie to eat, I'd appreciate it.

I'll leave you with a short video of what our feeding sessions look like.


--Trish

Thursday, December 11, 2008

Bloggers

I read a lot of blogs.

Seriously.

I've been trying to add them all to my google reader/follow them all. I'm adding about 5 at a time since that's usually about as much free time I have between trying to get a baby to eat/sleep/take meds/smiles/learn and whatnot.

I read a LOT of blogs. I'm addicted to people, I think.

--Trish

Sunday, December 7, 2008

Santa Claus

As if quarantine doesn't suck enough, it means no pictures with Santa. We certainly can't run out to the mall surrounded by sick people and little germ factories children.

Fortunately we were blessed to be invited to a NICU graduate friendly home for pictures with Santa!

Gavin's parents (Carrie & Todd) graciously invited a bunch of the NICU babies to their home for a true milestone-our first meeting with Santa Claus!

I'm pleased to report that none of the babies cried at Santa. Though it was a room filled with preemies- there was much puke to be found.

We had a great time. It was great to catch up with everyone and to be amongst people who really get us.

A huge thank you to Gavin and his family for including us.

Without further ado- PICTURES!



Hi Santa! I was a good boy this year!



Hmm. I think Gavin must be related to Santa. Santa looks a lot like Gavin's grandpa!



If mommy leaves you cookies, will you leave me a tummy that doesn't burn?



Mommy says she was a good girl this year, too. She'd also like me to have a tummy that doesn't burn.



My first girlfriend! Elizabeth Grace & her mom Laura




I think Lola is pretty!



I'm sleepy but no way I'm going to miss a thing.




I'm just takin' it all in from the comforta of mommy's arms.




Friends rule



Wait! We've left out my two best girls-Lexi & Elizabeth Grace. Mommy says it's because we didn't think of it in time, but I think that's a crappy excuse. I'm outta here!



Damn, they caught me and blocked me. I've got to work on that crawling thing.



Right after I eat this nummy bib



Small, Medium, Large & Extra Tall




--Trish

Wednesday, December 3, 2008

Moving along

I confess that I have no idea what to write about.

It's not a terrible problem to have, really, but after having written every day all summer and at least several times a week since then, I feel a little lost with nothing to write about.

Robbie is now 6 months old. That amazes me, honestly. It really does seem like just last week that I was laying in a hospital bed begging for someone to tell me that he wasn't coming very soon.

He continues to amaze me. Seeing life through his eyes is truly a treasure.

He continues to find his hands. This is both adorable and frustrating because he would really like to have a full fist in his mouth at all times- including feed time. Despite how large his mouth looks when he's crying, there simply isn't room enough for a fist AND a nipple.

Of course, when I pull his hand out of his mouth, he communicates his frustration quite well.

Along with these amazing digits comes the ability to beat on things. His favorite toy continues to be the purple elephant on his play mat. It takes quite a beating. And he's really trying to grab it. Occasionally if I hold it still, he gets lucky and gets the trunk in his hand and he clings to it for dear life.

He's also getting a good grip on the wires for his apnea monitor and trying to eat them. I suppose it really is time to give the machine up. The pediatrician wanted to get rid of the machine 2 appointments ago but I've kickig my feet and looked pathetic enough that she's let us keep it. But she tells me that the next appointment is it.

The eating is better, but still not great. I bought a baby scale for home and after upping his meds last time, he gained 10oz in 8 days. Of course, in the 5 days since then he's only gained 2. Two steps forward, 1 step back. You'd think I'd get used to this dance.

I can't quite figure out what leads to better or worse eating. Sometimes he seems to be starving but will barely gum at the nipple and then seem frustrating that nothing comes out. Other times, I have to really work to get him to decide it really is time to eat and he'll suck so hard he drowns himself in milk.

I think everything is finally in place to begin OT. I'm hoping the therapist has some suggestions when she gets here. We spoke on the phone a few days ago and she gave me an idea or two but so far they haven't made much difference. Their focus seems to be on increasing his suction. But he has good suction- when he sucks!

He's also starting to figure out crying= being picked up. It astounds me how he can sleep through being carried around, manipulated into and out of clothes, but the moment he's laid down and still- BOING! Eyes wide open! Must be held!

He's also almost found a routine. Not a great routine for ME, but a routine nonetheless. He gets tired in the early evening. Somewhere between 6 and 8, then sleeps quite well until midnight. I've learned to take a nap then. Then he's WIDE awake for a number of hours until anywhere from 4-7am. If he gets sleepy at 4, I do okay. But much past about 4:30 and I'm a zombie. Then he sleeps quite well until around 10 or 11am.
The afternoon is mostly awake, with maybe a small nap. Sometimes 10 minutes, sometimes an hour and a half. That's usually the time I can pump and eat w/o having to stop 14 times to tend to him.

If I could combine that evening nap and the morning sleep together, we'd be in business. But so far, no luck. So I just go with it. Sleep when I can.

And on that note, it's 4:30 and he's asleep. A smart momma needs to take his lead and do the same.

--Trish