Thursday, October 30, 2008

Something Good


Perhaps I had a wicked childhood
Perhaps I had miserable youth
But somewhere in my wicked, miserable past
There must have been a moment of truth
For there you are, standing there loving me
Whether or not you should
So somewhere in my youth or childhood
I must have done something good.





Sometimes I just love him so much it actually hurts.


--Trish (with great thanks to Julie Andrews)

Tuesday, October 28, 2008

Good news, pictures, video

Robbie's days and nights continue to be wonky.

He was up all night again- finally falling asleep around 10. Of course, at 10:45, animal control was at the door with my dog. My darling husband had neglected to close the garage door when he left for work this morning. Fun times. Thank God for nice animal control guy. I didn't even have to bail him out.

In any case, Robbie then mostly slept all day. So did I. I guess if I can't bend him to my will, I may as well get flexible.

I don't know if that's setting myself up for trouble later or not, but in the mean time, it's the only way I can function.

A small tidbit of good news- Robbie had a couple of follow up lab tests last week. When we left the NICU, his TSH (thyroid) was still wonky. It had been since birth but kept improving, just hadn't gotten into normal. We also needed to check his blood count since it had been low, then boosted with a transfusion before the surgeries.

Both are normal! His TSH was dead in the middle of the normal range, and his RBCs were higher than after the surgery- so he's making his own!

No more blood draws!

And they're late, but the video at the end is worth it, in my opinion.

Pictures!!

Hmm. What kind of mischief can I find here?


Just hangin' out with my momma.


I'm a happy baby!


Smilin' in my sleeps!


Hey everyone.


All the busy patterns made me tired!


The cure for what ails ya.


Nom Nom Nom. Tasty fist!


On my boppy in mommy and daddy's bed.


Don't you wish you could sleep like this?


I see you!


I love my daddy.


I got to see my NICU BFF at the doctor on Monday.



And then we had my first playdate on Thursday!



And the video. Pardon my foot in the background there. I was sitting indian style on the bed with Robbie propped on my leg. But his smiles more than make up for my ugly foot.
video

--Trish

Wednesday, October 22, 2008

WB MA-L,S: NSFW

This post is rated WB-MA L, S, N. (okay, not really N. Neither of us really want that.) It is intended for mature (well, let's be honest. I mean old. I don't give a shit if you're mature or not.) old audiences only.

Let's talk about post-baby sex.

It's.. well.... different.

First of all, there is timing. Tonight David waits until Robbie is JUST waking up from a nap. (Yes, he did FINALLY sleep. At 5am.) When I said that I hoped Robbie would stay quiet, David's answer was "we can close the door."

I was aghast, "We're not going to leave him out here CRYING! SHEESH!"

"Oh." He seemed to ken from my disgust that he should be ashamed of himself, but wasn't QUITE sure why.

Men. I swear.

Not to be confused with timing, there is TIME. Robbie eats every 3 hours most of the time. So if he eats at 8, finishes around 8:30, has to be held upright for another 20 minutes, takes another 10 to settle down, then I pump for another 20, that leaves a grand total maximum of about an hour and a half to do anything- eat, sleep, clean up, shower.. or sex.

You see where I'm going with this. The days of leisurely foreplay are gone. There is no after-glow basking or showering together. No time for deep conversations speckled with low, intimate giggling. (Shut up! Yes it WAS like that before. A time or two.)

"You listen for the baby. I'm going to go rinse off." Romantic. I know.

And then.... There is my body. Now, I really don't have any crazy negative self image like 99% of the rest of American women do. I used to. I spent years hating myself, convinced that no one would ever love me because who would even want to look at me? But somewhere along the line I just outgrew it. Maybe it's because I married a chubby chaser. I don't know.

I don't think I'm any prize, believe me. I know I'm fat. And not traditionally pretty by any means. If I could snap my fingers and be thinner, have a smaller nose and thicker lips, I would. But I don't hate myself because those things aren't true. I don't hide under too-big clothes (well, I do now because I've lost 60 pounds since Robbie was born, but that's because I'm too cheap and too busy to buy new ones) or hide in the dark.

As a matter of fact, I'm actually topless most of the time at home. Between trying to nurse and pumping, it's just easier to take my shirt off. So I spend a good half my day at least half naked. The other day I found myself cooking myself some breakfast naked and remembered the sage advice "never fry bacon naked." Fortunately I was having eggs and oatmeal. Low splatter risk.

But yet, I definitely DO feel differently about my body. And it feels differently, too.

Now, my hoo-ha experienced no real trauma. My bikini line (or in my case- my granny panty line) did, but it's not generally too important in the bedroom. But my hoo-ha, well, it feels different. There. I said it. It feels different. It's tender. I don't know why. But it is.

And then there are my boobs. Well, I say "my" boobs, but really, that's the trouble. They're not mine anymore. They belong to Robbie. And Medela. Sure, they're fuller- LITERALLY. But they're the antithesis to sexy to me.

They swell and get sore. While they don't really leak, if squeezed, I can shoot a stream several feet in front of me. They're closer to chinese take out boxes than sex objects at this point.

This is troublesome for a woman married to a boob man. He wants to touch them. And squeeze them! Whatever the antonym for aphrodisiac is would describe my feelings about them. Sexy time thoughts do NOT include "DON'T TOUCH THEM. OH GOD, NO! Shit, WHAT IF I SQUIRT HIM? Maybe if I just smash my body against him, he won't realize I'm trying to fight the urge to punch him. OH NO! IS THAT SWEAT OR MILK? Shit, are we done yet?"

Finally- and this is the funniest part- I'm scared to death (see there, that's a pre-eclampsia joke!) to get pregnant again. Yes, yes, I know- 2 1/2 years, 2 miscarriages, 6 IUIs, 4 1/2 million sperm, I SAID I KNOW.. But what if. I mean, the fertiles keep telling me "... then BOOM! She got pregnant right away!" Even my trusty OB gave me the speech. It could happen.

Our original plan was to just never go back on birth control. I mean, the chances of us conceiving on our own again were slim, and if we did, well, YAY FOR US.. But that was before that whole pesky threatened stroke-seizure-organ-failure-lost-baby thing.

Since then I don't know WHAT to do.

I'm not sure we'll ever want to try for another biological baby.

And there is the breast milk thing, so my options are limited anyway.

I'm not really keen on an IUD and my doctor didn't recommend it anyway because 1) my cervix never dilated and 2) my vertical C section scar can apparently get snagged on it. (Go ahead. Take a moment to cringe)

That leaves the mini-pill. I can't remember to pee some days, there's no way I'm going to be good enough to take it in a timely fashion.

So mostly we've been using the ever popular too-tired-to-even-think-about-trying-to-do-it method. But you know, it was his birthday.

Suddenly I've fallen backwards 10 years (okay, closer to 20. DON'T JUDGE.) and am thinking "Oh no.. don't let me get pregnant.. don't let me get pregnant.. don't let me get pregnant."

The chances of that happening are slim, yes. But so were the chances of us getting pregnant, staying pregnant, getting pre-e, getting pre-e as badly and as early as I did, and we won't even get into the rarities that Robbie's health (both good and bad) has brought into our lives.

And of course, all of this is what goes on in my mind when David gives me the old "Hey.. ya wanna?"

I'm sure his thought processes go something like "I'm hungry. How about a hot dog? A hot dog looks like a dick. Ooh.. my dick. I should see if Trish wants to..."

Now all of this isn't to say that sex isn't great. I mean, you know, parts of it still are. But it's definitely a whole new world in there.. err.. out there..err. in the bedroom, I meant.

It's complicated. I don't think I'm mature (or old) enough to figure it all out.

--Trish

Tuesday, October 21, 2008

LONG DAY

I always knew Robbie was clearly advanced. I just didn't know we'd fast forwarded to college.

Ever have a night that you are missing a few pieces of? You vaguely remember losing some of your clothing, waking up sore but not sure why? Maybe you had puke in your hair? You're starving, but the minute food touches your stomach, you want to heave again?

Maybe it was just me. For what it's worth, I gave up vodka when I was 19.

I think Robbie is hungover.

He saw Dr. P today. She had lots and lots of truly wonderful things to say.

-He's up to 6lb 9oz
-If his weight gain continues as it has, he should catch up around a year old
-his head is giant. She says usually the head catches up first, then weight, then length. And he's right on track that way.
-we could have stopped the apnea monitor today but I hesitated, so she says we'll keep it another 4 weeks, then we're done.
-because of the great weight gain on plain breast milk, we officially are no longer required to supplement with formula. The boob juice is doing its job!
-his ears look great

However, she also had to do 2 terrible things:

-Remove a chunk of ear wax to she could see those great eardrums
-give vaccines


The first set off an ugly reaction. REAL TEARS, people. Well, okay, just one. But it was fat! A BIG, FAT, REAL TEAR. My heart was shredded. It was that hysterical cry of WHY, WHY, WHY would you intentionly hurt a helpless, tiny, adorable infant such as I? Even his beloved binky was no comfort.

I finally held/rocked/patted him into quiet. But the minute I pulled him away from my body, he fussed. If his butt hit the exam table- hysterics! Pull him back to me- quiet. Back to the table- hysterics!

Dr. P says he's quite intelligent. Didn't take much to get the association of TABLE BAD. MOMMY GOOD.

For that reason, she had me step out of the room while she had him vaccinated. Two oral and three IM. When he had his 2 month shots, you'd never have known it. He was totally fine. She recommended some tylenol, but I wasn't too concerned.

I went to make our next appointments (1 month for a weight check which might get cancelled if his weight is good at his GI appointment in a couple of weeks) and could hear him screaming from the front desk. I took deep breaths and assured myself that he was fine.

By the time I got back to the room, he was already calm again. He looked pissed, but he wasn't yelling. Honestly, the look on his face made me laugh. "I do NOT like this place very much. Very poor service. I'd like to see the manager."

Robbie's NICU BFF was in the next room, so we visited. As usual, they wore matching outfits. We were invited to a playdate and movie night at their place. (SOCIAL INTERACTION. I MIGHT HAVE A PANIC ATTACK!)

Then we headed to David's work. He's in an office with just him and his secretary who had a preemie herself (who is now an adult who had a preemie HERSELF) so she's cool with the no-touchy-my-delicate-baby thing.

I fed Robbie while David ran to Walgreens for some Tylenol. Then I visited the Honda dealer a block down because I'm considering trading my car in for a cheaper one. (We're still trying to see if we can arrange finances for me to stay home permanently at some point.) It was David's b-day today, so got to wish him a happy b-day as well.

I then picked him back up. He hadn't eaten well, but figured it was a combo of stress and over stimulation. He'd slept while I was gone and slept most of the way home. He started crying about 15 minutes from home and didn't stop for the next 10 years. Or something like that.

All afternoon, he fussed, he cried, he whined, he puked. He would barely eat, and what he DID eat either boiled out of the hole in his stomach or his mouth. Mid afternoon, he seemed warm. I took his temperature. 100.4 under the arm.
I stripped him down to a onesie and gave him a few minutes to cool down. 99.5. Still too warm.

Called the doctor. She said it should run its course in a day. I went back to rock/pat/sing/begging. I'd only slept 2 1/2 hours, so it was a rough one.

When David got home, he took over while I made him a FABULOUS birthday dinner. He'd settle down for a few minutes here or there, but mostly he whined and cried. David tried unsuccessfully to put him down several times.

Eventually I took over again while David ate dinner. I finally managed to get him in our bed, on a pillow and semi calm. Gave him some pedialyte hoping to settle his tummy. After he ate a little pedialyte, he seemed hungry. For the first time all day- hungry. I had David make a bottle and he actually ate and got really drowsy. David took over so I could eat and Robbie FINALLY slept. It was 9pm.

I really don't know how the kid does it. David must have said 100 times "he HAS to sleep eventually.."

Of course, he slept until 11 and woke up hungry again. I fed him and tried to get him back to sleep. No luck. It's now 4:40 am and he's still going.

It's taken me more than 2 hours to write this post. We've changed clothes twice (belly leaking) played on the play mat, rocked, patted, sang. I've sat on the couch and cried. He's currently in his crib grunting in frustration.

I really don't believe in cry it out. (At least, not for babies. It worked fairly well for me earlier.) But I'm not sure if grunt it out is part of that.

I had to pump, so I went for it.

I figure eventually he has to sleep. He's a 4 month/6 week old baby who has slept less than 6 hours out of the last 24. That's not normal. So he HAS TO SLEEP. Eventually. It's the best cure for a hangover.


--Trish

Monday, October 20, 2008

A quickie with pictures

His G tube site is still leaking. They told me it should stop in 2 weeks. Two weeks is tomorrow and the last 2 mornings I've had to change his clothes because he was soaked through.
If it continues through 6 weeks, it means another surgery. WE DO NOT WANT THAT.

He's been puking more than ever, too. We see the pediatrician in the morning, so I'm hoping she'll have some suggestions for the reflux war.
But if you could say some tummy healing prayers all around, I'd appreciate it. And think fat thoughts. He's not been eating as well as he usually does (I assume because his tummy feels yucky) so I'm afraid his weight is going to be cruddy.

Your reward for good prayers, thoughts & vibes- More pictures!!

--Trish



Napping in mommy's bed with Pierre and my sister Contessa:



Pierre chases the nightmares away:



Mommy loves my chubby cheeks:



And chubby fingers:



A half smile in my sleep:




Tummy time makes my neck muscles strong. This is me turning my head to the other side:


YAY tummy time!



Daddy plays, too!







Sometimes, I'm not so happy:



But I get over it quickly:



This weekend my great-grandma came to visit. She likes my brother Kenzie:



But she loves me more:

Saturday, October 18, 2008

Houston, We have a smile




Pardon the bad angle. It took all day to get that and handling him while maintaining eye contact to get him to smile while also aiming a camera is challenging.


More tomorrow.

--Trish

Friday, October 17, 2008

SMILES!

HE SMILED AT ME!

The last few days I've been seeing more and more smiles. He's smiled at his bottle & at his pacifier. Towards the end of a feeding, he gets smiley. He's full and content and I, of course, am still trying to get him to eat more so I stroke his lips with the bottle nipple and he'll grin. I'm not sure if it tickles or what.

I wasn't sure any of those things counted as social smiles.

But this morning just as we started a feeding, he was antsy. Not fussy, just too busy looking around to be bothered to eat properly. So I put the bottle down and just looked at and talked to him a little while.

He was making happy baby sounds (not sure it counts as cooing just yet. More like happy squeaks) so I started copying them.
At one point he said "Wah." (sort of rhymes with law, but breathier) So I said "Wah. Wah." and he smiled.

I giggled "You smiled?! For Mommy?"

And of course, did it again. "Wah. Wah."

ANOTHER SMILE!
It wasn't a fluke!

He was looking me in the eyes and he was smiling.

I giggled and then started crying because I'm such a sap.

Then we did it 3 or 4 more times. Worked every time.

Pure Joy.

We finished the feeding and I tried again. It worked again.

Of course, then he nodded off for about 15 minutes and woke up puking (love that relux.) so there weren't so many smiles then.

I tried again a few minutes ago and mostly he just looked at me like he had no idea what was wrong with me.

But I don't care. I can live on the smiles from earlier for at least a decade.

--Trish

Thought Swirls

This used to be a blog about infertility.

Really, it was about anything on my mind, but as that was infertility pretty much all the time, it was a blog about infertility.

Since May 31, it's been the Robbie Chronicles. Which makes sense, again because it is a blog about anything on my mind and of course Robbie is always on my mind. (Shit Fire, I'm going to have Willie Nelson in my head for days now.)

But I do sometimes think about other things.

The problem is that by the time I sit down to write about them I'm not thinking any more.

As I drive I tend to compose blog posts in my mind. That probably makes me crazy. I don't think about what groceries to get or how I should call my grandma. I think "Ohh.. I need to tell the internets about [insert not-really-amusing anecdote here]"

Tonight I'm surprisingly awake. Probably because Robbie and I slept until almost 2pm. Of course, we'd been up until 5, and he got up to eat (and me to pump) several times in there, but still, we lazed in bed until 2.

And I have so much on my mind. If only I could sort it all out.

I wanted to post something profound about the loss of my two babies yesterday. It was Pregnancy & Infant Loss Remembrance Day. And I remembered my babies. I think of them often.

It's a very strange thing to know that if either of them had lived, there wouldn't be a Robbie. I mean, theoretically, my first baby was due in August '07, and I conceived Robbie in December, so he COULD have, but realistically, he wouldn't have.

And I'm so glad to have Robbie.

I almost feel disloyal to my lost babies at how glad I am to have my Robbie, but that seems crazy, too.

Perhaps it was Robbie's soul trying to come and trying to come and finally getting here. I don't know. I'm not a deep theological thinker. I leave that to people wiser than me.

All I know for sure is that I love my lost babies even now. I wore their remembrance necklace to my baby shower a few weeks ago. I wanted to have them with me somehow.

And I wanted to post something about the debates. Specifically about abortion. But I have no idea even where to start there. And of course, it's such a volatile subject. Not that I mind volatile. In fact, most people who know me well would probably say I quite like it. (That's not entirely true. I really don't seek confrontation. I just don't fear it, either.)

I'm a pro-lifer who thinks it just can't be legislated so I tend to stick my head in the sand about the issue when it comes electing people.

I think it's wrong to kill babies. Black and White, yes?

But then I think, too, that had my Pre-E struck only a few weeks earlier, I would have had little choice but to have done exactly that. Or died. Which would have killed him anyway. Suddenly I'm in grey territory.

I said as much to David last night after the debates. He's not one to see in shades of grey and I clearly made him uncomfortable. His thoughtful answer was "But it didn't."

When I said that even at the 26 weeks that we made it, had Robbie not lived- which was a very real possibility- I could have been considered to have had an abortion. He looked at me like I was crazy. I explained that I ended a pregnancy to save my own life.

He said that there was no choice, if my life had ended, Robbie's would have, too. I told him it didn't matter. That while in THIS country, even the most extreme pro-lifers usually allow an exception for the life of the mother, not all of them do, and in many countries, that's not the case at all.

I told him it didn't matter how reasonable it was. If Robbie had died, it would have come down to the fact that I terminated a pregnancy to save my life. He simply shook his head and walked away.

I wasn't really trying to debate with him. I just don't know how to shake out my feelings on the whole matter.

Dead babies are bad. That much I know. How to make less dead babies is just something that I think is far too complicated for me to try to figure out how to legislate.

There are lots of topics that I want to discuss that I feel like deserve their own post.

I want to talk about circumcision.

I want to talk about how strange it is to suddenly be scared of getting pregnant when I spent so long trying to get & stay that way.

I want to talk about the sorrow I feel every time Robbie's monitor goes off. (Twice in 5 minutes last night around 5am.)

I want to talk about how much better David is doing.

I want to talk about how sick I am of eating chicken.

I want to talk about Synagis shots and health insurance and work stuff and financial woes and trading my car in and cats that pee on bathroom rugs and dogs with tumors on their feet and aunts who smoke but want to visit a baby with a history of chronic lung disease.


But instead, I sit down and think "I should show everyone that cute picture of Robbie." And I do. And then I make a bottle, feed the kid, rock/pat/sing/wipe-up-puke, pump, try to sleep, wake, make a bottle, feed the kid, rock/pat/sing/wipe-up-puke, pump.. you get the idea.

Just please know that Infertile Trish is still here. And I'm going to try to talk about things other than Robbie again someday. I think.

If you don't really care to hear my inner workings, you're always welcome to view just Robbie's Blog for status reports and pictures. The same information is posted here. Robbie and I are too connected for the two not to cross over. But his blog tends to be more succinct.

I started it mostly for family, friends and coworkers who I wouldn't necessarily want to invite to read the details of my quest to motherhood. Not that I'm ashamed of any of it, I'm quite out of the closet to everyone. But sometimes I want to bitch about the ignorant thing one of them says and I enjoy having this space as just mine.

And Robbie deserves his own as well.

Hopefully there are still some of you out there that like Infertile Trish even a portion as much as you like Robbie's Mom.

And with that, it's time to put that hat back on. Time to make a bottle.

--Trish

Monday, October 13, 2008

Pictures!


Hangin' out on my play mat:


Who is that handsome boy in the mirror?


Toys!


I win!


Hi mom!


This is about as naked as I get these days:


My tummy is almost healed. Isn't my umbilical hernia gross?! It creeps mommy out.


Pick a hand..


Look into my eyes


Has anyone seen my hands? I seem to have lost my hands.



Duuuuuuuude


Sunday, October 12, 2008

Weekend Update

What is the solution to an overstimulated baby?
Other than time, I mean?

It's 4am and he's FINALLY asleep after having been awake since well before midnight.

He was clearly tired, but just flat refused to go to sleep.

The part that amazes me is that when he gets like this, he's really not that cranky. He wants to be held or patted or sang to or have his pacifier replaced every 3 minutes, but really, he's not really crying- just whining, really.

Me, I'm usually cranky. Fortunately I had napped in the recliner for an hour right before we woke up, so I had some energy stores to get me through, but holy moly.

I was a kid who fought sleep. Karma is getting me!

In other news, my domperidone came in today. Let the milk flow begin! Oddly enough, I had the best production today that I've had in several. Maybe it was the placebo affect. I knew it came in, so things must be better?
Of course, it still wasn't anything to write home about- just under 12 ounces. Considering he eats closer to 16, we need more. But yesterday I made less than 9, so 12 seemed nice.

Lazy Leftie has been achy again. I honestly don't know what the deal is. My leading theory is it's a clogged duct, but I'm really just guessing. I don't have any of the other symptoms of mastitis or anything, but damn leftie burns sometimes. When you're walking around with an ice pack on your nipple, you know something is odd.

Speaking of my boobs, I had a moment of bemusement during the EI meeting. Mind you, I had 4 people in my living room, plus Robbie and me. At one point, the OT is going through her evaluation and makes note that I have very large areolas and Robbie can't get a large percentage of it.

I couldn't help but laugh. "Glad you all know I have giant nipples." Fortunately all of them have children themselves- one is actually pregnant with her 5th. They just chuckled and said theirs were the same.

But still. I wasn't expecting commentary about my freakish boobs at Robbie's developmental meeting.

This is why parents embarrass their children. After child birth, we just have no more concept of normal conversation.

So now I'm just way out of the closet. Internet, I have giant nipples. And no, it wasn't a pregnancy thing, they were that way before. To be honest, they got lighter while I was pregnant. I never got that darker/spreading thing. Thank goodness, because I don't think I'd hate for each of them to just be one giant areola.

Anyway, back to Robbie.

Other than his refusal to sleep tonight, he's doing okay. The leaking continues to improve, though today you could hear the air coming out of it. I can't decide if it's because he's gassy today or if it was always happening and now that it's closing up a lot, the leaking "squeaks" more. But I have to tell you, it's REALLY strange to hear your son's stomach squeak air out of it every time he tenses up.

I'll be glad when it is totally healed.

Also- he seems to have reached a point where he can mostly maintain his temperature.

That was one of the biggest challenges we had when we got home. He was still only 4 1/2 pounds, of course, and got cold REALLY easily. We'd literally have him in a long sleeved onesie, socks, a fleece sleeper, double swaddled, covered in a heavy blanket, with a hat on, with the space heater going and he's just BARELY be warm enough.

Gradually we were able to go without the hat. Then turned the temp down on the space heater. Then could go without the heavy blanket.

The last week, and particularly the last couple of days, I've been able to actually leave him out of a blanket completely unless he was in his swing or something.

Today he's been able to stay warm even in his swing without the space heater going.

I still take his temperature with nearly every diaper change. Months in the NICU made it a habit as part of his cares. But I feel like we're finally reaching a point where he's almost behaving like a regular newborn. Never mind that he's actually 4 months old, I'll take it.

I'll try to get some new pictures up tomorrow. For now, I must sleep!

--Trish

Thursday, October 9, 2008

Early Intervention

The Early Intervention team was just here.

Basically they left it to me. He is not measuring behind his adjusted age at all, and actually ahead in a few areas.

He was actually evaluated at about 3 weeks adjusted. (He's 5 weeks adjusted today.)

He evaluated as follows from the Developmental Therapist:
Gross Motor: 1 month
Fine Motor: 1 month
Relationship Inanimate Objects: 1 month
Language/Communication: 2 months
Self-Help Skills: 1 month
Relationship to Persons: 1 month
Emotions/Feeling states: 2 months
Coping Skills: 2 months


The Occupational Therapist only shows the following:

Grasping: 1 month
Visual-Motor Integration: 1 month


but commented that the scale they use isn't really set up to show everything that she'd like noted.

Her comments:

Robert is an adorable 17 day adjusted male that has a loving and supportive home. He demonstrates developmental strengths that include alertness, emerging flexion, good appetite, and natural reflexes for prematurity. Robert will benefit from increased suction while eating, controlled swallowing, monitoring nipple flow, continued breast feeding skills and continued strengthening.




While they were here, he was awake and getting ready to eat, so they all got to see him in a perky mood. There were lots of oohs and ahhs and how alert he was. He was clearly curious about all the activity. (There were 4 of them.)

I opted to go ahead with therapy. While I don't really think he NEEDS it (yet) I'm more comfortable having too much therapy than too little.

We'll just go with OT once a week for a while, then spread it out further as things proceed. The main thing is that they will help with the breastfeeding which is my biggest goal at this point.

On an unrelated note, Robbie has thrown up a small amount of blood twice now. Once yesterday and once today. It's just been a small brown streak but it's really not what I want to see.

I spoke to the pediatrician who agreed with me that it's probably his gastrostomy healing, but we'll keep an eye on it. For now, he gets more Mylanta (fortunately he loves the stuff.) If it continues, we'll up his Pepcid. And if it continues after that, he gets an extra visit to the pediatric GI specialist.

But if you could send some good vibes for a healthy tummy, I'd appreciate it. I know that eventually this will all seem a distant memory, but these constant feeding issues are really exhausting and worrisome.

--Trish

Wednesday, October 8, 2008

Robbie & the Paci, take 2

I had a request to see Robbie and his pacifier again. As I'm always glad to show off my kid, I was happy to oblige. Here we go.

video

Improvement

Well, his stomach has definitely improved.

I kept him on a light diet most of yesterday. Or, well, I tried. He's been taking 50-55cc per feeding lately. I was trying to give him more like 45. He was having none of that. I kept having to go back to refill to appease him.

He was up all day. He had woken at 7:30 and not slept until long after we got home. Around 2, he nodded off for a bit. I woke him to eat at 4 and he went right back to sleep. Then woke again at 5 and was up until almost midnight. He'd had a few good screaming fits, but really, by the late evening, he was in a good mood, just refusing to sleep. He was clearly overstimulated. I patted, I sang, I read, I swaddled, I unswaddled, I massaged. I turned everything off and left the room. He'd sleep for a minute or two, then wake up and cry until you held him. Then he'd show you his happy face and stare at you all bright eyed.

I was a zombie.

Finally at midnight, I gave the Swaddle Me a try. And he was out like I'd drugged him. Seriously- I'd already tried swaddling, but for whatever reason, this thing worked like magic. And he slept all night. He woke to eat, of course, but he slept 4 hours, ate, slept another 4 hours, ate again, and then really dozed almost all day. He definitely needed it.

So did I. I got some sleep myself, and managed to actually do some laundry and clean up the house. Amazing.

And the leaking improved. I've changed his dressing a few times, but at this point, there's barely just a little discharge. I can still hear air squish out of it when he gets riled up, but no more clothes soaking. And it looks SO much better.

I'm still paranoid. Robbie's history has taught me not to go counting any unhatched chickens. But I'm cautiously optimistic for the time being.

I've been feeding him unfortified breast milk only. As much fresh as I can muster. I figure while he has a gaping (well, it's way less gaping now) hole in his stomach, at least the stuff leaking out of it can have antibacterial properties.

But soon I'm going to have to add formula to his diet. Not just breast milk fortified for calories, but actual formula.

My supply is complete shit. If I pump for 30 minutes and mash the crap out of my boobs, hand expressing until my skin hurts after pumping, I can eek out 40cc. As I said, he's taking more like 55 at a feeding.

Fortunately I had a ton in the freezer from when he was first born. But it's gone fast. Really fast. I'm down to 40 bottles in the freezer. Sounds like a lot, but considering I had probably 200 when he was discharged from the hospital a month ago, you can see why I'm nervous.

I'm pumping as often as humanly possible. When the choice is sleep, eat or pump- I pump. I'm drinking by the gallon. I'm even eating pretty darned well, all things considered. Sleep.. well.. I do what I can.

I'm taking Fenugreek by the handfuls.

My last hope at this point is the Domperidone that I ordered. It hasn't come in yet but I'm hoping it helps. A lot.

But int he mean time, once his tummy heals, I'm going to try giving him 2 bottles a day of half breast milk/half formula. I'm not sure how his stomach is going to handle it.
Even with the fortified breast milk twice a day, every couple of days I have to give him a break and cleanse his system a bit so he's not miserable.

He just does not tolerate formula well.
And I really don't like giving it to him. If my stupid freakin' boobs would cooperate, it wouldn't be necessary.

After such a great start, they've really dwindled.

I suspect it's hormonal, since my periods have returned. I had one at 8w post partum, another at 15 weeks, and now again at 18 weeks. I find this sign of fertility incredibly infuriating. For more reasons than I even care to get into. I'm sure you can guess.

So, keep praying for hole-healing, and weight gain. And maybe we can throw a cow on the spit next to all the moose. We need more milk.

--Trish


Oh yeah.. A few PICTURES!!!!

Not quite sure what those lights are...


But I think I like 'em...



My new playmat



Just checkin' it out


I wonder how it tastes?




Sure makes a nice place to sleep!

Monday, October 6, 2008

buttonless

We've just returned from the surgeon's office.

He's now G button free.

I wish I could say I'm elated, but it's rather bittersweet, heavy on the bitter right now.

Taking it out was about a 10 seconds procedure.

But it leaves a giant gaping hole in his belly- directly into his stomach.

He had to have an empty stomach to have it removed, so of course, he was starving in the office. Surgeon said I could feed him immediately. So I did just that. Soon as he and the nurse walked out the door, I gave Robbie a boob. And he took it.

Of course, then the nurse came in and acted like I was insane for feeding him there. (She's old. Really old. Like hand shaking so much she couldn't get the surgical tape loose and the doctor had to do it. I found that odd. I like old people, but seriously.. RETIRE.) Anyway, she shuffled me back to what seemed to be the surgical library area. Which was fine. If the waiting room wasn't filled with children (that's the trouble with it being a PEDIATRIC surgeon's office) I'd have gone out there, but I was trying to avoid people as much as possible.

So anyway, he ate (a bottle of breast milk) and then we got ready to go. When I pulled him away from where I'd burped him we were both soaked.

So much of his feed had leaked out of his stomach that it was through the gauze, his onesie, his sleeper, my t-shirt and the undershirt under it.

I had to walk passed the surgeon as I left, so I showed him my soaked shirt and said "THIS MUCH?" and he said it would improve in a few hours.

Of course, I got him home and put some dry clothes on him, along with clean gauze. His stomach looks disgusting. If anyone is interested, I can post a picture, but it's pretty gruesome.

He was starving again, so I fed him half a feeding, hoping that less pressure would leak less and still make him feel like he'd eaten.

He promptly got the hiccups and screamed bloody murder for a while.

I promptly cried and apologized to him about 300 times that I'd let them do this to him in the first place.

I'm not sure he knew quite what to make of me crying as he stared at me rather quizzically for a bit. But at least HE stopped crying.

As I've typed this, he's finally fallen asleep (he'd been up since 7:30 this morning) so I'm going to pump some milk and hopefully join him in a nap.

If you could pray that this thing closes up on its own quickly, I'd really appreciate it. I have no small amount of mommy guilt for letting them do this to him. The sooner he heals and the sooner I know he won't need surgery again, the sooner some of that will dissipate.


--Trish

P.S. I do have weekend pictures, but I haven't had time to get them uploaded just yet. They are forthcoming, I promise.

Saturday, October 4, 2008

Smiles

I *THINK* he may have just smiled at me.
Maybe. Unless it was gas. Again.


*updated before I could even finish this post* He just farted a very proud, manly fart. It was gas. Oh well.


Several people commented on this photo being a smile. It's not really a SMILE. It's more of a happy look. You can certainly tell when he's happy. He's quite perky and bubbly usually in the middle of the night/early morning (say between 1am and 5am) And then again sometime mid morning/early afternoon. He just gets bubbly. You know he's happy, but he's not really smiling.

Smiling is a milestone I'm really looking forward to. Some positive feedback would be lovely.

I commented yesterday that I do feel a bit like a slave. I'm at his beck and call and if I do anything that displeases him, or do it too slowly- he screams his displeasure.

I hook myself up to the God Forsaken Cones 8 times a day trying to increase my supply to make the milk that he keeps either screaming while he eats, or spitting back at me. (Have I mentioned that reflux is The Devil? REFLUX IS THE DEVIL.) If I try to nurse him when he's not in the mood, he screams and slashes at my breasts with the teeny razor blades that some call fingernails. I don't care how much I file them, when he gets a bit of aerola, it hurts. Significantly.

Now, of course, looking at his handsome face is a reward. Of that there is no doubt. But at this point I really don't even know if he LIKES me.

Earlier tonight we had a not-so-good feeding. Sometimes I swear he's too hungry to eat well. It had only been 3 hours since he'd eaten, it wasn't as though I let him sleep too long and we woke up starving. But he was anyway. Then he tends to guzzle. Guzzling leads to lots of air in the tummy and lots of choking. Which leads to screaming. Which leads to lots of air in the tummy. Which leads to pain. Which leads to more screaming. You see where I'm going with this?

We've been using mylicon drops but frankly, beyond the fact that he likes the cherry flavor so he quiets for a moment in a way that says "Hey.. that shit's Gooooooooodd... oh wait.. I was angry about something.. oh yeah! Back to screaming now.." I don't think they do much.

A friend recommended Gripe Water so I sent the husband out for some tonight. (To his credit, I send him shopping at least 3 days a week. He doesn't even sigh at me any more. He actually emails me to say "send the list.") So tonight during the guzzling-screaming-choking debacle we gave it a shot. He spit it at me. He didn't swallow it and reflux it.. he pursed his lips and said "SCREW YOU I'M HAPPY WITH MY SCREAMING THANK YOU!" Fun times.

I gave it another shot before his last feeding and it went much better. I have no idea if it helped or not, but he didn't fuss much after his feeding and other than some whining in his sleep and has been pretty quiet since. (I know you're asking why I'm not sleeping, then. I actually got to nap earlier!) I'll take what I can get.


My point is that there is lots of negative feedback. (And it's not as subtle as an unhappy look.) but very little positive feedback.

And since I'm essentially a shut-in, he's really my only companion these days.

And I really don't know if he likes me.

I'm not sure in his shoes that I would like me. I mean, sure, I feed him, but feeding isn't always pleasant since with food comes choking, gagging, and puking. And I'm forever shoving a thermometer under his arm (we're still having trouble keeping him warm enough) and wiping his butt with a cold wipe.

Sure, I seem to have the magic back-pat, but David is quickly mastering the right speed & firmness so I may lose my monopoly on that as well.

I was actually almost relieved tonight when during the bad feed when David said "Do you want me to try?" (YES. FOR THE FIRST TIME IN FOUR MONTHS HE SAW A PROBLEM AND OFFERED TO HELP WITHOUT ME SAYING ANYTHING. Pardon the caps. The moment required some excitement.) that he continued to scream. It's not just me. He hated everyone in that moment.

Now, I realize that Robbie isn't here to meet my need for approval. And generally speaking, my need for approval is fairly low. I usually like myself quite a lot, so I don't require much. But it would be nice to know when I'm doing something he appreciates just so that I know to do it more.


So a smile would be great. I'm told that's a 4-6 week milestone. He's just over 4 weeks adjusted. So, you know.. any time now, bud.

Speaking of milestones, he's actually doing quite well.

The OT was significantly impressed with him yesterday. All of his reflexes are present and accounted for and things he should be doing by 1 month adjusted are right on.

He makes eye contact, follows interesting things, can lift and turn his head while on his tummy, and actually has exceptional head control. I credit the head stuff to all the kangarooing we did in the NICU. It's basically tummy time with extra benefits. So he was getting 3-4 hours of tummy time every day.

The OT who came is also a lactation consultant and she was very helpful on the nursing front. She thinks he'll do it.

He has some sucking problems. Basically he tends to use his hard palate to press on a nipple instead of actually using his tongue & cheeks to suck. That works great for a bottle, but on the boob, he has to do it the right way. He CAN do it, but it's not what he's used to and requires more effort. She thinks that's why he gets frustrated and gives up after 5 minutes most of the time.

He has a really great latch, it's just the motion that he needs to work on. She gave me a little exercise (basically, he sucks my finger and I press on his tongue) to help. But she thinks he's really on the cusp of being able to really, really nurse.

It was actually really a relief to find out that there is a reason we're struggling a bit that isn't "He hates your boobs." She thinks that he may be a little bit nipple confused as well. But he does seem to want the boob a good portion of the time, it's just a matter of making them work. She thinks he will get it, though.

She said she sees babies months older than Robbie who just don't want anything to do with the boob. He's interested and has a good latch. She thinks that with age & growth, he'll just get better and better and that as long as I'm willing to continue, she really believes he'll eventually be a full time nurser. (Weight gain permitting- he may always need some bottle feeding so we can add calories.)

She said he's actually developmentally better than almost any preemie she's seen- especially a 26 weeker. She said she didn't want to dismiss my concerns or frustrations at all- they were quite valid- but that there are a lot of moms of preemies out there that would kill to be where we are.

Now, of course, that doesn't mean he can't have delays later. But for now, we're celebrating good stuff.

Our official EI (early intervention) plan meeting is next week. They'll consider the therapists recommendations and set up a plan. I believe that basically they'll recommend he just continue to be evaluated regularly. No actual therapy yet. That's fine by me.

The evaluations are free, and really, it's sort of like getting a bit of therapy in there, too. I mean, the exercise for his suck is a prime example. That's not really a "delay" that needs to be worked on.. but I still get the benefit of an expert.

Between all of that, the Zoloft, the fact that David has actually been helpful AND the fact that Robbie slept almost 4 hours in a row last night (I got to sleep 3 1/2 in a row!)- not to mention all the wonderful comments and emails from all of you today- it was definitely a better day.

I'm still tired, of course, but I'm bolstered.

Now if he'd just smile.

--Trish