Sunday, November 30, 2008

Yet more pro pics

My personal favorite:



Some others I love:


































Friday, November 28, 2008

Thanksgiving

I posted a large thankful post on Robbie's Blog.

Of course, those are only a few of the things I have to be grateful for. There are many more:

My loving husband
My job
David's job
Good health insurance
Amazing friends
The Internet
Good TV
Bad TV
Great food
Supportive Family
Indoor Plumbing
Climate Control
Lowered Gas Prices
Baby Swings
Disposable Diapers
La-Z Boy recliners

The list goes on.


The most profound is obviously Robbie.
There just aren't enough words to express how thankful I am for Robbie's life.

Before I got pregnant this last time, when I was sad about our two lost angels, David would always remind me how we were told we'd never GET pregnant and we'd done it twice. (I won't get into how frustrating that was. But you know, he's a guy. He was trying to "fix it.")

When I got pregnant with Robbie, it was truly against the odds. David wasn't even in the room that day. He had a meeting or something and had to rush out after giving his donation- his measly 4.5 million sperm.

I left the office that day with a discussion about moving on to IVF. No one was expecting a pregnancy, least of all me.

There were not-quite-doubling betas, and months of spotting.

And, of course, his birth at 26w2d. Every step of the way, we had to cling to him as the world seemed to want to rip him away.

Yet here he is. Currently snoozing in his bouncy seat next to me. His mouth is hanging open slight. He stirs occasionally as though somewhere in his subconscious he knows he's missing something and really out to wake up, but just can't will it to happen. He has a bit of spit up on his chin. I've left it because his sleep is light and I don't want to wake him. We had a sleepless night a couple of days ago (He finally crashed around 7am) and I'm still recovering a little from that. Sleep is good, don't spoil it.

Our house of 2 has become 3. (Well, okay, our house of 6 has become 7.) Sometimes David refers to "his family" and my heart dissolves into a pool of joy. His family. Our family. Our son. Our miracle. Our Robbie.



--Trish

Tuesday, November 25, 2008

Pro Pics

Friday, November 21, 2008

I hate formula.
I really do.

It's messy. It's clumpy. It smells funny. It makes him puke more. It only lasts an hour after it's warmed.

When he was eating plain breast milk, if he ate an ounce and then refused more, I could set the bottle to the side and give him 45 minutes to digest and feel better and then try again. Now I have a clock. And since it's mixed with my breast milk, if that hour ticks by, I'm throwing away my breast milk.

If I was making gobs and gobs of milk, that wouldn't be so horrible. And really, I AM making plenty because he's only eating 2oz. But I'm not making enough for him to eat the 3oz he's supposed to be eating.

and honestly, the thought of him eating 3oz blows my mind. Sometimes he'll only eat an ounce and then will cry for a half hour because he's in pain. So three? THREE? When it takes me an hour+ to get 2 into him.. I just can't imagine.

Robbie had a play date with his NICU BFF the other day. G is 18 days younger than Robbie, born at 26 weeks even weighing 1lb 13oz. He looks huge compared to Robbie. I love that he's doing so well, but I want the same for Robbie.

I'm a huge anxious mess. I just want him to do well. And he is. He's bright and alert and developing just the way he should be. But he's not eating or growing and eventually those things will catch up with him.

I'm his mom. Feeding him is my most basic job. I'm trying. I'm truly, truly trying. But I feel like there just isn't enough that I can do.

And then I think about that fucking G-Tube that I hated. I despised it. I was so glad for it to go. It leaked and was irritating his skin. I'm convinced it's part of the source of some of his stomach troubles.

BUT if we had it, we could feed him what and when he needed. If it came down to it, we could always do an NG tube (through the nose) but no one wants that. And in a kid who is beginning to really discover his hands, it's just going to get pulled out.

That just leads to more baby torture. A tube up the nose again.

As it is, today we had to start giving him a glycerin suppository to make him poop. I managed to get sprayed with poop in a rather hysterical moment. I thought he was done but was so, so wrong. He has an impressive range, let me tell you. But I have to say, having to put that up his bum was really uncomfortable for me. I think it was more uncomfortable for me than him since he didn't even seem to notice until he pooped so hard that he puked through his nose. Fun times. Makes you want to be my baby, doesn't it?

I had really hoped the baby torture had ended in the NICU. Instead now I'M the torturer instead of the nurses.

I'm just so incredibly sad.

And I feel guilty for feeling sad. (Aren't emotions fun? Whee!) I know how lucky I am. So many babies have so many more problems. So many parents didn't get to bring their babies home to worry over them. We're blessed. We are.

But my God, I'm so tired. It seems like everything. is. a. battle.

Eat, sleep, poop. Basic baby stuff and we can't seem to do any of it normally.

Back in the NICU one day, my favorite neo once told me that he wished he had a crystal ball. It wouldn't matter what he could see. He could tell me that he was going to have 3 infections and spend weeks on the ventilator and come home a month after his due date. I wouldn't like it, but I'd say okay. I'd prepare myself for what was to come and deal with it because we knew where we were headed. But instead, we spent every day wondering what would be thrown at us.

And he's right. And I feel that way now. If you could tell me he's going to outgrow this at a year, I'd think "MY GOD, A YEAR?!" but once I finished my pity party, I'd say okay. A year. We just have to make it through a year. But we don't know.

He could wake up tomorrow and eat like a champ for the rest of his life. Or he might not outgrow it until he's 5. Or 10. We just don't know. So we spend every day just trying to figure out what to do.

I continue to try different bottles. (He took a pretty good feeding through an Avent tonight.) Maybe that's the magic answer. Maybe it's just one tool. I still try 5 different positions to feed him. (The last one managed to be sort of on his belly. That was challenging.) Whatever it takes to get him to eat.

I just hope it's enough. If he could live in love, he'd need a diet by now. That's all I can cling to for now.

--Trish

Thursday, November 20, 2008

Failure to Thrive

Today was a weight check with the pediatrician. He should have been at least 8lb, preferably closer to 9.

7 pound 7 ounces is all we've got.

Overall, our doctor was pretty positive. That's her nature. She said his physical exam is great. His development is right on track.

Eating sucks. He should be eating about 3oz every 3 hours. I'm lucky to get 2 into him.

Now we go back to adding formula to every bottle.

And we up his meds again.

All of that was doable and I was okay until I looked at the sheet you take to the check out.

She had circled under diagnosis "Failure To Thrive."

Just what every mom longs to hear. Your kid is not thriving.

I feel like a failure.

I know in my head that I'm doing everything I can. He lives with a bottle in his mouth. Monday he literally ate 12 times. When you consider at least 30 minutes per feeding(and realistically- 45 minutes to an hour), that's at least 6 hours a day of feeding him. I keep him at an incline. When he is in pain and refuses to eat, I've managed to figure out how to pat him and feed him at the same time so that he eats.

If he gets sick of one bottle, I'll change bottles to see if he likes a different nipple this time.

Almost every feeding is a 2 parter. He takes an ounce, gets upset. I pat him until he's calm again, give him a break, then in a half hour, he finishes the rest. This makes every feeding at least 45 minutes- sometimes as much as an hour and a half.

All I do is feed him. I know in my head that I'm doing what I can.

But my heart sees "Failure to Thrive" and I feel like I'VE failed. It's my job to protect him. It's my job to support him. It's my job to FEED HIM. It's my job to make him thrive. And he's not. I've failed.

All I can do now is pray this stupid reflux heals and he starts eating and thriving.

We're going to need another herd of moose.

--Trish

Wednesday, November 19, 2008

Pro Pics

My birthday present from my dad this year were professional pictures.

http://rrosephoto.blogspot.com

We had our session this past Saturday.

The photographer was wonderfully patient. (And in a small-world-isn't-it moment, it turns out we went to the same high school.)

Robbie did pretty well considering I woke him to get him ready and by the end of the session he was starving. (It was one of those days where he ate every 2 hours or so ALL DAY LONG.)

These are just the sneak peak pictures. The rest will be ready in a week or so. I'm so please.

He's so beautiful.

--Trish














Sunday, November 16, 2008

Along for the ride

Robbie is now 24 weeks old. Can you believe he's been outside as long as he was inside? Yes, I was 26w pregnant, but you know, that counts the 2 weeks before he was actually CONCEIVED, so really, he grew for 24 weeks in my belly (well, since we're being precise- in my uterus) and has now grown for 24 weeks outside as well.

The weeks and days continue to amaze me. Tonight I discovered his belly is ticklish. He smiles and scrunches up his nose when you lightly tickle him. The most fascinating thing in the world remains to be the ceiling fan. If I'm really desperate to distract him, airplane up near the fan usually does the trick.

He's becoming more and more independent. Now when he's cranky, one of the first thing to try is to lay him on a bed and let him kick his legs. The playmat works, too, but more often than not, he's happier just laying in our bed or the twin bed in his room.

He loves to sit up. One of favorite games is to sit with his butt pressed against my leg for leverage, let him grab my hands and then he does a sit-up. I try to let him lean back and he struggles to stay upright.

Of course, he still hates his bebe pod seat. As much as he likes to sit up, he should love it, but really, he seems intrigued for a minute- maybe 90 seconds. Then he lets loose a nearly painful screech of displeasure. GET ME OUT!

His new bouncy seat rules, though. It has an adjustable back so he can be sat most of the way up. It also rocks, vibrates and plays both white noise and some rather soothing music. It's also raised. Great for us not-so-young parents.

His favorite toys are the toy that came with the bebe pod and the purple elephant on his playmat. He's also fond of the giraffe and parrot, but the elephant seems to particularly enthrall him. He's starting flailing in a more meaningful way- making contact with things and then widening his eyes in surprised elation that HE made it MOVE.

He's getting better at getting his hands in his mouth on purpose. Usually a whole fist when he's hungry, but occasionally just a thumb which seems to please him immensely. I often know he's found it from across the room because he smacks so loudly on it.

Learning all his ins and outs just amazes me. He's this little........person. Seeing things through his eyes fills me with amazement. The things we take for granted!

And his smiles! Bon Jovi wrote he was Livin' on a Prayer. I feel like I'm livin' on a smile. The boost just a flash of a grin can give me is amazing. Suddenly I'm energized- To try to make it happen again!

No amount of self-mockery or non-sense spewing is over the line if it has a chance of eliciting the holy grail of parenthood- a laugh. He isn't quite laughing out loud just yet. It's more of a head-thrown back strong "HEH!" but it's completely recognizable as laughter. A mom could live for a week on just one of those gems.

I feel so incredibly blessed to be able to accompany through all of his milestones and achievements. My life is no longer mine- I'm simply a guest at the dinner theatre of his life.

--Trish


Hmm. A new seat. Let me ponder...



Nope. No likey. NOT ONE BIT.


Daddy and Grandpa are full on ribs and enjoying Sunday football with me!



November 3, 2008, 4am.
Journal entry
This woman called "Mommy" says good babies should be sleeping in their beds now. I seem to have found a more comfortable place and think a bed is a poor substitute.
The furry striped thing has taken up arms on my side.
Attempts to persuade her continue to be met with resistance.
--Robbie




Daddy has TV. I have the ceiling fan. Life is good.




burrrrrrrrrrp!


Lift those legs, lift those legs, work the core!


My new favorite toy



Hey internets!





My fancy new seat




This week my friend Jen came to visit me and mommy!

Saturday, November 15, 2008

March of Dimes

I'd like to draw your attention to the upper right corner. It takes 45 seconds and no money to help be a voice for babies like Robbie.

The U.S. was given a D on the report card on premature birth.

We keep hearing about how our nation has the best health care in the world. This should make us hang our heads in shame.

Please, sign the petition so we can stand proud again.

--Trish

Thursday, November 13, 2008

Eat, sleep...or not...

We continue to be plagued by eating and sleeping woes.

Sleeping:
He had a few good nights- even one where he slept 6 hours. I woke up and double checked to make sure the apnea monitor was turned on. I felt this strange sensation that I sort of remembered. You might call it...refreshed.

Of course, that hasn't lasted. The last few nights, he's woken every 2 1/2-3 1/2 hours.
And he doesn't nap. He'll doze off a time or two during the day, but it's 10 or 15 minutes at a time.

David was off for Veteran's Day yesterday so I went and finally had my gallbladder scanned. (No results yet.) I came home after being gone about 4 1/2 hours and found a defeated lump of a man that used to be my husband.

He must have said at least 5 times during the rest of the day "but he only slept for 10 minutes." I kept replying "Yes, honey. I know. This is how it is EVERY day." He'd really never been alone with Robbie more than an hour or two at a time. And usually I'd feed, change and settle him before I left. No such luck yesterday. It was morning. Peak Robbie time.

Of course, if nothing else, I think it gave David a little more respect for what my days are like.

Sleeping I can mostly manage. If he sleeps, I sleep and we do okayish.

Eating, however, is going to be my undoing.

We finally got his Prevacid filled on Saturday. (Long story. I had to pull out Bitchy Trish at the pharmacy. So much so that the people next to me actually started cheering me on. But it's filled.) Saturday afternoon and Sunday, he ate like a champ. I was concocting a "Praise God for Prevacid" letter in my head. Then came Monday. So much for my miracle drug.

Back to half feedings, flailing, crying, face-hiding, etc.

I just don't know what else to do. He gets some type of med at every feeding. Carefate, Mylanta or prevacid. It doesn't seem to matter.

If I can catch him sleeping and get a bottle in his mouth, he eats fairly well. But again- he doesn't sleep. That's hard to do.

I'd say an average day, he sleeps a total of about 10 hours. Which really isn't enough for a baby of his age. And of course, that's not all at once, which makes it worse.

And eating- I'm lucky if I get 1 MAYBE 2 full feedings into him a day. The rest are anywhere from 1/2-3/4. On a "good" day, I can wait an hour and feed him what he didn't take at the regular feeding time. At least then he gets the calories.

But a day like today- it didn't matter. He'd take a half a feeding and then refuse to eat again for 3 hours.

I'm already dreading next week's weight check. Now, the worst thing they'll do is probably add fortifier back to his breastmilk again. It's not the end of the world. But formula is a pain in the ass for a number of reasons.

First of all- it makes his reflux worse.
Second of all- it's expensive
Thirdly- even if he WILL nurse, I feel like I can't let him because he has to have the formula.
Lastly- if it's mixed in breastmilk, it shortens the breastmilk's life expectancy. Whereas now if he doesn't finish a bottle, at least I can use that extra half ounce or ounce next time. I'm not wasting my hard-earned milk. But with formula, once it's mixed and he's eaten from it, it's done.

We'll manage if we have to. I know we will. But damn it... I'm tired of reflux!

And he had a surgery that was SUPPOSED to stop this. And now I just wonder if all the stomach surgery they did just made him more uncomfortable.

I really wonder about the G Tube. The wound where it was seems to be healed- it's not leaking, anyway. But it remains really dimpled in and feels a little harder under his skin. I'm sure there is scar tissue there.

Now, I'm sure as he gets older and bigger, that will be less of a big deal. But for now, he's a little guy who had a big hole in his stomach. It sucks.

In any case, we fight on.

If you could throw some more moose on the fire, I'd appreciate it. And maybe something that sleeps well, too.

You'll be handsomely rewarded with more pictures.

--Trish

Friday, November 7, 2008

For a Friend

I just wanted to take a moment to ask everyone to visit Matt's Entourage. Matt's wife is a friend.

After trying to conceive for some time, they were finally successful in getting pregnant through IVF.

Very shortly after they found out their joyful news, Matt became very ill. After extensive tests, they discovered he has brain cancer. The outlook is grim. He's only 31.

If you are local and like trivia, some neighbors are hosting a trivia night. Or if you'd like to donate, the information is on the web page.

If you're unable to do either of those things, I ask that you please pray for them.

Thanks,

Trish

Thursday, November 6, 2008

Stomach update

Robbie had a follow up with the GI specialist today.

We actually saw the nurse practitioner. Turns out she has twins who were 26 weekers. We bonded. She was lovely.

The bad part is that someone has clearly not been keeping their moose fires stoked. He only gained 6oz in 16 days. Not enough. Ideal would be an ounce/day. Acceptable is 1/2 oz/day. We didn't get either of those. It's not HORRIBLE weight gain, but not good.

I guarantee he's not eating enough. He should be eating at least 60cc at every feeding. He generally gets to about 45 and just gives up. He's in pain. Flailing, crying, back arching, turning away from the bottle. The effing reflux is killing us.

What I've been doing is feeding him the 40 or 45 he'll take, then in an hour, after he's calmed down and digested a bit, feeding him the rest as long as he's awake enough to eat it. He's been eating 8 or 9 times/day. When it takes an hour to get a full feeding into him.... well.... it feels like ALL I do is feed him.

Add that to the fact that about once per week he throws up a little blood and the NP was sympathetic.

She completely changed his meds.

Instead of Mylanta, he'll now get a prescription version called carafate. Instead of simply coating, the new drug binds to the esophagus to keep it protected.

Instead of Pepcid, she prescribed Prevacid.

Unfortunately, my insurance won't cover formulary Prevacid. We're currently on hold waiting to find out if they want to change him to Prilosec or if the doctor can get the insurance to okay the Prevacid. Fun times with health insurance.

Hopefully when it gets straightened out, it does the trick.

As much as it's become standard, it's exhausting to have to fight through every feeding. To have to fight for every ounce.

It seems especially unfair to him to be in so much pain so often when he's already been through so much.

And I worry what his stomach history will mean to his future. People keep saying that most babies outgrow it by 3 months. Even more at 6. At the absolute outset- 1 year. He's 9 weeks adjusted now. I'd love for this to be the tail end of it, but I'm scared. Robbie has proven time and again that he does EVERYTHING on his own schedule.

Speaking of which, his G tube site did finally heel. At the 2 week mark, when it should have been healed, it was leaking worse than ever. But then it just stopped. Over the next week there was an occasional bit of crustiness, but that was it. But it's been fine ever since. He just needed a little bit of extra time. Like EVERYTHING ELSE.

It seems like we deserve SOMETHING to happen on time, right?

And of course, then I feel ungrateful. We've been so blessed.

The NP's son had a brain bleed, a perforated bowel, more than 4 months in the NICU. These are things we escaped. I know we've been so lucky. And reflux is something that probably would have gotten us even if he'd been full term.

But damn, I'm tired.

--Trish

Monday, November 3, 2008

Thinking of you...

I've been trying to write a post for an hour.

I keep typing and erasing.

In the end, I have this to say.

To all of those out there who have lost their babies- I'm so sorry.

I asked "Why me" so many times in the last years. Between infertility and miscarriage and pre-eclampsia and premature birth, WHY ME..

Today I'm just having a day where I keep thinking "Why them?"

So many people out there who truly deserve to be parents. Who would be incredible mothers and fathers. Their children have been stolen from them and I don't know why.

Some of my most loyal readers are among them. I wish I could take away the pain.

You're all in my prayers.

--Trish

Saturday, November 1, 2008

New Looks

The blog and Robbie both got a new look today!

I changed my colors to black and red quite some time ago. I felt like it represented my black heart and interminable periods when we were TTC.

Well, I'm still black hearted. And I still hate my periods. (In case you were wondering, they returned at 8 weeks post partum and have been as irregular as hell since then.) But my heart is a lot prettier than it used to be since it now houses love for Robbie.

So I thought I'd pretty the place up a bit. For those looking for a new blog background, I really like this place. You can change it w/o losing all your widgets. SCORE!

On to the good stuff.

Robbie actually ended up with 2 Halloween outfits. While he was still in the NICU and teeny tiny, my dad showed up with a cowboy outfit.

He showed up a couple of weeks ago with a pumpkin pram.

So we had two days of cuteness!

Yesterday he was a pumpkin and tonight he was a very, very sleepy cowboy.



On the front porch



In Mommy's chair



Boo!



Every good cowboy has a horse and a few cows!





Pardon how rough mommy looks. In case you haven't heard, I don't sleep at night.