Thursday, April 30, 2009

11 months.

Robbie is 11 months old today.

I honestly can't believe it.. In one month he'll be one year old.

So much has happened in those 11 months. So much I've learned.


-I can love more than I could ever imagine.
-Zippers are better than snaps
-However, zippers don't work well with feeding tube extensions
-Poop is everything
-I can live for weeks on less than 2 hours of sleep/night if I have to.
-I really like it when I don't have to.
-Always cover a baby boy up when you change his diaper
-Nothing is cuter than a baby in a hat
-Nothing draws more attention than having a baby in public and not wanting any attention
-I can love more than I could ever imagine
-My marriage is both stronger and weaker than I ever could have imagined
-Watching my child watch ANYTHING is the most interesting thing I've ever seen
-I would do anything, give up anything, yell at anyone if it will help Robbie.
-I can love more than I could ever imagine.
-I can hear Robbie wake up before even he knows it's happened.
-Huggies wipes are superior to pampers.
-Pampers diapers are superior to any other.
-I have more crazy hippy in me than I ever realized.
-Poop happens. a lot.
-God is good and amazing and with us all the time.
-I love him more than anything.


Wednesday, April 29, 2009

Random Thought Tuesday

-I'd really like to take a cake decorating class. You know- in all my free time.

-I'm afraid to say it out loud, but Robbie has been gaining weight well for a week
and a half. So pretend I didn't just say that.

-A friend was having quite a little pity party for himself tonight. It made me uncomfortable because 1) he didn't deserve the criticism he was reaping upon himself and 2) the things he was saying hit a little too close to home.

-I should really find the link to the blog that started Random Thought Tuesday and post it, but I'm far too tired.

-It's not really even Tuesday any more. It's 1:18 on Wednesday.

-It felt like Wednesday all day today. Probably because yesterday felt like Tuesday all day. I hate when my body clock gets screwy. I get so confused.

-I really wish we could hit the lotto or something. I have to go back to work in August and I'm already stressing about it.

-If I want to win the lotto, I really ought to buy some tickets.

-I spent over an hour today trying to fix my virus scanning software because it says I have an error. Nothing will tell me what the error is. Is is possible that my virus protection has a virus? Is that irony?

-I am so, so tired. Must go to bed now.

A random photo just for kicks.



--Trish

Monday, April 27, 2009

Spotlight on moi

I feel weird AWing myself, but not weird enough not to do it, so here goes!

You might remember a little while back I posted about a focus group on infertility. Well, I took part in that focus group. (and got my $25 Amazon gift card. Woohoo!)

Well, shortly thereafter, the woman who hosted the focus group contacted me asking if she could interview me for the website. They do "spotlight on..." articles and wanted to make me one of their subjects.

I was honored, and of course said yes!

The article is up!


I must say, in the main page, I'm listed as "the writer of Fertile Hope" and I felt so weird. I've never been called a writer before. Obviously I write these blogs, but you know, I don't write. It was a pretty good feeling, honestly.

Hope you enjoy the article!


--Trish

P.S. A little Robbie to thank you for indulging me. He's SO close to sitting unassisted.

Saturday, April 25, 2009

Old news, new look


A couple of weeks ago, a kind blog reader nominated me for an award.
I was quite touched.

I'm always amazed by those who have lost a child who read my blog. I wish I could say that if the roles were reversed, that I could be so selfless. I don't know if that's true.

In any case, she nominated me for the Sisterhood award. It's all about Gratitude/Good Attitude. (I can't help but chuckle at being told I have a good attitude. Caitsmom clearly has a heart of gold to think so.)

She asked that the following poem accompany the award as it is paid forward:



COMMUNITY
by Velveteen Rabbi

One by one
every woman I know
approaches me
carrying words

it happened to me
my mother
my sister
my best friend

four times in a row
before the baby came
once, before
I even knew

three times
over six years
and then children
healthy and perfect

just keep breathing
in and out
around the stone
you’ve swallowed

I’ve been there
I am holding you
you won’t feel this way
always



This blogging community truly is amazing. I've made friends from all walks of life. Friends I feel closer to than many I've known for a dozen years or more. I've been touched time and again by the care and kindness shown to me by faceless strangers across the world.


Below are my nominees. These are people whose spirit I find amazing. I will not obligate them to post further, but would love if it did continue on. Please know that this list is not all inclusive. Just some of those who have shown me great support and I truly appreciate them.

In other several-week-old-news, I won! I won!
El over at Profoundly Seth was raising money for several charities and raffled off a few items. One of which was a blog makeover and I won! Come out of your readers and let me know what you think.

It's MUCH brighter than the old blog. But I'm in a much brighter place than I was when I chose the last color scheme. So I think it was time.

Do you like? Hate? If you love it, be sure to visit Mandy and check out her options.


Without further ado, the list of people who have inspired, comforted and supported me. Love you girls!


Profoundly Seth
Mrs. Spit Spouts Off
Life, Death, Preeclampsia
Operation Secret Baby
Service is Joy
The Babies Who Couldn't Wait
Parenting Preemies
Taylo' 2 Babies
The Compton Corner
The S Family Adventures

--Trish

bath time

Last night we were giving Robbie a bath and he was having fun.

This is notable because until very, very recently, bath time was torture time. They literally lasted no longer than 3 minutes, 2 minutes and 50 seconds of which involved Robbie crying and me trying to convince him that "it's okay."

Anyway, back to the fun.

So he was wiggling around and splashing his hands and kicking his feet. He kept staring at his feet as though he was amazed that his feet could do these amazing tricks. So of course, I was watching the amazing tricks.

It brought back the memory of kicks that I was feeling a year ago. His little feet just went non stop. He was breech throughout my entire pregnancy, so his feet were in my bladder. I'd be working and feel this Pop-pop-pop and wonder what is he DOING in there? (well, really, I was wondering what SHE was doing in there, since I was so convinced he was a girl. But let's not nitpick.)

It was such a bittersweet memory. I loved feeling him move. Even when those kicks hurt a little, I was pleased.


But then I got a little sad. Thinking about the months he missed kicking me. About the months of floating in amniotic fluid that he was cheated out of.

I wonder if someday he'll love to swim and he'll be able to make up for some of that lost time.

He deserves the fun.

I suppose not hating the bath is a good first step.

--Trish

Friday, April 24, 2009

Comfort

Sometimes late at night, after Robbie's been in bed for a few hours, I get to reflecting on my feelings.

The last couple of days have been emotional ones. Nothing to do with Robbie. Mostly just friend stuff. I'm feeling pretty bummed out and really could just use a hug. David's long since gone to bed as well and honestly, he doesn't really get the whole girlfriend thing, so I haven't even gotten into with him.

And you know who I really want to hug? Robbie. He makes everything right with the world. But I don't want to wake him, so instead, I just look through pictures of him and feel a little better.

So tonight, I'll give you some pictures. No witty (or attempted witty) captions. No story telling. Just Robbie.









































--Trish

Tuesday, April 21, 2009

Adventures in photography

As many of you know, little Stellan had his hear surgery today. McMomma had asked everyone to wear orange in support. Fortunately, one of Robbie's favorite outfits is a bright, springy, orange-heavy outfit.
What a great opportunity for some pictures!

I thought Hmm, this should be simple. I'll just make a sign and take a picture. The fun was just beginning.


Hmm, well, that's not bad, but maybe I could get a better look on his face and the sign could be straight.



I'll just put the sign over here.. Hey Robbie.. Robbie..Look over here, baby...



Hmm.. Maybe if I put the sign on the other side.. oh crap.. Robbie, honey, let go..



Okay, maybe I'LL hold the sign up.. Well, crud. Robbie, baby.. don't cry. This is supposed to be fun.



Well, that's better, but the sign has seen better days.. and well, you can't see Robbie's orange outfit, which was the whole point.. What next?



Okay, let's put the sign off to the side a little.. Yes, baby, I'm glad you like the paper..



Uh oh.



Okay, I give up.

At least Robbie's amused.


I wonder how many calories paper and ink has?

In the end, we sent Stellan the original.
Get well soon, Stellan!




--Trish

Monday, April 20, 2009

Upping the Ante

Wow, first off- thank you so much to those of you who have already contacted us about donations for Robbie's Birthday Pay-It-Forward. We're truly touched.

On top of the many individuals who have contacted us, a few friends with "connections" have offered donations as well.

A dear friend who runs Save The Date Originals is donating the stickers for the items so everyone knows they're from one preemie to another.

And just tonight another friend who works for Build-A-Bear Workshop is going to arrange a donation of mini bears for the current NICU residents. (And an extra bonus, posted below.) We're SO excited!

There is no way that we could ever re-pay the hospital for Robbie's life, but it means so much that people want to help us try.

To up the ante, we've decided to sweeten the pot a little.

Every person who makes any donation towards the effort (it will need to be received by May 28, 2009) will be entered into a raffle.

Right now, there are at least 2 prizes:
$25 gift card to Target
$20 "Cub Cash" to Build-A-Bear Workshop (another donation!)

More may be added later. It doesn't matter what you donate. Even a 99 cent sheet of stickers could win you a prize.

We look forward to hearing from you.

Reminder: Just email me at triciajoy@yahoo.com or comment on the blog for mailing instructions.

-Trish, David & Robbie

Sunday, April 19, 2009

Not so Zen

Is trying very hard to be Zen an oxymoron? Irony? Or something?

Because I'm working very hard to be Zen about Robbie's eating. But I'm really struggling.

Today he ate 10ml (that's 1/3 of an ounce) of milk by mouth.

I managed to trick him into maybe a 1/4 of a stage 2 vanilla custard with banana. (The tricking: Basically I dip his pacifier in. Then I make him laugh and shove the spoon in. If he fusses and opens his mouth, I shove a spoon in then, too.)

The thing is, he seems FINE with the food being in his mouth. About 90% of the time, if I can get it through his lips, he'll swallow it. When he gets fed up with me (or full, maybe?) he starts spitting it back out. Mostly he'll swallow anything I put on his tongue. The problem is the lips. The lips purse up tightly. And the head. It turns and twists and pulls away. The lips and the head, they are my enemy. The tongue, the gums, they are my friend.

And I know that there is good in this. The therapists tell me his oral skills are excellent. He CAN eat.

I discussed the NICU clinic and feeding clinic's findings with our home OT this week. She concurs completely. (She was also irritated with the neo's insistence that no eating = no talking. She agrees that his verbal skills are excellent.)

Everyone agrees that he's learning to use his mouth just fine.

BUT DAMN IT, I WANT HIM TO EAT.

It is so hard. He literally sees the bottle and cries. That lip zipping that he does? As soon as he lays eyes on the bottle.

Usually I can get him to eat an ounce or so at bedtime. Not today. No matter what trick I tried, he wouldn't let that bottle touch his lips. Instead, he fumbled for the pacifier clipped to his pajamas. He loves that pacifier so much that sometimes I resent it a bit. And then I feel bad because thank GOD he loves the pacifier. He can suck just fine. Oral skills, ya know?

But it's getting to the point that when other moms talking about their child eating, or I see a picture of a child with a bottle or snack in their hand, I'm sad.

Not jealous, even. Just sad.

Maybe it's because I love food so (too) much. I know he's missing out on what should be a joy. Food should be fun. But it's so not fun here.

I work very hard to try to make it be so. We play games with it. I let him dip his hands in at and spread it around. He loves those Gerber Wagon Wheels (even though he spits out any piece of it that he happens to break off.) so he gets them regularly. I sing to him and smile at him even when he won't eat.

I try to be Zen.

Inside I'm thinking Please eat please eat please eat. please, just one little suck. just let it drip into your mouth for a second. please. But outwardly I'm trying to remain relaxed. No pressure. No unhappiness. "See, food is fun!" I say.

But he remains unconvinced.

And the therapists- they tell me there isn't much that can be done. We keep nourishing him through the tube and give him what he'll take by mouth. Keep it fun. He'll eventually grow out of it. I try to believe them. Zen.

But I'm so sad. I know what he's missing out on.

I try to cling to the fact that it doesn't seem to be affecting his development. But I want him to be HAPPY, too. I want him to enjoy the things he should. Instead, it's misery.

Even though he lets me pump the food into his tube, it turns into misery, too. The reflux is horrible. You can hear his tummy gurgling. It squeezes and seizes. His little body tenses up and he moans a little. Even if he falls asleep at the end of a feed, a few minutes later, he'll wake up crying and you know it's imminent.

These days we're averaging about 4 clothing changes every day. Some of mine, some of his. Extra laundry is annoying, but manageable.

But seeing him in pain is awful. He's pretty much maxed out on meds. You can tell it's not the burning of stomach acid. The Prevacid and Carafate take care of that. But the agony of nausea and retching? Not much to be done for that. The only thing that soothes him is to pat his tummy. He looks at me with this look in his eyes as though he's asking "Why, mommy? Why does it hurt? Why can't you stop it?" My heart breaks. I pat some more.

The worst part is that he seems to do so well with solid food. He doesn't heave it back up. He doesn't scream or gag or cry. But getting him to eat it is such a challenge. If only I could get him to understand that if he eats the yummy bananas, he'll feel so much better.

An Internet friend is going to start her daughter on a blenderized diet. Robbie's too young for it now, but maybe after a year adjusted, we'll try it, too.

I know that there is an end to this out there somewhere. And I KNOW it could be so much worse. I look around me and see so many other parents suffering so much. Families with much more dangerous health issues. I know how lucky we are. I thank God for our blessings every day.

But when we have days like today. Today, when he cried and cried and cried and refused to eat. Days when he eats 1/3 of a ounce, I'm sad.

Today I am not so Zen

--Trish

P.S. Don't forget about Robbie's Birthday Pay It Forward. The offers are starting to come in. I can't wait to see the good that can come from Robbie's birthday!

Friday, April 17, 2009

Pay It Forward Notes

For those who want to do something small (money is tight these days, believe me, I know!) one suggestion is maybe some craft stuff. Even a sheet of cute stickers.

The nurses make signs and decorations for the babies' isolettes and rooms. I still have Robbie's hanging up in his nursery.

Seriously, even a dollar sheet of stickers would be put to good use.


And because I didn't make it very clear, I plan to take the stuff to the NICU on May 29. So donations only need to be in by May 28th.

--Trish

Thursday, April 16, 2009

Pay It Forward

NICU babies are tiny and fragile. The parents are terrified.

When Robbie was born, we had exactly one thing bought for him. Every time someone asked if we had a _________, our response was the same. "We were going to do that in the third trimester." Only the third trimester never came. And once Robbie got here, the last thing we wanted to do was go shopping. We spent every waking hour at his side. When I TRIED to go out and do something to get ready, I was overwhelmed with guilt and worry.

And we weren't alone. We were surrounded by other parents who were just as terrified and unprepared as we were.

Sometimes at night, I lay in bed and think about and pray for the current NICU babies. I pray that their parents are comforted, that God holds them in His hands. And I pray for the caregivers that their decisions are guided and well thought out.

In our time, I was amazed that this... hell... was going on all across the world all the time. When I had been blissfully feeling Robbie kick my bladder, some parent somewhere was worrying about their tiny, fragile, sick baby in an isolette.

And it continues.

As I type this, parents are still going through it.

But there was so much hope. So much help when we were there. The nurses weren't just Robbie's caregivers, they were mine.

The day before I went back to work for a short period, I was at Robbie's bedside crying. Nurses that had never been assigned to Robbie came to pat my back, give me a hug and encourage me.
They made Robbie comfortable. They rubbed his head and stilled his hands. But they made sure I had water and they held my hand.

We watched nurses cry over other babies, hold other parents' hands, stop their paperwork to just hold a baby whose parents couldn't be at the hospital all the time.

My favorite doctor would come in and ask how I was and when I would say okay. He'd shake his head, sit down and respond "No. How are you REALLY?" And then he'd comfort me. I could tell him I needed a pep talk and he'd give me one.

And the parents around me, well, what can I say? They kept us sane. While our friends and family members did everything they could to comfort and support us, no one who wasn't living the day in and day out of apnea and alarms and test and pokes and tubes and oxygen could truly get it.

Even when Robbie was having a bad day, his NICU friends might have a good one, and it gave us something to cheer about. And when Robbie was having a good day and they a bad one, we were blessed to have them cheering for us.

As much as we were so ready to have our little guy with us, there are elements of the NICU that were truly special and are missed. The sense of teamwork, the support, the safety, the never-having-to-tell-someone-to-wash-their-hands.. it was special.

And that is why, with Robbie's birthday approaching (6 weeks, how did that HAPPEN?), we are hoping to thank the place that literally saved his life time after time, we are asking for everyone's help in donating some items to the NICU in Robbie's name.

We toyed with several ideas, but in the end decided we'd like to give anything.

Robbie received many donated items during his stay. From hand knitted hats to crocheted blankets, donated books, and tiny clothes, we benefited from generous act after generous act.

We'd like to pay it forward. We will be donating all of Robbie's outgrown preemie clothes and receiving blankets. And we'd love to have more.

A few people have expressed that they'd love to donate some blankets and a dear friend is going to make hair bows for the girls. We've had some ideas of books to read to the babies. We'll take it all.

If you'd like to give in Robbie's name, please Contact Us and we'll give an address for donations. It could be anything a baby could use. And if you aren't sure what to give, prayers are always welcome. Pray for the babies, the parents and their caregivers. Those were truly our most treasured gifts during our time.

Thank you for helping us pay it forward.


--Trish

And as a little pre-thank you: a little Random Robbie to brighten your day.

video

Quickie with linky to longy with piccys.

Robbie has been having horrible, horrible reflux the last week. And barely eating (worse than normal) so today he had an Upper GI to make sure his hiatal hernia wasn't back.
Thankfully it's not. Please pause while I sigh with relief.

I just wrote a big recap of the last week in Robbie's life including the NICU follow up, feeding clinic, Easter weekend and the upper GI. It's viewable on Robbie's Blog if you're interested.

But I know most of you just want pictures.

Here ya go!

Easter weekend pictures!


Who ya talkin' to, Grandma?



Hmm.. these bananas aren't half bad.



I can do it myself, mommy.



Pardon me, I believe I have a banana in my eye.



Getting a bath in the sink at Grandma's house. I think it's the first time I ever smiled while being bathed!



Getting dried off is still better than getting washed.



Hangin' out with Daddy.




Happy Easter!




Did you need somethin'?




Blue eyes lookin' at you.




I'll read the instructions for you, Daddy.



Always with the camera?



Hey! I know you!



What's this over here?



Nom nom nom! Yummy card!



Uncle Boo Boo keeps me company.



Relaxing with Grandma after a long day.





--Trish

Tuesday, April 14, 2009

Feeding Eval

Today was Robbie's feeding clinic evaluation.

I was very nervous. First of all, it was at 10am. I know this sounds awful, but we just don't get up very early around here. Robbie generally sleeps about 9pm-9am. As the clinic is on the other side of the city, we have to leave by 9 to get there, which makes for a hectic morning. Then there is the whole feeding him away from home and being judged thing.

I was worried for nothing.

Well, not nothing, the morning was very hectic, but the evaluation went fairly well.

We spoke to the coordinator for a bit, who took some notes. Then she sent in an OT (who we knew from hospital days) and the SLP. (Speech Language Pathologist. I find it ironic that Speech Language Pathologist is so hard to say.)

Robbie put on a lovely show for them. He started out lovely and smiley and flirty- his usual self.

Then it was time to eat. Cue the screaming, crying, thrashing and fighting. He managed to take about 3 sucks in a row a few times but pretty much wanted nothing to do with the bottle.

Then we tried solids. I brought bananas since that seems to be the one thing he seems to like. He fought at first, but finally agreed to let me put the spoon in his mouth if he could hold onto it at the same time. Messy, but it works. They were impressed that he was interested in self feeding.

At that point we pretty much took a break and talked.

The SLP asked a lot about his speech. The OT talked a lot about his skills. I cried.

I was embarrassed about crying, but the subject of patience came up, and I think the guilt that I get frustrated got to me. The times when he eats NOTHING by mouth leave me so worried and I do get frustrated. It's not about knowing he'll get nourished, but about worrying about the future.

They were very reassuring.

The best news of the day was that he's AHEAD in speech. AHEAD, Internets, he's AHEAD. Well, technically he's "caught up" to his actual age, but that's ahead of his adjusted age which is ahead as far as I'm concerned.

The SLP had misread his file and thought he was 10 1/2 months adjusted and was pleased with his progress based on that. When I corrected her that he's 7 1/2 months adjusted she exclaimed "OH! Well, then he's way ahead! He's doing GREAT!"

Music to my ears. I resisted the urge to ask her to say it again.

I told them that the neo had scared the crap out of me because he said that if he didn't learn to eat, he wouldn't learn to speak. They both assured me that is not the case.

They were very pleased that he's so oral. Even though he doesn't eat, he does chew, explore, and generally learn about his mouth. The main goal at this point is to continue his progress in that regard.

The bad part is that they really didn't have much advice for me.

Essentially he has to outgrow it. We need to control his reflux and try to keep him as oral as possible.

They want us to get a developmental nutritionist at home to work with our OT.

But beyond that, we just have to wait. How long? Years. They agreed with our pediatrician that it may well be around kindergarten before we're through this.

Even just typing those words make me sigh.

They tried to reassure me that this is very common in reflux babies and that I'm doing everything that can be done. They were full of praise for how well he's doing and how I've handled things so far.

My favorite part was that they called Robbie smart about 30 times while we were there.

They loved that he's "manipulative" (she then apologized for using that word, but it amused me- it was fine.) because he's learned to pinch the nipple of the bottle shut. He'll let me put it in his mouth, but only if he holds it closed so he gets no food.

They praised how attentive and interactive he is. He played with them. He didn't babble while we were there, but the SLP loved that he has two consonant sounds- b & m.

Overall, I came out feeling better than I felt going in. But I had also hoped for a plan of attack. I'd hoped for, if not a solution, a series of steps towards one.

Instead, I came out with reassurance that it will end- someday- and that for now, he's doing okay.

For now, that is enough.

--Trish


P.S. I promise to catch up on pictures in the next day or two. The last week has been utter chaos and I'm just now starting to catch up.

Sunday, April 12, 2009

Happy Easter

We're currently at my mother-in-law's house celebrating both Easter and her birthday.

There is no wi-fi in the area (Podunk, MO) but I've managed to uh.. "borrow" an unsecured connection for a few minutes.

I was a little sad about not being able to attend church today because we're still under quarantine, but fortunately MckMomma posted a great sermon on her blog and now I feel like I've been.

I think it's a little like Jesus hearing we couldn't make it and he stopped by to check on us.

God bless this amazing blogging community and God bless all of my readers.


---Trish


P.S. We'll be home later tonight and I'll try to get a recap of Robbie's first road trip and Easter pictures up as soon as possible.

Wednesday, April 8, 2009

Sorrow

I really have no words to express the sorrow I feel for The Spohrs.

They lost their precious baby girl, Maddie, very unexpectedly.

Once again, I'm counting my blessings and holding my son even tighter tonight.

Please keep them in your prayers.


--Trish

Tuesday, April 7, 2009

Babbling

I believe I mentioned that Robbie has recently started babbling.

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

Good visual, mediocre babbling:
video

Dark, but good sound:
video

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

--Trish

Ideas?

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







Next month Robbie will be one year old.


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


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

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

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

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

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


--Trish

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

Saturday, April 4, 2009

Vent

My word of the day is frustration.

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

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

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

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

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

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

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

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

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

And then his spit it out.

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

And he spit it out again.

I tried again.

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

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

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

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

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

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

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

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

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

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

I WANT THE BOY TO EAT.

--Trish


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

Thursday, April 2, 2009

NICU follow up

Today was Robbie's NICU follow up assessment at the child development center.

It was both better and worse than I expected.

I went in prepared to hear that he was behind. I hoped to hear some good news with it, but I prepared myself for the bad stuff.

They mainly evaluated 3 areas: development, gross motor and fine motor skills.

Developmental and fine motor skills were good. He assessed at 7 months, which is his adjusted age. There were a few 8 month skills he was starting as well. I was pleased.

His gross motor stuff was, not surprisingly, behind. They assessed him at 5 months. Okay. Ouch. But I knew it was coming. They were pleased that we'd already made arrangements for PT. No one seemed terribly upset.

Then the neonatologist came in. He wasn't a neo that I knew from the NICU. He was part of the other team. He was, however, a favorite of several of our NICU friends, so I was glad to see him. Until he started talking, anyway.

Essentially, he's very concerned about the eating issues. VERY. CONCERNED.
He's worried about his nutrition, but also about what not eating means. He's worried about the language and speech implications.

The center does have a feeding clinic. And he wants us in it. They evaluate children twice a month and April is already full. Right now we're scheduled for May 4. The neo, however, isn't pleased with that and expressed that this "can't wait until May." So he's trying to get us worked in sooner.

I honestly was taken by surprise. Yes, obviously the feeding is concerning and extremely frustrating for me. But up until today, the feeling I got was more of the "take our time and he'll outgrow it" vibe.

He's only had the G tube for a month. I think I'm still catching my breath from having to worry about him starving to death. And now we've moved back into panic mode.

I've been in a funk all day. I keep trying to focus on the good.

Finally someone listened to me. I told him about the trouble I'd had getting GI to listen to me. He was shocked when he heard some of details.

Finally someone was helping. He said we were moving forward with or without GI. Things will not stand as they are. He needs help and he's going to get it.

He had plenty of nice things to say. He called it a "minor miracle" that Robbie is doing as well as he is considering all the issues he's had. He said lots of nice things about how proactive I've been about getting his therapy and credited that for the fact that Robbie is pretty on track in a lot of areas.

I keep thinking maybe we can really make a difference.

But I keep coming back to panicked. And sad. And worried. And guilty.

I know we'll get through it. God has seen us through much, much worse.

I hope that you'll pray with us that the therapy works and he catches up.

And if you could throw an extra moose on the spit, he hasn't gained much weight in about 2 weeks even though I'm giving him the calories in his tube. Not sure what the problem is, but he could use a boost.

--Trish

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

Wednesday, April 1, 2009

Bah!

I hate tests.

Seriously.

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

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

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

Today he has his PT evaluation.

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

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

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


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

I'll say it again: Ouch.

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

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

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

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

Of course, the worst is yet to come.

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

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

I wonder if they give extra credit for being cute?



--Trish