Friday, April 9

Glasses!

This is Bryce just after we finally got home last night. Notice how his feet are a little blurry - that's because he's a happy boy and they never stop kicking.

Bryce's world has definitely opened up and he really seems to be loving it. He is using both of his hands more (already) and you can see him quickly focus on things in front of him instead of endlessly searching back and forth for them.

When we walked in yesterday Caleb was standing and I set Bryce, in his car seat, down on the floor. He looked right up at Caleb and smiled the sweetest smile.

His occupational therapist was so impressed this morning though not surprised by how much of a difference the glasses have made. That was really nice.

But of course, now he's figuring out how to get them down from his eyes and into his mouth so that'll be our next challenge. We say, bring it on!

Thursday, April 8

Good News & New Glasses

Yay for only one surgery! And double yay for if in the near future more than one surgery is needed (still a slight possibility) the two can be done together!

It was a good day. A long one but a good one.

We met with the urologist and now know that the chordee surgery will be done as soon as Bryce's pulmonologist signs off that Bryce is strong enough to go under general anesthesia. We also learned that Bryce's hydro-seal may very well need to be surgically fixed as if it worsens it could lead to emergency hernia surgery or that worse, he could have a part of his intestine get down into the herniated area and get stuck. This is worst case scenario since if that happened, similar to the NEC that we were always so scared of while in the NICU, a portion of his intestine could die.

The doc wrote the order to fix the hydro-seal while in surgery for the chordee but if it magically goes away on its own before that we could still get out of it.

Then we visited the NICU!!! According to some of our old buds, many moms literally will not walk into the NICU, even to say hi, after going home.

I, on the other hand, simply felt like I was walking into my old high school, or the house I grew up in. It's a little distant, a faint picture where the edges are starting to fade to gray, but still powerfully emotional, evoking another time in my life.

It's odd to think of that being another time of my life but after we visited with all the nurses, lactation consultants, nurse practitioners and doctors working the unit today we met Jennifer, one of our old primary nurses, at Chuy's for lunch. The fact that we were meeting for lunch, seeing each other for the first time in months, proved to me how quickly it's all gone by. Sitting there telling her all about how sweet and happy Bryce is. How he's trying to sit up and can bear his weight standing, how he'd roll if he ever got tired of laying on his belly sucking his hand, how he eats and eats and eats until we worry he may actually be eating too much.

My oh my, how are lives have changed completely, then changed completely and once again, almost as if just for the hell of it, changed completely once more.

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Bryce's ophthalmologist appointment took right at four hours and was excruciating. But he came out with a sample of band-aid-ish patches in camo, blue, boy, boy, and more boy...oh and a pair of the cutest stinking baby glasses you've never, ever even imagined. They are purported to be unbreakable (i.e. plastic) and made in Italy. What else could you ask for, really?

The patch will hopefully help his left eye strengthen, the glasses have already seemed to help him see us from further than arm's length and should also help both of his eyes strengthen. Good, good and more good. Hopefully good enough that surgery will be a moot point before we know it.

So for now, we relish in the joy of a baby boy who sees us coming and wait for the pulmonary appointment to learn of our next micro-preemie adventure.

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Bryce Alexander
Due 9.26.09 - Born 6.7.09 - 24 weeks, 1 day gestation - 4 months early
1.5 pounds, 12"

4/8/10 - 14.5 pounds, 26"

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Every day, thousands of babies, just like Bryce, are born too soon, too small and often very sick.

Wouldn't it be an awesome tribute to Bryce's incredible journey to have a huge group walking in his honor on May 8th down at Auditorium Shores, benefiting the March for Babies?

We sure think so! Register here, it's only 3.2 miles and we'll have team BAM t shirts for sale too!

But, if you just can't walk with us, please help by donating to our team (by clicking here), even $1 will help!

♥ The babies would thank you if they could! ♥

Tuesday, April 6

Full Day of Doctor Visits

Tomorrow is a big day for Bryce, though if you saw him you'd have no idea. He doesn't even seem to notice at all.

What a wonderful idea, not to know to be worried or hopeful, or any way at all really. It's like a dog. Everyone loves a dog because each day, each moment for them is new and hopeful, even exciting. Just look at Bosco.

Well, I'm obviously not a dog or a baby (not to mention, I am a mom) so not only do I know, but I must, worry. Though I'm proud to say I'm reserving a bit of energy for my hopefulness too.

Bryce has his urology appointment first. We've known since our NICU days that this appointment would eventually come and that surgery is inevitable. Bryce has never been circumcised, but also he has what is referred to as chordee. Which, of course, will need to be surgically repaired.

After we're going to take advantage of being next door to Dell and stop in at Bryce's old stomping grounds - the Dell NICU - to pay a visit. I'm very much looking forward to this! And then we're having lunch with one of Bryce's primary nurses! Jennifer could single-handedly take credit for Bryce's not needing a ventilator or trach to breathe today and I wouldn't fault her one bit for it. It'll be so much fun to see her reaction to our Mr. Man now!

And then in the afternoon, and likely for the entire afternoon, we'll be at the ophthalmologist. We've been worked in because Bryce's pediatrician is concerned about his crossing. She's worried he may be seeing double, while his PT is worried he only appears to be crossing because his left eye is working overtime to try to make up for a not so great right eye.

Whatever the case, I'm anxious to get in there and see if there is something we can do about his vision. The other day he was standing (assisted of course, though only for balance) on his changing table when Caleb walked in the room. Now everyone knows that Bryce would jump the moon to smile at his daddy but Caleb was testing him. He came in without saying anything and stood right beside me, where Bryce was looking right into my eyes smiling and doing his little balance dance that is the cutest thing ever. Ever.

But he didn't notice Caleb at all. Once Caleb spoke to him, Bryce looked for what seemed like too long but then saw Caleb and grinned that sweet grin from ear to ear.

I hope the eye doctor will say she can do something to help him see but that he doesn't need surgery, a common fix for crossing, from what I understand. I know glasses would be bothersome to Bryce and a hassle but it would be so nice to see him recognize me walking up to him. A bit selfish perhaps, since he has no idea what he's missing.

Words cannot explain my trepidation. All parents worry about surgeries, well all that have the unique misfortune to have a child have surgery. But this takes it to another level.

You see, "the S word" as we refer to surgery in the Moline home, means intubation when a baby is involved. And though this is only hearsay, it is our understanding that baby Grayson is no longer with us because of a lack of oxygen supply during an MRI (while intubated) prior to a surgery. Grayson was given sedation for his pre surgery MRI but never woke up.

I can't bring myself to go into how that makes me feel. It's just too raw still. But as many of our readers are parents themselves I feel confident you can imagine.

So please be thinking of us tomorrow. Our hope is that we'll end the day having learned that there is only one surgery in Bryce's near future, that we can do something non surgical about his crossing and poor eye sight and that we'll have spent some quality time with our old buds from the NICU.

I'll be sure to let you all know more as I know more. Goodnight all.

Much love,
The Moline Family

This Gig Ain't Easy

You can try to imagine and head the warnings of those that have travelled this way before,
but you still won't be close to understanding how tough this gig is.

Being a parent may very well be the most rewarding job I've ever had,
but it too is the most challenging.

The hours are long.
The struggles are hard.
Sometimes you feel like you're carrying the weight of the team.
The consequences are unimaginable and you often wake suddenly in the middle of the night, startled at their enormity.

But a mere thirty seconds spent in a dim, sweet nursery
rocking that precious, sleeping piece of you
makes it all seem small and petty.

What could be better?

No matter what has come before this moment,
no matter what is to come in the future -
so unknown, so scary, so intimidating -
it is all worth it.

A million times over.