Feeding Woes

Hand to Hold is a local non-profit that I've talked much about before. They have a special place in my heart for many reasons and I'm always happy to help them when and if I can. Yesterday, they asked me to write a little something about our feeding issues for an upcoming project their working on. As I began to put the summary of Bryce's feeding issues down on paper it occurred to me that perhaps I should share with all of our readers as well.

Many of you and most parents can't appreciate the struggles related to feeding babies that have been intubated and/or hospitalized for long periods of time. It's hard for the parent of a normally developing child to really get the stress but I think most can imagine that they'd be terrified if they couldn't be sure their child was getting enough nutrition, enough fluid, enough nourishment to not only thrive but just to survive.

This is a very real problem for many parents and this is our "feeding story:"


Bryce's extreme prematurity meant that at birth he was unable to breathe on his own. He spent five long months in the NICU at Dell trying first to survive, second to breathe independent of equipment and finally to nourish his body with my milk.

It would prove to be breathing that would be Bryce's biggest challenge. It took four months on and off various ventilators before he was finally successful on high flow nasal cannula. Of course, as all preemie moms are aware, that just meant it was time to face feeding - no small hurdle in itself.

After being intubated with a breathing tube for so many months Bryce's "suck muscles" were weak and trying to feed from me or a bottle took so much energy that he would tire out well before filling his belly. We supplemented with tube feedings by way of an NG tube for weeks while trying to build his eating strength and coordination. We were grateful that he rarely aspirated while feeding but as time wore on it became obvious that if we didn't take Bryce home with a feeding tube he would either remain in the NICU for the forseeable future or end up catching some nasty hospital bug.

So we swallowed our fears and began our NG placement training. There really is nothing worse in our books than holding your infant son down while shoving a tube up his nose, down his throat and into his tummy. Oh and be sure not to hit the lungs, which is really just luck (especially since he's screaming the whole time), because then when you start the feed you may drown your child. Not sure if it's in the lungs or stomach? Well when you're in the hospital under strict supervision for placement you just take a quick listen with the nearest stethoscope but when you mention buying one for home use your reprimanded for being to NICUish and not enough Mom-ish. Oy vey.

It's easy to laugh off the stress of the ordeal as we look back now but it really was a true test for us. We now compare all things to the torture of placing an NG tube - ALL things.

Hand, foot and mouth disease, suppositories, baby puke and diaper blow outs all pale in comparison. If there were such a flag that read, "If I can place an NG, I can do anything," I'd proudly wave it high. I'd even get one of those cheesy mini flags for my car. Maybe one for Caleb's truck too.

Eventually though they let us take Bryce home with us and just like all the cliches you hear, he almost immediately began to grow bigger and stronger. After just a few short weeks at home we took out his NG tube, for what would turn out to be forever.

We hardly followed the book, or the doctor's advice for that matter, when we decided enough was enough. But it was the holidays and we felt that as Bryce's parents we knew him better than anyone. So together we made the joint decision to pull the tube and hope for the best. We could only pray that lacking those extra calories he was getting through the tube his desire to eat enough on his own would kick in. And thank the Lord, it did.

We were blessed and oh so grateful to place it finally away in the medical keepsakes box where it remains today.

(Yes, we have a medical keepsakes box. And it's full of blood pressure cuffs, hospital ID tags and myriad other odd momentos. No, I don't know what I'm going to do with it so for now it just stays safely put away in the closet. Yes, I know that's weird. And, no I don't care!)

Of course, our feeding struggles by no means ended the day we decided Bryce would no longer get supplemental feedings by way of NG tube. But we know enough to know just how lucky we are that Bryce's oral aversion was minimal. He always liked pacifiers, seemed to enjoy taking his milk from a bottle and overcame a texture issue with stage 2 foods in just over a month of daily trials.

We're painfully aware that this isn't the case for all parents but that is why Hand to Hold is so important. Because they have the unique ability to put those parents together and let them explore possible solutions, vent about frustrations and take solace in knowing they aren't alone.

I can only hope that our story will help another family along the way.

POST traumatic stress disorder

I guess the thing about PTSD is it can hit you anywhere, anytime. You might be perfectly happy and just enough distracted by this, that and the other that you don't even see it coming. That's how it happened to me this morning.

Standing in line at Starbucks I recognized a glassy-eyed look on another woman's face. I saw in her blank stare that while she was standing right next to me smiling politely she was all together somewhere else.

My mind instantly and without my control went to the days that Bryce was his sickest and I'd escape the NICU for 10 or 15 minutes to walk to the nearby Starbucks. I was never where my body was, my mind was always with Bryce.

There were so many days that I spent all of my energy fighting back the sinking feeling that I was going to lose my precious baby boy. This child who had spent so little time growing inside of me and even less time where I could see him and occasionally touch him. I felt like at once I knew and loved him more than anyone else in my life and like I hadn't yet had a chance to really know him and love him for who he could be.

So I'd walk around Dell, down the busy streets in the blazing heat to a familiar place, because all Starbucks are the same, and I'd order my usual. I'd stand there in line and smile vacantly at strangers wondering maddeningly how all these people could go about their lives so nonchalantly, how could they go for coffee, laugh at dumb jokes and worry about their petty problems.

Didn't they know I was losing my baby boy!? Didn't they know that as we stood there he was fighting for his life!?

It's been about a year and half since Bryce came home from Dell and just a bit longer than that since we've been sure we would get to see him grow bigger and be his own person.

It seems it's just long enough to distract yourself laughing at dumb jokes and worrying too much about things that don't really matter. But low and behold, it's not long enough to forget that awful feeling, it's not too long to find yourself suddenly fighting back tears and feeling as if you'll throw up while waiting for your morning coffee.




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 fight to have a huge group walking in his honor this Saturday?

But, if you can't walk with us, please help by donating to our team. To make a donation or sign up to walk with us visit the teamBAM! page.

Thank you for helping us support the March of Dimes in their mission to give all babies a healthy start!

March for Babies THIS SATURDAY

Since you've all heard or read my plea regarding the March of Dimes I'll spare you the long version and just say this...

Medical practices and medicines responsible, at least in part, for Bryce's survival were discovered by March of Dimes' researchers on money raised by them and people like you and me.

Please help us help them save even more babies lives by walking with us this Saturday, May 7th at 9 a.m. at Auditorium Shores right here in Austin, Texas.

What better way is there to spend your Saturday morning then helping save babies lives?

Come by, see Bryce and walk with us!


OH AND DON'T WORRY IF YOU HAVEN'T SIGNED UP TO WALK, YOU CAN DO SO HERE AND YOU DON'T NEED TO MAKE A DONATION TO SIGN UP (THOUGH WE'D SURELY APPRECIATE IT!)

teamBAM March for Babies Walk Day Details:

• We'll be there by 8 a.m. with light breakfast snacks, coffee and ... t-shirts!!
• The walk starts at 9 a.m.
  
• teamBAM will have a blue 10' x 10' tent set up just for our team where you can meet up with us anytime before 8:50 a.m. (after that find us in the crowd getting ready to walk)
• When you enter Auditorium Shores from Riverside Dr. our tent will be on your left (as you walk toward the water) kind of between/before the large BBVA Compass tent and the huge Family Teams Tent
  
• We'll also be around after the walk for at least an hour for fellowship and ... t-shirts!!

Parking:

• Riverside Drive will be CLOSED from Lamar to 1st St.
  
• Paid Parking will be available at:

- Palmer Events Center Garage at 900 Barton Springs Rd for $7
- One Texas Center Garage at 505 Barton Springs Rd for $7
- Austin Convention Center at 500 E. Cesar Chavez for $8

• Don't park at Hooter's, Auditorium Shores lot, Homestead Hotel or in nearby neighborhoods as they will be towing. (And please don't make me tell you I told you so, ha!)

Miscellaneous:

• Tug's BBQ will provide sausage wraps and chips for just $1 and part of the proceeds will go back to the March of Dimes!
• In an effort to go green there will not be water bottles provided this year but there WILL be "WaterMonsters" to fill up your own cups/bottles
  

teamBAM!

It's that time of year again, the March for Babies is Saturday May 7, 2011 at Auditorium Shores.

PLEASE walk with us, buy a t-shirt and help us give every baby a fighting chance!

T-shirts are only $20 this year and $9 of that goes straight to the March of Dimes. (Yes, that mean's they're cheaper than last year AND each shirt raises more money for the babies than last year's!)

Want one? You know you do!

Just shoot me an email with how many and what size, I'll order them and pay for them and you can pick them up the day of the walk or I'll personally pay to mail it to you if you can't make it on walk day.

I've been very busy with Bryce, work and my March of Dimes parent to parent volunteering and so have unfortunately fallen behind on our teamBAM works for the year so I need to know ASAP if you'd like a shirt.

PLEASE let me know today or tomorrow so I can make sure we all get them!

Here is what they look like...


teamBAM! t-shirt front:

teamBAM! t-shirt back:

If you're gett ing this email, reading this blog post or otherwise seeing this than you know that Bryce struggled for many, many weeks in the neonatal ICU after his extremely premature birth just to survive. He weighed only 1.5 pounds at 12" long, his eyes were fused closed for weeks and he could not breathe on his own for many months.

Every day, thous ands of babies are born this way: too soon, too small and often very sick.

And it's the March of Dimes' research that is helping these babies fight for their lives. It's the artificial surfactant and nitrous oxide therapy that were discovered by researchers funded directly by the March of Dimes that gave our Bryce his fighting chance. And look at him today.

Wouldn't it be an awesome tribute to Bryce's incredible fight to have a huge group walking in his honor May 7th? We think so! That's why we've created teamBAM!, and that is why we hope you will walk as part of teamBAM at Auditorium Shores on Saturday, May 7th at 9 a.m.

If you just can't make the walk with us, please help by donating to our team or purchasing a t-shirt.

To make a donation or sign up to walk with us visit the teamBAM! page, to order a shirt email me with the size and quantity you want.

Thank you for being a champion for babies!

Another Family Sunday, Another Bryce First

Bryce has the uncanny ability to do a thing out of the blue as if he's been doing it forver (and you haven't been working tirelessly to get him to do it for months) and then not repeat said action for what seems like forever. It's ironic, it's funny to quip about but it's so frustrating!

For instance, just two and a half weeks ago I posted that Bryce had pulled up for the first time. I was very excited. So excited that I forgot about his track record on these kinds of moments and expected he'd do it again in a day or two. Well, two weeks to the day, with the same occupational therapist here to see, he pulled up for a second time.

It's like when he said apple, or up or yummy. He said them - clearly. But once and only once. It's also kind of like how he has figured out that I can't not laugh when he sticks his tongue out and turns his head up to a food offering at meal time. Except that one he's beginning to make an unfortunate habit out of. (Note to self: must stop laughing at inappropriate behavior.)

That is all besides the point though. My point is actually that we had a splendidly lazy Sunday. The weather was spring-like and beautiful and we were blessed with surprisingly few things to do. So we took Bryce for his first picnic out on the green lawn behind the Arboretum. We had a great time lazing around on the soft, lush grass.

And Bryce FINALLY drank from a straw. Not just a straw, but also a sippy cup. It's the little things that seem to bring the greatest joy. He picked up his cup, took a big gulp like he'd been doing it his whole life and ... wait for it... is still doing it!

It's like he found his desire for fluids finally and is making up for lost time. I must have spent several minutes through out the day today just sitting back and taking in him drink from his cup.

I know it's silly, but this little achievement is huge for me. Bryce may be behind, very behind even, but he's getting it all - in his own sweet time, of course. Bryce style - Bryce time.

Here are a few pictures from our picnic:

Bryce and Mommy

Bryce and his very first, very own hamburger. He ate very little of it but enjoyed very much of what he did eat. (By the way, 5 Guys Burgers and Fries really are good - just ask Bryce!)

Bryce sitting!!!!!!!! By himself!!!!!! He does this on occasion. We've only been working on it physical therapy (and every other day of the week as well) for months and months. He just doesn't have the desire to sit for long, he'd much rather be going, going, going.