Our double blessings

A look back, the boys journey.

2014-03-15T15:13:00.003-04:00

We are getting ready to do our annual walk/fundraiser for our local children's hospital. We have million dollar babies (literally) and we are eternally grateful to Golisano Children's hospital for everything they did, and continue to do, for our sons.

This is our story:

Mark and I married and we worked, went back to school, traveled to far away lands (Mexico, Ireland, Paris, and even China). It was amazing but we always always dreamed of becoming parents. It took us awhile, and then even some medical intervention but after 10 years of marriage we finally grew our family. We felt beyond blessed to learn we would be having not one but TWO babies. We were euphoric!!!

Early on in the pregnancy we had complications. We had "common" issues like spotting and not so common ones like the babies sharing one placenta and then not having nearly enough thyroid hormone early on in the pregnancy. I had my thyroid removed several years prior and the dose I was on turns out wasn't enough for the twins and me. These issues were stressful but manageable.

However, week 18 was when the pregnancy would turn much more complicated. During a routine ultrasound where we were so excited to find out the gender of our babies, we only learned the gender of one and instead found out that our baby "B" had Spina Bifida and hydrocephalus. Hearing that there is something wrong with your baby is incredibly scary but we were completely unfamiliar with what Spina Bifida was and the way they talked about it we thought it was a death sentence. In fact we were encouraged to terminate the pregnancy at this point as it was said that our baby "B" would have a very poor quality of life. We were stunned, but this ofcourse was never an option for us.

We would later learn that baby "B" (now known as Alex) would have other birth defects unrelated to Spina Bifida as well. These included a congenital heart defect (VSD), congenital scoliosis, a horseshoe kidney, and urology defects. We were overwhelmed with worry and uncertainty about what Alex's future would be like but just a couple weeks after this we realized that Spina Bifida would be the least of our worries.

At 20 weeks we learned that our babies had stopped growing at a normal rate and that in fact they had been monitoring their growth for several weeks. After many tests we learned that my placenta was not functioning properly and instead it was having intermittent and at times reversal of blood flow to the babies. We were told that there was nothing that could be done medically for this, we just had to watch and wait. We were gently prepared by our doctors that we might lose our babies at any point and we went in for monitoring twice a week after that. It felt like our whole world tipped over during this time. We prayed, researched and clung to our family and friends. We were determined to remain hopeful.

Against all odds we made it to week 26 which was then that they considered the babies potentially viable. Their heart rates however kept faltering on stress tests so at 26 weeks pregnant I was admitted for hospital bed rest and 24 hour monitoring. We were told every single day the boys could stay in the womb increased their chances of survival at this point and decreased complications, even with the placenta issues we were having. Their size was still lagging behind several weeks "younger" than expected even then. They were still growing but very very slowly. If you know them now, you'll see that this is a very familiar trend even today.

The doctors goal was that we make it to 32-34 weeks gestation but said even 30 weeks would be okay. We had several scares during this time with the boys heart rates faltering but they would recover and we made it two more weeks in the hospital before we had to finally and urgently deliver. Even though I was receiving medications to halt contractions, the boys were not tolerating their environment anymore. It was still a full three months early but delivering them then at 28 weeks although far from anyone's ideal, would quickly become their best chance at survival. It was absolutely terrifying.

The doctors would later tell us they did not know if they world be bringing two babies or even one alive to us that day. The boys were born at 28 weeks exactly weighing one pound 10 ounces, and one pound 12 ounces. I was put under anesthesia but Mark was able to see them very briefly after they were born as they rushed the babies by. They were immediately hooked up to ventilators, heart and blood pressure machines and wires that seemed endless. For the next few hours they would be assessed and stabilized. It would be several hours of excruciating waiting before I would get to have a look at them for the first time.

Just 48 hours after birth at a pound a half Alex would undergo spinal surgery to close his spinal birth defect. He was at risk of meningitis if his back was not closed as soon as possible but he was not as medically stable as they would have liked him to be to undergo surgery. We felt like we had little choice and knew he needed the surgery. We talked with hospital staff and were able to baptize both of ours sons right there in the hospital just before Alex's surgery and again clung to each other and our faith. We prepared ourselves as best a parent possibly can that we may lose him and it was simply an agonizing wait.

Weeks later, the pediatric neurosurgeon would tell us afterwards that it was the largest opening he's ever repaired on the smallest baby he had ever worked on. He needed the help of a plastic surgeon to close the wounds, but in true Alex fashion, he continued to defy all the expectations and did well and now just needed time to heal and grow.

Our other miracle baby Nicholas was not born with Spina Bifida but still had his own obstacles to overcome. He was only two ounces bigger than his twin and could not breathe on his own, regulate his blood pressure or body temperature. He would also require blood transfusions, a heart surgery, and battle a life threatening septic infection, and another surgery during his stay.

It would be a week before we could hold Nicholas and three weeks before we could Alex for the very first time. Before that it was just reaching into the incubators to touch them and whisper to them.

We could only hold them for a few minutes a couple times a day because they could not keep up their body temperatures out of the incubators and even just the movement in and out of their beds were stressful on their bodies those first few weeks but these moments got us through all of the rest of the moments and were simply sheer bliss!

The weeks that followed alternated between terrifying and exhilarating as the boys battled and overcame infections, surgeries, and the like.

After a long six weeks of an emotional rollercoaster ride, both boys were finally able to come off ventilators and soon after just "regular" supplemental oxygen.

Believe it or not this was the "step down" from the ventilator. Even though it looks more cumbersome, its actually much more gentle on their lungs.

After multiple trials of starting/stopping, they were slowly and finally able to tolerate tube feedings.

They worked hard at keeping up their body temperatures outside of the incubators

and finally little syringe feedings by mouth.

First bottle

After a longgggggg three and a half months in the NICU, both boys defied all the odds and came home--again just days apart from each other.

That first year was A LOT of waking them around the clock for medications

and weekly doctors appointments.

Alex would undergo three more surgeries after coming home,
a total of six surgeries that first year and a half, and Nicholas would have three surgeries.
That first year or so would be the most stressful I have ever known.

But to look at them now other then their small size you'd never guess their tumultuous start. They continue to have some medical monitoring from the vestiges of their severe prematurity but they are certainly quite minor given just where they began.

oh how we have been blessed!!!!!!

Words can not possibly express the gratitude that we hold for ALL of the doctors and nurses who have and continue to care for our sons at Golisano Children's hospital. We can't possibly give back what has been given to us but every year we will walk in gratitude for the hospital that with Gods help gave us the world. For my local friends, please consider walking and celebrating them with us !!!!!

If you're reading this and would like to join us in celebrating our boys and helping us give thanks to the place that has given us so much, you can also visit our page here

Houston!

2013-08-31T15:27:00.003-04:00

Wow, its been forever since I've posted, and nice that I just looked at my LAST post over two months ago where I wrote I was going to be a better blogger (maybe some day ?) ha,ha.

We've enjoyed a very busy summer filled with friends and family, travelling and memory making. I'll start with our most recent trip to visit the boys grandparents and Aunt Becky in Houston Texas.

The adventure started out with the boys first plane ride

Alex and Daddy sat behind us on the first plane

After take off, I heard Alex say "more flying?"!!!!

He was afraid we were done.

I had the slightly more nervous passenger.

He started to cry when it was time to walk onto the plane

and I thought "oh no, this is going to be a long day"

but once we got going, Nicholas really liked it too!!!

and forget all the things I thoughtfully packed to keep them busy on the plane.

All this one needed were those headphones. It didn't even need to be plugged into anything.

He pretended they plugged into everything and was perfectly content!

Nicholas preferred his to actually work

and loved being able to watch

"Franklin" or "Ratatouille"

(thanks to our friends the O's for letting us borrow the portable players!)

This is actually on the plane ride home

finally passed out after a long day of travelling.

Not so much with my co-passenger,

he said simply "baby froggy is not tired mommy."

Grandma and Grandpa were excited about our visit

and thoughtfully planned lots of fun things to do and see.

Our first visit the next day was to the children's museum of play

The ambulance was the kids favorite thing here by far.

They are a little too familiar with all the medical equipment.

They showed the "big kids" how to listen for breath

and "belly" sounds and Nicholas shockingly

knew exactly how to "bag" a patient.

Mommy and Daddy remember this happening several times

with both boys during those initial NICU days but really,

where did he learn that? If that wasn't weird enough,

he tried to give the "patient" mouth to mouth after......

Actually their "medical" kit was the one thing

the boys wanted to make sure we brought with us.

The boys wanted to make sure Grandpa had a check up,

multiple times!!

The next day was a drive to Galveston beach.

It was an almost two hour drive but worth it.

The water was warm---seriously warm.

and it was shallow and calm enough for the boys

to splash and swim around..

and ofcourse built sand castles!

Grandma and Aunt Becky enjoying some quiet time

and shade

We practically had the beach to ourselves,

we seriously could have stayed here happily for days....

Next day was the Houston Aquarium

....just keep swimming, just keep swimming....

Kids thought this could be Dory from "Finding Nemo"

Nicholas: wow, these fish are almost as big as me

Careful Aunt Becky :)

Seriously very cool place

and most things were accessible for Alex

And when they weren't....

well ~~luckily Alex is still little enough~~,

I mean look how strong Daddy is :)

We also visited the Houston Space Center

I regrettably don't have many pictures.

We walked around mostly in awe.

Waiting for the tram tour

And you think YOU have a hard job :)

The museum of Natural Science

Again, wish I had taken more pictures.

This place was incredible and honestly its something I would

have loved to do without the kids, at least at their age right now.

There was so much I wish we could have seen,

or stayed longer to read and learn. It was really incredible!!

We tried to keep the kids entertained so lots of dinosaur viewing

Seriously, can you imagine these guys just walking around? yikes!

sharks mouth, yikes!

and Egyption period.

Kids were fascinated by the mummies

even though they kept pronouncing them "mommies"

I saved the Houston Zoo for last because it was truly one of my

and the kids favorites.

Tons of animals, yes but the zoo itself was more like a park

It was simply stunning and definitely

I know my pictures can't do it justice but it was really breathtaking

Nicholas: wait, what the?

I'm outta here!

ummm is it just me or does he still look hungry?

Nicholas thought he was just a little "too big"

He preferred the one that didn't move, or eat!

We had a fabulous time and made lots of memories

a HUGE thank you to

Grandma and Grandpa for having us out!!!!!

Camping

2013-06-17T15:28:00.000-04:00

On the road again.....

I'm going to try to be a better blogger.

I've been (finally) filling out the boys baby books

and this blog is really the place I've chronicled the big and little stuff to look back on.

I hope the boys will enjoy it too when they get older.

Its also been a great way to keep out of town family and friends in the loop with the boys

and I'm always pleasantly surprised when I get an email from someone we don't know asking information about spina bifida or food allergies because a friend of a friend pointed them our way.

We've relied on so many others during this journey and I"m sure we will continue to do so

and it feels really good to be able to give back a little bit of our knowledge or experience

to any one who might need it the way so many others have done for us.

Anywhooo.... We kicked off our summer this weekend with our first camping trip of the season.

It was Father's Day weekend and that was exactly how hubby wanted to spend it.

Its not a big secret that hubby is more excited about this camping business than I am,

hence why we gave up roughing it by tent a few years ago

and got the camper (a.k.a the hotel on wheels).

Its honestly a lot of effort to get all the clothing, meals, food, sheets, pillows, diapers, loveys, toys, medicines etc. all packed up just to unpack them all again two days later.

So I guess I'm kind of a grinch about it, begrudgingly getting everything ready and packed up, all because hubby really likes it, and its good for the boys, yadayadayada.

And our boys who are just a wee bit OCD with routines and everything has to be the way it "normally" is, well lets just say that first night of camping was not all that much fun initially.

Except I admit when the 'work' is done and we are unpacked and settled at our site,

there is something very special about getting away like this.

We are unplugged from the Tv, internet, and phones and just focus on

being together. There isn't a mile long list of things we "should" be doing like if we were at home.

When you are camping, you are "supposed" to take walks,

dig in the dirt, find sticks and bugs, jump in puddles,

or just wear your rain boots every where

Camping is about just being a kid, exploring, playing

trying new things

sometimes new things are a little bit scary

or hard work (alex climbing all the way up)

but on the other side....

it sure feels great and gives us confidence for the next thing!

Oh......and every one knows its just not camping

without the marshmallows!!!

A very good and humble reminder that sometimes

it truly is the little things in life that are really really sweet :)

We have a walker!

2013-06-12T15:09:00.000-04:00

this video was taken just a week into Alex having the walker.

I take for granted that every one is on facebook these days so things don't get to our blog as readily as they used to. Some things don't get here at all, bad blogger! So for any of our family or friends who follow here, here it is.

We have a walker!!!!

To think that there was a time that we almost didn't pursue this. The doctors, therapists all told us it would be cumbersome/heavy/sweaty and take A LOT of effort on Alex's part (and ALL of those things are true) but he LOVES it and as with everything else, Alex lets us know when he's ready and he defies our expectations every.single.time!!!

Thank you to our "Miss Patty" who decided almost immediately that we should try a walker after seeing him want to move around in his braces. We had NO idea what to expect but agreed, sure lets see what he wants to do with it.

Alex you are so sweetly shy, hesitant with new things, new people but when you figure out that you want something, watch out world! Your determination, your strength, your mile wide stubborn streak, they all make me love you more. I'm so unbelievably proud of you Alex!!!

The Invisible mom

2013-05-12T08:40:00.001-04:00

This was shared to me by a friend and I think its a perfect reminder on Mother's Day.

To all the incredible Mother's I am blessed to know especially and including my own!!!!

THE INVISIBLE MOM

One of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?'

Obviously not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The invisible Mom. Some days I am only a pair of hands, nothing more! Can you fix this? Can you tie this? Can you open this??

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to order, 'Right around 5:30, please.'

Some days I'm a crystal ball; 'Where's my other sock?, Where's my phone?, What's for dinner?'

I was certain that these were the hands that once held books and the eyes that studied history, music and literature -but now, they had disappeared into the peanut butter, never to be seen again. She's going, she's going, she's gone!

One night, a group of us were having dinner, celebrating the return of a friend from England . She had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic, when she turned to me with a beautifully wrapped package, and said, 'I brought you this.' It was a book on the great cathedrals of Europe . I wasn't exactly sure why she'd given it to me until I read her inscription: 'With admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, four life-changing truths, after which I could pattern my work: 1) No one can say who built the great cathedrals - we have no record of their names. 2) These builders gave their whole lives for a work they would never see finished. 3) They made great sacrifices and expected no credit. 4) The passion of their building was fueled by their faith that the eyes of God saw everything.

A story of legend in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam that will be covered by the roof, No one will ever see it And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was Almost as if I heard God whispering to me, 'I see you. I see the sacrifices you make every day, even when no one around you does.

No act of kindness you've done, no sequin you've sewn on, no cupcake you've baked, no Cub Scout meeting, no last minute errand is too small for me to notice and smile over. You are building a great cathedral, but you can't see right now what it will become.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on. The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my son to tell the friend he's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for 3 hours and presses all the linens for the table.' That would mean I'd built a monument to myself. I just want him to want to come home. And then, if there is anything more to say to his friend, he'd say, 'You're gonna love it there...'

As mothers, we are building great cathedrals. We cannot be seen if we're doing it right. And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible mothers.

Author unknown

Share this with all the Invisible Moms you know... I just did.

The Will of God will never take you where the Grace of God will not protect you.

A New path

2013-05-01T23:17:00.001-04:00

We had quite a LONG medical appointment this morning with endocrinology for the boys. In short (he,he) the doctor believes given everything in the boys history and previous lab work, that their bodies just can't utilize their growth hormones effectively. He says 80% of preemie kids will "catch up" or shoot up on their growth curves by age two. He says the rest usually never catch up without intervention.

For all those who ask: yes we own mirrors. The doctor knows our heights and our parents heights. We understand our children would have never touched six foot status. We are simply talking "normal" growing patterns. The average child this age grows on average three inches in a year, our boys haven't even grown an inch this year and because they started so much smaller than the average---and they have never shown a growth "spurt", it is unlikely that they can EVER "catch up". At four years old (tomorrow actually) they are the roughly the size of a 16-24 month old.

He pulled up the boys growth ~~curve~~ line and we solemnly reviewed it. In four years they haven't budged a bit and have even fallen off their own line multiple times. He said this is really common for babies who had placenta problems during pregnancy which it was documented early on that ours had. No amount of food can "fix" that. I feel sad about this but also just a little bit vindicated (about the food stuff) at the same time. A feeding tube certainly wouldn't help this. All this high fat food diet hasn't budged either one taller a bit. We will take them for a full panel of blood work to verify nothing has changed and then push for insurance approval for growth hormone injections.

We went over the potential issues that are known about for using growth hormones in kids. Two particular concerns for Alex are shunt and scoliosis issues. In a very small percentage of kids, growth hormone injections could increase intracranial pressure, obviously HUGE shunt worry but he said this is rare and we will watch for signs. He said we can start on a lower dose and work up for this reason. The other concern is worsening of his scoliosis It was the reason we didn't push forward with growth hormone a year and a half ago. well that and we met with a different endocrinologist at that time and we just thought Alex needed more time to grow. It wasn't as clear about the statistics on preemies and catch up growth.

So the scoliosis issue is that any growth spurt can really worsen existing scoliosis Alex's is already in "watch" mode with ortho and has been for quite some time. However that doesn't mean we should ignore the fact that Alex just isn't growing in favor of being content that his scoliosis isn't changing. As endo explained, you wouldn't try to stunt another child's growth if they were growing normally, even if that child also had scoliosis. That made sense to me.

If the boys are unable to really process their growth hormones effectively, we should try to help with this if possible just as you would if they had a thyroid issue. Right now their bodies are closer to that of a MUCH younger child. He explained its more than just height, its bone structure/mass, growth of their organs (I kept thinking about their lung issues even though so much more improved this year than last, still requires breathing treatments through the night for every cold--simple growing of their bodies will also grow healthy lung tissue to take over the diseased ones).

We are NICU veterans. When the boys were born, we were thrust into a world where we quickly had to learn medical lingo if we were to grasp everything that was happening to and for our boys. We had lengthy discussions and signing consents being made to understand for every treatment benefit there was also a risk; risks that were known, and possibly risks down the road that could be learned later. For all the life saving miracles that happened for our boys their early months, there is also so much that is "guessed" by the medical professionals and much that is still unknown. When it comes to your childs health, their life, you want certainties, you want guarantees so its a very hard realization that even the specialists or the "experts" don't have all the answers. Those days were the hardest days of our lives but very powerful lessons learned. It was no surprise then when I asked this specialist if growth hormone will help OUR boys, given their history, health issues and current growth pattern and he said " there is no way to know for sure until we try".

We went into that appointment prepared that this would probably be recommended. We had researched and talked at length about pros and cons even before we heard all the pros and cons. I pray that our boys will get approved by insurance and have the chance to see if this can help them. I pray that if they do get approved that they will have the most benefit with the least amount of risk and side effects. At the end of the day, its a leap of faith. But then again, so are most of the wonderful beautiful things in life!

baby steps....

2013-04-21T15:55:00.000-04:00

What a difference almost four years makes.

Here are Alex's AFO's (ankle-foot-orthotics)

and now on the right his HKAFO's (Hip-knee-ankle-foot orthotics)

For those unfamiliar with these acronyms,

these are all custom made braces that help keep a childs feet in the right position,

and when the child is older helps to provide support in standing and/or walking.

Look at these itty bitty ones.

I didn't think to keep pairs, just one brace from in each size.

those first three are all just slightly different sizes.

I put a chapstick in the smallest one to give you an idea of the size.

The first one was from his NICU days when he was just a pound and a half.

In true Alex fashion, he continues to defy what all

the "experts" predicted.

We were told to be prepared that Alex would likely hate his new braces,

that they would be cumbersome, heavy and awkward,

that he'd likely be fearful in them, especially at first.

Honestly I don't think any one was trying to change our minds about

our decision in trying them, just trying to help us be realistic.

But actually both of my boys tend to be the exception to the rules.

I laugh when I hear a doctor say "well its not common but....." because

what follows the "but" is usually what our boys do--good and bad :)

Alex has LOVED his braces from the first go. I mean truly!!!!

He was never hesitant, fearful, or even bothered by how much

his momma has to struggle getting his legs straight to get in them

(the cumbersome part was definitely true).

He ASKS to stand.

Something he NEVER did in almost three years of using his stander.

Here he is the first time at home with them, reaching his play kitchen
for the first time without me holding him up to it.

and just a couple short weeks later.....

he's asking to walk!!!!!

Let me preface by saying that it is truly unimportant to Mark and I

if Alex walks or not. I know that might sound strange, but its true.

Years ago we came to terms with the fact that Alex was born the way he was,

and truly a gift to us (as is his brother). It was critical to us that Alex

be able to get around in whatever way he could to be independent and that he be happy!!!

When he was a year and a half old we found all of those things in his little speedy wheels. At that time he didn't have the core strength to hold himself up, even with all of his efforts and therapies, so we couldn't even consider any type of braces designed to help him walk. Honestly, when we saw how happy he was able to maneuver around in his wheels, we really haven't looked back since.

We'd revisit the options from time to time with his therapists and doctors but we didn't fixate on it. Alex was happy, thats all we needed (and still do).

These last six months in preschool, he has had an explosion of new skills,

developmental and physical. He's gotten sooooo much stronger. When

he started pulling himself to his knees for the first time, we were in awe.

When he started verbalizing wanting to stand, we talked to the right people

and got what he needed.

and now......

He's telling us HE wants to walk.

This is brand new to us.

Mark and I are really kind of standing back,

keeping our expectations in check.

I truly don't know what his body will let him do

but he's got his mind set on it. So its my job to do everything

in our power to help support him.

where-ever that leads.

His therapist has ordered him a walker just his size,

we are waiting for it to come in.

She explains we will try having the walker in front of him

and he will move the walker forward and use it as leverage

to swing his legs forward after it, and so on.

In the meantime, he's happy enough to have us

help hold him while he practices.

He's usually exhausted after doing a couple feet,

he rests/plays and then with the brightest smile

and the sweetest little voice looks at me and says

"mommy: I want to walk again."

It doesn't look like traditional walking ofcourse.

He is paralyzed below the hips and can't move his legs.

But when you hold him, you can feel EVERY muscle in his core

as he's telling his body to move forward.

He inspires me.every.single.day with his determination!

This isn't the best video but its the only one I have for now.

Standing for the first time!!!

2013-03-14T22:15:00.001-04:00

Alex has been showing more interest in wanting to stand.

this is new for him.

He'll pull himself to his knees and says

"look momma, I standing"

so sweet.

We've talked the last couple years of whether we should pursue long leg braces.

but before now, he was so happy cruising along in his wheels

and honestly his trunk hasn't been strong enough to try braces.

We were also told that the braces can be pretty heavy, cumbersome

and that a lot of kids just don't like them.

but here's this sweet little boy

telling me he wants to stand.

So Momma calls the doctor,

we get an appointment

we say lets just give these things a try

and the doctor agrees.

I know someday he's going to want to kill me for these pics in his diaper

but.........

I'm just proud of what a champ he is!!!

smiles the whole time he's being casted.

Fast forward one week...

Here's our boy standing on his own two feet

for the very first time!

He holds onto his Daddy for dear life at first

he does his nervous giggle

but he's all smiles.

He shakes his head yes when I ask him if he likes them.

Nothing prepares you for the flood of emotions you feel

when you see your child standing for the first time.

I remember feeling that way about Nicholas.

something about those firsts.

But this is one of those firsts we really weren't sure we'd have.

It makes it just that much sweeter.

People have asked if he'll eventually be able to walk with these braces.

We don't know the answer.

When we first asked for these braces for Alex,

we just wanted to help him stand upright,

be eye level with his peers,

get closer to things to play, interact.

And also for health benefits,

get his muscles/bones stronger.

Really anything else is just gravy.

But I saw my son in those braces,

I saw his face.

I think he can do pretty much anything!

We'll continue to take this road where-ever he wants to go.

update and a video.

2013-03-13T15:12:00.001-04:00

My mind has busy busy busy processing all of the information from yesterday's GI visit. I have received a ton of messages and private emails with information and support and feel truly blessed to all the people who have reached out.

This surgery that is recommended is not life or death and for that I am grateful. It almost makes it a little bit harder as my husband says because it would be elective, leaving it up to us to make a decision to act or not act.

It boils down to simply the boys for whatever the reason(s) don't take in enough calories to maintain adequate growth---on their own growth curve---no one is trying to put them on a typical growth chart, trust me-

My theories are simply that we know that they have slow gut motility (things move very slowly through their systems so they FEEL full), they were born soooo little and already way behind the ball when it comes to growth. Also we knew even in pregnancy that their growth had stalled giving them their first failure to thrive diagnosis which was "intrauterine growth restriction". We knew early that the placenta was having issues with blood flow so the hope was that this trend would reverse when they were born. But looking back, we've ALWAYS had issues getting the boys to feed. First it was said it was because they were so premature, then it was because they couldn't tolerate the early feeding tubes, then they changed formulas a few times, then they were too little to figure out the eating/swallowing/breathing thing, and then it was reflux. It was always something, never a sit back and relax while your baby ate but instead a battle of could we get them to eat more than a couple ounces.

While the story changes slightly, truly we've been battling with them over nutrition for a very very very long time (their whole life really). In my mind I truly wonder whether something just went awry when the genes were being handed out, or maybe something else was going on with their little bodies at the same time their appetite center in their brains were supposed to be forming and it just didn't finish, I don't know. Maybe micro preemies or at least my two will not just be small but tiny.

Also on my mind are all the medications that they are and have been on. From the very early days, they needed all kinds of machines and medicines to survive. We understood from that time that for every possible benefit, there were more possible side effects, some long term. Does any one even know what all of those are? I don't think so.

Even almost four years later they are on asthma and lung medications daily. I looked at just one of those medications and it said it could impact growth. I called the doctor about this ofcourse. They said it shouldn't by itself cause failure to thrive, just long term use is thought to possibly cause shorter stature but they said more than likely only by a quarter of an inch, not what we are dealing with right now. And certainly the benefits of the medications are outweighing that. I've talked before about the boys chronic lung disease, also known as BPD. Its one of those long term side effects caused by the ventilators they needed the first couple months of life. People mistakenly assume when I get a little crazy about trying to keep my boys away from other kids that I KNOW have respiratory issues that I just need to relax and let their immune system build. To a point I understand that but its their lungs I'm trying to protect until they are bigger and can grow some more healthy lung tissue. The lung tissue that they have now is like cardboard and it simply can not expel mucous the way yours and mine do. The only cure for that is time. Their pulmonary doctor said their lungs will continue to grow for 5-7 years and its in relation to their overall body size, like any of your organs. So hmmmm, they have definitely grown healthy lung tissue but given how little they are, they still have quite a bit to go. In the meantime, their nebulizer treatments help keep stuff out of their lungs and make it easier to breathe when they do get sick.

As usual, I digress.

Back to the issue at hand, I can tell you that my husband and I are exhausted with the food battles in our house. It takes over way too much of the day to day when there is so much else to focus on. Today, I'm analyzing the boys food intake and schedule with new eyes. When feeding tubes were first discussed over the summer, we were all gung ho about offering them new foods, sneaking in extra calories, extra pushing of their high calorie shakes, trying new recipes, adding duocal powder to everything but at some point its hard to keep up the intensity so you don't realize it, but you start to drop off the intensity in favor of getting busy with other "normal" day to days. We just can't afford to slack off about this, and we did just that.

Today we are back at researching high calorie foods and recipes, changing up their schedule a bit, decreasing snacks in favor of trying to get more bang for their buck at meal time, anything we can think of to get and keep the weight on.

I've received a number of messages saying that the G tube is not the end of the world and trust me, as much as my stomach was tied in knots yesterday about it, I do get that. We (and the boys) will manage that just as we've managed a dozen other things. I understand that for some children, this IS the best option of getting sufficient calories in safely. It may end up being what one or both of my children need at some point but in my heart, I just don't think we are there yet.

I desperately want to try other things, and try them again if needed. I want to know that before we hand our boys over to a surgery, that in my heart I've done EVERYTHING else first. Alex has had six surgeries in his short life and has two more surgeries in his future that we know about (an atrial septal defect repair and a scoliosis surgery). Honestly hearing about the G tube was kind of like the feather that knocked me over. I'm just not there yet.

The boys preschool teachers and therapists have offered to really encourage on their end, even said I could send in the boys duocal powder and they'll add it to any morning snacks they have, etc. This is not a journey thats often understood by people who aren't dealing with it personally and you can feel pretty overwhelmed and alone while trying to figure it out. I am so thankful that we have such a team of people around us who are so willing to help.

I also spoke to my boys pediatrician and we are going to try the appetite stimulant again. I don't feel like it did anything last year when we tried it and in fact I think it really keyed Nicholas up in a negative way but the pediatrician suggested maybe it will have a better effect now that they are a bit older and honestly, its definitely worth another try. We are waiting on the boys endocrinology consultation which won't be for another six weeks. The next GI appointment isn't until July so I feel like we have some decent time to see what we can get the boys to first. So send positive thoughts our way, because here's hoping!!!

On a completely different note, I took this a few weeks ago and I thought I'd share it because I just think I have the sweetest boys around. We still use a video monitor because the boys room is on the opposite end of the house as ours and heck, its just kind of hard to give it up, especially when you get to see glimpses like this.

I had just went to turn it on and quickly got my phone to capture this for Daddy.

Mind you, Alex is not one to accept help from his brother easily, at least in the face of mom or dad.

Its always "no Nicholas, I do myself."

and my husband and I are careful NOT to let Nicholas think he is in any way

responsible for caring for his brother any more than Alex is responsible for caring

for Nicholas.

(other than the regular be nice to each other kind of thing).

But I've always felt that there's a very special bond with these two and

I think Alex lets Nicholas be the little Mr. Mom he is when we are not around.

My heart smiles watching this, hope yours does too!

feeding tubes

2013-03-12T15:27:00.000-04:00

We had a lengthy appointment today with the boys GI doctor. We don't look forward to these appointments since growth is something that the boys obviously don't excel in. I didn't expect to leave with such a pit in my stomach. This was when we first became familiar with the term failure to thrive.

Its not the first time a G tube has been brought up. But today they pushed harder about it. The boys made some initial weight gains after being on the high calorie prescription shakes back in the summer but its getting harder to get them to drink them and now they are less likely to eat much at all because the shakes fill them up. I feel like we are in a viscous cycle. Without the shakes, they are not taking in enough calories but even with the shakes, when we can get them to take them, its not enough to show adequate growth.

I'm fine with my kids being small. I've said a million times before we are not giants either. But its MORE than discouraging to see them lose weight (they weigh less right now than at their last visit six months ago) and falling further away from their own growth curve. Trust me if they EVER got on any "regular" growth curve, I'd throw a freaking party--a BIG one too, I kid you not)!!!!

As with a lot of other failure to thrive kids, there's just no clear reason why they are not growing well. Food allergies aren't helping. I'd love to go through the drive thru and pick up some really tasty high calorie laden goodies for my boys but I can't. Heck, they'd probably only eat a couple french fries and be full anyway. A lot of the other big stuff has been ruled out which makes the path to go a lot less straight forward. Hubby and I were content (at least partly) to do the wait and see. You just hope that at some point something will click with them and make them WANT to eat. At some point, you just kind of expect that a big growth spurt will happen, not to make them six foot mind you, but hey a couple inches would suffice.

To spend so much of your time cajoling, bribing, sneaking in calories every which way and still end up with a LOSS is beyond frustrating. Really, I left the appointment near tears because as a mom it feels really like I'm failing. How can you have not one but two kids who aren't growing, who don't want to do something as basic as eat? This isn't something you should have to stress over, and work at. Getting your kids to eat healthy, yes that is the kind of effort I would understand. Prepping for the weigh in at GI lastnight and I'm sitting there trying to woo them into eating a couple bites of a stinkin pop tart, or a single bite of cupcake with frosting. Nicholas flat out refused. Seriously, what kid doesn't want that? I still worry that I'm "breaking" my kids with what I affectionately call the pop tart and oreo diet but when I give them fruits/veggies, they fill up on them so fast so again, I feel like we can't win.

So almost four years old and Alex is 31 inches tall and not even 24 pounds, Nicholas is 34 inches and a whopping 24.1 pounds. They had both gotten closer to 25 pounds on/'off but they can't maintain that.

I have to submit a food diary for the both of them when we meet with the nutritionist again. I don't need a dietary degree to tell them that they are not getting enough calories in. I know that. What I don't understand and may never understand is the why. When they were in the NICU they were found to have "delayed gastric emptying" and I wonder if thats part of the story now too. They eat a couple bites and are full. With those high calorie shakes, they probably never feel truly hungry. However they were only put on the high calories shakes because the bites here and bites there before that never added up to enough for growth either so where does that leave us?

They are sending the boys to endocrinology for a work up. Alex already had one at two years old and it showed nothing abnormal but they said lets look again. Nicholas has never had one so we'll see on that. My gut is telling me that nothing will be found amiss. GI tells us they really have nothing left to offer other than the G tube. Taking my emotions out of it, I understand where they are coming from: two little boys (for whatever reason) are not taking enough calories in to grow, therefore, give them a way to get the calories in and hopefully sit back and watch them do just that: grow.

If it were that simple but my stomach is all tied up in knots; Thinking about an invasive surgery for not one but both of my boys and what if I put them through all of that and for whatever reason, their bodies are just meant to be teeny tiny? It might seem sort of silly but giving them a surgical "button" seems extreme to me. They are not children that CAN'T eat/drink safely. They DO eat and drink and I don't want them to lose that drive, what little of it there is. If we went this route, how long is it typical for and what is the weaning like? I've gotten several personal messages that some kids have lost all interest in eating by mouth when they are tubed and they are on it for years with struggles for getting off of it. I've also heard stories from friends of friends that it can do exactly what you hope, get kids over the hump, get them to get growing. Ofcourse with any surgery comes the risk for complications, infection, etc. Then there is the logistical stuff like how will Alex belly crawl or get on/off his scooter board without tugging on it? I'm just having a hard time wrapping my head around this.

On the flip side, how long do we sit back trying the same things and getting very little results and at what cost to the boys? Do we put them through the surgery and take it out in 6 months, a year if it doesn't help? Are there ramifications for this?

If I had a crystal ball to know that this surgery would turn things around for them, give them the added fuel that their little bodies need to grow and reduce the stress on all of us, wouldn't it be worth it?

If any one is reading this and has experience, PLEASE feel free to message me. Oh and also if you have a working crystal ball, that would be lovely too :)

The coolest place!!!

2013-02-24T16:18:00.000-05:00

If you are ever in upstate NY, this is really the coolest place to check out with young kids.

National Museum of Play

We are soooo fortunate to have it right in our backyard.

Its impossible to share just how much fun your kids (and you) will have here.

There's just a ton of things to do

but here's a sampling of what our boys love!!!!

The wegmans store is probably their favorite.

Really, Its set up like an actual store.

Its complete with shopping carts, tons of "food" products,

scales to weigh items, you name it.

Nicholas diligently checking labels. He's gotten very good at asking

"is there milk in it?"

Right after I took this picture he shook the can and said

"mom: this is empty." and put it back.

ha,ha

Alex curiously putting all the things he doesn't eat in his cart, ha,ha

I mean really, they even have out of season items: pumpkins--in February!!!

It even has a check out center that your kids can scan things

and then play cashier for themselves and their friends.

Get this: it will even print you out a receipt of what your little one "purchased" complete with date and pricing at the end of your visit.

Seriously, my boys could be content spending all their time JUST

in this little store.

Their next favorite place is Sesame Street.

Here they are with their best buddies from down the street.

There's a video here where they are actually

seeing themselves on TV with Elmo.

couldn't get a great picture of it here but the kids

get a kick out of it!

You can even talk to your favorite characters

on the payphone of all things....

Here's a taxi cab that the kids can "drive"

and if you look closely you can see that

Cookie monster and Elmo tagging along in the back.

The boys friend Matty is trying to figure out how to shut

the door and take it for a spin.

The kitchen

with all the accessories

our friend Benny is the cutie modeling

the apron

Everything is just about the right size.

notice the tippy toes.

The workshop

A place where everything is built out of legos..

A rare pic with the five friends together!

There's even a spot to drive a boat

Safety first, complete with life jackets to wear.

Every time we come Alex has to say hi to his

friends the Berenstein bears.

He actually leans over and tries to hug them!

There's also the more typical things like climbing structures

Nicholas did great climbing all the way up by himself

but had a little bit of trouble trying to figure out how to get down.

Alex preferred doing the slide over and over and over!

We managed to come and play

TWICE this week since the boys had off from school

and we STILL can't get through the whole place.

They never get bored :)

Home projects

2013-02-11T21:34:00.000-05:00

I am so proud and grateful to my hubby

for all the projects he's done lately.

The boys are growing up and little by little we are figuring

out how to make things more accessible for our big/little boys :)

I know it looks like a simple coat rack

but I love that its hung low enough that Alex can reach to hang up

and grab his coat just like his brother.

I'd like to say hanging his coat up too but he's three and a half,

its not as much fun to put things away, ha,ha.

I should have taken a picture but today I DID find a random snow boot

just hanging out on the coat rack. too!

Alex is getting so strong although he still needs a little support.

We used to put a full booster seat on this chair but after awhile we realized he didn't

need quite that much support anymore.

Hubby rigged up this little seating system so Alex could sit at

the same table as his brother and still get the support he needs.

It is literally made out of four foam floor mats using velcro to keep them together

and a seatbelt bolted to the chair.

My favorite project yet? A ramp for Alex's bed!!!!!

Hubby really out did himself with this one!

We saw the idea forever ago on our friend Grey's blog.

and I never forgot it.

Now that Alex is bigger and stronger and becoming more independent, we knew it was time.

Thank you to Leigh and Andy for an awesome idea!!!

I don't think you realize how much you have guided us both with the technical stuff

and the not so technical stuff from the very beginning!!!! :)

The ramp slides right between the mattress and bedframe.

Its quite a work out for him but he LOVES it!!!

Guess who else loves it???

oops....traffic jam

sliding down over and over

ofcourse is the best part :)

Tests

2013-02-11T15:12:00.001-05:00

Tests, I don't like tests. I Have always been too anxious a person to be a good test taker. Now as a parent I"m afraid I'm worse. Having to watch my little ones go through tests, well okay the medical tests I'm talking about now---well I dislike very much.

Life has been pretty darn good. I guess many of us bloggers can agree when you don't hear from us in awhile, it generally means things are status quo (or better). At least for me personally, I tend to write when I'm stressed about something. It helps to get it down on paper--well you know what I mean. It has always been a way for me to sort things out, gain perspective. If someone is struggling with something similar, well maybe in a small way its helpful to someone else.

Back here we first learned about the term Failure to thrive. I still wish they could come up with a better term, really! Anyway, things have been going along. I certainly don't have big eaters or fast growers but with some dietary changes and prescription soy shakes, we've certainly made some gains. Not the big ones that any of the docs have hoped for but slow and steady gradual gains. It should be called the pop tart and oreo diet because lets be honest, I totally abandoned the healthy olive oils, veggies, avocado spread stuff they wouldn't eat anyway in favor of a little junk food when faced with the alternative of feeding tubes. Yes, it came down to that discussion. When the nutritionist explained to me that no calorie is a "wasted" calorie when it comes to a growing child, it clicked. I still offer healthy foods, don't get me wrong but I let go of the guilt of the dreaded "junk" food if it meant that my boys could grow.

So a year and a half later we are still plugging along quietly. We are focusing on all the developmental gains the boys are making at school (more on that later), enjoying family and friends and the holidays and we hit a bump in the road.

A couple weeks ago I took Nicholas to the doctors for a check up, noticing his bathroom habits had changed. We got the okay to use some laxatives to help get things moving again. He's always needed miralax since he was a babe but even increasing that wasn't helping anything. So we used some laxatives for a few days and it seemed to help some. Until we stopped using it and then nothing for four days and the cycle would start again. Then I realized his appetite (never very good mind you) but now was almost non existent. To the doctors again, and she weighed him. Sure enough he had lost a pound and a half. What the heck? We went through "what else has changed?" talk. Can't come up with a darn thing. Now I'm keeping a food and bathroom log and feeling incredibly discouraged.

Before you start sending me notes, PLEASE don't tell a momma with a failure to thrive kid to just leave him at your house for a week and you'll get him to fatten up. honestly. All that feels like is its our fault, that WE are not doing something right. Trust me, I have done EVERYTHING I can think of to get my kid to eat. I have been bombarded with well meaning advice. For a mom with two little ones who could care less about eating, I spend way too much time thinking about their food only to end up throwing most of it away. All the boards I go to that talk about getting the most bang for your buck in terms of high calorie foods but they are all laden with things my two can't eat because of their food allergies. No milk, no eggs, no tree nuts. As frustrating as their food allergies are, its not the root of the issue. The issue is that right now Nicholas could care less about eating. Get him up in the morning from not eating all night long, should be ready to eat something, right? Nope. doesn't care, wants to play. Eats ONE bite of toast OR pop tart OR soy yogurt and says he's not hungry. He'd rather play. I beg him to take sips of his high calorie shake. I beg, plead, offer him to watch his favorite cartoon for five minutes if he just finishes four ounces. I have resorted to try anything to get the calories in, sometimes it works, sometimes it doesn't.

I have bribed, coerced, offered choices, taken away choices, offered nothing but his favorite foods, pretend I don't care about the food battle, made him sit at the table for XX amount more bites, offered a million snacks instead of meals, then stopped offering snacks and only done meals, offered dessert if he takes two more bites, refuse dessert if he doesn't. Honestly you know what he ate for dessert the other night? One quarter of an oreo cookie. I'm not kidding, then he was done. I have done everything honestly but force feed him. I have tried sending him to bed hungry when he doesn't want whats in front of him--really. except he's not. He doesn't care. Seriously. I understand the "typical" kid needs encouragement to eat their veggies, but to eat anything? I'm sorry--this just isn't normal and its ridiculously stressful.

Then to the next common discussion: nope my hubby and I are not giants. we certainly don't expect our kids to be either. We are not disillusioned. But an almost four year old shouldn't be losing weight without a reason. He hasn't been ill with exception of the run of the mill cold. Heck his twin brother had a terrible GI bug recently and he was still out eating and drinking his brother while being ill. And Alex certainly isn't a big eater either, Just doesn't make sense. Nicholas is down to 23 pounds and change. He's almost four years old.

The thing about "failure to thrive" is you very often don't get a "here's why." Its whats given when you have checked everything else out for inadequate growth and come up empty. So we may be stuck there, I don't know. He may have just hit a "stop" in the journey of "spurt and stop" and maybe he'll just pick up a little more again like nothing happened. I don't know.

We have a new pediatrician since our move to the new house and I trust her whole heartedly. She knows I'm worried and I think she is a bit too. She's doing a basic work up with blood counts, checking his thyroid and even checking for celiac disease just in case. We will get results in a few days. If nothing shows up on the blood work, we will trial a reflux medication. He had a strong history of this in the past and apparently children can have reflux without all of the typical symptoms. We'll trial it for two weeks to see if it helps with his appetite at all and if not we can file that away too. We are waiting on our follow up appointment with GI in four weeks as well.

Its a strange thing about these tests. I don't know what I"m actually hoping for. Part of me hopes for everything to come back normal, because ofcourse you don't WISH for anything to be wrong. But then again, then you're stuck with "what now?" what do we do with that? The other part hopes for a reason, and a fix but ofcourse you want it to be an easy fix, not something troublesome or scary. I know any one can relate to that.

so for now we wait and see.......

UPDATE:
All the tests came back normal, which is a HUGE sigh of relief. Nothing major going on which is a blessing but also leaves us wondering what the heck. We will still be consulting with GI in a couple weeks and I even think his eating has picked up the slightest bit so here's hoping. The doctor also decided to throw in some food allergy testing to re-check and the results stressed me out a bit. We already know he's highly allergic to everything dairy and then to a lesser extent, nuts and eggs. But the test came back that he's also allergic to soy. I kinda freaked out for a minute. His diet is pretty heavy in soy, and his main way of getting the extra calories with his prescription shakes. I didn't know what I was going to do. I talked with the doctor later and she talked me down from the ledge. She doesn't think its a significant increase and he's tolerating it fine. He's not vomiting, having hives or heck even eczema, all the things dairy did to him and his brother. She doesn't think whats going on with him now is related to the soy. We will continue to watch him and I am personally trying to find other alternatives that I can swap out without him missing out on the calories.

PLEASE don't send me messages about the potential negative impact of using soy in our diet.

When he was a babe in the NICU he had A LOT of tests done and on many it was noted that he had slow motility in his intestines. Basically means things go through very slowly. I'm guessing this is probably not a thing one outgrows, that some are just wired this way. My theory is perhaps this is part of the picture. Maybe not the whole picture, maybe a lot of little things colliding but it would make sense. If things move through slowly, you never really feel empty or hungry because in a sense, there's always food in there. For the first year of his life he and his brother were on a medication that supposedly helped increase the motility. We weaned them off eventually because we were concerned about all of the side effects and honestly we didn't really see a change so I don't think it truly helped anyway.

I'm sure we will be talking to GI at length but it may just be one of those things that we have to deal with and work around.

Christmas

2013-01-13T14:55:00.002-05:00

I apologize right off the bat. If you are not family or close personal friend (and even if you are), this is a massive photo dump. You may not want to sift through it all, or maybe you do, afterall the subjects are pretty darn cute. But you have been forewarned.

Words cannot express how grateful I felt this Christmas.

1.) The boys were sick just before and just after but not DURING this holiday season for the first year EVER. People that are close to us know that this was a huge deal for us.

I'm not talking sniffles when the boys get sick. I'm talking monitoring oxygen rates, using steroids, and nebulizers every three to four hours around the clock and even during the night to keep up their oxygen levels and help them breathe easier, etc.

It is getting better with each passing year as the boys get bigger and stronger but with their lung issues, any respiratory stuff still hits them really hard and its a constant worry whether they'll need a hospitalization when illness strikes.

they definitely have the doctor thing down.

I love watching them check each other's ears

or listen to the others lungs

and watch them nod their head

and say "uh huh, uh huh." LOL

Just the eve of Christmas Eve we took Alex in again to the doctors

and his oxygen was hovering around 92 even on steroids and nebs.

Usually 90 and below will send him to the hospital for oxygen and monitoring--

exactly what happened this time last year--

but gratefully we averted that and both boys

were feeling up to celebrating with all of our family and friends!!!!!!

It was exactly all I wanted for Christmas!!!

Nicholas is ALWAYS trying to hug on his brother.

He really is such

a sweet affectionate boy.

We'll often hear him say "I just trying to hug you Alex"

when Alex playfully pushes him away or tells him "No"

they end up wrestling

Nicholas will also be the first to say "I love you brother" at bedtime

or even spontaneously

during the day.

And although Alex may not be a hugger (except for his Momma)

there's no mistaking that Alex loves his brother too!

2.) This is the best age so far. Truly. The boys understand a little more about Christmas, and know enough to get excited about it all. They don't yet know that they can ask or or even try to demand for certain toys so its that blissful spot of just being happy for whatever comes. LOVE it!

3.) Getting lots of time to spend with our family and friends, sharing in the old and making of new traditions together. Lets face it, this is what its really all about.

We kicked off by celebrating Christmas Eve with my dad, sisters and brother and family.

Yikes, you will see I started off really strong with all the picture taking,

and it dwindled pretty quickly from here.

my beautiful nieces

My gorgeous sisters home from college

Our newest cousin

waiting patient as Grandpa passes out the presents....

Drawing/painting: another huge hit!!!

and ofcourse trucks, trucks trucks!!!

and another small brunch party at our house Christmas morning with Nana and Grandpa.

The boys are all about pretend and they especially

love playing with a doll house at school,

luckily Santa knew that and brought them one

to play with at home too :)

they play with it. every. single. day. so far.

realizing now that about this time,

I had already started getting lazy with the camera

and ~~there were a lot of shots that I missed~~

just sat back and enjoyed

instead of running to get the camera.

The choo choo train play tent, another huge hit!!

Then we headed over to "Mammie" and Grandpa R's for Christmas afternoon/evening

~~I realize now that I missed a lot of great photos here too.~~

I was able to sit back with a glass of wine

and "drink" it all in.

Here are some of the photos I did manage to capture:

Cousins :)

Nicholas starting to fade......

Like most families, It's a crazy time cramming it all in over just a couple of days.......

but its full of love and we just couldn't imagine it any other way.

The making of a Christmas card.....

2012-11-27T21:39:00.000-05:00

wow, can you believe mom is letting us play with ribbons

she must really want us to cooperate with this

photo shoot thing

If we don't both smile at the same time,

or heck even look at the camera together,

maybe she'll give us some other cool stuff to play with

hmmm, this is how the hat should be worn

ooohhhhhh see, the bells are coming out.....

and some ornaments....

Momma: note to self next year,

maybe pull out the really cool stuff and hang it

over the camera so they HAVE to look this way

only cute for a second, Alex is like

stop touching me, stop touching me,

you better stop touching me

Nicholas trying the

"aren't I so sweet" look.

and yes, momma made me wear this too big

sweater. she kept trying to yank it back in pictures

in hopes no one would notice.

and the boys were right, momma did

try getting out the annoying singing Christmas tree

just to get these smiles.

Totally worth it!!!

Wishing you and yours a wonderful holiday season

filled with your favorite people!

The scooter

2012-11-11T14:11:00.000-05:00

Life is good. There's really not a whole lot to update. A friend and I recently went out for drinks and we spent the better part of the evening talking about our sons' options for bowel programs, bladder issues, continence, surgical interventions, etc. We laughed for any one who might be eaves dropping around us while trying to eat but if any one was listening, I imagine they quickly found something else at their table to talk about.

We are in the beginning stages of figuring out some of the above things. The good news is that there are a lot of options. The bad news is that there are a lot of options. Some are trial and error, some take a lot of time each evening, and there are surgical options as well. I'm the type of person who over analyzes every decision, and then I'm still prone on second guessing it. I'm even worse about it when it involves my children. I've tried over the years but this is not something I can change about myself. Luckily I have an amazing support system and wealth of information and others experiences along the way.

The other stuff we are struggling about is regarding his leg and tightness he is having. Because Alex's legs are paralyzed, we need to do range of motion for him. It sounds fancy but really its just moving his legs and stretching them out so they don't stay in a "stuck" position. When your body doesn't move, it gets tighter, tendons get shorter and its a vicious cycle. We stretch him every diaper change with a lot of time spent in the morning and at night. He also "stands" in his stander every afternoon for weight bearing and also it helps to stretch out his hips and knees--the two areas he really experiences tightness.

He prefers to be in his wheels most of the time because lets face it, its fast. The stander even though it also has wheels is much bulkier, heavier and frankly just not as much fun. We have to have him a minimum of an hour a day but our goal is now closer to two hours. He's not a fan but we're making it work.

We saw his orthopedic doctor recently who is concerned about how much tightness he is having in his hip and leg. Its been particularly hard lately to stretch him out, as he seems to "boomerang" right back into the bent position. This is causing posture issues, especially in his wheel chair and could down the road also affect his scoliosis further. His doctor suggested if aggressive stretching and therapy don't improve things, we'd be looking at a surgery to help release the tendon but also because of the areas involved, would also have to cut into the bone. For any one who speaks "ortho", its his IT band and sartorius as well as hamstrings that are affected.

Well surgery on my child freaks me out. It doesn't matter that he's already had six of them. As any parent knows, that's just one thing that doesn't get easier with "practice." So we are getting him more therapy, learning new stretches and hoping we can avoid one, at least for now.

We recently purchased a scooter for Alex. Nothing fancy, just a plastic one with wheels. His therapist over the summer let us borrow one and Alex LOVED it. The idea was to get him out of the always "sitting" position. He's usually either always in his wheels or scooting on his bottom and that contributes to his tightness.

Well trying to reason with a three year old about why he should stretch out on his belly (or anything for that matter) is pretty unsuccessful. Our therapist at the time came up with this idea to entice him to stretch out. After the first time he tried it, no enticement needed after that. He BEGGED to "play" with it. Another plus was that it works his arms/shoulders and neck in that position.

Well this video was taken over the summer. It makes us laugh out loud and hope it does for you too. We bought him his own now and he races to use it every single morning. Its become a really fast way to get around the house. Although he goes so fast I'm considering placing speed bumps around, ha,ha.

Now the only other issue is do we get a second one? As you can imagine the scooter is not just popular with Alex, his brother loves it too....

I have another video to share of Nicholas singing his ABC's but I can't get it to load. Its audio really so not sure if I'm able to. If any one has any tips, let me know. Would love to share it.

Halloween

2012-11-11T08:43:00.000-05:00

Now which cutie is under that hat?

oh there he is

sorry these ones were taken by my phone

but still thought they were too cute not to share

Firetruck and all

Mommy was excited to find this cute little jacket

at our local goodwill for $2.99.

Do you remember these boots Aunt Rachel?

They are still a little too big to wear

but we worked it for this special occasion.

Here is Mr. Construction worker

The neighborhood we live in still has new construction going

and the boys are fascinated with all the diggers and equipment.

Even on the way to and from preschool

the boys point out all the big trucks and diggers they see along the way

and are disappointed when they can't find more.

While we did make this costume we totally stole the

whole idea from our friend Cassie who did this costume

a couple years ago.

After we saw Cassie's costume, we also found out my friend Jamie

also did something similar for her son last year and turned out

awesome so we were even more inspired to try it for Alex too.

Cassie's putting together a whole blog of wheel chair

costume ideas which are becoming incredibly popular!

She is unbelievably talented as are many of the other

mommas you will see!

(you can check out her blog here).

I am not a creative person naturally but I think it turned out

great and Alex loved it.

Here's hoping we didn't raise the bar too high

for future Halloweens though.

The digger made an awesome spot to

collect candy--which made little man

quite happy :)

Halloween Night:

Momma knows how to work the duct tape

(added it to plan black pants to match the jacket)

You wouldn't believe it but we didn't even plan the fire department theme

with our cutie friends. Their momma found a great deal on costumes too and went with it :)

We are a well protected neighborhood!!

Even our friend Abby got into the spirit!

Getting candy is serious business

hmmm.....

what to choose, what to choose...

Ended the night on a "sweet" note

and a surprise from their Grandma and Grandpa!!!

You can't tell it here but Nicholas was just as excited,

just starting to fade....

The interview

2012-10-09T01:02:00.000-04:00

Recently, our local Spina Bifida association asked our family if we'd be willing to do an interview with a news station and help spread awareness. We were honored ofcourse as this is a personal passion of ours and has been since we first heard the diagnosis over three years ago.

With many butterflies in our stomachs, we talked with the reporter for over an hour. We think the news station did a great job! I could nit pick and tell you of all the things that we spoke about that needed to edited out due to time constraints, like when we said please don't look at our child with pity in your eyes when you see him out using his wheels; he has taught us what is important in life and it simply has nothing to do with what your legs can or can't do.

I won't tell you how we spoke about the regret of not taking Alex in to see the doctor who gave us Alex's initial diagnosis during pregnancy and encouraged us to terminate several times over. In no uncertain terms, we were given such a bleak prognosis about his life. Not that this physician is bad, just that he was uneducated about the reality of living with Spina Bifida today. We wish we could have shared with him the reality of someone living with Spina Bifida now, not what he learned from an old outdated textbook. Its not that spina bifida doesn't have its challenges but that its certainly NOT worth throwing away a life for!

I won't tell you how I wished that Alex had warmed up a little sooner and really showed his stuff by zipping around in his wheels, or how I simply wish I wouldn't have been so nervous and would have known to look at the camera and not the reporter during the taping, ha,ha.

Mostly I wish we could have said more succinctly this is the beautiful child we were told to forsake. We had no idea what Spina Bifida was and we were devastated and scared and just held on tight to each other and our faith. I wish we could have had a crystal ball back then to see Alex now. We wasted so much stress, so much worry. He (and his brother) are everything we could have ever hoped for and more, but I won't bother with any of that (he,he) so here it is:

Click on this link for better quality
The interview

If the above doesn't work, here is a taped version.

Pre-School and medical updates

2012-10-08T15:20:00.002-04:00

This is a much easier post to write now that we are a full month in. I was soooo worried how the boys would adjust to pre-school. I know crazy right, I mean me, worry? But this was honestly the first time they'd truly be away from me. We would do story time at the libraries, playdates and we signed up for several sessions of pre school classes during the last year but that was all with their mommy still with them.

At three years old Alex would still get upset when I would leave the room in our own home so I just couldn't imagine dropping him off at school and LEAVING and having him be okay, with people he didn't know. I seriously thought he'd cry the whole time I was gone, at least in the beginning. I was only a little comforted by the fact that the boys would at least have each other. I know they are three years old, but they are little for three--really, developmentally and physically. Even more so I was REALLY hesitant about sending them to school EVERY day. Granted, its only for two and a half hours a day but going from nothing to five days seemed like a lot. Their therapists (and friends and family) assured me they would do great but ofcourse I worried.

But I'm here to say they both amaze me as always. I worry for naught, as always!

Maybe some day I'll learn to do less worrying but probably not. I seem to be a very slow learner :)

To help prepare them, I made sure to make a big (fun) deal out of what school would be like a good month before it even started. We brought home books from the library all about "first days of school" and we talked about the teachers in the books and used their own teachers names. We talked about all the crafts they would do, the new play ground, and all the toys. We scheduled not one but two different trips to their preschool room to play a week and two weeks before school actually started. I do think all of that helped some, (although maybe more for me).

There were tears that first day of drop off, yes but I'm also pretty sure they were mostly mine. Alex did cry as I expected but as I stood outside the door out of sight just to listen, he was comforted by his new teachers within just minutes, minutes, and he was quickly encouraged to play. I knew the teachers would be good, not strangers to new school angst (children or mothers) but I had no idea HOW good. They were patient and nurturing and have that really great talent of knowing exactly what to distract little nervous hearts with.

Oddly enough that first week or two, Alex would be the one to cry with every kiss good bye but Nicholas would hold it together until I would pick them up. It was the end of the day Nicholas' emotions would come out and alternate between "can't get enough of mommy" to full out "I'm so mad at you mommy" tantrums all the way home.

Hey, he looks familiar....

Only a month in and I can't believe how much their little minds are learning. They are coming home with an explosion of new words, that just trickle out throughout the rest of the day. I hear little hums and choruses of newly learned songs. MY guys, the ones who could only say "momma" at age 2. Its amazing how much they have changed in the last few months. Now with preschool added, they are soaking up soooo much more, forming new relationships completely separate from their momma, gaining confidence in themselves. Ofcourse when I ask them what they did for school that day, they simply say "played" because ofcourse to them that's what they do.

The school they go to is an integrated pre-school which means half the class is made up of children who have some sort of special need and the other half are considered "typical." The ratio is what really won me over. A maximum of 12 kids to one special education teacher and THREE classroom assistants PLUS the physical and occupational therapists that work with Alex and speech therapists who work with both boys. They also have a weekly pool session, music class, and gym class every week oh and an accessible playground. I really can't imagine anything better for both boys!

Other updates: The boys recently visited with their pulmonary doctor. We are preparing for the cold/flu season and upping the boys nebulizer treatments to twice a day. Their lungs have a lot of scarring due to the ventilators they needed as infants so common respiratory stuff hits them pretty hard. We are told that most children with this type of lung damage grow enough healthy lung tissue by the time they are five years old and should put them on equal grounds when dealing with respiratory illness. Here's to that!! In the mean time, we can at least enjoy some extra cuddle time brought to you by Pulmicort :)

Alex was also seen by his orthopedic doctor, he gets x-rayed every 4-6 months to monitor his scoliosis and just a general check in. We have been having concerns regarding a very tight leg that has been getting more difficult to unbend and stretch. We talked about this at length because its now affecting his posture in the wheel chair. That one leg wants to bend and rub against his wheel. Alex can't feel it but it was causing lacerations when he was wearing shorts in the summer. We have him in his stander about an hour or so a day as recommended but ultimately he spends the better part of his day in a seated position either in his wheels or sitting/scooting on the floor so those muscles and tendons are getting tighter and shorter. There's some other medical stuff I don't quite understand but ultimately there is a surgery that can and may need to be done but its more extensive than I initially thought and involves not just cutting the tendon but also into the bone. As much as Alex dislikes it, we are now trying to increase his stander time, as well as advocating to get more physical therapy and aggressive stretching to see if we can make some in roads with this. This little man has had six surgeries in his first two years of life and honestly that seems like plenty, we'd like to leave it at that!

Lastly on the medical front we are still dealing with diagnoses like "failure to thrive." We are pushers of high protein/fat soy shakes and even pop tarts and oreos in favor of GI tubes--something that has been discussed continually at check ups. We tried the good oils and lots of soy butters and protein any way we could possibly offer it but they just weren't gaining and in fact were losing weight. The high fat diet is finally putting weight on. Both boys are up almost five pounds each since the summer time which is GREAT, now its just waiting to see if growth in height will also come. At almost three and a half years old Alex is 25 pounds and just 30 inches tall, and Nicholas is 25 pounds and 33 inches. They are easily mistaken for children much younger and are overwhelmingly dwarfed by their class mates. Luckily they have a whole boat load of cuteness on their side (unbiased report ofcourse).

Because of their severe prematurity no one expects them to be giants (their parents certainly are not) but the doctors are concerned that they have strayed farther away from their own growth curves in the last year. Alex has gone through all the testing with endocrinology and nothing glaringly abnormal was found. They did recommend growth hormone treatments but due to his severe scoliosis it is not something that his orthopedic doctor or his parents are willing to risk pursuing at this time.

Regardless of that terrible sounding diagnosis, I say they are most certainly thriving in all the ways that matter!!!

Awareness

2012-10-08T15:18:00.000-04:00

Spina Bifida Awareness

Three and a half years ago I first heard the diagnosis. I was devastated and scared not having a clue what SB was or how it would impact our lives. If you've met Alex, ever seen his light up the room smile or watch him tear around in his wheels, you'll feel his impact in our lives.

Spina Bifida is not WHO he is, just something he happens to have. He is an amazing gift, just like his twin brother. We have met amazing people and had tremendous support from others these last three and a half years, blessings we wouldn't have known if it wasn't for SB. I am hoping to bring awareness so that maybe the next parent who hears those words might remember Alex or any of his amazing friends and be a little less scared!

Did you know that every year 1,500 babies will be born in the U.S. alone with Spina Bifida? Did you know that its the most COMMON permanently disabling birth defect? Did you know it literally means "split spine" and that it happens BEFORE the 28th day of pregnancy--before many women even know that they are pregnant? ***While there is no cure and there is still much to learn, taking a vitamin with folic acid is thought to decrease this birth defect up to 70%!! ***

Well before a very cute and feisty little boy came into my life three and a half years ago, I certainly didn't know any of these things. I had barely even HEARD of it and hearing the diagnosis I was terrified. I can't tell you how many times my husband and I had to hear the "option" of terminating our pregnancy because of the prediction of my son having a very poor quality of life.

By the way, have you seen my son?

Hardly what I would call having a poor quality of life-but I digress.

What is scarier is that many of the Perinatologists who will be reading a woman's ultrasound and giving that diagnosis often times have very outdated information about SB and give a very bleak prognosis. Expectant parents put their trust in those with an M.D. after their name, and they are quite frankly making life and death decisions with the information they are given.

While there is no cure for SB, the advances in medical treatment have come a tremendous way in recent years.The doctors who are diagnosing spina bifida ARE NOT the doctors who are involved with, care for and see first hand all those who are living with SB are accomplishing. Please note: I am not trying to bury my head in the sand or diminish that people living with SB don't have extra medical concerns or challenges to overcome. I just want awareness and education to catch up with the reality. Spina Bifida today with early medical intervention and preventative care is VASTLY different than Spina Bifida of even a decade ago.

Women: PLEASE print this out and bring to your next yearly appointment. If every one of us could do this, just think how many people we could help. PLEASE pass this on to the doctors in your lives so that hopefully the next woman who hears this diagnosis will have the information and support she needs. Together we can move mountains!!!
THANK YOU!!!!!!!!!

The medical professional's guide to spina bifida

An expectant parents guide to Spina Bifida

Covert operation

2012-10-06T14:34:00.000-04:00

pssst......

over here.

can you see me?

this is kind of a covert operation.

obviously my mommy doesn't want you to know

how fast we are growing up,

she hasn't posted in a REALLY long time.

so shhh....don't tell her we're here.

but we knew you'd want to see for yourselves

whats new.

ohhh,

there you are!

We've had a FANTASTIC summer!

Here we are hijacking a beach vacation

with our "mammie" and "papa"!

My most favorite parts were:

spending time with my Mammie.

and playing in the pool!

Did I mention I love my Mammie?

oh you want to know about my brother too?

okay.....I guess.

He really liked the sand.

He had every one help bury him

over. and over. and over.

every once in awhile he'd dust off,

wade in the water

but he only really wanted to go back

for more sand.

He convinced me to give it a try too.

oh yeah,
mommy was there too.

She had to wrestle me out of Mammie's arms
to get this picture. ha,ha

Summer time means.....

more camping trips!!

hikes....

More pool time!

Bubbles!

parties and picnics

even with magic shows!

Summer time is finding lots of neat slides

Nicholas got a toddler bed

reading, reading, reading.

and building forts on rainy days

visiting the animals.

summertime means lots of lunches at the park

making pretty messes

Making yummy messes

and always on the move!!!!

pretending we are a choo choo train....

There's lots more to catch up on

We'll make sure to get Mommy moving

on more of these updates!!!

Camping

2012-06-25T15:56:00.002-04:00

Alex narrating:

Our ~~first~~ camping trip

Well mommy says its more like our third

but I don't remember the other ones

so they don't count.

We don't even LOOK the same

Here's our little hotel on wheels as

my mommy calls it

and this is our view.

Right on Cross Lake

not bad, eh?

no, the boat isn't ours,

just part of the amazing picture.

Here we are hanging with our buddies.

They have a camper here year round

or their grandparents do

so they were having fun showing us the ropes

Here we are at the really fun playground

Here's my brother trying to figure out this thing

I"m thinking it doesn't look stable

I'll stay back here and keep a look out

but our friend Matty says its no problem

so Nicholas persists

Matty cheers him on.

Here's our "big brother" Chris on the swings.

He looks out for us just like his own little brothers.

I'm more of a slide guy myself

I like speed!

Here we are back at camp

How do you like my hiding spot?

I'm kind of re-thinking it now.

Benny found me.

He cracks me up!!!

Hey. Where's MY smore?

just kidding,

they're not really my thing

oh and there's also this little beach here too

right across from where we stayed.

I know, can this place GET any better?

Mommy remembered our sand toys.

I know how much my Daddy loves sand (ha,ha)

so here I am sharing some.

My brother and my Daddy.

yep. two of a kind.

Nicholas wasn't a huge fan of the sand.

kept trying to brush it off.

so we went for a swim.

Nicholas wasn't a fan of the grassy stuff in the water either.

Whats with this kid?

I had a GREAT time.

I went all the out to my neck in the water.

Okay so maybe that's not too hard but still....

My mommy was worried how we would

nap/sleep away from home,

away from our own beds.

We brought all the comforts from home

and as you can see,

not an issue!

So now we're planning our next adventure.......

More than Double Blessings

2012-06-02T15:47:00.000-04:00

A HUGE thank you to our friends and family for such a successful

fundraiser for our local Children's Hospital.

The link below is missing several of my team members

donations since it wasn't put in on line

but together we raised $1,500!!!!

http://www.helpmakemiracles.org/index.cfm?fuseaction=donorDrive.team&eventID=1080&teamID=12881

If any one had wanted to give but didn't, its not too late,

donations are still being submitted, just follow the link or let me know

and I'll send you the address to mail check directly.

It was a happy morning to celebrate how much our Children's Hospital

impacts the lives of so many.

Every life born is a miracle, truly.

Our miracles (and so many others) were just needing some very special people

to get through some tough early days

and we are so thankful for each and every person

who cared for our boys, loved our boys, and prayed for them.

They are still tiny but they've sure come a LONG way

since their One pound, 10 ounces

and One pound 12 ounce days!!!!!

Remember them then?

Alex showed his feisty side today.

He alternated between wanting to go fast

dragging one of us with him

to not wanting to wheel at all

but also not wanting us to help him.

sound like a typical three year old? yep!

Sorry to anyone who was walking behind us

when Alex decides to abruptly stop,

multiple times,

just because he can.

It was cute

at first.

We had a little rain,

a few tears

but as always

we get by with a little help

from our friends!!!!

Nicholas holding his "best buddy Chris's hand

Chris had to do a little convincing but

Nicholas did the slide.

Victory.

Alex did the slide with his Momma and loved it.

Immediately said "more, more".

Wish we had gotten more pictures but we had a great morning.

Thinking back on this mornings walk and the last three years,

I'm not sure our team name "Double Blessings is exactly true.

I think we have so much more than just double blessings!!!!

Animal Adventures

2012-05-27T08:13:00.001-04:00

We spent a beautiful day with friends at this incredible place called Hidden Valley Animal Adventures in Varysburg NY. It was an easy hour and a half drive for us each way.

We loaded up the boys and some special treats for the ride.

Their loveys got to come along and they were so excited about this.

Nicholas wanted to make sure bear had a prime spot looking out the window.

Alex was in a silly mood and pretended his was a hat.

http://www.hiddenvalleyadventure.com/when-here/things-to-do.html

We were invited here for our sweet friend's Sawyer's

birthday party.

We took the one hour trolley tour of the grounds .

I"m not even sure how many acres there are here

but its massive and just as beautiful

Alex wasn't sure what to expect at first

but warmed up to the idea fast!

The animals came RIGHT up to the trolley.

Which Alex wasn't sure was a good idea

at first....

Afterall, these are NOT little animals!

Nicholas had this look on his face A LOT.

He was in awe!!!

I wish I had gotten more pics of him on the trolley

but I was busy chasing after him.

As soon as the trolley stopped he was off looking

out the sides of the nearest window spot,

he was anxious to see and feed them,

and absolutely LOVED this place.

We were each given food in cups for them.

I think they've seen this routine before.

not shy at all.

We would stop every so often to get a closer look

at some of the animals, feed them and then

go riding again.

Alex even though timid at first kept saying

"more animals", "come", and "tis"--his

way of saying "sit".

After the trolley ride we were able to go into

a smaller petting area

The animals were just walking around,

most very friendly and would walk right up to you.

Heaven for this boy

Alex kept saying "more more" animals

but he wasn't in a hurry to touch or pet them,

Nicholas however had no reluctance.

They both loved trying to feed the animals

Here is Nicholas trying to tuck in some hay in the fence.

Seriously can't say enough about this place,

we will definitely be going back!!!!

Afterwards we had lunch at their lodge

Alex showed off in his wheels.

don't let these pictures fool you,

he was ALL smiles......

until he saw his momma behind the camera.

happy exhausted boys

Sweet end to the day

Nicholas reading to his bear!!!

3 years ago.....

2012-05-01T22:46:00.000-04:00

Three years ago: One pound 10 and one pound 12 ounces: the littlest packages that arrived way earlier then expected and forever changed our world. It would be impossible to put into words how much love this momma has for her boys (any parent ofcourse). This woman was mushy to begin with and then give her two living breathing odds-defying miracle surpassing babies, well what's mushier than mush? Who knows but thats what I am.

Nicholas and Alexander: You came into this world too soon and already having to fight. You've been through more battles than any one more than 10 times your age should have had to have. I desperately wish I could have changed that course for you, made your beginning easier somehow. But I couldn't. What I can do is tell you how proud I am of you both. You have come sooooo far in these three short years. From the very beginning you have defied the odds, changed even the "experts" expectations, and brought so much love and life to many more hearts than just mine.

I Love You!!!!

A little stroll down memory lane, some of my favorites so far:

Our miracles

born at just 28 weeks

1st "real" baths

Finally home after 102

and 107 days in the NICU

Here is Alex's external shunt until he was big enough

to have the internal VP shunt inserted.

We affectionately called it his "bubble"

Alex's helmet. He had to wear 23 hours a day for almost a year
(Momma worked hard to get pictures of him during that hour without it )
Nicholas not sure what to make of Alex's

"under construction" helmet.

later though he most definitely wanted one of his own

Nicholas always wanted to play with Alex's cords

This was not set up

They used to sleep and cuddle together like this A LOT

Love.....

those cheeks......

Happy Birthday my boys
We are sooo proud of you and how far you've come.
We love you sooooo much!!!!!!!