Tuesday, May 31, 2011

No More Shift Changes

To cut to the chase, Samuel has now lived at home longer than at the hospital!  Excuse me, I need to get a tissue...

Woo Hoo!  I didn't actually count days (I know, I'm a little shocked too), but Samuel's final come-home-date was March 28th, when he was 14-months old.  This past Saturday the babies turned 28-months old!  It sounds weird to say their age in months, but when you're talking about this kind of accomplishment, details like that are necessary!

Hard to believe we weren't sure if he would even be home a day, or a week, or a month... then you realize it's been 6-months, then a year, and your heart soars!  It also reminds me of just how special our hospital friends are, how loving they were towards my baby for all those months, how they cared for him and smiled at him every day for all. those. months.  How they put up with ME for all those months :)  Ha ha!  Huge kudos!!!

I feel like this also makes it even more official that he really is ours :)  I know that sounds crazy, luckily I'm okay with that.  For so long we were unable to care for our child.  While we love our hospital family, we desperately wanted to bring him home... to be the first face he saw in the morning and the last face he saw at night.  Believe it or not, we even wanted to be the ones changing his trache ties and responding to all the ventilator beeps in the middle of the night.  We finally got our wish!

Sweet boy!

Just another great day at the Byrne House!

Getting out an all-time favorite, the side walk chalk!  (Thank you Celia!)

Another favorite, playing with the dogs!  This time Samuel's nurse is teaching him to throw the ball for Scout... both Scout and Samuel love it :)

George and Olivia head straight for the water table, chatting away like the best of friends.  You will note they are dry... this was taken in the first minute of being outside :)  Eventually the shoes and socks have to come off because they're squishing and the wet clothes weigh about 30 lbs.  Love it!

Off to water plants!

George, are you excited that Olivia just walked away to water plants and left you the entire water table to yourself?!  You be the judge :)

Monday, May 30, 2011

Happy Heart News

(Post from June 25th... but today was good also, I can now post photos again!  Yea)

Today was a good day!  A busy day too, it went by much too quickly for my liking, but I'll take it because it was GOOD :)

First news, Samuel had a cardiology appointment - his first one since January, which is news in itself.  Not seeing the cardiologist for nearly five months was unheard of six months ago!  Also news is that Samuel's heart still looks GREAT!  He still has one hole (the ASD), but the pulmonary hypertension is still mild to absent.  The post from his last appointment talks about this in a little more detail.  We are still ecstatic!  A kid who needed nitric oxide normally would not be experiencing this kind of wonderful news less than two years later.  YEA SAMUEL!

Also wonderful was that he has been on a trial run of no heart meds since Sunday, and so far, so good.  Our med list is rapidly decreasing, and it feels so good to know that Samuel's body is starting to function more and more normally on it's own.  It also feels great not to be putting so much stuff into our boy :)

Second news, Samuel has officially shown an interest in philanthropy!  Our home medical supplies friend came today, and we cleared out everything in his room except oxygen, apnea monitor, pulse ox, feeding pump, and necessary accessories for those items.  Some of it Wendi could take back to the home medical company, for example the trache collar machine, but most of it was ours to keep.  Realizing he has no need for these things, Samuel will be donating his things to a medical missions team.  Feels good to be giving out medical supplies instead of needing them!

Samuel and most of the gear we were able to get rid of/donate this past week.  YEA!!!  And yes, I did say "most" of it, there was more in the garage.  Crazy!  Samuel wasn't too interested in posing... can't blame him, I did surprise him mid-lunch to take a photo :) 

Third news, all five of us have happy hearts after celebrating Madison's birthday this past weekend!  Birthday preparations and new sunglasses also made us happy... but the best part was singing Happy Birthday :)

Getting ready for the party - balloons in the pool are fun for everyone!

I think Samuel loves his daddy... and daddy loves his Samuel :)

Woo Hoo!  Bring on the birthday cake!
George and Olivia still don't quite understand... they've been asking for birthday cake since then and my explanation of "but it's not anyones birthday" doesn't seem to cut it :)

A little help from daddy...

Giving it my best shot...

Sitting back and soaking it all in :)

Chillin' with cousin Madison after a great day :)

The day after the birthday, it was off to the beach!  This is definitely our newest favorite place.  We've been trying to get there once per weekend, and so far we've had good luck, so everyone knows exactly what it means when we say "let's go to the beach!"  All three kiddos love it!

Samuel could play with the reeds all day!

Cousin Madison gives an excellent tutorial on building sand castles!

George loves digging and building!

George is also beginning to appreciate the surf board.  I don't have photos, but Uncle Jay and BB took George on a handful of short (shallow) rides and he loved it!

Off on another adventure :)  Samuel sees something he's interested in, and off he goes!  Whether that's the waves, a bird, a dog, or even painted toe nails.  Samuel makes friends everywhere he goes :)

Daddy and Olivia enjoying the water.

Olivia takes off to find dry land :)  She hasn't quite made up her mind, sometimes the waves are great, but not all the time!

Friday, May 27, 2011

Help from other bloggers!

Not sure what to do, but would love any advice from other bloggers!  I can't upload photos - I get some strange server error message. 

This really stinks... lots of good news to share, but was hoping to have photos too.  Will keep trying, if no luck soon, then will post without.  Ugh.

Help, please!

Thursday, May 19, 2011

Swing Set!

You may remember the picture below... there were a few photos from this day posted here.  Now scroll down and check out our upgrade!!!

Lots of fun, but maybe a little bit of a tight squeeze :)  I'm pretty sure George is looking through the window because he can't open the door with both Samuel and Olivia inside the house too.  ha ha!

Woo Hoo!  We LOVE our swing set!!!

We have been wanting a swing set since we moved into this house!  Especially since last spring when the weather was gorgeous and we were playing outside all the time.  But let's be honest, they don't come terribly cheap.  Here's where the unbelievable part of the story starts... our friends (and now neighbors) gave us their swing set!  I got teary, DB almost fell over, and Omi was all choked up.  What an incredible gift!  The Blake's have two teenage daughters, and when they heard we were saving up for a swing set (and may have briefly considered "borrowing" one from an empty house in the neighborhood - joking!) they had a family meeting and decided to give us this fabulous swing set. 

For those of you in as much disbelief as I still am every time I look in my backyard... yes, things like this actually still happen in neighborhoods and communities :) 

I got zero photos of them moving it in and setting it up - I think I was still in shock it was happening.  Blake's, you are amazing!  Not only are the swings a beloved item by my children, it also allows daily vestibular therapy, mostly needed by Samuel and George.  YEA!  Also, Olivia and George have perfected the slide all by themselves :)  Best gift, ever!  (If anyone has ANY idea how to say thank you for something like this, I'm all ears!)

Monday, May 16, 2011

Stoma Free!

Without getting into all the reasons I haven't written in a while... we've been busy!  We have so much to catch up on!  But I have to start with last week... news about April and May will have to wait...

Samuel is stoma free!!!  He officially has no hole in his neck :)  Nearly two years ago Samuel got his trache, and since then we have tried to get healthy enough not to need it.  Now, not only do we not need it, we were actually able to do a stoma revision on May 9th and officially seal his airway back up.  The only sign of a trache is a horizontal scar at the bottom of his neck... you would never even know he had it.  Sigh...

I'm so happy that I often get teary just looking at him :)  It's also hard to imagine that chapter of our life is behind us... that makes me teary too because it reminds me of all that Samuel has been through.  Even now, after nearly two years of parenting my trache-baby, the words "my baby has a trache" sound crazy and foreign.  I had never met a baby with a trache!  In fact, I'm not sure I even knew that was possible!  Well, at least it's not something I had ever considered.  I never considered a lot of things... like so many tubes and needles and tests, like months and months in the hospital, like carting around ventilators and suction and oxygen everywhere you go, like worrying that my child might get some thick mucus and require immediate CPR, like lots of thing...  Seriously?  These things can happen?

What also happens is healing... and our Samuel is doing just that!  Once again, he is overcoming health issues and hitting milestones.  What, you mean getting your trache out and your airway sealed back up isn't listed in the official milestone book?!  Well, it should be!

Some details from the hospital stay... in addition to the stoma revision, we also got another bronch (look at this airway), and put tubes in his ears.  Samuel's airway looked AMAZING!  No granulation tissue at all!  It was beautiful!  I might actually frame the pictures and hang them on the wall.  We are hoping the ear tubes will improve Samuel's hearing.  Twelve weeks ago his hearing test showed some slight hearing loss, but also revealed some fluid.  This time, there was still fluid, so the tubes were placed.  I'm already convinced they work - he has been a talking machine!  Not really words yet, but lots of sounds and noises, and new sounds and noises.  Yea!

So, the hospital stay itself wasn't a fun one.  Generally (this is our 3rd airway surgery in the last 12 weeks), Samuel requires extra oxygen for the first 24 hours after surgery, and by the next morning everyone we see wonders why this happy kiddo is in the hospital.  This time, not so much. 

Each of these three procedures has required a 3-day hospital stay, so you would think we were pro's by now.  Samuel had a terrible time.  Our pulmonologist has always warned me that being under general anesthesia can compromise pulmonary status.  Until this, I never really knew what that meant.  Samuel was on extra oxygen for five days!  Ugh.  For some reason, this time was not like the others, and his breathing definitely took a temporary hit.  He also spiked a fever on day 2, and was completely cranky for most of the three days.  On the bright side, maybe he's just finally realizing he wants to be at home :)

During our stay we again got to see lots of friends!  I didn't have any tears during this stay until I saw some of our NICU friends... it was overwhelming to be holding my NICU grad and showing off all of his progress to a group of people that saw Samuel hit rock bottom.  They were there for the worst, they knew the terrible odds, they hugged us and hoped and prayed for the best, and their work paid off.  I have a Samuel to prove it!

We also saw Ophthalmology, Pulmonology, Nutrition, and Urology while we were there... in addition to getting a new g-tube and multiple labs due to bad bloodwork (bad numbers came back that we're doing lots of follow up on).  I love our hospital!!!   Lots of updates, but for another time.  Bottom line is things are headed in the right direction.  There will be more surgeries, but if possible we will wait until September... the five days on oxygen wasn't good, so we'll wait to get bigger and stronger before going under again.

Our baby boy is stoma free!

Pre-op... getting ready for the surgery, but not terribly worried because Goodnight Gorilla is hysterical and keeping our attention :)

All gowned up and ready to go... but again, not worried because Jesus Loves Me (how ironic is that!) is keeping our attention now :)

Cutest Boy!

Before the surgery... it kinda looks like a belly button on Samuel's neck!
I literally snapped this picture as they were taking him into surgery... it's a bit red because we had literally just taken off the band aid.  I SO meant to get a really good one during the six weeks at home, but I hope this gives at least some idea of what it looked like before the revision.  The gross part is that even though the stoma did close down a lot (above is much smaller than it used to be!), Samuel's stoma didn't close down as much as most do, so he was still able to make zerbert noises through the hole.  Ew.  But kinda cool party trick :)

After the surgery!  I know, amazing!!!
Go ahead, scroll up and down now to compare... incredible!

We didn't take any other hospital stay photos because as I said above, Samuel was miserable most of the time.  We still managed to enjoy some one-on-one bonding time and a nice walk outside :)

Below is a sequence from our ride home... I love this kid.  He took off all of his band aids on the ride home, and decided to hold on to this one for at least 45 minutes - no clue why!
Holding his band aid perfectly still... it did not move from this position for quite some time!

Can I help you, mommy?  Why are you taking pictures of me?

The band aid only dropped when he started to fall asleep :)

Comfy :)

Back on the home front, Olivia and George are still happy as pie!

Texting and driving already?!

Hi mommy!  Whatcha doin?  Want to take my picture?

Cheese!  Most handsome pirate I've ever seen!

Sunday, May 1, 2011

Marching Machines!

The March of Dimes walk was SO great!  Thank you to everyone who supported this event by walking or donating!  Prayer and warm wishes were also very much appreciated :)

  • We were surrounded by many friends and family for the walk!  Local friends and friends from Atlanta and Ohio, family, therapists, nurses, other parents of preemies, and parents of full-term babies... you name it, they were represented... and that was just our Team!
  • It was incredible to see so many people out supporting March of Dimes - our town had a great showing!  As of walk day, the total raised was more than $82,000, and additional donations have come in since then!
  • The students from our school had their own team and both raised money (more than $500!) and came out to walk.  What a great family we have in our school!
  • Our fundraising was a huge success!  We set our personal goal at $3,000... and blew that out of the water by raising more than $4,200.   We were even recognized as the top individual fundraiser :)
  • Our TEAM fundraising was also incredible!  I was a bit worried after my ambitious goal setting of $7,000 for The Early Birds, but everyone proved my worries a bit silly by raising more than $8,200.  Wow.  Our team also was recognized for top team fundraiser!
  • Our tshirts rocked - thank you Jessica and Emma for the great brainstorming!
  • It didn't rain!  This was a huge concern all week, with heavy rain and thunderstorms looming... but it was clear skies all day.
The proof is in the pictures :)

The Family :)

 The Friends :) 
Not all, but many of our Team Early Birds walkers and students. 

 The Wonder Women :)
Nothing like girlfriends!

 Pre-march fun for daddy and George... balancing on one hand!

 Samuel and Julie all smiles :)  Fast friends! 

 Olivia taking a break from the busy morning and all the new people :)
She did amazing!  Olivia can get overwhelmed around new people fairly quickly, and this girl was a trooper with everything.

 Let the March for Babies begin!

 Quick photo op with more of the Team and some of our younger walkers :)

 Pit stop! 
All three did great during the 3-miles and sat back and relaxed for the most part... until the end, when they started to get ants in their pants :)

 No story here, just DB and Josh enjoying the view from one of the bluffs...
which everyone is invited to view next year when we walk again!  Hint hint!
 George enjoying some post-march been-in-the-stroller-forever running!

 Olivia: "Me Too!"

 Samuel: "Me Three!"
Well, not running yet, and not standing independently, but standing none the less :)

 We also met HG for the first time :)  My kiddos were fascinated by her!
Love those cheeks and that flower!

 We also saw a friend we haven't seen since the NICU! 
I follow her blog, but haven't actually seen this precious Olivia since she left the hospital.  Isn't she amazing!  Plus, pretty cool for Samuel to meet one of his old buddies :)

It was an eye-opening day too... not only did we see Olivia (above), but we also saw our former NICU buddy Conner.  It is truly incredible how far these kiddos, mine included, have come.  If you ever feel the need to actually see a miracle in progress, check out the difference a year or two makes in the life of a preemie.  I can only imagine what they will be like in 10-15 years!  Really hits home that the March of Dimes is important... that every baby deserves a chance to be born healthy.

After the walk we stuck around and visited the opening of the PR Farmers Market!  The kids loved it!  Not only puppies (above), but goats, great danes, boiled peanuts, a home-made grits machine ("big truck" to George), and lots of exhibits to check out.  Great end to a great day!