One Year!

It has officially been one year...

... not since they were born, that's been 26 months...

... not since George and Olivia came home, that's been nearly 24 months...

... not since Samuel crashed, that's been 20 months...

... not even since the first time Samuel came home, that's been 13 months.

It has been one year since Samuel came, and stayed, home :)

Yes, we have had doctors appointments and planned overnight stays, but March 29th, 2010, was when Samuel really did come home to stay! My heart is more full than it's ever been. I prayed for Samuel to come home for the longest time, and when it happened I gave thanks and praise... and then asked, what next?! I'm convinced that one of the reasons we aren't privy to "the plan" is not only would we not believe it, we would probably try to mess with it :) The last year has been incredible in so many ways. In fact, I'm trying to stop asking so much about what the future holds and more for opening our eyes and preparing DB and I for whatever comes our way. The plan is good, help us to take full advantage of it - for us but even more for our babies!

To celebrate this year anniversary, Samuel and I went to a doctors appointment back at MUSC :) Ha ha! Yes, really! Here's the kicker, JUST Samuel and I went... by ourselves! This is the first time EVER that I have driven Samuel more than a few miles by myself, without a nurse, DB, Omi, or someone else to drive so I could sit in the back. Just me driving and Samuel riding. YEA! Plus, the doctors appointment was great! Very appropriate actually, it was our pulmonary doctor, Dr. B. He rocks! Plus, we have been through a lot together... he was the one who had to show us the horrible photos of Samuel's lungs back in July '09, and explain to us what they meant. But, like the other incredible people at MUSC, he never gave up hope that Samuel would one day come home. It would have been easy to give up hope.

Today is another reason that every baby deserves a chance. Samuel came home, he gets stronger every day, he is breathing completely on his own, and he has been home with his family for an entire year. He is a brother, a son, a grandchild, a nephew, a cousin, and a fighter with a team that fights with him :) Thank God for every person who never gave up hope!

March, 2010

Fully vent-dependant and non-mobile

March 29, 2011

1 Year!

Trache-less and crawling all over the house!

(Phone photos so a little blurry...)

Early morning smiles :)

Love the doctors office!

I meant to put him in his hat all day, but left it in the car, boo.

Ready for bed, in pj's, and still smiling!

Things To Remember

Just a few notes I want to be sure to jot down... come to think of it, I feel like I should do this more often. The "babies" are growing so quickly and their daily quirky things that make us laugh and smile and stare in awe are changing faster than we can get them on video. It's just too much! So, lately...

• George loves pretending that someone is hiding in his toy pickup truck - usually Rachel or Omi.


• The new joke is that the type of dinosaur that lives in your diaper is a Poopysauras. (Gee, thanks Dad.)


• Olivia did 1,000 laps around the house with her new baby stroller, and only stopped because the buzzer rang which meant it was George's turn.


• Samuel kissed DB and I for the first time :) He always kisses his stuffed animals, but kissing a person - on purpose - was a first! He also kissed Olivia last night :)


• Olivia and George are speaking in real sentences... we're talking 6-10 words in a row! Plus, they are masters of the prepositions.


• Samuel is officially cruising on the couch! He can't pull up to standing yet, but once assisted to stand, he can move from one end of the couch to the other.


• Olivia picked out a skirt and shoes today - and refused to be talked out of them :)


• George had a meltdown when DB showed him a monster truck video of Grave Digger... he loved it, until it crashed. He had serious concern! DB rewound it and talked about how it got fixed - all better.


• Olivia told DB "daddy's shirt so cute!" Daddy doesn't wear that shirt anymore. Ha ha!


• Olivia and George have both taken turns on the big swings and can go down the big slide by themselves.


• Samuel can push his bus with both hands while kneeling and crawling behind it.

A few catch-up pictures from an early-March-day-at-the-park with Stefanie and Lucas before they moved. Don't worry, Samuel doesn't have a trache again :) These were taken PRE-decannulation!

Big kid swings for Olivia and George!

Samuel loves the park, and can pretty clearly say "outside" :)

Samuel and his best bud, Lucas :)

Lucas does walk - actually, run - but he really loves to play with Samuel. When he noticed Samuel crawling, he didn't hesitate to join right in :) Makes my heart smile!

DB loves the park almost as much as Samuel!

Georgie, where are you?!

Olivia, where are you?!

George and Lucas discussing life, before taking off to RUN!

WOO HOO!

Supposed to be a cute photo of snack time...

apparently I am not that interesting.

High five Samuel, see you later...

High Five!

Mama, I think Stefanie is about to do something crazy... like move away! Boo.

EKG's for everyone!

So, my sense of humor may be a little warped by this point,

but this is kinda funny :)

Like father, like sons!

(What's up with the boys in this house?!)

George, December 2009

Samuel, May 2010

DB, March 2011

Trache-less!

Man, does my boy have a beautiful neck :) It's hard to believe it's been an entire week since Samuel's trache came out. He has been a rock star! I'm convinced he is happier without it. At the very least, he is happy... and DB and I are definitely happier without it!

A few photos from the big day below... I did get the actual trache removal on video, but A - not sure how to get it from camera to blog, and B - not sure anyone really wants to see it. Ha ha!

Also, a few more details... besides taking the trache out Samuel did have a surgery to remove a bit more granulation tissue (scar tissue) inside his airway. Luckily it was no big deal - many kids have a lot of granulation tissue which can postpone the removal of the trache.

We also re-tested Samuel's vocal chords, and unfortunately the results showed that the left one is definitely immobile. That was the result a month ago, and again during this surgery... but since sedation can cause faulty results, this time they also stuck a flexible scope down Samuel's nose while he was awake so they could watch the chord when he actually talked/cried. Very sad. But, at least we now know what we're dealing with... the chord was most likely damaged during his heart surgery (PDA ligation) when he was a wee 2lbs. Apparently the nerve comes down and wraps around the aorta, which is only millimeters from where Samuel's surgery was done. What we don't know is whether it is permanently immobile/paralyzed, or whether it is healing. They heal very slowly, but we should know in the next year or so.

The docs were very impressed with Samuel's voice :) They think his body is compensating... our bodies are so incredible. Downsides to an immobile vocal chord can be trouble swallowing or differences in quality of voice, for example very hoarse or very breathy. But, this immobile chord should not slow his ability to speak and pronunciate - yea! Onward! Plus, if either of the above are really bad, which no one is anticipating, then there are treatments and procedures that can help. But again, the docs are very happy with everything Samuel is doing :)

Decannulation Day...

Hangin' with DB prior to surgery - Samuel was all about daddy that morning!

Close up of his trache ties...

Samuel has had these tied around his neck for nearly 2 years. Yes, they get changed daily, but they are only off his neck for mere minutes at a time, then they are back in place.

Another close up, this time of the front with his cap in place.

I know, I know, another close up...
but it's just crazy to me that THIS has been his airway since June '09!
The things we take for granted - sheesh.

AGH! The trache is OUT!

Happy as pie :) I'm not sure Samuel understands what all the fuss is about :)
No trache, but bandages covering the stoma (hole in his neck).

All of a sudden I'm realizing I don't have a photo of Samuel's neck with no trache ties... seriously! I've been staring at it for a week now! Soon.

The day after decannulation we got to go outside for a bit...

I'm pretty sure Samuel thought that getting decannulated meant he would get a few days off from the eye patch. Ha! Not so much :)

Best way to get a little man to use an inside voice?

Goggles, of course!

My friend, Sarah, and I were having lunch but Samuel had already eaten and was a bit antsy. She reached for a toy (she had two kiddos with her, too) and pulled out these goggles. Samuel loved them! I think he was amazed that when he looked through them... everything was blue! Love it!

Good News All Around

Both my boys are doing well! DB and Samuel are happy and mending... which means I am happy!

George and Olivia are doing great too, but they didn't have any medical stuff this week :)

DB is recovering nicely from his heart catheter procedure on Tuesday, sore and tired but overall okay. We received good news from the procedure! His "numbers" are still bad, which we knew, and which was a final confirmation of surgery this summer. But, the other things they were measuring and looking for were all good. The pressures in his heart look okay, there does not appear to be any damage to his heart or its surroundings, and there also does not appear to be any blockages. These three things were excellent pieces of news!

The other neat thing is that they were able to get to DB's heart through two points, one up through his wrist and one down through his neck. This means they didn't have to go through his leg! Recovery time was shorter and the risks were less - yea! He is pretty sore, but we are very happy with the news.

Thank you so much for your prayers and words of encouragement!

Decannulation Complete!

Overjoyed is an understatement :) YEA!!!!!!

I could write the excited "YEA!" after every single sentence in this post, but I will save you the ridiculousness of reading all of them and just tell you now :)

Samuel looks absolutely amazing! After recovering from a short surgery on Friday, the trache came out... and has stayed out. We no longer have a trache-baby! It was crazy, I (yes me, DB let me have the honors) just took it out and the docs bandaged it up. Wow.

Samuel and I stayed Friday - Sunday and he did wonderfully, even at night. This is the first time in his life he has breathed on his own at night. EVER. I can see the back of Samuel's neck for the first time since June, '09, and I absolutely love it.

Part 2 of this post has to come tomorrow... hospital stays are exhausting and we've got a big week ahead. But tomorrow, more details and photos :) Photos of my NO TRACHE baby!

Thank you so much for your thoughts and prayers! They are so incredibly helpful!

Another prayer request, the busy week I mentioned above has to do with DB's heart. On Tuesday DB and I will spend the day back up at MUSC because he will getting a heart catheterization procedure. Compared to what we have coming this summer (aoritc valve replacement), it's not so bad... but then again, it's his heart, so I kind of think that makes it a big deal no matter what :)

This has been in the works for a long time... DB was born with a bad aorta, but as of last fall it's now at a point that this replacement needs to be done. In preparation for the surgery they do this heart cath to take a closer look, do some mapping, and look at pressures. Ugh.


Prayers for health and sanity would be excellent!

Soon To Be De-trachetized... And Everyday Fun!

Apparently the word "decannulation" isn't a common every day word... and neither is the process of how the trache comes out. So, here goes :)

As one of my best girlfriend's put it when I told her about Samuel's upcoming attempt at decannulation, "you mean he's being de-trachetized?!" (Julie, I love that!) And to answer the question, yes! And, I think that word is actually a much better one than decannulated :)

At 7am on Friday morning Samuel will undergo one more surgery to remove granulation tissue (scar tissue) from his airway, one more look at his vocal chords, and another shot at a hearing screening, but as long as everything looks good then the trache will literally just be taken out. Crazy.

From what I understand, they will simply take the trache out and place some type of bandage over the hole in his neck and we will be good to go. Absolutely crazy.

It's kind of like an earring hole and should close on it's own. Seriously crazy.

That said, after about 6 weeks we will go back to have the stoma (hole in his neck) checked out. Most likely Samuel will undergo a stoma revision surgery, during which they completely close the hole and make the scar a little smaller, kind of like plastic surgery I think.

Lately I've become a little panicked about taking care of the stoma once the trache it out. It may sound a little nuts, but I'm completely comfortable caring for it with the trache it - and yes, you can see inside the hole even when the trache is in - but once it's out, I'm definitely back a few steps on the comfort level. Good thing I've seen first-hand how something like this becomes part of your everyday routine and you forget why you were ever nervous :)

The open hole does mean I'll have to wait a little while before dumping water on his head, but I'm okay with that. However, it does not mean we have to wait for a beach visit! As long as the trache actually comes out, we got the go-ahead to put a bandage over that stoma and head towards the surf! Of course, back to the cleaning part, I'm not looking forward to after the beach, but overall it's a small price to pay :)

By the way, the chain is down to TWO! Back to everyday fun at the Byrne house... see below :)

Cutest firefighter that I ever did see :)

An oldie but a goodie... no worries, Samuel is not back on his passy muir,

I just love this photo from a few weeks ago of he and his PT!

Oh geez - do I really look THAT stressed out, Olivia!

Much better :)
Mama and daughter enjoying some computer time together :)

This house is terribly tiny, but the kiddos didn't seem to mind :)
Olivia swinging from the rafter, George checking to see who's at the front door,

and Samuel... I swear he's not miserable!


Seriously - he wasn't miserable!
Olivia, on the other hand, was completely unhappy about having her photo taken. Ha ha!

Yea! See! Samuel IS happy!

George decided he had enough of the close quarters... he was off to explore.

Olivia decided she wanted to go along for the adventure of moving leaves from one pile to another...

... with that rake and bucket it appears she may be trying to direct the leaf moving :)

But I don't think George is paying too much attention.

Although a prone stander isn't necessarily "normal life" for most folks - Pooh Bear is!

Plus, I have to brag on my boy - he is doing great in this thing!

Mo and Do, thank you very much for sending DB a birthday card that sings and lights up... and please sense the sarcasm.

All three kiddos LOVED it :)

3 Links Remaining... and Daffodils :)

YEA!!!! We are down to this...

Why the photo of just the links and no Samuel? Apparently Samuel is not quite as excited about the chain as I am - little stinker kept throwing it on the ground when I tried to get him to hold it for a photo! Maybe one of my big mistakes was trying to shoot this while he was playing with his books :)

Only three links remaining in our decannualtion chain - holy moly. We will tear one tonight, one Wednesday night, and the last one Thursday night, and then Friday will be here. I'm not sure I can explain these tears, but lucky for you, I will try :)

We are so over-the-moon excited we can hardly stand it! I can't even imagine my guy, my Samuel, without a trache, and believe me, I've tried :) Well, I CAN imagine it... I just can't believe that it might be this week. Samuel is one step closer to healthy, one step closer to normalcy (not that normal is ideal or anything :) ), one step closer to playing in the sand, and one step closer to being able to put his face in the water. Hard to believe that my child has never put his face in the water... he has no idea what it feels like to have a nice cup of water poured over your head as it washes the day away. He has been bathed, don't get me wrong, but it's just not the same.

I have fully let go of my what-if's... well, as fully as one can I think... and am completely excited about what this weekend might hold. My perma-grin is starting to hurt and I've still got a few days - wish me luck!

Nope, I can't even begin to explain the tears. Oh well. Random... Yesterday I told my boss that I was really glad it was the 14th... because that meant the 18th was only 4 days away :) YEA! He just laughed :)

Don't worry, we're not so focused on the trache that we aren't enjoying normal life too! The first weekend in March our local Daffodil Farm had a U-Pick Daffodils Day, and we loved it. Funny though, I remembered the camera, but had to be reminded to bring a bucket to put the flowers in :) I really think if they offered people a chance to come and just take pictures before the flowers got picked they could make some serious cash.

Omi, Kristen, me, and the babies all had a great time!

My first shot at a group photo...

Samuel looks just as annoyed as I was that this lady walked right into the photo!

Not her fault, I suppose...

Second try...

some cropping to get rid of the people in the background

AND at least one baby is smiling!

George couldn't figure out why folks were walking all over the place picking flowers, he found a whole bunch of them right here! Ha ha!

He did eventually pick flowers and add to the bucket,

instead of taking them away :)

Once Olivia got a hold of two flowers - one for each hand - she was in heaven!

Literally - nothing could have made her happier than a flower for each hand :)

Although, Kristen's bouquet was pretty neat too :)

BB: Samuel, check out these pretty flowers!

Samuel: Hey mama, did you see those trees over there?!

BB: Samuel, seriously, check out these flowers!

Samuel: Hey mama, check out this neat dried grass!

Hey mama, did you see these flowers?! :)