Thanksgiving

What's not to love about Thanksgiving?! Food, football, and family - the perfect combination! Well, we didn't really get in much football, but we did talk about the annual Byrne Family football game we plan to start when the kids get a bit older :) Girls vs. Boys and Olivia and I plan to take them down!

What a year to give thanks! God and I talk a lot these days... a lot of our conversations are about thanks... for my husband, for babies, for family, for friends... for His patience, grace, and love... come to think of it, I'm not really sure why there is only one day per year devoted to giving thanks. Maybe we should start a second annual day of thanks!

I'll just keep it to the things that have happened this WEEK that I'm thankful for! Even that could take forever.... hmmmm...

Back to the great appointment that George and Olivia had... they go to the high risk clinic back at MUSC every few months for check ups. It's great - the team that runs the clinic is also part of the NICU team! They cared for Olivia and George when they were just 2 1/2 pounds, and now they still follow up to make sure they are developing at a good pace, and probably to check that other problems aren't developing, but we don't think about that :) Great news - they were very happy! Because of their extreme prematurity, G & O aren't exactly on track for being 10 months old, but they are catching up quickly. If they would have been born on their due date, they would only be about 7 months old. I know, strange to think about. The good news is they are developmentally ahead of being 7 months old and well on their way to "catching up". Yea!

I love holidays... lots of food, a few vacation days, and time to relax and laugh. But this year, holidays are also really tough. We celebrate every victory on our way to being together as a family... but we miss Samuel every day. Especially on holidays. Yes, we still get to visit... and you better believe we find ways to decorate the NICU... and the nurses definitely help Samuel know it's the holidays with funny art projects and outfits... but we miss him so much. DB is right though - we have so much to be thankful for... our miracles still amaze us every day and I hope we never forget that.

You might have turkey, but I got to try a lollipop!

And I'm pretty sure I love it!

(Samuel also got to try a few drops of water this week - and loved it! It's incredible the things we take for granted.)

Just too cute :)

George and Olivia met the beach on Thanksgiving...

and loved it!

When we arrived, George would not look away - he was infatuated with the waves! Dad was very proud :)

Olivia got to try out the new pack! Thank you swim team!

Yea, beach! Pampaw would be happy :)

A pack AND a chair! Did I mention I love it?!

The Feast!

Nobody wants to see the big people eating...

but the little people were hysterical!

George loves to eat from a spoon... so Omi helps him try out the potatoes...

...did I mention they were garlic mashed potatoes? He loved them!

Well, if he can do it, so can I... I think...

Yum!

That's quite the celebration over potatoes! Can't wait to see what happens if she tries the turkey! ha ha!

Olivia steals a kiss from her favorite cousin - literally!

Madison makes me happy!

Time to go home :)

#300 was excellent!

Yep, Monday was Day of Life 300... just one of the things you probably only know if you've been in the hospital too long :) Hmmm... should we start with the great appointment that George and Olivia had, the incredible meeting we had with Samuel's doctors, the family photo, or the new house?! Yes, really, all in one day, #300 to be exact - and all were fantastic. How about we start with, whew!

I will just have to do lots of posts this week, because I'm a talker and simply can't fit all of that into one post. :) We have to start with the Samuel news!

IF everything goes according to plan, Samuel could be home in early/mid January! We have to keep in mind that we have passed many possible "come home" dates... but at the same time we are over the moon that our little guy could be home in 6 weeks! Just before his 1st birthday!

The surgery team thinks he is now strong enough for his g-tube and the nissen - yea! Hopefully he will be scheduled for surgery in the next 10 days. After surgery Samuel will most likely take a few steps backward on his respiratory status. But, the team is very optimistic that he will turn it around and be back to his current "normal" in no time. According to his pulmonologist his new "normal" is good enough to come home! Soon he will even be moved onto the home vent (there's no such thing as home CPap) in preparation to leave the hospital. So, pending a successful surgery, successful feeding through the g-tube and with the new nissen in place, and a few more drug weens, this could really happen. Samuel could really come home.

Not gonna lie, I am a bundle of emotions. Catch me one second and I'm swinging from the rooftops laughing and smiling, catch me another and I'm totally overwhelmed and teary. Luckily the teary usually happens when I'm by myself... I really shouldn't listen to my christian music station when I'm alone in the car. God is good! Sometimes I'm overwhelmed with joy... sometimes with amazement... sometimes with fear. I'm not scared to bring Samuel home - I've never wanted anything more in my entire life and I know the NICU team will prepare us - but he is just so special and I want to do everything right. At this point in my life, I completely understand there is no "right way" when it comes to parenting, but I want to try :)

Thinking about Samuel coming home also reminds me that he has been in the hospital for almost a year. I know that sounds crazy, but I just can't believe it's been that long. We have so much catching up to do!

Yes, #300 was defintely a good day.

Whew! All this good news is making me tired! I've been workin' hard!

Getting ready for Christmas :) And teeth! They are just under the surface and driving Samuel crazy.

Gotta love story time! Who knew there was more to the itsy bitsy spider than the first verse?!

George showing off his skills :)

I love my shoelaces... the string on the balloon... and this fantastic cord on the camera! You can take my picture any time!

I can't believe mom and dad were about to throw away the best part of the mail... the envelope! Christmas should be fun this year :)

Teething buscuits (thank you Rachel!)... awfully messy, but awfully funny too!

Little girls are entirely too much fun to dress up... especially when they start wearing shoes!

Pretty little "oso" :)

Trach Collar Trials - week TWO!

I know, you never knew there was a week one for the trach collar :) I thought about writing, a lot, but for some reason needed to get through the first week for it to be real. This is another amazing step... another step we weren't sure we would ever take... another hold your breath moment... another day for Samuel to be a rock star!

A trach collar trial is a chance for Samuel to be disconnected from the ventilator/CPap and breathe on his own through the trach tube. (See - makes you nervous already!) These breathing trials are done as “mock” trials to see how well he can breathe on his own without the help of a ventilator/CPap. (Just a little more nervous...) Samuel has done anywhere from 30 minutes to 2 hours! (Breathe easy :) ) In between trials, the trach tube is reconnected to the ventilator/CPap so he can rest.

When he is disconnected from the ventilator/CPap, a different "breathing" tube is attached to his trach tube... he gets warm, wet, oxygen through it. This provides some oxygen flow, but does not provide breaths. I know, confusing...

Ventilator - provides oxygen, provides pressure, makes the lungs breathe in and out

CPap (what we're on 20-22 hours per day) - it is the ventilator, still provides oxygen and pressure, but the part is turned off that makes the lungs breathe in and out

Trach Collar (what we're on 2-4 hours per day) - provides oxygen, lungs have to do all of their own work

Bottom line - WOO HOO!

On CPap - check out all the tubing...

Still CPap - a little closer look...

Trach collar! One big tube!

He actually has a cold so the trach collar trials were stopped for a few days. But, they have resumed and are going well. Samuel is amazing!!! We're looking forward to getting over this cold :)

Samuel and his "I have a cold" face ... still a cutie!

Didn't forget brother and sister :)

No, I'm not comfortable at all... why do you ask? Sweet girl with her dad :)

Mom, I'm kinda busy right now... uh oh, a sign of things to come :)

Weening and Waiting

It has been nearly four weeks since Samuel came of the JET ventilator... and he is still rockin' the CPap!

Being off the JET has been fantastic for many reasons, the top two being:

1. He doesn't have to listen to the constant, 24/7, sound of "dut, dut, dut" (sounds kind of like a jackhammer or a helicopter... it's enough to drive you crazy ).

2. Now that he's on CPap, he's also on a normal trache connection which means it is much easier to hold him! For the first time since June we can hold him chest to chest like a little baby!

This is mom's favorite... Samuel looks pretty comfy too :)

Now we are in the weening process... both on the CPap settings and his meds. Samuel's CPap settings have come down incredibly over the last four weeks, and he continues to amaze everyone. He needs to ween to "home vent" settings - in other words, the settings have to be low enough for us to maintain once he comes home. So far, he is on the right track :)

We are also weening the meds... his morphine and versed. Actually, after a couple unsuccessful tries (watching Samuel withdrawal was terrible), the NICU team tried something new and he is now completely off the versed! It is wonderful - I really think it's almost like a fog has been lifted. Samuel has been so smiley and playful! They also continue to ween the morphine... slowly. Samuel does not do well with change, hence the couple tries it took to get off the versed.

Now comes the waiting... we will wait for the feeding tube surgery for a little while. It's called a G-tube, and he will also get a nissen. Below are more in-depth descriptions of what these are, but in general the g-tube is how Samuel will get nutrition while he learns to eat, and the nissen is a procedure where they wrap the stomach to prevent reflux and, more importantly in Samuel's case, reduce the risk of aspiration. For kiddos on traches aspirating is extremely scary.

Samuel is strong enough to get the g-tube, but not the nissen... so to avoid two surgeries, we will wait. During the nissen surgery, CO2 is used to puff open the stomach... CO2 is exactly what Samuel has been trying so hard to get rid of! Anesthesiology is reassessing him weekly, and once they give the thumbs up, the surgery team will reconsider him. But, waiting isn't all bad. I can't believe I just said that. From what I understand, we have been working so hard on Samuel's respiratory status and we need to remember how far he has come... and unfortunately, how fragile he still is. He has amazed us! And, since there's no reason to rush the surgery, DB and I just need to practice our patience. Yea :)

G-tube: A gastrostomy feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall, directly into the stomach.

Nissen fundoplication: During the fundoplication surgery, the surgeon improves the natural barrier between the stomach and the esophagus by wrapping a part of the stomach known as the gastric fundus around the lower esophagus. This prevents the flow of acids from the stomach into the esophagus, and strengthens the valve between the esophagus and stomach, which stops acid from backing up into the esophagus as easily.

I love to suck my thumb!

Check out my toy! It's not a tube, but it will do :)

Sweet boy - sleeping peacefully after a busy day... in his spider man undies :)

Oops... "drawers" :)

Happy Halloween

Getting dressed up is so much fun! First came the Fall Festival at school... and a chance to wear lots of orange :)

Nine months old - and ready to run :)

What - you love my orange bow? So do I!

Whew! Too much fun... must stay awake... nope, just can't do it...

That, or he's had too much candy :)

The little pumpkin and Omi :) Samuel wins for the most orange!

Then came the big night - Halloween!

I've never seen cuter M-n-M's :)

Our first Halloween candy! Thank you Josh and Kristen! Open the bag? Why - the packaging is awfully tasty!

All smiles at home...

... and in the NICU :)

Hi mom! Happy Halloween!

Being this cute is exhausting.

Just like a man... ha ha!