Sunday, January 30, 2011

Birthday Weekend!

On Friday, January 28th, our "babies" officially turned 2! Um, really?! :) Ha ha! Actually, it's more like Hooray!!!

Friday was the actual birthday, but we used it more as preparation for the birthday party. We practiced singing Happy Birthday and telling how old we are :)

Saturday was party day! The theme was simple... Three Babies, Two Years, ONE HOME! Hard to believe our babies are two, almost even more amazing how far they have come in a year. Click here to revisit Birthday #1 :)

It was perfect weather and the perfect crowd! (A relatively small crowd - we still have to be super careful about exposing Samuel to germs so we limited it to people who have been over in the last month, who unfortunately are also screened. But we have lots of therapists so that lengthened the invite list - ha ha! It's actually pretty humbling to see just how many people are intimately involved in helping our babies.) Photos below...

Sunday we got to spend with Omi, Uncle Jay, Favorite Cousin Madison, and Linda and had even more birthday! The kiddos got breakfast bagel treats and presents to open :) Plus, lots of play time with the family. Another great day!

The best way to tell the story of the birthday party... in photos (thank you Laura!):

Birthday Cake!

Adults singing Happy Birthday and presenting cake!
Babies wondering why they're the only people sitting down
and everyone is staring at them :)
Samuel: Olivia, what is this stuff?
Olivia: I think it's cake?
George: Guys, I think we're supposed to be smiling!


Olivia was not convinced that cake is yummy...
I'm pretty sure that's the only cake she ate,
on that one little finger :)
George was trying to be polite, so instead of using his hands,
he used the candle as a spoon :)

Samuel dove right in with his hands, but was not interested
in eating any... but was interested in chewing on
one of his favorite forks :)
Ha ha! I love these three - they are so wonderful, and so different from each other!

Family Photo! George, could you eat any more cake?

Family Photo! George, pause with the cake for a minute please...

Family Photo! Well, at least George was finally ready :) Smiling AND telling us he's two!

After the cake, it was time to play, play, play!
Mo - the outfits ROCKED!!!
Who needs more matching blue checkered shirts and a pink dress?
These were SO much better!!!

Go figure, George and a truck!

Running! Actually, racing :) Ready, set, GO!

Time for some serious play in the sandbox :)

Olivia ready to go "flying" with mom! We put the cape to some use :)

Even raking requires accessories - love the necklace :)

Not much is more fun than pinestraw!

Samuel holding court with his groupies :)

Showing off both his crawling skills and new "zzzz" sound.

Signing "more"... which is almost always followed by "please " :)
Sorry Samuel, it's another year before the next birthday!

Sunday, January 16, 2011

Matters of the Heart

Samuel had an incredible cardiology visit last week! His pulmonary hypertension is "mild to absent!" Mild??? Absent??? What?! Those words haven't been used enough with Samuel's medical history :) Woo Hoo!!! (Pulmonary hypertension is abnormally high blood pressure in the arteries of the lungs - lots of bad things can come from having it and honestly I was so excited to hear "mild to absent" that I completely forgot to ask if this was expected to happen.)

Samuel still has an ASD, (Atrial Septal Defect - basically a hole between the upper two chambers of his heart) but we're not surprised by that at all... nor are we terribly worried. I know, that sounds terrible, but it's fairly common especially compared to Samuel's other complications and it's something that shouldn't affect him in regards to growth or development. Plus, I think it can get fixed in the next year or so :) George had his ASD repaired Christmas 2009, along with his PDA, so it also eases the nerves that we've been here before. Remind me of that when it's actually time for surgery! Ha ha! (Samuel's PDA was repaired when he was still an itty bitty guy.)

Follow up with our cardiologist will be in 5-6 months - love it! If the pulmonary hypertension is still looking good, then Samuel may be able to come off his heart medicine. Love it even more :)

Just a little side note about Samuel's heart... even though it's not text-book-perfect (yet!), it's strength is one of the reasons he made it through "the bad days" in July 2009. It was able to keep working, with the help of a little nitric oxide, during a time when his little body was under the most intense stress. Many times the hearts of little babies like Samuel just can't keep going when faced with extreme injury to other major organs, including the lungs. The good news we received last week reminds me of all that Samuel's body and spirit have been through, and what an incredible little guy he is.

There's a new reader in town!

Maybe Samuel was looking for a book that defined pulmonary hypertension and ASD :) He cleared the entire book shelf!

I'm pretty sure he had a great time doing it, too!

He looked at every,

... single,

... book!

And then some :)

George loves the animals :)

Olivia loves "her" slippers :)

Monday, January 10, 2011

Summer Dreaming

It is literally freezing outside today... freezing rain, frozen ground, I think even the wind is frozen. For those of you that live in places where it snows, and don't feel bad for me that it was 30 degrees today, I would just like to point out that we purposely don't live where it's generally cold :)

A blast from the past - Summer 2010. I love looking at these photos on days like this. It makes me warm just thinking about the beach and what is to come! And after my last post and renewed commitment to celebrate - I'm putting it in writing... DB and I want to take Samuel to the beach this summer. We want to take him so badly, and it just might happen :)

The Goal

From the lounge chair above to the pool below!

A Day At The Beach (Josh, you Rock! I love these photos!)

Kristin & George and BB & Olivia - everyone loved the waves!

George :)

Nice sandcastle - high five!

Olivia :)

Beach sumo anybody?

Tuesday, January 4, 2011

See Ya Later 4.0

My first title for this post was Secretion Management 101. Why in the world would I write about managing secretions?

Before I answer that, just in case the word secretions isn't a daily word used in every house like it is in ours... secretions are kind of like boogers :) Since Samuel breathes through his stoma (the hole in his neck), his secretions don't come up by way of his nose or mouth like all of us without traches. When Samuel coughs, his secretions come through the trach... which is why we have to suction them out. He is now strong enough to cough them up, so we're not dealing with actually trying to loosen them up from his chest anymore, but once they come up there's no where for them to go... gotta love the suction machine! This post really wasn't intended to gross anyone out :)

So... we are working on managing our secretions because something changed today... we downsized the trach! From a 4.0 to a 3.5! This is a big deal - not only does this mean the trach is smaller (which among other things means that Samuel has to manage his secretions a little differently), but the stoma will start to get slightly smaller to compensate for the new trach, and this is another step towards eventually decannulating (getting rid of the trach)!

One of the big reasons we were able to make this move today is because while we still have the ventilator in our house, Samuel has not used it for FOUR weeks! Did I forget to mention that in previous posts? :) After four weeks off the vent (still using the HME/thermovent, trach collar, and extra oxygen, but no vent), Samuel's blood work today was excellent! The best it's been in a long time! Oh my... very surreal...

I tried to post about this before, I really did. I don't know how to explain how I'm feeling... I know, BB with no words doesn't happen very often, but this parenting thing leaves me tongue-tied quite often :) Prior to our appointment in early December, our pulmonologist said to trial Samuel off the vent for a week. At the following appointment, his blood work was okay, meaning CO2 and base excess were both a little high, but not high enough to warrant putting Samuel back on the vent. So, the doctor said to try keeping him off the vent the entire three weeks between that appointment and the one we had today.

As I said above, after four weeks off the vent, Samuel's blood work was excellent! CO2 was lower then it's been in a long time and base excess was down tremendously. Based on the numbers, our pulmonologist called our ENT - we met with her and they both agreed about downsizing the trach. They also agreed that if Samuel can have another four weeks off the vent with good blood work then we can talk about taking even more steps towards decannulating! There are still a handful of steps to go, but this is the closest we have ever been to not having a trach.

I am so excited for Samuel! I am so excited for our family! I am so excited for Samuel's parents :) I am also back to a place I haven't been for a while... nervous and anxious to get too excited. What if I get my hopes up, and we backslide... what if I get really excited, and things don't go as planned... what if. I think I know why it took me four weeks to post this incredible news... I needed the last four weeks to be mine, and DB's, and Samuel's... and I needed it to have the courage to say that I don't care "what if"! That's not as easy as it sounds. But in my opinion, there's really no such thing as being too excited about something :) What's the worst that can happen? We've taken our share of detours and backslides in the past two years, and you know, none of them buried us. In fact, I am positive that they've made us better, and more thankful, and more grateful, and more faithful. I'll never know for sure, but that's okay, too.

We are overjoyed! Samuel's progress is absolutely incredible! The miracle continues :)

A few more photos from our Christmas season...

Samuel, Do, and the Icky Sticky Frog... quite a graphic circle-of-life book, but the phrase that's repeated throughout makes Samuel laugh every time!

Uncle Aaron holding court during coloring time :) It's almost like they're paying attention in art class! ha ha!

Mo and Do covered in babies - they don't look too upset about it :)

Uncle Aaron and Samuel exchanging facial expressions :)

George went to help Do and DB pick out the Christmas Tree. He even came home with his very own little tree (see his right hand)!

George and Olivia in their new house!
This thing is great! Mo actually made it for Aaron and I back in the early 80's I think, and the kids absolutely love it.

Before bed story time :)

Who says you have to choose? You can be a princess AND a firefighter!

Daddy and Samuel sharing a good book, one of DB's favorite's - Santa Mouse. Very sad, even with lots of preparation to make sure the light at the top of our tree was yellow so that Santa Mouse would come, it burned out!

Multi-tasking. George wanted to be a helper and take Olivia her milk, but did not want to give up either his milk or truck to do it. I was seriously impressed he made it from the kitchen to their bedroom!