Monday, July 26, 2010

There's a New Piano Man in Town

Watch out George... Samuel is loving the piano, too :)

Hey mama!
I was worried that once again the action would end when the camera was spotted...

... nope! Not much stops the piano playing :)


Yea Samuel!
Little cheeser loves applause :)

Back to the music...

... uh oh... getting a little too into it...

... oops.
Luckily Olivia had been dancing near by - she was right there to inspect the tipping.

Back in action!

Thursday, July 15, 2010

Hearts and Lungs

This week, besides haircuts, we also had some doctors appointments. Fun to take photos during the haircuts, but the doctors appointments really rock our world :)

George had a follow-up cardiology appointment from his surgery back in December. The doctor said we can now consider him normal! ha ha! If there's one thing we've learned, there is no normal :) Back in December George had two devices placed in his heart to close two holes, an ASD and a PDA. Through echo and xray, the devices look great and George's heart seems to have done what it's supposed to - there is no leakage around the devices. It's incredibly interesting - the tissue grows around the devices, they essentially become part of the structure of his heart. The devices shouldn't have to be replaced - EVER! George's next heart follow-up will be around the time he turns 3.

Samuel had a cardiology appointment, too. His heart is also looking good! His PDA was ligated back when he was about 2 pounds, and more recently his ASD has popped open, but we aren't particularly worried about the ASD right now (George had his closed at such an early age because we had to close the PDA and the ASD was large enough that they wanted to try and do both at one time). The body is amazing... Samuel's heart can use the ASD/hole to relieve pressure if necessary. The biggest thing we watch for with Samuel's heart is his pulmonary hypertension, and after the echo, it appears it has stayed the same, if not gotten a little bit better. Woo Hoo!

Samuel's heart is a big deal. I know that sounds weird, everybody's heart is a big deal :) But in Samuel's case, one of the reasons he is alive is because his pulmonary hypertension didn't get worse last summer. Many times babies with such bad lungs have so much pressure put on the heart that the hypertension gets worse and worse and the heart just can't handle it. So to now hear that his heart is stable and may even be getting a little bit better is huge! Samuel doesn't have another cardiology visit for six months... so exciting, but also makes me a little nervous. Sad, I'm so used to seeing docs often that not going kind of stresses me out :)

Samuel also had another pulmonary follow up visit. It's been six weeks since the last one. His CO2 was higher then we wanted it to be, but luckily it appears it was high because he was really unhappy when getting his blood drawn. So they did send him home after the visit :) YEA! The visit was good... not as great as the last one during which we were told to really push progress... but good. I am happy because we're still progressing, but not as quickly as the last couple weeks.

Our marching orders are to keep Samuel off the vent, and on the thermovent/HME or trach collar, for as many hours a day as possible... but with a 2-hour break in the middle of the day during which he is on the vent. So far we've been consistent at getting in 10, sometimes 11 hours a day off the vent. This is great news! Also, we have lowered his oxygen level a ton! Still more than 21%, but less then 30% :) We will have another pulmonary visit in three weeks, so hopefully the CO2 will be lower and we can get back on the fast track.

A few pre-haircut photos just dying to be posted...


Check it out! Dad's in the mirror! And who is that handsome baby? He's funny!

George loves a good book!
This is actually my chair from when I was a little girl... it has recently become one of the favorite items causing many opportunities to learn how to share. ha ha!

Finally! We have been trying to get Olivia into the tunnel forever!

I think she likes it :)

George has always loved the tunnel... he would play in it all day if we let him!

Sweet Olivia reading... and trying to squeeze herself into a bumbo. She loves these chairs! I'm just hoping she doesn't get stuck in one...

Olivia and George always stop in Samuel's room on their way to breakfast...

... I think Samuel enjoys their wake-up call :)

Sweet George with his pre-hair cut, after bath, 'do :)

Tuesday, July 13, 2010

Happy Haircut Day!

George and Olivia had their first haircuts today! George really had a haircut, and I've got a lock to prove it :) Olivia just a small trim. But regardless of the amount of hair that was cut - it was quite a day! I considered trimming some of Samuel's just to say he had a haircut too, but that just didn't seem right. He should get to sit in the big chair too! Soon :)

We had so much fun! And yes, DB and I both went... a. neither one of us wanted to miss it, and b. we had no idea what George and Olivia would think of getting a haircut!

George went first... we thought he might be the more adventurous of the two today.
By the way, as soon as the haircut cover up went on, I'm pretty sure DB got teary :) Our big boy, George!

Uh oh... this trip could be headed downhill... fast...

Yep, out came the pouty lip...

... until the lollipop appeared! Amy, you are a genius!
They don't generally get lollipops, so it was a wonderful distraction from the haircut! Too funny, George wouldn't eat it at first, and because she didn't know what it was, Olivia wasn't jealous when she had to wait for hers :)

Then it was a breeze! George didn't even flinch when the clippers and then the hairdryer came out.

Handsome boys!

Olivia's turn! But, it doesn't seem that the lollipop is working!

False alarm... cut away :)

Hmmm... she just can't quite decide what to think!
But notice there is no cute haircut cover up... Olivia was very sure that she was not going to wear it :)

Happy girls! Thank you Amy!

Saturday, July 10, 2010

An Incredible Year

No, it's not a birthday... and it's not New Year's and time to reminisce and set goals... actually, there is no reason anyone else will ever remember July 10th. But DB and I will never forget it.

On July 10th, 2009, Samuel crashed. Dr. Taylor had to break the terrible news that he probably wouldn't live. Our frantic eyes looked into those of Samuel's three primaries, and RT's, and other doctors and nurses, as we begged for any glimmer of hope. I almost forgot, until I read the post from last year, how badly we needed a miracle.

Like last year, I am writing because this is part of my family's story, and because I don't want to forget how today feels. It's amazing how time works. I remember last year like it was yesterday... and sometimes like it was a decade ago. I remember the pain, but I can't feel all of it. It's something I swore I would never forget, because I never want to take a single day for granted with my babies... or with anyone I love, for that matter. I do remember it, and writing this post with tears in my eyes, I know I can still feel some of it... but time has healed part of me. I think that if I could really remember what last July 10th felt like, I would be a crazy person. Yes, crazier than I am now :)

One of the other things we will never forget was the compassion of the medical team. This incredible team had known our baby for almost 6 months... they knew our family sometimes better than we did :) We will always be thankful for shared tears, for the professional manner in which they took care of Samuel, for the tender way in which they cared for our baby, for friendship, and for honesty. Honesty was sometimes the hardest to swallow, but there is no other way we would have wanted it.

Today we celebrated! Not only the last year, but also a new step! How's that for perfect timing :) It was a test, but today Samuel was on the thermovent for 12 hours, straight! Extra oxygen, but no ventilator for 12 hours in a row! We will try a few more of these tests before our pulmonary visit this week, and then test for cO2 retention while we are there. Fingers crossed! This is HUGE!

We love our babies! And today, on his thermovent, I hugged Samuel, my baby, flat to my chest like a "normal" mother any time I wanted to. We are overjoyed!

A-ok :)

Sunday, July 4, 2010

Red, White, and Blue

Happy 4th of July!
No better way to start the day, then with a walk!
Plus, with Samuel's thermovent, it's so much easier. To walk around the block, we still have to take the oxygen, emergency bag, and suction machine... but not the big, heavy, ventilator. YEA!
The Crew

It's not the 4th of July without a dip in the pool :) Our friend, Lucas, and his mom came over too! Wow... four babies in the pool... at one point DB mentioned that the kids outnumbered the adults 4 to 3. We laughed because the kids ALWAYS outnumber the adults :)

Samuel had a great time learning new tricks... hey, wait a second! Samuel!!! Not funny, leave that attached to your trache.

Miss Olivia practiced her close-up :)

George hung with his best buddy... Belle seems pretty happy with it, too.

Incredible... check out last 4th of July...

Saturday, July 3, 2010

A Few of Our Favorite Things

These three never slow down! It feels like our house is covered with toys... most of the time that means everyone can play together, but not argue over anything in particular. Of course, not always :) But for this post, three different babies, three different activities, and three positively precious smiles.

Piano Man
George is at it again!
Tuning in process...

... performing for the crowd...

... a little love for the piano. Smooch! :)

Bucket o' Rice
Don't try to tell me you're not jealous!
Really? You want me to sit in rice?!

Well, it looks alright...

I love the rice!

Mirror, Mirror, on the Wall
Who is the fairest of them all?
Well, hello there...

It's me! I'm the fairest of them all!