this week is the week!

We are hoping (with fingers crossed) that we'll be moving to into our new home this week! We've had some "bumps" these last couple of weeks with the house (a little flood, wrong stain for the floor then a total stain re-do, as well as other typical issues that go with house building) but it looks like we're going to be living there by the end of the week! Busy doesn't seem like an adequate word to describe our days right now...along with packing, cleaning, organizing, lifting, loading, unloading, cleaning and more packing, we have "normal life" going on like head colds, family get-togethers, preschool graduation, baseball games, a spring concert, kindergarten graduation accompanied with some trips to town and trips back and forth to the new house (which is 8 miles). I can't wait for life to slow down a bit for us and to be in our new house!!!
I have lots to post about these three and will get to it once I have some time! I'm procrastinating on packing right now and the computer was calling my name :)

Poo-Pops

Everyone needs a pair and Maddie insists on wearing her pOO-PoPS everywhere (even to bed last night). I must ask her 100 times a day, "what's on your feet?" just so I can hear her say flip-flops. Love it!

Somebody's happy to be home!

We got home yesterday afternoon and little miss couldn't be more chipper! I'm amazed at what a balloon dialation can do for those pulmonaries! On the drive home, she sang from Cle Elum until we pulled into our driveway. I'd say she's recovering quite well from her catheterization since she's climbing on everything, playing with her baby, and staying busy emptying drawers. She must be feeling a little behind from being gone :) And so does her mom! Gotta get to packing...we're hoping to move into our new home the end of the month!!!

cath lab pictures

narrowing of left and right pulmonary arteries

this shows the balloon being inflated in one of the pa's...the tissue is stubborn in the middle of the artery, still wanting to clamp down

this shows the 4 metal coils that were put in her last year's cath to coil off the collateral vessels, they'll stay in there forever

after the balloon valvuoplasty...improved width of the pulmonary arteries.

cath result news

Maddie's cath went really well and it's always refreshing to hear that the docs were PLEASED with how it went. Not only did she have Dr. Johnston's expertise, Dr. Chun, Dr. Jones (who came by later) and Dr. McMullan were all in on the effort. She was out and into recovery by 5:30 and we were finally able to see her an hour later. Dr. Johnston was able to insert and dilate a balloon thru the cath at the narrowed sites on both her right and left pulmonary arteries. The bottle necked areas with the stenosis (result from scar tissue) were 1/3 of the size compared to the rest of her pulmonary artery (4 mm at the narrowing and 12 mm throughout the rest of the PA). He didn't see the need to place stents since the ballooning seemed sufficient for now and she responded to it. She's currently satting 78% which is high for our girl. Sure beats the low 70's she's been favoring lately :) The area that is narrowed is on both sides of her SVC where the pulmonaries go out to the left and right lung so placing stents in there would only complicate her next surgery. The left PA was worse because her aorta lies right at that spot so we'll see how long it stays widened. As far as the collaterals go, she didn't have any large/damaging enough to coil off. Dr. Johnston's thought was her increased cynosis is a result of the narrowed PA's and a pressure build up into the SVC...not so much from the collateral vessels. The four coils that Dr. Jones put in at last year's cath seem to have stopped any further growth of those vessels. He also measured pressures while in there and was happy with those numbers. We're on the 4th floor now and she's being monitored. If she keeps this smooth recovery up, we should be on our way home tomorrow.

Our little trooper devoured the apple juice, chocolate pudding and bites of my dinner and handled it fine. Yay for no pukes. She was hoarse from the breathing tube, a bit cranky and irritable this evening...totally understandable. Her puncture site at her neck bled quite a bit but other than that, she's been pretty good. She is now sleeping and content in her hospital crib...but will be interrupted soon for a chest x-ray and labs. It's true that you never get any rest in a hospital.

Thanks for your love and prayers today! Here's a couple of pics from our day...

Miss Mooms before being called back to the surgery center...she was trying to find something to eat in her backpack. She was s-t-a-r-v-i-n-g and kept reminding us she wanted to EAT. She hadn't had anything to drink since 8 am and nothing to eat since dinner the night before. Poor thing...so much for her maintaining 12.2 kilos (that's 27 lbs) Smiley girl after Versed and before surgery. This is McDreamy, oh, I mean her daddy and my McDreamy...hey, the real McDreamy (Patrick Dempsey aka Dr. Shephard) was here at Children's yesterday!
Recovering in our room on Giraffe 4th Floor

update on cath

I finally had a moment to run to the family resource center to update on one of their computers! We had a long afternoon of waiting...arrived at the hospital at 11:30 and Maddie was finally taken back to the cath lab at 2:30. She had some "silly juice" (Versed) about 20 minutes before going back and she was a silly, happy girl. Everything we said or did made her giggle. We had lots of smiles and lovin' before she went back and boy did this ease the stress of it all! She'll have amnesia as well :) I love Versed. Bryan went back with her with the nurses and said she did great before he had to leave.

Jesse and Luke came to visit us and it was so great seeing them. Sorry you had to wait on us Jesse! Luke is one of Maddie's heart buddies and is such a little cutie. Sharp as a tack too! Dr. McMullan also stopped by while we were waiting in the surgery center pre-op area and visited for a while. He's always fun to chat with and it's interesting for us to pick his brain on Maddie's heart.

Dr. Johnston is performing her cath, we thought it was going to be Dr. Jones, but he's on his day off. Johnston's done a procedure in the cath lab with her before (post surgery when she was a week old) and I was feeling better about it after getting to visit with him prior to her procedure. Anyway, the "plan" is to take a look around in her heart, measure pressures, possibly coil off any collaterals that he can get to, as well as a possible ballooning or stenting in her pulmonary arteries. This is all done through a catheter (wire like instrument) that is inserted through sites at her groin and neck. He won't know for sure until he's in there on what will be done. It should take 2-3 hours and will be paged when she's coming out. We've been told to be prepared to stay tonight and hopefully if all goes well, we should get to come home tomorrow. Thanks for your prayers and concerns. Maddie is one loved little girl. I'll try to update later on how it all goes.

cath tomorrow

I always find it difficult to focus the night before a trip to Children's. I never know how much to pack, how long we'll be gone, if everything is left in order and whether I've covered everything. Along with these thoughts are the "what if's" and worries about how it will go. This is Maddie's 4th cardiac catheterization, which should make her a pro at it by now. But I still feel like a rookie.

After dinner tonight, we enjoyed a fun family game of baseball, swinging on the swingset, dessert, and some snuggle time. It made me sad that our little girl has no idea about her surgery tomorrow, she was so playful and happy. It's kind of cruel. She won't be feeling so hot after her procedure but I have faith she'll do just fine...please say a little prayer for Maddie and for her medical team tomorrow. Thank you!!!

My fingers run along the line...
Upon my child's chest...
I ask her then..."Who loves you"?
Why mommy...loves you best.
"Do you know you're brave and strong?
And hope shines in your eyes"..
Do you know each day with you...
Is like a new sunrise?
I wonder if you understand...
Just how you've changed my heart..
My prayer to God will always be...
"Don't ever let us ever part".
Do you know...sweet girl of mine...
How very loved you are?
I could search for all my life...
But I need not look far.
For beauty rests within my midst...
In the heart of one small girl...
You've overcome so very much...
And live each day with joy.
Who loves you most I ask again...
A whisper in her ear....
Life has few sweet moments when things seem so very clear.
Why mommy loves you silly girl... She thinks you are the best...
You laugh at me in answer... I know that I am blessed.

~Stephanie Husted, Heart mom to Braeden