Sunday, September 17, 2006

Kaitlyn Smiled...and good lung news.

You can't know how long I've been waiting to see my daughter smile. She's almost a year old and FINALLY she's smiled!!!

Kaitlyn smiled yesterday about 7 times and today about 3 times!!!!! I was able to capture the moment on film. It first happened yesterday on her changing table, she was looking up at the ceiling, (yes, the ceiling) not her mobile, not me, not anything in particluar, she looked above her head and broke out in a smile. A big smile. A really big smile. I got her eyes and the smile stopped, she looked upward again, and smiled again and again and again. I started crying when I looked up at the ceiling and didn't see what she was looking at.

Because the first thing I thought of was the fact that Corinne's ashes are in Kaitlyn's room and I felt her presense so strongly as Kaitlyn smiled for the first time over and over and over. Tears lept to my eyes. I called Brian in and she presented us with a few more smiles.

I went to bed hoping that maybe this morning for the first time ever she would smile at me, but no that's still not to be. Later when I was about to give her a bath she did the same thing, looked upward and smiled about 4 times - AND I was able to capture 2 on camera!

OK, I thought my daughter was beautiful with her serious face, but look at her now!!!

Enjoy (and oh, Kaitlyn is 15 pounds 6 ounces - she finally surpassed the 15 pound mark)!!!

OK, I should probably post this in a seperate email, just to end on the smile above, but at least the following is good news:

Lung Test

Kaitlyn had her lung test (again - remember the last one failed AFTER she was sedated) this last week, and this time the machines were working. The test was scary for mom, as having Kaitlyn sedated brought me back to the NICU. I guess there are only 20 of these machines any where in the world, so we are lucky that we have access to such good medical care here. The test was at UCSF.

The test basically is similar to what an adult would go through on a lung function test, but an adult can hold their breath, suck in air, blow out hard, etc, and an infant obviously can't.

There are different portions of the test, one part she had to be closed in a box, other parts they held her breath for 3 breaths, and another where her chest is expanded. The whole thing was scary for me. Pictures of the test are below.

This was after the test, while Kaitlyn was still sedated. I'm holding her and couldn't wait for her to wake up.

Resluts of Kaitlyn's lung function test:

Basically Kaitlyn does in deed have Chronic Lung Disease (that certainly wasn't anything out of the ordinary,) BUT the good news is that it seems to be fairly mild. This is absolutely amazing news, remember that Kaitlyn spent 1 month on a ventilator, had her lungs collasp many times, filled with fluid and was put on many many drugs during that time. She then spent more weeks on a CPAP machine and another 2 months on oxygen. We were completely surprised that she didn't come home from the NICU needing oxygen and now we are even more pleasantly surprised that her Lung Disease is only mild.

Now, she's still at risk for RSV (which is a common child cold/flu that if kids with Chronic Lung Disease get it can be put right back onto a ventilator) and will still need to be under hibernation from other children this winter, BUT I feel that it won't need to be as strict now as we had to be last winter, which is great news!! it also means that she can fly on an airplane (again not in the winter with flug bugs and RSV season).

Here are a few bath pictures - Kaitlyn's first Big Girl Bath!


Jill said...

Hooray for Kaitlyn........and Mommy and Daddy. I got chills all over my body reading this post. I truly feel that Corrine had something to do with Kaitlyn smiling. I hope there are many more smiles to come.

On another note, where did you get the wedge for her crib. Maybe that will help with John's vomitting at night.

Anonymous said...

That is great! I want you to know that I got a message from Kapitula (the energy healer) today. She said for you to call her- her number is under Best wishes -E

Allison said...

That is the best news I have heard in a long time. I am so happy for you!

Anonymous said...

I got tears in my eyes reading about and then seeing Kaitlyn's smile.

She is extra beautiful when she smiles! I'm sure that this is just the beginning of millions and billions of smiles to come.

I too believe that angel Corrine had something to do with your angel on earth's smiles.

Congratulations to Kaitlyn on entering the 15+lb club!

Anonymous said...

OMG, that is the MOST beautiful smile I have ever seen!!! Baby steps - it seems like you have so far to go until you look at how far you have come. We are all pulling for you and Brian and Kate. Going camping with friends had to give you and Brian a feeling of having some control over your life and feeling that you will be able to do the normal things that you miss. So important!! Love to you, Brian, and Kaitlyn!!


stephasteph said...

Who knew she could be any cuter! She is so precious and i also believe that Corrine was talking to her and helping her learn this newfound skill! I get signs from my baby daughter in Heaven with coins! You might start to notice them too. Charlize (my daughter) also sends butterflies! Its wonderful! I am so happy that Kaitlyn is doing so well!!!

Kim said...

Oh my gosh, that smile is absolutely precious! And it is the sweetest thing in the world that Corinne got Kaitlyn's first smile--I know you were hoping it would be you who received it, but I guess nothing can break that twin bond :)

So glad to hear that the CLD is mild and that Kaitlyn can fly (or go to Tahoe!) and that RSV season won't be quite as isolated as last year.

Always great to read good Katie updates!!!!

Kristin said...

Wonderful! I am so glad Kaitlyn finally shared her smiles that she's been storing up! Babies truely do things are their own schedule don't they?!

It's hard to believe that our babies will soon be 1 year old. It sounds like you are planning to have a grand celebration! (Kylin and Preston will be 1 on OCt. 7th).

Billie said...

Yay! So happy to see a smile! That sweet smiling face certainly brightened my morning:)

Michelle said...

What a perfect way to start my rainy day. Seeing that beautiful smile made me SMILE, and brought tears to my eyes. I am so happy for you to FINALLY see that sweet smile you've been waiting so long for. And HOORAY that her lung test was a success, and her CLD is only mild. Here's to many more smiles to come, and to Corrine for making it happen!

Kellie said...

I can't tell you how happy I am for you guys that Kaitlyn smiled! In my heart I know she was grinning at Corrine. She looks beautiful in the smiley pictures and I love the chub she's getting in the new bath pics! Congrats on the good news from the lung function study. It's great that her BPD/CLD is only mild. Will she end up qualifying for Synagis due to the "official" diagnosis now? (((HUGS))) to your gorgeous, smiling princess and her angel sister who is always watching over her and protecting her.

PreemieMom said...

Oh my God! What a BEAUTIFUL smile! Well worth the wait! I'm so happy for you guys I feel like jumping up and down! Congratulations all around!

JP said...

Yipeeeeee!!!! Those are the most beautiful pictures!! Halle used to smile at the ceiling a LOT. We always said she was looking at the angels that had watched over her for so long. I have no doubt that Kaitlyn was smiling at her sweet angel sister!

liz.mccarthy said...

Thank you all so much!! No smiles today so far, but I at least have the pictures of her smiling.
Every time I look at it my heart leaps with joy!!!!

She looks happy! She looks happy to be here! I'm so happy! Maybe one day the sight of her mom will make her smile!!

Anonymous said...

I have read your posts for a while (was originally from someone else's link). What wonderful news; I finally had to SAY something! May God continue to sustain and give you strength for all the battles you face in caring for and advocating for your dear girl. Lori in FL

Jenny said...

OMG LIZ! THATS WONDERFUL! I know how long you haev bee nwaiting for her to smile.......WOW!! she is gorgeous with that smile! I hope she keeps it up!

wonderful with the lung test! god thing the disease is mild! i am very surprised!


sarah Furlough said...

I have followed your blog for a while, as I feel like we have quite a bit in common. I was so happy to see your post today that Kaitlyn smiled. I know what a gift that was. I believe that Corrine is looking over Kaitlyn, just as my Logan is looking over his brother Cooper! It makes me smile to think of our little angels looking over their twins. It breaks my heart at the same time. Best wishes to you for many more smiles!

Amy said...

My heart sings for you, Liz. She is gorgeous in all her smiling glory.

Maggie said...

Great news! OMG - Kaitlyn is beautiful!!!

Kristin said...

WOOHOOO! Go Kaitlyn! All good news. Glad to see you got the bath thingie kneeler whatchamacallit... it rocks.

Keep smilin Kaitlyn!

Kristin & Presleigh

Michelle Flannagan said...

I loooovve the smiley photos. It's so great to see that grin on her face. I do think she is seeing Corrine up there, kids are so much more receptive to those things than adults are...

:) Michelle

Tonya said...

WTG Kaitlyn.. that is soo great :)

Laurie Abbey said...

That beautiful smile says it all! I have happy tears from looking at the pictures. I love reading your blog. You have an amazing way of bringing us along on your journey, bumps and all. Sounds like you are on a good path right now.

I am glad you and Brian got to get away for your big celebration and reconnect to each other without any vomit.

Kyle, my preemie (born 28.5 wks) is 14 months right now, getting ready to walk, and has put his NICU days behind him. We are reminded of his preemiehood now and then when he gets a cold which decides to head straight to his airway. We cherish his smiles, even if he is becoming quite a demanding little guy. Still wouldn't have it any other way.

All the best to l'il smiley and her continued progress!

dcj said...

What an amazing smile! Way to go Kaitlyn!

KMW said...

beautiful smile!