Smiles and more smiles

I have to admit that it's not easy to watch this little girl smile wide, when her lip is only partially sewed closed. With the partial adhesion, it doesn't look like much, and it's nervous-making to think of it trying to heal. But crying stretches the lip as well, and she does that too. On balance, I'd rather see her smile. So it is with relief tempered by a raw edge of nerves that I watch moments like these emerge.

She is not always happy. She is difficult to please still, fussy often, just generally not comfortable. How could she be, with so much going on inside her head? She has the ear tubes healing (and her ear canals changing shape and losing fluid and changing the way she hears and feels inside her head), the skin and cartilage and mucous membranes inside her mouth healing more slowly, and the lip stretched into its new form. You know how you feel when you have just a head cold or an ear infection? Like you're underwater? Like nothing is right, and you can't focus, and you're not comfortable either awake or asleep, and you've never been so miserable? I imagine this must be like that times about a zillion.

So when she does have stretches of pure happiness, like the hour or two we spent down at the confluence this afternoon, her spirit kind of amazes me.

She seems to find her best happiness when she has all of her family with her. Two of us is far better than one, and grandparents are a bonus (they took her for a long, Sunday walk this morning).

Look at that hair! I just noticed how much it's growing. Her feet seem to have grown, too, and I'm going to have to measure her again soon because I don't know if it's an illusion, but she seems longer as well. The little tummy she was getting before surgery is gone - her flat, flat belly is back (thanks to sparse solid food consumption for the first few days). But for the past two or three days she's been eating her pre-surgery quantities of real food (which is quite a bit) so I have a feeling she'll fill out again pretty quick. She doesn't drink as much juice and water as she did before, so we have to kind of encourage the fluids 24/7. But at least she's good and hungry. And she's using that new suction she has inside her mouth - you can hear her sucking!

She's kind of a pincher. And a poker. And a scraper. She can be very sweet with her affection, but she can also be rough. She still needs to learn "gentle"!

Here's her old, puckish spirit showing itself again! Look at that face.


That's a happy girl who feels loved.

Today was supposed to be the last of the lingering summer weather - gorgeous and warm, with a rim of autumn gold on the world. We had to take advantage during M's lunchbreak, grab hot dogs from the stand by the river, and lounge in the grass while we still had the chance.

Still a poser!

Daddy is like an amusement park ride.

And QQ chuckles and grins through it all.

This face of pure, unadulterated enjoyment makes up for the hours of discomfort and restlessness.

She does love her daddy.

Sometimes I really wish there were a way of keeping that mouth still. But you know what? My experience with cancer taught me that the single most important factor in healing is happiness - happiness at a cellular level. So I think on balance it's more important for her to be happy than to keep her face frozen. This pleasure will serve her well in her healing process - as important as rest and good nutrition.

Notice she doesn't have her arm splints on? Yeah, only when watchful hands are near, and only as long as she doesn't try to put her own sharp little fingers anywhere near her mouth. For those who were wondering about the splints, btw, they are like padded corsets for the arms, fastened with velcro, and their purpose it to keep her from putting her hands or any other objects in her mouth. She has to wear them even while sleeping (hence a great deal of her difficulty sleeping through the night - it can't be comfortable!) The cartilege that has been unbent and moved to cover her cleft takes a long time to heal, and is very fragile during the healing process. The only things that are allowed in her mouth for the first three weeks are silicone nipples and puréed or liquid food.

Daddy knows. He knows how to make a QiuQiu happy.

Even if it means she's upside-down. Giggle, giggle.

Walking with mommy.

As you can see, the splints do flex a little...but only a little. Not enough to allow her to reach her mouth.

Crossing the confluence.

It's a pretty river, especially this time of year, with green turning to gold.

A closeup of her face. Without the "whiskers", you can see the nature of the "lip adhesion". It's really just a few stitches from inside the nose about halfway down the cleft of th elip. This eases the tension on the mouth, and prevents unnecessary stress scarring. If it stays sealed and all goes well, by the time the next surgery comes around six months from now the muscles and skin will be used to the new position, and there will be very little tension on the new, cosmetic stitches, allowing them to heal with minimum scarring. Let's hope all goes as planned! Me, I'm amazed at how well the sides of her lip "meet". Like two pieces of a puzzle.

Getting some love from daddy at Starbucks.

Asleep in the car seat on the way home. Sigh. She looks so peaceful. Unfortunately, she woke up cranky, and the rest of the day was more difficult. We still have our ups and downs. But each day she's another step closer to well.


Rhonda said...

I'm SO happy to hear that QQ is doing better!

MotherMotherOcean said...

Her face is changing. She looks wonderful. What a long pull this will be for her!

Vivian M said...

She really is an amazing child. And I am sure Daddy is loving his lunch breaks more than ever!
I agree with you, happiness does help healing. Laughter is the best medicine!

Fliss and Mike Adventures said...

Regardless of anything she is going through... she always seem a happy little soul... (ok I know you don't show the grumpy parts) but still...

Carrie said...

it so hard to look at her unhappy- I think I like the smiles too! MJ didn't like to hug or kiss at first but now she the best kisser she will kiss your face all over it is so funny! I would say one peck is enough but we don't want to discourage the kisses!

J said...

Poor sweet baby girl. It has to be so confusing to feel so different. She looks just amazing though! Beautiful girl.

Heather said...

I certinaly can't blame her for being a bit cranky, but it's nice to see her smiles!

Yoli said...

It cannot be easy to be this uncomfortable, yet she tries to make the best of it. Strong baby. She looks lovely and it is endearing how much she enjoys her family. Maia, you have to take advantage of all that hair when she feels better. Get a bunch of scrunchies and go hog wild!

Mamacita said...

I love the way she is reaching for you in so many of the pictures.

sarahthefantastic said...

Very spiffy splints! YaYa's were much simpler and not so padded. What a great idea to soften them like that. Glad she is getting some breaks from the hard parts of convalescence and that she knows you are the best source of comfort. She is doing so impressively well with all that life is bringing her! I remember the information sheets we got from the hospital when YY was released reminded us that every day they will get a lot better. In the early days it seemed like we would be struggling for a long time, but they were right. A few short days later and she was drinking with her new-feeling mouth.
Qiu Qiu is still the stunning beauty we all adore! In the third picture of you helping her to walk there is something that seems to almost be a hint of what she will look like when she's older. It's so fascinating to watch children and get those little glimpses of what may be. Of course, when I see these with YaYa I often wonder if that look is a bit of her birth father or mother too, making it all the more intruiguing. Thanks for all the posts in the midst of your challenging time. Still sending you lots of support! xoxo..

Maia said...

Things look like they're coming along so well! I just think about what a total crank bag I would be if I was as uncomfortable as she must be, and I'm amazed at her fortitude.

kris said...

i love reading every single word, all of it- the bumps, ups, downs, the happy and difficult. real life with QQ. she's such an amazing little girl. and you 3 are truly an inspiration to me as a family...

sue williams said...

Your little one is just a darling and she always will be, that is just who she is. Glad to hear she is taking all in stride. "Poor Momma" (that is what Jia says to me when she comes in the stroke my face at 4 AM!), poor momma, so worried and nervous. It is really tough to be a momma bear, but you are doing awesome. btw, love the new blog format, beautiful.

sue arlie and jia