Back to catching up on pre-surgery photos.
This is quite possibly my favorite series of Q to date. I can't wait to see her lovely face all healed and healthy again. Next week, I'm hoping!

The unbearable lightness of relief

When our plastic surgeon, Stacey Folk, came in to our hospital room at 8:30 am to check up on QQ and write our release orders, she told us that it was already 60 degrees outside, and that we needed to go home and go straight to the park for the afternoon.
Which is exactly what we did.
As you can see, we didn't even change...Q is still wearing the clothes she had on at the hospital.
We just grabbed the dog and a bag of bread for the ducks and went. By that time it was in the '70s.
It wasn't a banner duck day (some days, there are dozens of different species milling in carpets on the surface of the lake) but we were able to attract a small flotilla of Canada geese with our breadcrumbs.
They are handsome fellows.
These at our Berkeley lake are a bit more hesitant than the geese we usually find at Sloan's lake, and took some time to warm up to us.
QQ waiting to see if they'll come up on the bank.
Once they did, she was eager to hop out of her stroller and feed them.
After our frightening day, we made sure to keep an extra tight hold on her near the water.
One goose growing bolder.
QQ has no fear of the geese - in spite of the fact that they're as big as she is. And yes, she has had her little fingers snapped by their long bills before. Doesn't phase her. They don't hurt.



I can't even describe to you the sense of vast relief that rolled over us in waves all afternoon.
There is also a physical hangover from a shock that great. Our bodies ached from head to toe the day after the surgery, as if we'd been in a fight. But even that couldn't dull the brilliant, sun-yellow glow of what felt to me like a new lease on life. We had undergone a trial-by-fire, and come out the other side, hardly even scorched.
Here was our beautiful daughter, warm and solid and full of energy.
Except for a very slight fever that came and went, you'd never guess at the ordeal she'd been through.
She doesn't even need her tylenol or ibuprofen, and doesn't seem uncomfortable. Even most of the itching seems to be gone. I give her a half dose of tylenol with each meal, just as a preventative, but there is nothing like the constant discomfort she suffered after her first surgery, which left us sleepless for weeks.
Yesterday, she amazed us by taking a three hour nap, and then sleeping through the entire night without a peep, her arms flung high over her head and her body utterly relaxed. It is a great boost for our sanity and well-being, this sound sleep, and it makes me glad to see her little body getting the rest it needs in order to heal and recuperate. As you can imagine, however, I am back to sneaking into her room every half our or so to make sure she's still breathing. I think it will take me a while to get over that nervous tick again.
We are amazed and profoundly grateful for what we have, for our wonderful, loving little family.

Let the healing begin

This is me and Q at 5:30 am, bundling up for our trip to the hospital. Mostly, she was excited for an "adventure" at this point, and even at the hospital she was happy and calm - clearly she didn't have bad memories from last time, which is nice to see.

As some of you already know, we had some pretty serious complications after general anesthesia, and it was touch and go for a while in the recovery room. These were the longest hours of our lives, and I'm pretty sure I've never been so scared. Fortunately, the team at the hospital did a good job of stabilizing her and pulling her through.
The surgery itself went perfectly - the plastic surgeon was thrilled with the result, and QQ is doing much better after a long day and night in the hospital.
Q and daddy in the waiting room.

Some people have asked me in the past why I share things like this, and actually I have a very specific reason: To the uninitiated, it often seems like an insurmountable thing to adopt a child with medical needs. Naturally, it's frightening to contemplate the ramifications. No one wants to voluntarily undergo moments of terror like we did during this surgery, the fear of losing a child. But the fact is, these are not risks specific to children with congenital conditions. Children break bones, they get pneumonia, they choke on things, the risks are there for every one of us. This is just life.
I describe the process in detail in the hopes of demystifying it. What you see here is our life - the actual balance and heft of it. There is nothing I'm hiding, no dark secrets, no hidden dismay. The reason I describe both the good and the bad is because I want people to see that we live a very normal life. Our life doesn't center around Q's medical condition, nor does her condition define her. If anything it makes her a bit tougher, a bit more resilient in spirit. Children who go through things like this learn to take it in stride, and to focus on the best parts of life. They bounce back.

There are tasks that come with a medical condition, of course there are - extra checkups, a larger team of doctors, that sort of thing - but those quickly become routine. Like anything else in life, you adjust, you make room and time, you make it work. It's really a very ordinary process.

The biggest thing about our life with Q is the joy she brings, and that is the part we see every day. That is the thing that stands out. The rest of it just comes around every now and then, a chore, like doing your taxes or getting annual checkups.
As you can see, even in the prep room with both Q and daddy suited up for surgery (M got to carry her in and watch her go under this time) there's no hint of fear or alarm in her. They tell you that kids don't remember the bad parts, and they don't.
The surgery lasted about an hour and a half, including new ear tubes (one of her old ones had become blocked), inspection of the healed palate, and the full closure of the lip. When the plastic surgeon came out, she was radiant and delighted. The surgery, she told us, had gone perfectly. She was thrilled with the results. She also told us that the palate appeared to have healed beautifully and that no further work was necessary at this time either on the hard or soft palate. This was what we had hoped to hear - the best case scenario.

After that, however, the anesthesiologist came out, and I could tell as soon as she started talking that something had gone wrong.
M and I caught a pretty nasty upper-respiratory flu of some sort while we were in San Francisco, and it was a tough one to kick. It was so hard on us that I was pretty certain they'd have to reschedule Q's surgery. It seemed hard to imagine that she had spent days in a small hotel room with two people as sick as we were, and not catch anything.
Time passed, however, and she appeared healthy. I was nervous because I knew that a respiratory tract infection poses danger during general anesthesia. We were careful to tell the surgeon at our pre-op appointment about our illness. But Q had no signs of cough and her lungs sounded clear, she had no fever and all seemed well. Both the ENT and the plastic surgeon gave us the go-ahead to proceed with the scheduled surgery.

It was only after they removed the breathing tube post-surgery, we were told, that they discovered some congestion had been present deep in the lungs. It was very slight - her illness was mild, but even that was enough, in a child this small, to cause her airways to close up with anesthesia.
The anesthesiologist told us that they'd stabilized her, and that she was in the recovery room doing fine.
The first minutes in the recovery room.
As it turned out, however, her issues were not so easily resolved. The narcotics in her system exacerbated her breathing issues. She was taking juice from me just moments after surgery, but after several swallowed she suddenly gave a kind of hoarse ghasp and her eyes glazed over. Then I could see her heaving for air, and within moments her lips started turning blue.
We were immediately shuttled back out of the room while the medical team converged on her. There is no possible way to describe the bottomless fear of a moment like this, so I won't try. It was the worst moment of my life.
I have M's mom to thank for having the presence of mind to document this process with my camera. This is the shot she took of the lonely hallway down which we stared, petrified, for what felt like hours as they worked on stabilizing her again.
Back in the recovery room. The team had given her drugs that would reverse the narcotics in her system so that her natural functions could take over again. But the narcotics can't be reversed too quickly, and while we were back in the RR, she stopped breathing a third time. As we waited in the outer foyer this time, I have to admit I really thought we were losing her.
Back in the recovery room and this time no seizing...but by this time I was too gunshy to hold her again. I can't tell you the horror of feeling your only child seize up and go bloodless in your arms. I had to step away and let M do it this time. Fortunately, her airways did not seize again.
Neither, however, did she wake up. After a length of time, I could see M getting worried that maybe she had gone into some sort of coma. The doctor came in and looked at her pupils, and then nurse did a reflex test on the bottom of her foot - at which point her foot gave a good, healthy, annoyed kick - that was when I knew she was OK. It did take her a while to regain consciousness, but the doctor explained that the narcotics were still in her system, and that since the surgery itself was not a terribly painful one, the narcotics just knocked her out. Her little body had some recovering to do as well, after all that trauma.
It took a while for her breathing to return to normal and it was terribly difficult to watch her little torso heaving so unnaturally. But you could see when it ended, and it ended quite suddenly.
Her body relaxed, her eyes popped open, and she looked around at us alertly. You could see her craning to see people walking downt he hall, looking around the room for things she might want to touch. She even gave a chuckle and a little dance-jiggle when she saw the Pooh Bear decals on the glass wall. You can see the difference in her face in this photo.
There's the alertness back again as we load up for the trip to our overnight room in the pediatrics ward.
Reaching for Daddy's hand.
Rolling into our room. The tube I'm holding is her free-flowing oxygen, which helped to increase the oxygen saturation in her cells while her airways and body recovered.
Visiting with grandparents in the room. Once she recovered from the narcotics, you could see how much easier the actual surgery was on her system than the first one. With no cartilege involved, she was in very little pain, alert, chipper and active.
It was still a long and mostly sleepless night - the trauma had left her whole system oversensitive and she was having allergic reactions to the adhesive used to stick on her monitors, and particularly to the tape which had covered her eyes during surgery. This left her patchy, red, and extremely itchy. She also hates to have her hands and feet confined, so the IV in her hand and the oxygen monitor on her foot were a source of unending fury for her.
Still, the difference was marked from October's rough recovery. She was even exceptionally affectionate this time, giving out kisses, flirting, hugging, and trying to giggle even through her tape and stitches. Late in the night, as the three of us piled into the narrow hospital bed, she got particularly schmoopy and started getting M and I to give eachother kisses by turning our faces forcibly toward one another with her hands. This made her smile and chuckle every time. As she was sinking into a blessed (if brief) latenight nap, she grabbed my hand and M's and linked them over her back before falling asleep. Can you even believe that? The way her mind works never ceases to amaze me.
This morning, as we packed our belongings to go home. A whole new QQ. She was beyond delighted to be freed from her tethers of monitor cords and IV tubes, and toddled manically around the room collecting all the toys she'd been loaned.


Here she even backed up against the changing table to "pose" for me. And what's that in her right hand? Yup, a box of Cheerios. Munchkin decided to use this particularly traumatic occasion to start eating cheerios by the handful, as well as applesauce from a spoon - stitches be damned. I can see that progress will happen by leaps and bounds once she's healed. And you could already hear her making new sounds whith her mouth (her "mama" changed and became much more crisp and round-sounding overnight, and she was making little "Puh" puffs with her new lips, which is thrilling!), so I am excited to hear how her language progresses over the next weeks.
QQ's lip does in fact look seamless -as much of it as one can see around the bandages and glue. I can't wait to see what it looks like once healed and uncovered. What you see in her nose are plastic tubes that hold the nostrils in a widened position. These will stay in for a week (we hope) or as long as we can get her to keep them in. The idea is that a bit of scar tissue will form around the tube and bolster the cartilege where her nose is naturally flatter on the cleft side.
It did our hearts good to see how happy she was to find herself back at home. She actually crowed outloud when we pulled up to the curb, and wanted to parade up and down the sidewalk in the unseasonably warm sun for a while before going inside for her long-delayed lunch.
We gave her an episode of her beloved Yo GabbaGabba, and then put her down for her nap, where she was palpably radiant with joy to be back among her own things. So happy was she, in fact, that she didn't even complain when we put on the hated arm braces that she railed so bitterly against after the last surgery.

Surgery time again. Sigh.

Tomorrow morning at the crack of dawn we head into the hospital for Q's second surgery. We have every reason to feel positive about this surgery, which will complete the closure of her lip, and if all goes well it will be considerably less invasive than the last round. Still, it's hard not to be nervous, and to feel a sense of guilt at betraying this little girl's trust once again. It's especially difficult when they're still too young to understand why they need to go through this kind of pain. She is an extremely self-confident girl and loves to look at herself in the mirror, and I doubt she'd understand, at this stage, that there is anything about her that needs to be "fixed". So it seems especially cruel, as gloriously happy and content as she is at this moment, to put her through another couple of weeks of discomfort.
For me, it's hard each time to say goodbye to the face I've come to love so intensely. I know she will still be the same girl with the same brilliant, drop-dead smile, and that I will quickly grow accustomed to the "new face", but each time I mourn a little for the way she looked before.
Sigh.
At any rate, wish us an easy journey this time around, and we'll see you when we're out of the hospital and back online.

ps - Thanks, Anne, for the guitar, which she LOVES! Here, she is playing it with both hands, flat on her lap like a dobro. I have a whole series of these pictures which I will post when I have time...in the course of this jam session, she played between her legs, over her head, and even held the guitar by the neck and played the strings with her toes. No, I'm not exaggerating. You'll be amazed. She is quite the creative musician.

Spoiled rotten

No, I'm not talking about QQ - though that descriptor would not be - ahem - entirely inappropriate in describing her. But that's fodder for another post. I'm talking about ME!
As some of you know, I had a birthday recently, and between Valentine's day and my birthday my husband has spoiled me beyond all description. I can't actually list all the things he has bestowed upon me for the past few weeks, because my brain can't contain them all at once.
Obviously, he had to forewarn me about the biggest gift, because it was our week-long trip to San Francisco. That gift alone floored me and left me speechless at his generosity and careful planning. But there was more...so much more that I ended up feeling not only ridiculously spoiled, but beholden and feeling shame-faced at the pitifulness of my recent holiday and birthday gifts to him.
The following are just a few of the things he saw fit to spoil me with over the past couple of weeks. Above, a pair of gorgeous beaded mules that I coveted in a store window in San Francisco's amazing Chinatown (more on that beautiful evening in another post). Hard to believe they had anything in a size 11 in an Asian boutique...but they had at least one pair, and it just happened to be the most perfect color.
A Buddhist 'eternal knot' necklace from a San Francisco museum shop. He picked out this one himself, and I treasure it dearly.
My fill of Japanese design magazines from the Japantown bookstore. I am a design mag addict, but here in Denver the Japanese ones are not to be found.
A book of Rumi's poetry from the museum.
A trip to the Asian Art Museum in SF, where we also had one of the best lunches I've ever had the pleasure of eating - yaki udon, with fresh handmade noodles, mushrooms and veggies. The thought of it still makes my mouth water with desire.
And a hat made from vintage Brazilian tarpaulins, from a Denver green living store.
The gorgeous bracelet on my wrist, btw, was a birthday gift from my wonderful mother, who is at the moment on a small boat exploring the fjords of southern Chile.
Of course, the greatest gift - and the one that had me quite literally skipping down the hill to the lake on my run tonight (much to QQ's delight) is the amazing family and the wonderful life that I have been blessed with. I truly have lead a charmed life, and the charms keep on coming.
I am profoundly, unspeakably grateful for all of it.
I love you, M.