King Tom's Kingdom

It’s almost been a month since Hope’s surgery and things are pretty much back to normal.

I say pretty much because they’re as back to normal as things can get for a little girl who’s learning new things every day.

We had the first post-surgery checkup last week and everyone is happy with how she’s recovering.  While the arm restraints are gone, the doctor does want her to keep in the nasal stents for another few weeks to strengthen her new nose. Hope is happy to be able to put her fingers (and other things) in her mouth again, and has learned not to hit herself in the nose.  However, she still doesn’t like it when The Civee or I have to clean her nose.

As time passes, we notice Hope becoming more of her own person.  Earlier today, we tried feeding her some regular food for the first time.  She’s been curious about what The Civee and I have been eating, so we figured it was time for her to chow down on her own.  We gave her some rice cereal (no, not Rice Krispies).  And even though more of it ended up on her bib than in her stomach, it was a very pleasant experience.

Yesterday was also a big day for me.  It was the first time I took Hope out on my own.  We had an oil change scheduled for our car, so I wanted to give The Civee some alone time.  Hope and I dropped off the car and walked over to a nearby farmer’s market.  Well, I walked.  Hope was in her stroller.  The only mishap happened before we even left- after dressing Hope, I discovered her shirt was backwards.  But we survived.

Hope seems to be having a lot of fun, and The Civee and I are having fun with her.  We even have a new video, this one is of Hope sharing a laugh with her mom:

It’s been a few days since Hope’s surgery and The Civee and I already can tell one thing about her new smile–it’s just as cute as her old smile.

Monday night going into Tuesday wasn’t as rough as we had feared.  The hospital let us feed her a little later than usual, which meant that Tuesday morning, pre-surgery wasn’t miserable for Hope or us.  In fact, in the pre-surgery room, she was very happy, not knowing what awaited her.  It was tough to give her to the nurse to take into surgery.  But as the nurse wheeled Hope into the surgery room, Hope rolled over onto her stomach and got up on her hands and knees, showing off her latest trick, and a round of laughter erupted from inside the surgery room- meaning either the doctors were sampling the laughing gas, or they found our daughter’s antics amusing.

The next few hours were anything but amusing.  Although the surgical waiting room at Childrens’ is pretty nice, Let’s Make a Deal and free Internet access (on IE 6, no less) wasn’t enough to make the few hours of Hope’s surgery go by any more quickly.  After what seemed like a day, but was more like two and a half hours, we met with the doctor, who told us he was pleased with how Hope’s surgery turned out.  Not only did he have to bring both sides of her lip together, he also had to separate her upper lip from her gum on both sides and attempt to straighten out her nose. All the taping that The Civee and I had done over the past few months helped, bringing the skin closer on its own.  Additionally, Hope had some excess tissue which made the surgery a lot easier for him (we were later told they might use her case at some sort of medical conference).  He also did a lot of extra work on her nose, helped by two nasal stents which he was able to use because he trusted The Civee and I with keeping them clean over the next few weeks.

After another hour or so, we finally got to see Hope, and despite the doctor’s good report, it was a little upsetting.  Hope was still under anesthesia, her eyes were closed, her face bloated and the sounds coming from her mouth told us that she was in pain.  She slowly woke up and by the end of the night, flashed a slight smile or two.  Until her post-surgery appointment sometime in September, she’ll be in arm restraints, which could be frustrating to a baby who wants to put everything she can grasp into her mouth.  The sensitivity of the nose and mouth also means that laying on her stomach is out, as we don’t want her rubbing her mouth or nose into the ground.

But since coming home Wednesday morning, Hope has been slowly getting back to normal.  Her face is still very sensitive, but each day, she has been smiling and talking more.  And she’s finally big enough to try something my mother’s been wanting to get for her grandchild for the last 32 years: a Johnny-Jump-Up.  Thanks the The Civee’s father, we were able to get the device mounted from one of our abnormally-wide doorways.  Even though Hope is still learning how to use it, we think she likes it:

After four months, the medically inevitable is days away for Hope: her first surgery is Tuesday morning.

This surgery (the first of three, we’ve been told) will repair her lip and nose, bringing the two sides of her lip together and straightening out her nose.  It’s mostly cosmetic, while the second surgery, to repair the palate (hopefully sometime this fall) is more functional.

The Civee and I are looking forward to getting this out of the way.  It’s a routine surgery and the doctor who will be performing it has done good work in the past.  But we’re not looking forward to the night before or the few days after the surgery.

We’ve been told we won’t be able to feed her after midnight the day before the surgery, which is scheduled for around 8:00.  I have asked the hospital if we could drop her off at 1 that morning.  They said no, probably because they don’t want to deal with a crying, hungry baby any more than The Civee and I do.  To put it mildly, Monday night will be rough.

After the surgery is also looking to be challenging.  We have no idea how she’ll react to all the work she’s had done.  We hope it doesn’t mess with her feeding.  She’s usually a very happy baby and we don’t want her temperament to change for a long time.

Our other concern is something that’s surprised both of us.  Obviously, we love our daughter and want her to be healthy.  But we also love her appearance.  How are we going to react to seeing our baby looking very different?  Of course we’ll still love and accept her (and this surgery, even though it’s cosmetic, will have a great impact on her quality of life), but she’s just going to be a little different.  We’re sad about the prospect of saying goodbye to how she looks now.  But she’ll still be our Hope.

Over the past few weeks, she’s grown a lot.  At her last hospital visit (three weeks ago), she was 13.5 pounds.  She’s getting better at grabbing objects and moving them to her mouth (her success rate is 50 percent…the rest of the times, she usually hits the object against her forehead or cheek). She’s making different kinds of noises when you talk with her.  And, in a move that’s going to have us childproofing the house pretty soon, she’s able to get on her hands and knees and inchworm her way around.  She doesn’t make it that far, but here’s a short clip of her in action: