Thursday, February 4, 2010

Best Case Scenario Girl

Tonite just before Lilly drifted off to dreamland, she leaned over for one more kiss for her mommy, and one more kiss for "Troy" and "Gabriella" (Zac Efron and Vanessa Hudgens whose High School Musical characters are on Lilly's pillow). A few minutes later I tiptoed out of her room, thankful yet again for my little blessing.

Exactly a week ago, we had just survived Lilly's surgery. As I wrote last week, we were terrified. It was the single scariest moment of my life by far. I was giving my little child over to have her heart fixed, with all the potential risks weighing heavy on my heart.

In theory it wasn't a complicated surgery; however, involved in it were doctors, residents, and nurses all of whom could have an off moment and mess something up. The hole could have been bigger than anticipated which would have led to open heart surgery. Lilly could have had a complication to the anesthesia, especially going into the operation with a cold.

We don't usually think worst case scenarios, but you have to understand. Lilly is just so lucky. All the time. She is actually our best case scenario little girl, and we don't take that for granted. She was a great baby, easy going and slept through the night from an early age. And she's turned into a wonderful little girl, with a funny little sense of humor, sweet but cheeky, and always knows when to give her mommy and daddy the perfect kisses and hugs. With all the worrying I've done in her little life, nothing ever actually goes wrong. She's had amazing experiences at school. She makes friends and enjoys every activity. She loves singing, dancing, and playing on the playground. She's an excellent traveler, and an incredible little companion.

You'd have to know Lilly to really understand, but every since she was really little, it's like she touches people in a special way. And everything always kind of falls into place even better than we could imagine. I'm almost starting to anticipate that whenever I have a worry about anything, it will resolve because anything Lilly-related always turns out well.

So you see, with such good karma, we were terrified. What if we were taking all this good luck for granted? What if we truly thought it was an "easy" operation and then the worst case scenario happened? So we freaked each other out. And at the same time, we did not take a single moment in that week before the surgery for granted; I was so nervous in the back of my mind that it might be the last time that we danced to a certain movie, or the last time she ate macaroni and cheese. I know it's morbid but I was so worried and couldn't see straight out of fear that I might lose my girl.

Last Wednesday night, Lilly and I gathered in my bed and watched Hannah Montana and American Idol. Then I tucked her into bed and said good night. And then I closed the door and sobbed, praying so hard that God would take care of my girl the next day.

Sometime during the night, Lilly ended up in our bed (which is very untypical for us) and on Thursday morning the three of us woke up at 6 am. When we left the house, we told Lilly should could carry one thing of comfort - I thought for certain she'd pick one of her baby dolls. Not our girl - she picked up her new Camp Rock dvd (which we only got a few days before but she'd watched it 3 days in a row) and proudly held it the entire carride. When we got out of the car, I again offered her "Baby," her favorite Cabbage Patch. But no, she threw down "Baby" and clutched that Camp Rock dvd and that was her prized possession the whole morning. (Note: there was no dvd player, she just wanted the dvd itself.) We were at the hospital at 7, and checked in. Then there was a mix-up with insurance and Jon and I freaked out. If the hospital couldn't figure out our insurance, how did they expect us to trust them with our child?! Two days earlier, at a doctor's appointment, the nurse checking Lilly in also got confused and started doing a "well child" visit instead of a "sick" visit, which made me again worry about stupid medical mix-ups. It all just seemed like a bad omen. On top of that, Lilly had a cough and a runny and stuffy nose, which is a bad thing when you're going under anesthesia.

One of my fears too is regarding residents - while I love the resident I am married to, and I know they all need training, I am very much against their training on my daughter. And Lilly was at a teaching hospital, which made me even more worried. We mentioned to the doctor 10 times before surgery that if it was ok, we'd like as little resident involvement as possible. So finally they took us to a pre-op room and I kid you not, there were at one point about 10 people in our room - residents, fellows, nurses, interns. Which multiplied my fear, and also, made Lilly a little overwhelmed herself, as she was getting poked and prodded by a bunch of different people. She kept running out of the room.

There were about a dozen moments that morning where we almost just walked out of the hospital because we just thought there were too many bad signs on this particular morning. At one point, everyone was surrounding us and we were talking about whether or not we should actually do the surgery or postpone it due to Lilly's cold. Anesthesia said they felt comfortable although the risks were higher. And I looked around at the ten new best friends that I had to trust with my daughter's life. "Did everyone get a good night's sleep last night?" I asked. They all said yes, and I thought - let's do it. So Lilly sat on the potty one last time, we put on her hospital gown, and gave her a little medicine to relax her (of which she spit all of it out, of course - and I almost thought it was another sign but at this point I didn't want to turn back).
A friend whose child had surgery before told me the day before that even though Lilly doesn't understand that she's having surgery, that I should explain it to her in these terms: that everything that was going to happen was to help her body, and to not be afraid and know that they are all doing something that will help her little body. So the whole morning I reassured her of this, and that everything would be ok. Jon, Lilly and I held each other and said a prayer, and then Jon walked out of the room holding my little girl. I was sobbing and so scared, and I just kept praying for the next 10 minutes. A nurse discretely brought in kleenex. I was just about to tell myself to get it together, that it would be ok, and then Jon came in - crying himself. I can't remember him ever crying like this before - and we both lost it.
Jon adds: I held the consent form for surgery in my hand and felt
paralyzed. I was so scared for Lilly. In getting over her cold, the anesthesia
attending stated that upon going to sleep she could go into laryngospasm
requiring her to get additional medications or even put fluid into her lungs. On
the other hand, nothing could happen and if we waited she could have a new cold
the next time we tried to do the procedure. With all the courage I could muster,
I signed the consent form and proceded to carry my little girl in to the Cath
Lab. She layed down on the table and immediately looked to the ceiling at the
collage of dinosaurs. She started to point at them as the doctors gave her the
medications to allow her to drift off the sleep. No coughing, no problems,
peaceful. She was such a good little trooper. I kissed her on the cheek and
could help but cry as I left her to join Cathleen in the waiting room. Leaving
her in that room was probably one of the hardest things I have ever had to do
(including GaTech, Med School, and now residency). I gave Cathleen the biggest
hug when I got back to the waiting room and completed my shedding of tears. The
hug made me feel much better.
Another friend told me, whose child had a similar surgery, that her advice is to not be on the phone with family and friends, but instead to do something mindless - a puzzle, or reading a magazine. We at first didn't follow this advice, as Jon called a family member and they asked so many questions that it made it 100 times harder. He hung up and we decided to hold off on talking to family until it was over. So we went downstairs to get coffee and some breakfast, and ran into one of Jon's friends, and we sat for the next 45 minutes discussing neurosurgery, real estate and jobs. Which is actually usually terribly boring, but on this morning it was exactly what we needed. The surgery was scheduled to be an hour and a half long, and after an hour we went back to sit in the room and wait in case they needed us.

As we walked back in, we saw Lilly's cardiologist standing there. When I saw him I didn't know if it was good news or bad news, but thank goodness it was good news - the surgery was over, and Lilly did fine. I think I exhaled for the first time in an hour. I wanted to hug him, but I moreso wanted to see my girl! We still had to wait a few more minutes, but while we waited he showed us a picture of her heart, and the catheter, and the device being placed inside. I joked that the picture would be on facebook within an hour. Actually it took two hours, because the hospital cell phone reception is so bad. :)

10 minutes later, after I read a magazine and Jon was sleeping (of course) we were able to go into recovery to see our girl. The number one rule of this surgery is that for the 4 hours following, she needed to keep her body straight so that the catheter site at the top of her leg would close easily. Well, as she was rolled in right as we walked in, she was already trying to climb off the table. *Sigh, that's our girl.* Jon and I took turns holding her. He held her for 20 minutes while she slept; and then I held her for 20 minutes while she was wide awake. She is exactly like each of her parents when she is with us. :) She got bored with us after awhile, and we let her watch her dvd player. An hour later, it was time to go up to her room, and as she sat on the gurney and was wheeled up - without clothes, I might mention, because she didn't like the gown, she watched her dvd player (whom she lovingly calls "Lala" I might add) the entire way - she made quite the sight.

We spent the rest of the day taking it easy. By 1 pm she was eating a grilled cheese sandwich, and watched movies all day long. Jon and I felt so overwhelmingly thankful that once again, our "best case scenario" girl came out on top.

We thank everyone for their thoughts and prayers, because it meant so much to us.


My name is Sarah said...

So happy the surgery went well.

Robyn said...

I am so relieved and thankful that the result was "best case scenario." Your story had me in tears though...I hate that you all had to go through something so terrifying.

Cassi said...

Wow. What a journey. God has special plans for that little girl, and He is truly protecting her for whatever it is. Love and prayers to you all :)