I know and have to come to grips with the fact that my life, our lives, will never be the same. We have to shuffle around to doctors appointments and major surgeries are going to be almost routine. But none of these thoughts prepared me for this past week. Although it did go better than I had anticipated, Monday (the day of surgery), was probably the hardest day I've ever experienced.
We got up probably the earliest I've ever been up in years at 4am and made it out on the road by 5am. Once we got to the hospital, Mallory was admitted in day surgery and the whole process started. We got her ready for surgery, changed her clothes, drew blood and started her on her meds. Once we got her down to CT, it was time to say goodbye. For hours. I took a few pictures so that I could have something happy to look at while we waited.
Sitting in the family waiting area was brutal. There's a TV screen there on the wall where kids are assigned a number and through out the process of surgery you'll see their statuses change. Mallory's said "Procedure" the longest of anyone in there. I think I looked at it like every ten minutes for any change. I spent my hours watching old episodes of Grey's Anatomy on my iPad. Yes, I totally get that was probably not the smartest choice given the circumstances, but hey it was entertainment. Not that I was paying much attention to it. All I could think about was my baby girl on an operating table. My anxiety was at all time high for the entire time. I never felt like that before. I was so scared. Hoping and praying that there wouldn't be any complications and that she'd come out just fine.
We got two updates while we sat there. The first one came about two hours after they brought her down. Our surgeon's nurse said that it took them a little while to get IV's in and then a little while to get her positioned properly but that surgery was successfully underway. Two hours later she called again. She said that everything was going very well and that they'd be done in about an hour. I felt so much better. I had this lump in my throat when I went to share the news with Frank. I felt so relieved. I just wanted to cry. I did very well though... I didn't cry in front of anyone! (I'm a terribly UGLY cryer, so I try not to cry in public... EVER.) It made me watch that screen even more closely to wait for her surgery status to change.
Finally her status changed to "Recovery" and our surgeon came down and told us that everything went well and that they only diverted from the plan just a little bit. She was supposed to have four pins placed but they ended up only placing three. This was mostly due to the fragile state of parts of her skull. He let us see her for a minute and give her kisses and then they brought her up to ICU to recover.
For those wondering what the "pins" are, they are distractors that are attached to her skull with screws. Don't ask me for the physics behind how it all works (because I don't really know it.. lol) but basically what happens is that we turn those pins 3 times a day .3mm at a time. This will create a space in her skull and will slowly allow new bone to grow. The hope is that in about 3 weeks her skull will have expanded about an inch allowing for more brain growth space. Once that 3 weeks is up, she'll have the distractors removed and she shouldn't need another cranial surgery for at least a year. Then we move onto her hands.
Seeing her was such a relief. There she was. My baby girl. She was okay. Frank and I had expected a swollen face and bruised eyes, but we didn't see that at all. Yes, she was swollen, but nothing close to what we thought. It made my want to cry a little less (which was nice because again... I didn't want to UGLY cry in front of anyone).
The next couple days we did our best to keep her comfortable. She was angry about eating, she threw up and she looked at me with utter betrayal. She did give me a few sweet smiles here and there though and I saw that she was slowly becoming herself again. Including eating all of her wires!
I spent every day and night at the hospital with her except for Friday night. Frank relieved me on Friday so that I could rest up a bit. The only time I really left the room was to grab some of that wonderful grub from Cafe West. Okay, it wasn't too bad but they don't have a huge selection so it was a lot of eating the same things over and over. I think the next time they have beef fajitas I'll stay away from it though. Ugh. They were pretty tasty but the after smell, not so good!
Wednesday was the great unveiling. Her dressings came off and I saw her "antennae" for the first time as well as her incision from ear to ear. It's so distressing, but all I could think about was how our surgeon described what he was going to do. Peel her scalp back.... yaddi yaddi yadda.... put screws in her skull... yaddi yaddi yadda.... and so on. And here was this zig zag incision, like it was put back together like a puzzle piece. I can't seem to rid myself of that vision.
Shortly after the below picture of me holding her, she vomited all over me. In front of a room full of doctors and nurses. It was pretty awesome. I don't blame her though! All of that moving and shaking! Once her head was nice and open to some fresh air she seemed to feel better. No more of that heavy dressing to weigh her down!
Mallory's recovery at the hospital went very well. She was on the ventilator coming out surgery but was off on day two. Her oxygen levels, heart rate and lungs looked great. All that was left was to do her first pin turn which would come on Friday. Can I tell you just how scared I was for this? Friggin' terrified. I thought it was going to be hard and complicated. I thought it was going to cause her a lot of pain. Once her surgeon came in and walked me through the first one though, it didn't seem so bad. I picked up the tool that we're using to turn and turned the other two. It wasn't hard at all. She didn't seem too upset by it. And for only 21 days? I think I can handle that. Her surgeon wanted to monitor her pain level for the day and then said we should be able to take her home in the morning.
We had one minor hiccup that made us think that we weren't going to be able to come home on Saturday, but there ended up not being a problem. So homeward bound we were!!! It's so awesome having Mallory back in the house and you can tell that she's happy to be here too. She was smiley and talking up a storm again. Being her happy little self. I don't know how she does it. She truly inspires me. She had major surgery just five days ago and she's back to figuring out how to eat her toes and chewing on her pulse ox wire. I tell you, she is one tough chickie!
Now we spend our time trying to figure out how to keep her off the back of her head, yet comfortable. We came home with some foam head donuts that we've cut into half circles but we are still struggling to find a way to make that comfortable for her. It makes her sit with her neck forward and she gets pretty angry. It's still a work in progress though and we have a few more ideas to try!
Her first night home went well too. It was a little nerve wrecking. I was sure I was going to find her in the morning off of her donut, laying on her pins. Not the case at all! She was still nicely laying on the donut surrounded by all the support blankets I put around her. Not to mention, I think she got the first good nights sleep she's had since the night before her surgery. Her bed. Her room noises. No one bugging her in the middle of the night. Nice and peaceful.
Anyway, I think that covers pretty much everything. Here are a few more after pics of Mallory including her new peach fuzzy head, her first photo at home and my wonderful sleeping quarters for the week! I particularly love her car seat photo and her big, beautiful eyes peeping out!