So, after five months of Pre-surgical molding, we were ready for a big hurdle - our first surgery. This surgery was to be a primary repair of her nose, lip, and hopefully, gumline. See, in all our efforts over those previous months, we'd gotten her gumline to the point where it was actually touching. 18mm, all closed up, without a knife ever touching her. By fusing her gumline during this first surgery, she'd have a chance at not needing a bone graft when she was older.
It's actually really hard for me to even look at these photos without tearing up.... this was the hardest day of my life so far. This was a photo I took while we were waiting to go in. I had just finished going to the mats with the anesthesiologist, as he was trying to convince me that I didn't need to bring her back to the operating room myself....that she was too little to understand, or to be scared by it. He didn't seem to understand that I had rolled up my sleeves and been an active part of her care from day one, and that I'd had to do, and had seen, much harder things than my child falling asleep like this.
Needless to say, I was brought a "bunny suit" (which, for the record, is about as attractive as it sounds), and watched my husband kiss our beautiful baby and hand her off to me. I held it together really well.... she fell asleep..... I gave her a quick kiss..... said a prayer..... left the operating room, and promptly lost it. There was so much involved emotionally.... I mean, not only was I handing my tiny 10 pound five month old over to have surgery, but she was going to come back different. She wasn't going to look the same. My beautiful baby, who was perfect and beautiful just the way she was, was going to have a different face when I saw her next. See, all those months of worrying how I'd feel when she was born? It was all wasted time... my heart swelled with love from the moment I saw her. Her eyes captured me, and never let go. I loved her extra wide smile, kissing her sweet little lips, and seeing her smile. While I'd still have all these things post-op, they would be different. We'd have a second first smile, first kisses, etc...
So, my husband and I went to the waiting room to, well, wait. It was supposed to be 2 - 3 hours. Once we passed the three hour mark, I started to worry. At three and a half hours, I went and talked to the lady at the front desk, who said she couldn't find my daughter in the system, and that she'll find out what's going on and get right back to me.
Now, you can imagine, the news of this computer glitch didn't sit very well with me. I was already worried, and by this point, I felt like my intestines were stuck in my sinuses. I sat down, and I waited. Half an hour passed..... nothing. I went back up to the lady at the desk, who told me that, "She still didn't know where my daughter was, but that someone would be out shortly to explain. That she may have been moved to a room, and she's not sure why I wasn't told." By this point, it had been nearly five hours since surgery began, and I was an emotional basket case. This was just a bit more than my little brain was able to handle at that moment.
As my voice began to get louder, all of a sudden our Rockstar surgeon walked through the doors. He immediately gave me a hug (which, after finding out what happened, I think he may have needed just as much as I did!)
Surgery went great.....she looks awesome. BUT.....after surgery, when they went to exhubate her, she stopped breathing. Everything stopped, and they had to preform CPR to keep her alive, and reintubate her. They waited a while, thinking she may have been too sleepy still. They tried to exhubate her again, and the same thing happened (only they were ready for it this time). The best they could figure was she was having a bad reaction to the morphine, so she would have to be on a ventilator, and we all got a one way ticket to the Pediatric ICU.
Let me say right here and now, that the Ronald McDonald house is a GODSEND..... I really don't know what we would have done without it. It gave us a home base. My husband could bring food back and forth for me, it gave him a place to sleep.... and under that same roof was a whole slew of families going through the same thing we were. Having that common ground of children undergoing care builds a stronger bond than most other things. While the "medical kiddo" club is not one I would have sought out a membership in, it's hard to imagine my life without all the wonderful people we've met thus far on our journey.
Back to the hospital...
So, I finally got to go see my baby. Boy, was that hard. It's hard to hand over a laughing, smiling, little ball of life and get back a fragile, swollen little thing being kept alive by machines, arms pinned down to a sheet.
The following week was so hard. Living in the PICU, with my child on a ventilator. My time there changed me forever. See, the PICU is a very strange place. In the same hallway, you witness God's miracles, and utter devastation. Children being healed, and Mothers and Fathers having to watch their children slip away into God's arms. God bless the nurses who spend each day, everyday there, caring for our very sick babies. I never left the PICU the whole time S was in there. I didn't even shower until she was out of the woods.
Miss S, who always likes to keep us on her toes, decided she was done with the ventilator, and exhubated herself. Red buttons were pushed, the room filled with people as fast as you can ever imagine, all trying to get S breathing again. She didn't want to, and it was very scary.... I just stood in the background and prayed. Finally, they got her stats up high enough with oxygen. The problem was that, because of the nature of her repair, she couldn't have an oxygen mask. I held a tube blowing oxygen in her face, for two days... it was a very long two days.
During my time in the PICU, I learned to look for strawberries. I saw God work miracles while I was there...big miracles on children, and more subtle ones on my heart and perspective. Miracles like smiles and laughter during times where there was really nothing to smile and laugh about at first glance. The power of love. Strength. Trust. Living for Today, and trusting that God's plan will be infinitely better than my own, even if the terrain looks rocky at first glance.
She got stronger and stronger.....
We got to go home..... recoup..... celebrate life....
But I will never forget the things I learned from this amazing little girl. I am SO BLESSED and SO HUMBLED to be her Mommy!