One year has passed since Adalynne's brain surgery. I remember being so nervous I couldn't breathe, just kept pacing the cafeteria of the hospital waiting on a call to say things were okay. Once she was finally out of surgery, I was able to go back and see her. My heart was beating so fast while my brain ran 500 miles a minute with questions and hopes of things getting better. As I approached my little babe, I noticed she was covered in iodine, with tubes and IVs coming from all over her frail vessel. Her head was sunken in from the water loss and lack of brain matter. I lost it, big huge sobs escaped my chest and voice box. I apologized to the nurse for my abrupt sobbing. I had held it together for long enough. She made it through and I was so scared she wouldn't. Her body was so limp and sunken but, her face, oh that sweet face looked so peaceful and rested. I settled down took some huge breaths and talked to my girl.
After recovery they moved her into the PICU of Baptist hospital. My famuly and i, along with Adalynne's father sat in the waiting room and went over every word her doctor told me with our family, looked at the pictures of her empty skull and felt internally shattered. Nothing would ever help my baby. Even the surgery was for temporary relief and only to make her life more comfortable. It also, confirmed the severity of her case. While waiting in the PICU I was greeted by her nurse who informed me that Adalynne had just had a 5 minute seizure followed by breathing complications so, they put in a nose trumpet in to open her airways. We learned over the course of our hospital visit that Adalynne had been having lots seizures her whole life. Hers just came in a different form than most, no flailing or anything of that sort just staring off on one side. This meant that she had been having at least 5 to 10 seizures a day, news that was very devastating to me and my family. I felt like a failure, like I had let her down. We had went two months of not knowing and I felt that I could have done something to help her..
The first time I picked her up after her surgery was one of the craziest moments of my life. I carefully scooped her into my warm embrace, while weaving around the IV's and monitoring tubes then, finally settling into a rocking chair covered in warm blankets because we could not keep her body temperature at an appropriate level. I could feel the water in her head slosh from side to side. This movement turned my stomach into something similar too two octopi fighting. She would just moan these tiny little moans of pain during movement crushed every part of my soul. But once she settled into her mommy sweet bliss for us two. I sang All Of Me to her like, I always did. That moment in time stood still for me. I can sit here, close my eyes and feel that moment again. Moments like this, are the avacado to my life.
Adalynne though, had utterly no desire to eat. I tried and, I tried but she just didn't care for it. Of course, me being me refused to let her leave the hospital until she was eating again. Once she started to the surgery had set us all the way back to the beginning. She had to relearn how to eat just like we did in the beginning of her life when she can suck. We went from a spoon to a syringe and then finally back to a bottle. It took twice as long for her to learn this time, and most of it just came back up unexpectedly at the most inopportune times.
Over this visit I met some outstanding people. It was one of those moments I truly realized the impact of our story and the amount of love that we had behind us. For those that have kept up with my blogs or, the ones that are new to my story that have gone back and read, you all might remember that I asked my readers to wear blue the day of her surgery. Adalynne diagnosis was hydranencephaly but, she also had hydrocephalus as well. Her hydranencephaly was the reason she had to have the surgery. September is a month dedicated to hydrocephalus awareness. Hydrocephalus causes excess water on the brain. To bring awareness to this situation that many of our citizens are faced with and to have a little bit of support during my tough day my friends and family were to wear blue for us. To all of you that sent me pictures and posted raising awareness and sending love, I have to say thank you. They were the reason I got through that day. When I started to feel like I was breaking it was so wonderful to be able to see we were making a difference and bringing people together for love. Thank you all so much for the support and continued love.
It's been one hell of a year since that day. Looking back this was a huge moment for us, another game changer. I'm thankful for the lesson I learned through that time. My strength reached a level I didn't know possible. You all had a huge part to play, still do every day. Thanks for reading my heart on pages. I love you all beautiful souls. Give a loved one a extra hug, just because. Much love.
Until next time.
Heather
P.S.
I know of others who sent me pictures I just can't get them currently. My laptop crashed with all our pictures... thankful for Facebook today.
