Aw man, I was doing so well with the weekly posts there for awhile. Then Avery started her first 3 week summer break and it all fell apart! I have just barely kept my eyes open long enough to finish my card work each evening. I'm pretty sure I'm asleep before my head even hits the pillow. And just because it always happens like this, the girls are waking up earlier now than during school mornings. Ugh.
So last week I was asked by a fellow Tuberous Sclerosis mom to share Avery's story on her blog for TS Awareness Month, which was in May. I took what I had already written on my Sugar Bee Designs about Avery's journey and added a few more details. I'm sharing it below. In case you have ever wondered how it all started, here it is.
My husband and I learned that we were pregnant in the late spring of 2007. Married just two years, we were a bit surprised, but honestly thrilled beyond words. We had a ton of fun preparing for our new addition, even despite the fact that I was so horribly nauseated for the first five months that I lost 12 pounds. Her development, however, was always right on track, and every test and check-up went well. Just a month before her due date, we decided it would be fun to get the new 3-D ultrasound photos that we kept seeing at the doctor's office. We ended up trying three different times. Every time we went, the baby had her arms up around her face, completely covering every feature. The first time was kind of cute. The second time was a little frustrating. The third time I asked the technician, "isn't it a little unusual to have her arms up every time?"
"Yes," she said flat out, "I've never experienced this before." I remember my heart went into my throat. Could something be wrong? The doctor dismissed my concern later, telling me not to worry. I tried not to.
The next thing I knew my delivery date was around the corner but the baby was in breach position, so a C-section was scheduled. In late January of 2008, we were blessed with our beautiful daughter Avery. The surgical delivery went well, but within an hour of her birth I was surrounded by a number of doctors with very serious faces.
They were concerned because it appeared that our precious newborn was having small but frequent seizures while under observation in the nursery. They bombarded me with a million questions at once. "Was she seizing in utero?" is the one that still stands out. WHAT?? What does that feel like? This was my first pregnancy. She kicked a lot, does that count? Were there other signs I should have noticed? I was stunned. Immediately, the doctors sent her away to a bigger hospital with a higher level N.I.C.U. I remember my delivery doctor turned to me and said, "I'm sorry," before walking out the door, not to be seen again.
My husband and I were absolutely shocked and terrified. There was no holding, cuddling or bonding. I tried to recover quickly from surgery, all the while imagining my baby girl across town under the care of who knows who, doing who knows what. Complete and utter torture. This was when I started thinking about the genetic condition that runs in my husband's family. We were told previously by family members that it was basically nothing to worry about....obviously, that was not the case.
I broke out of the hospital early and rushed to the N.I.C.U. I couldn't believe how tiny she was, hooked up to so many tubes.... and all of the nurses knew her name. My Avery. They already knew so much about her. They had already spent so much more time with her than I had. It felt so strange. At first glance, she looked pretty and pink, sleeping peacefully like a typical newborn. And then I saw it. All of the sudden, she puckered her little lips, turned bright red, and her right arm extended straight out. It faded quickly, but there was no mistaking that she was seizing. Nothing could ever have prepared us for what happened next.
We were shown into a large meeting room across the hall. A doctor sat across from us, and five or six med students and residents sat next to her. I'll never understood why they were invited...why they needed to sit and watch this intrinsically personal experience unfold. They never spoke, just watched. The doctor slowly explained to us that Avery had been born with a rare genetic condition called Tuberous Sclerosis. Benign tumors grew willy nilly in her brain and heart. She had many of these growths in the left side of her brain, which were causing massive abnormalities and resulting in seizures. She also had a few in her heart, but they were not affecting her breathing, and we were told they would eventually disappear. Small victory. The ones in her brain, unfortunately, would not just go away.
So that's when Avery's brain surgeon appeared. Yep, my daughter has a brain surgeon. Surreal. And that's when we found out that our newborn needed a radical brain surgery that was meant to end her seizures, or she would not survive: a hemispherectomy. The two sides of the brain would be disconnected from each other, and large portions of "bad brain" would be removed from the left side. Before we could even begin to digest this information, the surgeon went on to explain that he had never performed this surgery on a baby less than nine months old, and most of his colleagues had told him he was crazy. But that it was her only chance.
This is the part where I have to pause, and breathe. Because more than two years after the fact, I can still feel the residual effects of this man's words pulsating through my mind and body. I can still close my eyes and remember the breath stealing sobs I cried as I said goodbye to my week old daughter and heartbrokenly handed her to the nurse that would take her to the operating room. We waited hours and hours, hardly breathing, wondering if we made the right decision. It was, and Avery did beautifully. Her strength amazed us. It still does! She was in and out of brain surgery three times in her first month of life. She came home after one month and five days in the hospital, eating on her own, cooing and wiggling. The seizures had completely stopped. We had renewed hope, renewed faith. Her future appeared so much brighter.
We were told by the doctors that there was really no way to predict her future as far as cognitive and physical ability; but the upside was that the earlier the surgery, the better-- i.e. giving the "normal" side of her brain time to take over tasks that the opposite side can't handle anymore...and we couldn't have done it any earlier!
Avery actually needed two more brain surgeries, at three months of age and at five months, before the seizures stopped returning. She continued taking Vigabatrin (Sabril) for the next four years as a back-up, in case they did try to come back. It was the only drug that had ever slowed down her seizures before.
For four years, Avery thoroughly enjoyed a total break from seizures, as did her parents. We were busy attending to her other many needs, like the fact that the surgery had resulted in the left side of her body being extremely weakened (hemiparesis). No one ever mentioned this side effect before surgery. It was then, and is now, our biggest challenge among many. When she was still not sitting up by herself at 18 months and after tons of therapy, we knew we needed a lot more help. We were lucky enough to find an amazing, private special needs preschool that had experience with children just like Avery. They taught her to sit and scoot. They taught her sign language, how to drink with a straw, and how to use a fork and spoon. And they continue to teach her now. I don't know what we'd do without these amazing teachers that love my daughter for exactly who she is, and not what she lacks.
Sadly, this past year the seizures returned. We were devastated of course, but not surprised. We knew it was a miracle that they stopped for as long as they did. They are under control again now with new meds: Onfi and Vimpat. She seems a little more tired now, but overall a happier disposition.
Walking is still our biggest goal. The left side of her body just doesn't want to cooperate! Although still extremely developmentally delayed, her cognitive skills continue improving. No words yet, but lots of sounds. We have three PT's, two OT's and two SP sessions every single week, on top of her school "work." Avery works harder than any kid I know, and she does it with a smile. She has taught us endless lessons about love, grace, and the simple joys in life. Almost 2 years ago, we were blessed with another sweet girl! A healthy, TS free little sister, who dotes on her older sister.
As many special needs moms have said before me, it's impossible to focus on the future right now. In order to get there, we have to focus on today. Today she is healthy, happy and working as hard as she possibly can to reach her potential. What that is, no one knows; but we will move heaven and earth to get her there.
