Our Angel Ava

Every year, the month of January, will always be bittersweet. With Ella's birthday followed by the anniversary of our finalization hearing and concluding with Ava's birthday. An emotional roller coaster to say the least. Amazingly enough, I whole-heartedly believe that this was a part of God's plan. Celebrating Elaina's finalization hearing as a family brings tears of joy into an otherwise painful month. It's not an accident that "Got Me Day" falls exactly in the middle of each of our girls' birthdays. God is good.

Two years ago today, our dear, sweet Ava was born. Our beautiful Ava Rose. This is Ava's story:

When I became pregnant with our second child, Eric and I wanted so much to be happy, but too much reality forced us to remain cautiously reserved. Since Ella's birth, many tests and many doctor's later, it was discovered that I have a blood disorder known as Anti-phospholipid syndrome. Notice that I didn't say that it is a "rare" blood disorder, because it's not. Many women actually possess this blood clotting disorder, yet, it is hardly tested for in pregnant women. Unfortunately, the result to the fetus, if gone undiagnosed, can often be fatal. Make no mistake, the only time that this will likely cause a problem is during pregnancy. Probably a good thing to know, don't you think?

From the very beginning of my pregnancy, I was immediately classified as high risk. In my 6th week, I began giving myself twice-daily injections into my stomach to thin my blood in hopes of staying pregnant. In the following months, Eric and I still tried to refrain from getting excited (which having a baby meant the world to us), I saw the doctor more than I saw my own house, and with my small belly, we hardly shared the news to even our close friends or people we worked with.

Only a few months into my pregnancy, I began going in for weekly ultrasounds. I'll never forget the day that we learned that we were having a girl. A GIRL!!! Everything I had always wanted- I was slipping and allowing myself to fall in love with everything pink and finding myself dreaming about the joys of finally having a daughter. We were so in love. Very soon after, one weekly ultrasound the doctor presented us with some alarming news. It seemed as though our baby's head measurements were growing much faster than that of the rest of her body. An amnio-centisis was done and the diagnosis of Dandy Walker Syndrome was confirmed. (From now on, that will just be DWS - I never, ever want to say or hear that term used ever again.) A basic explanation for DWS is that a valve in the back of our baby's head had been closed, not allowing the exchange of fluid to pass through her little body and collect in her brain. We didn't want to believe that what the doctor was telling us was reality. From that point on, we reluctantly did research to learn that there were different degrees of DWS and hoped and prayed that our baby would end up on the slight end of the spectrum. Only the doctors' predictions were saying otherwise. A condition that presents in only one out of 30,000 births and our baby was the one. We were more than heartbroken and full of despair.

We suffered and pretended our way through Christmas and faked happiness to everyone around us until the day that we had to tell each set of our parents. We waited until after the holidays to tell them as to not ruin their joy of this much anticipated grandchild. These were the days I never want to relive. So many times, I found myself just laying around, crying in desperation and felt that all my dreams of having a little girl would never come true. I often asked, how in the world could our baby have this? Why is this happening to us- to our baby? What if I can't love her like I want to? Eric held me and cried with me and told me that even if things didn't turn out like we wanted, the day would come and I would ask myself how I ever lived without her.

On January 26, 2005, the devil known as pre-eclampsia struck again and an emergency c-section brought Ava Rose into the world at only 33 weeks. My pregnancy had the makings of a double-edged sword. Remaining pregnant with Ava was allowing more fluid to accumulate and compress her brain and delivery too soon would only compromise her already fragile health with severe risks of prematurity. Ava was sent immediately to the NICU where a very specialized team of doctors awaited.

Again, the grandparents had rushed into town to be with the 3 of us and split their time with Ava in the NICU and myself. The day following her birth, Ava was transported to Akron Children's Hospital which offered much more specialized care, particularly neurological. It was a few days before I was released and Eric and I began our new lives with our critical baby girl and what came to be, a whole new family of doctors and nurses. From the beginning, Ava's condition was of grave concern. The doctor's didn't hesitate to make clear to us the harsh reality of their expectations. Eric and I stood firm that Ava was the child that God created for us and it wasn't up to us to decide whether she lived or not. We wouldn't be done fighting for her life until God said it was time.

I won't begin to try and recount the number of procedures and surgeries and tests and treatments that Ava endured in the months that followed. There were so many times that I battled a few headstrong doctors and nurses, reminding them that this wasn't the DWS baby- this was our baby and she was our world. We hardly had good news any day of the week. The good was only good in comparison. Several nurses took a special interest in caring for Ava and requested to be her primary care nurses. Since that time, we developed a very special relationship with Becky, Mariann and Lisa whom we will never forget. They loved Ava and made it clearly known that they were on our side. These are the women who made our days in the NICU bearable. They lightened our load and were always willing to weigh in and help to interpret Ava's day to day condition. For this, each of them will always hold a very special place in our hearts.

For 3 1/2 months, Eric and I (along with several visits from the grandparents and aunts and uncles and cousins) spent our days holding our precious baby girl. Ava loved to be held, chest-to-chest and rocked. She loved hearing girl-talk and her lullaby CD's and was so incredibly sweet. It might be hard to believe, but for a critical, premature infant- Ava proved to have a lot of personality. In such a short time, she knew her mommy and daddy and responded to our tender care. She was, in fact, amazing.

Well into her third month at the hospital, it was established that her stay there was no longer medically necessary. We were saturated with information on her special care, special needs, special equipment, and emergency protocol in a very short period of time. Ava was able to come home. I can't say that this was the most exciting point for us, although it sounds like it should have been. The best part of having Ava home was that I was finally able to hold her, laying in bed, with my arms wrapped around her, peacefully. There were no interruptions from doctors, nurses, other families parading through, no monitors going off and no ringing phones. Just peace and my sweet daughter, side by side. That will always be my most precious memory of Ava being home. The next day, a visiting nurse came to our home to get to know Ava. We expressed some of our concerns and she told us she would return the following day. With her next visit, Ava's condition was of great concern. A long story short, she was transported back into the NICU at Children's Hospital. It seems as though her left lung had collapsed and her oxygen requirement was soaring by the hour. Again, she was barely stable and we felt the inevitable drawing near.

On a Saturday afternoon, the day before mother's day, my parents had come to be at our side. The doctors made it clear that once her oxygen requirement maxed out, we were out of alternatives. In a flood of tears and broken hearts, we turned off the monitors and held our precious angel and gave her all of the love we had left in our hearts. God had said it was time. Her oxygen requirement had maxed out and we held her for the first time, without any machinery. No tubes, no cords, just our Ava. Our dear, sweet Ava became an angel. Ava, whom we will forever love. And she has always known it.