Monday, June 14, 2010

Ella's Story - Part 1

On July 15th, 2008 we had our first ultrasound, which was the most amazing thing I had ever experienced at that point of my life. We were able to see her little feet and hands and all four chambers of her heart. Sadly, we had just switched insurance providers, which meant we also had to switch my OB, whom I had never met. Since the appointment was rushed, we didn't get to meet her the day of the ultrasound either. Even though we were excited about our new bambina and adventure ahead, I had a weird feeling as we were leaving. Maybe it was how eerily silent the technician was or how she wouldn’t answer any of my questions. When she handed us our printed picture I remember saying, "Her upper lip sticks out farther than her little nose."
The next day I was finally able to meet (via phone) my new OB, Dr. Kristine Bathke, when she called me at work. I could tell by the tone of her voice that something was wrong and she felt guilty that our first interaction would be over bad news. She went on to say that the ultrasound had detected a cleft lip but, she didn't think it was the palate. When I hung up, I didn’t really know what to do. I went to Google and began to search cleft lip, just hoping to find some promising information. I didn’t find it, so I called Joe.  Since that phone call, we have spent numerous hours researching in order to better prepare ourselves. Unfortunately, that process was not as easy as we had hoped.

We had a follow up doctor appointment on July 18th, where we had a 4D ultrasound with the paranatologist, so we could get a better look. I think it’s safe to say, that was the worst day of our lives. As I lay on the table, Joe held my hand and the tears strolled down my face. The doctors were so cold and insensitive. We were first time parents, so we were scared and nervous as it was. They acted as if this was an every day thing and just grazed over her face, when it was the first time we were meeting her. Once we were able to get a better view of her face and then were informed that she not only had the cleft lip but the palate as well.

We were then rushed out to meet with the genetics specialist, who tried to offer some explanations, what our options were and a ton of information. Due to the circumstances we had JUST went through, I could barely process all of the things she was saying. She asked if either of us had any history of birth defects in our family. Birth defects? What was she talking about? I was so upset I just wanted out of the room. I was trying to be strong and listen to the important stuff but all I wanted to do was scream and cry. She went on to say that a cleft lip and palate is often an indicator that something else could be wrong with the baby. Which meant tests, and LOTS of them. She asked if we were interested in conducting an amniocentesis in order to determine if there were other complications that we would need to be aware of. I knew there was a risk of miscarrying if we did it and I didn’t want to lose our baby.  I thought we would have time to think about it – go home, talk it out. Wrong. We were told if we were going to do the test we had to do it, right then, right there, no time.  We knew that almost nothing was going to stop us from having that baby, but we also knew that we needed to be as prepared as possible. So, we did it. We were rushed into a separate room where I lay on the bed, AGAIN – and a nurse stuck a needle the size of a ruler into my stomach and withdrew the fluid. At the time, it didn’t hurt that badly, maybe it was because I was overly worried about so many other things. Afterwards, it hurt – like a bitch. We elected to find out the sex during that appointment as well. For some reason, I felt it would be easier for the baby if it were a boy.  If there was a scar from surgery, he could grow a mustache. I was willing it to be a boy. Nonetheless, my magical powers did not work, and we found out we were having a girl. This was at least something we could focus on versus the birth defect.

So, we went home. I was supposed to go back to work, but couldn’t. We cried the entire way home. When we got there, we lay in bed and cried some more. Joe is always so positive and hopes for the best but, I just needed a day to be angry, to wonder why life isn’t fair – so he let me, and we cried.

We then waited, 14 days for the results. To our relief, everything came back normal and the cleft was an isolated incident. We met our surgeon, Dr. Shehadi to get a better idea of his plan. For the most part, the appointment was a waste of time. The hardest part of our entire journey has been the, “wait and see” mentality. I am not a wait and see person. I believe you need to be educated and prepared in order to make the end result the best possible outcome. I asked SO many questions and received zero answers.

Besides having more ultrasounds than a normal pregnancy and the weekly stress tests, the rest of our pregnancy was smooth sailing. We took all the necessary classes to make us responsible parents, childbirth education, CPR and even prenatal yoga. We focused on our little girl and prepared for her arrival. The more time that went on the less we remembered the hardships she would have to endure once she came into the world.

Read Part 2: Birth & Lip Surgery

1 comment:

  1. Thank you for sharing Ella's story. My husband was born in 1960 with a cleft lip and palate. Surgery then was nothing like it is now. We worried about the genetic possibility when we conceived our first baby, but felt who better to help a child through it than someone who already went through it himself (Daddy). I can remember our first ultrasound and his obvious relief that things "looked" normal with her but I had placenta previa which gave us different worries. I love the pictures of Ella and have thought she is beautiful from the first pictures JL showed me. God's blessings on all of you!!!