I thought this would be pretty easy for me to write. It's actually a lot harder than I thought. Writing it down brings all the feelings flooding back.
I need to clarify why I am writing this. I am not writing this to get people to feel sorry for me or for people to think I am some fantastic woman. I am not. I am just a regular person who was given a hard situation and did the very best I could with what life handed me. I mostly am writing this so my children can have kind of a memoir of their baby sister and remember the joy and sweetness she brought to our lives. Anyway, on with the story.......
They took me into the operating room which was cold, sterile and bright. The perinatologist was there with his team along with a neonatologist and her team. Layne was stationed up by my head. I already had an epidural but they also gave me morphine and when I was sufficiently numb, they began.
The perinatologist and his assistant did not even hardly acknowledge my existence. They didn't talk to me or try to reassure me--nothing. They did however, laugh and joke with each other through the entire procedure. I was angry. I thought it was completely inappropriate and unprofessional.
After a few minutes, they pulled Eirion out and she didn't cry. The first words I heard were the neonatologist saying, "She's got a cleft lip." My heart sank. Then I thought, "O.k. at least that is something that I know can be fixed." But she still wasn't crying and I kept asking over and over, "Why isn't she crying?", getting more and more panicked each time. Layne finally came over and told me she was having trouble breathing on her own, so they were giving her oxygen. She was born on 3-4-2011 at 3:04 a.m. and weighed 3 lbs. 3 oz. Quite a bit smaller than the 4 lbs. which was predicted. I was exactly 33 weeks. I got a brief glimpse of her and they whisked her up to the NICU. Layne went with them. Then the doctors continued stapling up my incision. I had a cold and I suddenly felt like I couldn't breathe, so they gave me oxygen, and then because of the anesthesia I got nauseous and informed them I was going to throw up. I couldn't sit up because they were still stapling me, so I turned my head to the side and they suctioned. Gross.
I was wheeled to the recovery room and left completely alone to wonder and worry about my baby. After a while when the anesthesia started to wear off a little, I got really cold and started shaking. The nurse finally came back and checked on me and got me a couple of blankets.
After what seemed like forever but was actually about an hour and a half, Layne and the neonatologist returned. Eirion had been put on a ventilator which was helping her breathe. She told me that due to Eirion's physical characteristics she thought she had Trisomy 13. I knew that Trisomy 21 was Down Syndrome and I had heard of Trisomy 13, but I didn't know what it was. She said some of the markers that Eirion had included lowered ears(not ever really noticeable), a bilateral cleft lip and palate(which is the most severe and the most difficult to repair), rocker bottom feet, and an extra finger on her hand. She also told us that she would have severe mental disabilities and probably would not live very long. We were devastated.
We decided to name her Eirion. In Welsh it means beautiful, lovely, fair. We figured with all the challenges she was going to face she needed a beautiful name. Her middle name, Lorraine, is also my middle name and was my grandmother's name.
I actually do not remember a whole lot of what happened in the next few days. A lot of it is a blur. I remember certain things, but not in chronological order, so I'm sorry if what follows seems disjointed.
I had our laptop with me and I remember being in my hospital room looking up Trisomy 13 and crying. I remember a lot of tears, blessings and prayers.
I remember being wheeled up to the NICU the next morning to see my baby. I was still on an IV, because my blood pressure refused to go down so a nurse had to accompany me. Also, after just having a C-section I wasn't moving around very well yet. Not only was my blood pressure still really high, but my whole body had swelled up like a balloon. My hands were so swollen I couldn't close them and when I walked I looked like C-3PO from Star Wars because my legs were so big I just kind of teetered from side to side. In the first 2 weeks after having Eirion I dropped 40 lbs. As my blood pressure improved and went down, the swelling went down also.
I was met up in the NICU by the neonatologist. He told me that Eirion having Trisomy 13 was not my fault. He said that nothing I did caused it and nothing I did could have prevented it. For whatever reason it is just something that happens. He also said it had nothing to do with my age and it was not genetic because I had 7 other kids that were born completely healthy. The geneticist told me the same thing. That was reassuring, because I had wondered if I had done something that had caused it. She(the geneticist) and another neonatologist also told me that I was still young enough to have a couple more children and if I did, chances were that they would be just fine. We had already decided, though, that Eirion would be our last.
Eirion was hooked up to a ventilator and had probes on her to measure her heart rate, oxygen saturation and something else, which I have now forgotten. She was so tiny and fragile. I met her nurse, Kristi, who was taking care of her that day and again, what a blessing! We love Kristi and she will always have a special place in our hearts because she loved Eirion and took such good care of her. She was there at her blessing and funeral. The first thing Kristi said was, "There's such a sweetness about her." We met her primary neonatologist. He again told us what he thought her diagnosis was and that her life expectancy was not long. He was very concerned about me getting to hold her because he thought she would pass away soon. I was a little nervous at first and thought, "If I get too attached, it will be just that much harder when she passes away." But as she was handed to me and I held her sweet little body and looked at her sweet little face, I fell in love. Even though she was not the perfect child I had expected, she was my baby, and my protective mother's instinct kicked in.
The next few days were a roller coaster of emotions. She did start breathing on her own and 2 hours before the doctor was going to take her off the ventilator, she decided she had had enough and pulled it out herself, and breathed on her own from that point on. That's when we knew we had a little fighter.
When you find out that life is not what you expected, you go through a grieving process. We did this. You grieve for the life you thought you were going to have. I did think, "why me?" more than once. And you realize that your life will never be the same.
I remember thinking that this was one of Heavenly Father's special spirits and he trusted us enough to send her to me and our family. I also remember thinking "Heavenly Father thinks I can handle this, so I guess I can."
During the time I was in the hospital, I had a lot of visitors. You will never know how thankful I was for that and for all the love, kindness, meals, childcare, and prayers offered in our behalf. It was wonderful knowing so many people cared.
Again, it is difficult to remember everything, so I'm sorry if it's confusing. That's all for now. I'll write more tomorrow.
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