We were so surprised in June 2010 to learn that we were pregnant with our little bug; I never dreamed I would have a child; be a mother. We had just gotten engaged and were planning our wedding when we realized I was pregnant. Her step brothers were excited to learn they would have a baby sibling; and even more excited once they learned it would be a sister.
Our lives turned upside down October 2010 when we were told there were several markers that indicated a chromosome disorder; most likely Trisomy 18. We searched the internet to find out what that meant, as we had no idea. We knew the pregnancy was “high risk” because of my age, but assumed high risk of possibly down syndrome and we knew we could handle it if that was the case. The information on the internet was devastating; incompatible with life…won’t survive. We agreed to have an amnio to confirm, just to be prepared; although I guess you are never really prepared for such news. They told us to not continue, but we could not do that; it was not even an option in our minds. We had already fallen in love with our baby girl; felt her kicks and heard her heartbeat.
So we continued with the pregnancy and regularly saw a pediatric cardiologist to monitor her heart as we knew she had a VSD and tetralogy of fallot. As her due date approached, I was anxious to meet her but terrified if she would survive. My obgyn scheduled for me to be induced two days before her due date, as he wanted a planned environment to ensure all the right people would be there when she arrived. I was scared to death… as long as she was in my womb and kicking, I knew she was safe; but would she be safe outside in our world? With each contraction, her heart rate dropped; so they stopped the process and my doctor told me, we got this far lets not lose her now; and we agreed to have a c-section as we feared the stress of labor would be too much for her. She arrived into our world a mere 4 lb 1 oz; she gave us a faint little cry then was whisked away to the NICU with her daddy. She stayed in the NICU for about 14 days on monitors, but was breathing and eating on her own. The NICU doctor kept telling us she was going to die; to take her home to die. We agreed it was time to take her home, but to take her home to live.
She was so tiny in her car seat, only 3 lb when we left the hospital. We were terrified as she would not be hooked to monitors at home, but we wanted her home with us. We took her home to LIVE! She had a full life and we wanted to show her everything; never wanted her out of our site. She ate and continued to gain weight. At two months, she went into congestive heart failure and we ended up back at the hospital in the PICU. We thought that was it, we were going to lose her. But our strong girl fought on and within a few days she was doing better and came home (on oxygen now, but home). Within weeks, she was off the oxygen and continued to gain weight.
Our wedding was in June and many felt we should postpone, but our doctors all agreed we needed to keep on living; not to postpone life. We took all necessary precautions for her and made sure we had all the emergency plans prepared, and we got married on the beach with our beautiful daughter with us. That was about the same time I think our pediatrician realized she was thriving and she started to talk the future about our daughter for the first time. She never went beyond a week or two before, now she was talking months into the future.
We started her on solid foods in August when she was 6 months old. Oh how she loved the carrots and sweet potato (she wasn’t much for the bananas though). She recognized people and oh was she a daddy’s girl. She knew the moment her daddy walked in the door; her face lit up and she smiled and turned to look for him; oh the bond she had with her daddy. She would smile and laugh and sing; oh that gummy smile of hers. If that isn’t living, I’m not sure what is. We had so many firsts with her…her first solid food, her 6 month birthday, her first Halloween, Thanksgiving, Christmas. We celebrated them all with her.
She was doing so well, gaining weight and getting stronger; we were seeing the doctors less often as she was doing well; they had started her on occupational and physical therapy; I even allowed myself to begin to plan for the future; and I started to plan for her first birthday party. But then on January 5, 2012 we took her to the doctor as she was sick; they sent us to the ER to be admitted, as her oxygen was extremely low and her heart was beating even faster than usual.
Our little fighter was back in the hospital; she was in the same room she was in when we were there in April. Sadly, this time she could no longer fight; it was too much for our little girl. She was going down hill quickly on the 6th of January; my mom, my sisters and my husband’s brother and sister came to see her to say their good byes. They left us alone as I held her in my arms and my husband held her hand; we told her it was OK; that we loved her and she was a strong fighter but had fought long enough; that we loved her. She looked at us and took her last breath; I saw the life leave her eyes, felt it leave her body. It was so hard, but I’m glad I had her in my arms.
I wanted her to know how much she was loved; how much she was wanted. We miss her every day; I keep wondering what she would look like; how big would she be now….would she be walking or talking? I cannot help but wonder. Our little lady bug, how we miss you.
Born: February 8, 2011
Angel Wings: January 6, 2012