We didnt know anything was wrong with our baby girl until our second ultrasound. She was measuring very large, and her left kidney was larger than the right and had liquid in it. I was told it was somewhat common and would more than likely correct itself by our next ultrasound. Our third ultrasound showed that the baby had grown rapidly and the kidney had not improved. The doctor said our baby would need an ultrasound done within 48 hours of birth and he called the hospital to set it up. My OB was concerned of the large weight, and me being so small, so she set up an induction date. Danielle was born on May 25th, 2014, on our 4th wedding anniversary!
Danielle came out quietly and the next thing I heard was my OB commenting on how strange the umbilical cord looked. She said she had never seen anything like it. My baby was purple and bruised and looked kind of strange..a thought passed through my mind that there was something wrong with her, something wasn't right. I immediately felt awful for even having thought it and told myself it was just from the fast labor. Danielle had very low blood sugar but the nurse said not to worry, it was common in newborns, and told me to breastfeed Danielle and it would improve. I started breastfeeding my little girl- or at least I thought I was. She was limp and flimsy and her jaw clicked. They checked her blood sugar again and said it had dropped and she would have to go to the NICU for monitoring. They let me hold her for another few minutes before a doctor ran in and screamed, "What is she still doing here? Get her to the NICU!" I knew something was terribly wrong. They whisked my baby away and told my husband to go with them so they can talk to him while I was taken to my recovery room.
An eternity passed before the doctor and my husband returned. My husband's face was covered in tears as he came silently into the room. By the look on their face I thought my baby had died. It was the scariest moment of my entire life. But, then the doctor said there were indicators of a rare syndrome. She started listing off all of these things that my baby had and she suspected either Beckwith Weidemann Syndrome or Downs Syndrome or both. We wouldn't know for 3 weeks!
After a couple hours they let me go to the NICU in a wheelchair to see her. I saw my poor baby with her face covered by a mask under bililights, with tubes coming from her umbilical site, and covered in wires. I couldnt even touch her. I stayed with her as long as I could. I tried desperately to feed her but she could not latch, her tongue was always in the way. We tried different bottles and syringes but nothing would get by her tongue. She had to have a NG-tube put in to feed her. I felt like I had failed as a mother.
The next day, I was discharged, without my baby girl. I had to go home to bathe, get clean clothes, and see my son before going back to Danielle. The drive home from the hospital was quiet and miserable. I felt so empty. I felt so scared...and useless even.
We would leave our house early in the morning and spent every day at the hospital while she was in the NICU. At the hospital, we got to know all of her nurses and doctors very well. I was hands on in every way they would let me be, determined to know how to care for her the way they could. Often times I would bring my overnight bag and sleep next to her bassinet in the chair so that I could be the one to attempt her late night feedings.
After 3 weeks her main doctor came into the room with an envelope and handed it to me. She said it was the results from genetics. Danielle had Beckwith Wiedemann Syndrome. I didn't know how to feel. I think mainly because I already knew. I just knew. I started to cry because I was suddenly taken over by my baby's future and what she would go through. It was scary because her future was confirmed with that letter. Her future would be full of doctors and pin-pricks and judgments and questions.
After we brought Danielle home from the NICU I still felt that way, and everything was already becoming what I had expected. But as time has passed, I have become more accustomed of it. I'm not so scared. I do worry. I worry a lot, but I'm not scared for my daughter, because I know she will get through this and anything that is thrown our way. She has shown how strong she is since the moment she was born. She is a fighter, and she is smart, and she is brave, and she makes me those things too!
Danielle is an amazing and beautiful little girl. Here is a timeline of her growing stronger every day...
3 MONTHS OLD