Emily

Emily was a much-wanted child, born 9 months and 4 days after our wedding day. Starting out as a problem child, she poked her fingers through the sack and sent me into an early labor that would unfortunately be less than successful. She was now to be born through a pitocin fueled delivery on Thursday, January 12, 1984. Well, that didn’t work so onto a C-section on Friday, January 13, 1984. Note the date please.

She was a beautiful, fat, pink little girl with traces of light brown hair. They rushed her off to the nursery, proud daddy, Alan, right behind, for cleanup and evaluation. She was, as we hoped, beautiful and healthy. Or so we thought then.

On Saturday afternoon, the pediatrician came in to give us some news. Now it should be noted this was not our chosen pediatrician. Ours was away and we were dealing with his partner. He informed us that Emily had not passed the meconium, which is the first sticky bowel movement babies have. By now, that should have occurred naturally, so they were going to have to intervene. They began all kinds of meds, enemas, anything that might help nature take its course. Nothing seemed to be working. On Sunday morning, that pediatrician came back into my room and announced “she needs to be transferred to the Yale New Haven NICU. We may have already waited too long.” What? Are you kidding me? What kind of a thing is that to say to a brand-new mother and father who have a baby in trouble?

To our astonishment and horror, he became more stupid and insensitive. “Do you have a car seat? Can you put her in the car and take her to New Haven?” I think our mouths dropped open. I cried. Alan became infuriated. I thought he might actually explode. “If she needs to go to the NICU, you put her in an ambulance and you get her there now.” The doctor left the room, I think he was actually hanging his head with a little bit of shame by that point. The incubator made her look so little. By her head was a bunny rabbit that had been given to her by her godparents, her first stuffed animal. The nurse told me to take the bunny and rub it against my chest. I looked at her quizzically. “The bunny will grab your smell and it may help soothe her.”

I practically rubbed my chest raw to get that bunny to take in all of me. Then our little girl was gone.

I think by this time, I was in shock. The drugs that followed to keep me calm were all a blur, but a godsend. They helped me relax a little, and since I was exhausted from major surgery, a troubled, welcome sleep followed.

Monday morning dawned. Emily was now 2 and a half days old and we were told she was going to have surgery to clear up the issue. We waited to hear the news later that afternoon. The doctor called and said she was doing just fine. She was on a respirator but that was temporary and she would heal nicely. Then he told us what no parent ever wants to hear. “This is called Meconium Ileus and most times, it is caused by Cystic Fibrosis. She should be sweat tested to confirm this diagnosis.” (That testing and diagnosis was later performed and confirmed.) Later that afternoon, we received a photo of our little girl. She no longer looked all pink and perfect. Now she looked like she was in trouble and I panicked. More drugs calmed me down and I slept.

When I awakened later, Alan told me she was doing just fine. He was going to go and visit her first thing Tuesday morning before he came to see me. I wanted so bad to see my little girl and hold her but I was still recovering from surgery and had not been released yet. He said he would bring me a kiss and a report on her when he came. Wednesday morning came and I was finally being released from the hospital. My mom had come to pick me up as Alan had to go into work that morning to handle something. He would be home in the afternoon to take me to the NICU to see Emily.

I was put into a wheelchair, as is procedure, to be released. My mom sat with me and we talked about being able to bring Emily home. We never once mentioned Cystic Fibrosis. After sitting for about a half hour, I asked “what is taking so long?” The nurse came into the room, red-faced, and apologized. “I am so sorry. We forgot you. Since we usually release babies and moms at the same time and you don’t have a baby here….” She stopped dead and blushed again. “I am so sorry. You are ready to go.”

And so our life with Emily and Cystic Fibrosis began.