We planned Ellie’s funeral before she was born.
We met with Arkansas Regional Organ Recovery Agency (ARORA) about our options. They looked at test results and talked with doctors to determine which organs and parts could be used by someone else’s baby. She was to be cremated. There would be no ceremony. We would figure out a way to honor her later.
It all felt like too much to think about – whether or not she would make it to term, what her birth would be like, if she would be strong enough to survive – but we didn’t want to wait until the last minute to have a plan. If she died, Ben and I wanted to be on the same page so that we could move forward quickly, without other’s emotions and opinions clouding our plans.
We were so worried about her dying that we didn’t set up her nursery. We didn’t build a registry or purchase her a bed. I never bought any pink day gowns or sleepers. I tried, but couldn’t imagine having to clean it all out if she never came home.
When she survived birth, we were relieved. We had a picture to share and a baby to be excited over. People who had more faith than us had gifted us pink, personalized things that she could have in her hospital room.
When she went in at six days old for her first surgery, we were a little oblivious. We hadn’t spent any time with her alone. She had never been home or met her brother. Neither of us had spent the night with her. We had never seen her face without an oxygen cannula on her nose.
When we saw her for the first time afterwards, it was a lot to take in and impossible to understand. All of the blood and wires and beeps and machines were so scary and my instinct to get away from the room was very strong. I felt like I shouldn’t be there. She needed the doctors and nurses more than she needed me.
Ben felt so relieved that he drove to Target and purchased one of nearly every hair bow in the store that day.
She would get better and then worse and then better again. She would have good days and then bad nights. I remember sitting straight up in bed because of phone calls in the middle of the night from doctors with updates when she was in ICU. This is something I still do even when there is no phone call and she is asleep in the next room.
Eventually she came home, but we knew there would be more surgery and more hospital stays. We learned how to take care of her without the help of the nurses. I remember in the beginning thinking that there was no possible way we could live this way. With the withdrawals, medicine, vomiting, oxygen support and fear, at one time I wondered if this existence for her was worse than just letting her go.
When she got pneumonia in the spring that first year, Ben and I were walking in the hall just after she had been sedated and put on the ventilator. It had been a particularly horrifying 24 hours. “I’m really going to miss that girl if she doesn’t wake up this time,” Ben said to me, putting my fears into words.
She has Down syndrome, but that isn’t what keeps me up at night or on high alert. I am not afraid of the Down syndrome killing her. It’s the heart disease that scares me the most.
A cold for her is not the same as a cold for Jack. Getting upset and holding her breath because she is screaming mad affects her heart rate. Any hint of blue on her feet or fingertips sends me into a tailspin because it means that something is causing her O2 levels to drop. If she gets sick and vomits her medicine, her body begins to retain fluids, something that she cannot regulate on her own. She’s not ready to run and play, but when she is, I don’t know yet how you tell a child she can’t go as hard as her friends.
February is Heart Month, designed to raise awareness for all forms of heart disease and to underscore the need for quality care and research. Congenital heart defects are the world’s most common birth defects and they affect 1.35 million babies each year. Twenty five percent of those babies don’t make it to their first birthday.
I saw a meme this month that a fellow heart mom shared that said, “I understand you’re not a CHD parent, so spreading awareness isn’t a priority. But the day before my child’s diagnosis, I wasn’t a CHD parent either.”