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hospital windows

Hurry Up and Wait

This is part eight of my mini-series “Welcome to Motherhood.” Miss the beginning? Start here.

While we all waited to see if Elli’s body would recover sufficiently from the lack of oxygen, her doctors donned detective hats, looking for a reason for her heart defects and the best way to proceed. Geneticists interviewed us and took blood samples from us and from Elli. Cardiologists scanned her heart, neurologists scanned her brain, and surgeons studied all of it. Their team approach to her care and the hospital’s reputation gave us much-needed peace of mind.

Scott and Elli in the CICU

While they tested and measured and strategized, we tried to acclimate  and find our role as parents of a critically-ill baby. The only skin contact we had was the top of her head, her fingers, and her toes. We did our best to provide her with positive, comforting touches where we could. I continued to pump and freeze milk though my supply began to dwindle, and we asked lots of questions about what things were, how they worked, and what the significance of various numbers and alarms was. We learned that a rapid triple beep brought people running, and we found all the best places to eavesdrop on rounds (the doctors always took time to speak with us directly, but I remained curious what the team said about Elli amongst themselves).

We tried to make Elli’s bed as home-like as we could. I had been preparing for Easter with the church choir, rehearsing songs every time I drove. We borrowed a small cassette player (remember those?) from a child-life specialist and played music day and night, hoping she would remember and find it comforting. We thought it might also cancel out the nurse gossip, medical reports, and beep-boop of all the technology around her. We also heard from the neurologists that music and other stimuli would help her brain heal from the lack of oxygen.

Learning the hospital pecking order took some time. I remember one woman in green scrubs and a dark brown bob, not as friendly or approachable as the nurses, but with a higher level of knowledge about cardiology. She was more present, more hands-on than the white-coated attending physicians, but she appeared to answer to them. It took weeks to identify her role as cardiology fellow, the title given to doctors who are getting additional training in a speciality. Unlike the nurses, she could order tests, change medications, give us more information, and insert central lines.

I loved/hated those lines. Central and arterial lines are more permanent than the peripheral i.v.s they tried to insert in the E.R. They go deep into larger vessels and allow staff to draw blood, administer medication and nutrition, and obtain accurate measurements of various body functions (like blood pressure). Hurray for no needle sticks! But, these lines did need to be replaced if they clotted off or expired. Insertion was a sterile procedure and somewhat blind – you can’t see an artery, you can just feel it. All of this meant we had to leave the room and pray that this time, they’d get the line in on the first try (I don’t think they ever did).

Leaving Elli’s room meant entering the general waiting area, shared by families of children in both the PICU and CICU families, otherwise known as the 4th level of hell. These other families’ children were eaten up with cancer or mangled in accidents or born with devastating malformations. Some of their stories made the evening news, blaring at full volume from the orange-tinted screen in the corner. The fear, grief, rage, and hopelessness was palpable. Many of them shared stories with each other, but Scott and I kept to ourselves, unable to handle anyone else’s pain in addition to our own, hunkering in a corner as if in a city being bombed until someone told us we could go back to Elli’s room.

The days dragged long and monotonous, except for brief moments of terror. I preferred the monotony, but for the first time in my life, I couldn’t concentrate on books. A magazine article or short story was I could manage. Otherwise, I just watched and listened, occasionally praying when I spotted a crisis unfolding in the unit. My sense of God was constant but under the surface, less about saying words to God and more about waiting.

We tired of the cafeteria, both the distance from the CICU and the food available. Our church family begged for ways to help, so we asked for meals that we could pack and heat in a microwave. We discovered that food was their love language as a flood of meals, 9×13 pans of brownies, cakes, and cookies rolled in. We had to get help consuming it all from the night-shift nurses. They were easy to convince.

Visitors were a welcome bright spot, especially when we could share stories and make each other laugh. Oh how we needed to laugh. I’ll never forget the people who drove out of their way and braved the intimidating nature of the ICU environment to spend time with us, bring magazines and food, and pray for Elli.

At long last, two weeks after Elli was first admitted, the heart surgeon met with us to talk about their plan for surgery.

Read part nine, “When the Chances of Survival Are Slim or None” here.

P.S. If you are a new reader or new subscriber, welcome! I’m so glad you’re here. Be not afraid or overwhelmed at the flood of posts this week. I normally post three times a week and will resume my regular posting schedule next week.

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