I was hoping to write this while it was more crisp in my mind, but after six weeks of ER visits, hospitalizations, and having to be constantly on the ready to catch vomit and stop her from choking on it, here we are. Six weeks post op and I finally have a chance to sit down and catch my breath. And I thought heart failure was brutal! It was nothing compared to post open heart surgery, my friends. But I seem to be starting this post in medias res. Let us rewind a bit, shall we?
As you might have seen in my previous post, Regina was scheduled to have her open heart surgery on May 26th. As I predicted, we didn’t make it until that date. The week of May 8th, she started deteriorating rapidly. She was constantly throwing up, she had a distinct pallor, she was struggling to breathe, and when we went to her cardiologist appointment on Friday, her oxygen saturations were low and she had gained a pound. My mom and I sat in the exam room waiting for the cardiologist to come talk to us, looking at my pitiful child. I knew that the news was not going to be good. Dr. McKane, our cardiologist, came in shaking her head and sighing. “Oh, Regina, Regina,” she said. “Her oxygen saturations are very low. She gained a pound, but judging from her breathing, I’m guessing that extra pound is all fluid in her lungs. I have maxed her out on diuretics that you can safely give her at home. I’m really sorry, but I’m recommending that we admit her to the hospital this weekend so that they can try and dry out her lungs with IV diuretics while monitoring her electrolytes and go ahead and schedule her surgery for first thing Monday morning. I know that is not what you were picturing for your Mother’s Day weekend. I’m so sorry!”
To be honest, I was relieved. I was ready for her to have this surgery, and I knew it was time. So we packed our bags that night, dropped off the girls at my parents’ house, and were admitted to the hospital the next morning.
The hospital has two units for heart patients: the CICU and the CSU. The CICU is the cardiac intensive care unit. It is a floor dedicated to critical cases filled with cribs divided by curtains. Each crib has a nurse’s station directly in front of it and a nurse sitting at that station assigned to one patient and watching that patient like a hawk for 12 hours straight until shift change and the next nurse comes. There is nowhere for parents to stay in the CICU, so we reserved a hotel within walking distance to the hospital for the time that Reggie would be there. The other unit is called the CSU, or the cardiac step down unit. This unit is filled with your typical hospital rooms, complete with their own bathrooms and two pull out couches for parents. When we were admitted, we got to stay with Regina in the CSU, with a window overlooking the beautiful garden outside. When we walked into the CSU, I was clutching Regina to my chest and looking around at our new home for the next few weeks. Her nurse came to meet us and show us to our room, and I burst into tears. I couldn’t believe the time had come. I was a firestorm of emotions. The nurse got flustered and said, “I’m so sorry you’re here!” “It’s alright,” I said. “We’re where we’re supposed to be.”
We spent Mother’s Day prepping Regina for surgery. She had to have blood draws, a chest X-ray, an echocardiogram, IV placement, and a special bath with special soap. I stared at her perfect chest, trying not to be sad that her chest would never look that way again. I wondered if I should take a picture of it, one last time. I decided against it. It would be silly of me to mourn a “perfect” chest if that perfect chest meant that she would die of heart failure. Jesus showed his wounds without shame, and so would she.
That night, I did not sleep.
The surgical resident came in around 7 am to explain the surgery to us. I asked him about a condition called chylothorax that I had seen many babies in my Down syndrome Facebook groups develop post surgery. Her feeding situation was already tenuous, and if she had to go on the required six week disgusting no fat diet due to chylothorax, it would make it practically hopeless that she would eat by mouth any time soon. He assured me that chylothorax was very rare and I didn’t need to worry about it. He had us sign her life away and he sauntered out. I held my sleeping baby’s hand and waited for them to come escort us to the OR.
My greatest fear in all this was having to hand my baby over to the surgeons. I knew that Regina looked to me as her mother for comfort and security, and I certainly did not want to freak her out by acting like something was wrong. However, I just didn’t think I had the courage to hand her over to those surgeons while exuding peace and strength for her sake. I prayed and agonized about it for hours the night before. “Please give me the grace to do this, Lord. I cannot do it on my own. I will only break down and distress her.”
The surgical nurse finally came in at 8 am, brisk and business-like. She pushed some medication through Regina’s feeding tube. “This will relax her,” she said. “But it won’t put her to sleep.” I felt a panicky knot in my throat as I knew the time had almost come. And then, God had mercy on me. Regina’s eyes slowly closed and she drifted off into a peaceful sleep. I took off her pajamas, as they only wanted her in her diaper. But I didn’t want her to be cold, so I wrapped her up in a soft blanket and picked her up. Scott put his hand on my shoulder as the nurses motioned for us to follow them.
We paraded down the CSU corridor and out into the bowels of the hospital. Giant doors kept opening by themselves in front of us as the nurses waved their cards in front of security pads. It felt like we were going to meet the Wizard of Oz. The halls got colder and colder and more bare and sterile, until we finally stopped in front of a group of men in scrubs. A man in brightly colored scrubs and face mask identified himself as the anesthesiologist. He said it was time to hand her off. I kissed her on the forehead and said, “Blessed Mother, I leave her under your protection.” I handed her over to the anesthesiologist, still wrapped in her blanket, still sound asleep. He held her out for Scott to kiss and then held her close, and turned to leave. The image of that man in scrubs cradling my tiny baby in her blanket and disappearing behind those steely double doors will be seared into my memory forever.
Scott and I turned to follow the nurse back to the CSU to pack our bags and head to the surgical waiting room. I finally broke down and started crying as Scott held me close.
To be continued in Part II.