Saturday marked Ellie’s 8th day in the hospital. We hadn’t had much luck weaning her oxygen down earlier in the week and on Thursday her chest x-ray was looking worse. The pulmonologist came in and changed some of her medications and treatments and we were finally seeing some improvement. By Saturday her oxygen levels were improving and we were hopeful we would be able to take her home in the next day or two.
We started off the day with Ellie’s bath, as usual. I filled a basin with warm soapy water and set it next to Ellie in her crib. She immediately reached over and began splashing in the water. She happily splashed and splashed through her whole bath until her crib was completely soaked. She loved bath time so much. After getting her all washed up I did her trach care and changed her trach ties with the nurse and respiratory therapist looking on in amazement at how smoothly and quickly I was able to do it on my own. My response to their praise was, “we’ve done this a few times.” I combed her hair and, as usual she fought me as I pulled it into a side pony tail – her trademark hairdo that everyone commented on.
Ellie and I spent the morning playing with toys in her crib. I watched her little hands manipulate the different toys and was amazed at how far her hand coordination had come. She even showed off by signing “more”, one of the signs we had been working on all summer, a few times while playing. I sat in the rocking chair with Ellie reading her favorite touch-and-feel books that she loved to scratch at with her little curved fingers. When Ellie grew tired I laid her in her crib where she cuddled up with a blanket, a new habit she had just started, and fell right asleep. She was such a good sleeper.
That afternoon I really wanted to get Ellie out of her room for a bit, so the nurse helped me hook her up to portable oxygen and monitors and I took her for a wagon ride around the unit. Ellie was the happiest I had seen her all week. She enthusiastically clapped and smiled at everyone we passed. She studied all the pictures on the walls and would lean out of the wagon trying to grab things.
We walked around for over 30 minutes. It must have worn Ellie out because a little bit later I went down the hall to get a drink and came back to find Ellie had fallen asleep while sitting up playing with her toys.
That evening, Ellie’s sweet nurse stayed in her room and played with her while Scott and I had dinner with the big kids. Mason, Brynn, and Miles hadn’t been able to visit Ellie all week because they had all been sick. After dinner they begged to go see Ellie. I knew Ellie missed them and would be so happy to see them, so we wiped all their noses the best we could, told the kids not to cough, and lied while filling out the visitor screening form by saying they hadn’t been sick the last week. Ellie absolutely lit up when her siblings bombarded her with hugs and kisses. Mason made her chuckle with his duck sounds, Brynn sweetly talked to her while showing her toys, and Miles insisted on climbing on her crib, getting right in her face, and saying, “hi, hi, hi” the way he always did to “make Ellie happy.” We didn’t stay long because Ellie was tired and ready for bed. Scott was spending the night with her so the kids and I gave her hugs and kisses and told her goodnight.
Right as we left Ellie became very fussy. As the night went on she cried and cried and was obviously in pain. Scott and the nurses tried everything they could think of to help her calm down. Scott called me multiple times asking for advice. We were all at a complete loss as to what was bothering her. I struggled to fall asleep at home knowing Ellie was suffering at the hospital, but I knew Scott was by her side comforting her the best he could. In the early morning hours she started settling down and eventually fell asleep. Little did we know, she was slowly drifting away.
At 3:56am my phone rang. Scott frantically told me Ellie’s wasn’t breathing and her heart had stopped. I hung up the phone and called a friend to come stay with my sleeping kids. I was waiting in the driveway with the car running and the minute he pulled up I sped off on what was the longest 15 minute drive of my life. They worked to resuscitate Ellie for 30 minutes and got her heart beat back just as I arrived. The moment I laid eyes on Ellie I knew she was gone. Her heart was beating and the ventilator was breathing for her, but that little body lying on the bed was just that –a body. They transferred her to the ICU where they realized her abdomen was distended and hard. An x-ray showed free air in the abdomen, indicative of a perforated bowel, which would require immediate surgery. At this point they were barely keeping her oxygen saturation level in the 80s on the highest ventilator settings and were losing ground quickly. There was no way her little body would survive surgery. Scott and I together decided we just wanted to hold her and be with her in her final moments of life. The medical team stopped everything they were doing and everyone left the room. I cradled Ellie in my arms as Scott gave her a blessing and blessed her with peace and happiness as she left this life. We then sat and rocked our sweet Ellie as she took her last breaths and her heart stopped beating. At 5:35am Ellie’s spirit was freed from the confines of her imperfect mortal body. We stayed with her and continued rocking her. I didn’t know how I would ever be able to leave knowing that it would be the last time I held my sweet baby girl. As time passed her body grew cold and the presence of her spirit grew dim. The time had come to kiss her head and hold her hand one last time and tell our precious Ellie goodbye.
