We thank Kristina Horner for sharing with us the very personal story of having to say goodbye to her precious 48-day-old baby girl. Annika’s life touched many and Kristina hopes that by telling her story, more families who have faced, are facing or will face heart defects will find comfort, hope and the knowledge that they aren’t alone in their journey. This isn’t an easy story to tell or to read, but it is the story of one mom and the reality she was forced to face. Much love and continued prayers to Kristina and her family. To read about Kristina’s first birth, please click here. To read her posts about Annika, visit her website Heartfelt Journey.
On Sunday, January 16, I witnessed as they extubated Annika and she was able to breathe on her own for the first time. It was scary, because I didn’t know for sure if she would be able to do it. But, she never ceased to amaze me. She was working really hard, so they placed her on vapotherm to help her breathe a little easier. Vapotherm is pressurized, wet oxygen. It forces in oxygen, so that the lungs do not have to close completely with every breath, instead, the oxygen lets them keep open a bit; making it easier for her to breathe on her own. She hated it because it blew out a lot of water. The water would get all over her face and in her eyes. Her little cheeks were candy apple red because of the tape that was finally off her face. They looked so soar. I couldn’t believe that we had finally come to that point; she was breathing on her own. It was only a matter of time before she was coming home!
Over the next few days, we learned that Annika enjoyed sucking on a pacifier. The nurses told us they were unsure if she would catch on right away, but within the day she had figured it out and loved it! She also enjoyed sitting in her bouncy chair, watching the lights and bright toys. I wanted to kiss her all over her juicy little lips, but I knew it would be worth the wait. I could not risk getting her sick.
That following Wednesday or Thursday I headed to South Bend for some much needed time at home with the boys in my life. Annika was making countless steps toward coming home and I could rest easily. My parents stayed with Annika, while I was gone, so that she had loved ones with her and so that I was more comfortable. That Friday was my birthday and it was nice being able to spend it at home, but unfortunately it wasn’t with my entire family.
On Saturday, January 22, we got a call that doctors were going to have to reintubate Annika; she was having a difficult time breathing. We left for Indianapolis right after the call. I was able to remain calm by reminding myself how long she made it off, and that we thought she would have needed to be reintubated long before she did. I referred to January 22 as a day of setbacks. She was reintubated, had surgery to insert a new drainage tube and had to go back on narcotic pain medicine.
Over the next few days, I felt things were promising. On January 26, I was able to put clothes on Annika for the first time. I was so excited! I went out and bought shirts that folded over with front bottoms, so that it was easy to get to her lines and dressings. On that same day we had a Care Meeting to talk about things that needed to happen in order for her to come home.
Over the next couples days, her stomach began to look distended. My mother-in-law was the first to notice. After she pointed it out, I told the nurse. The distension of her stomach quickly became a big deal. She was sent to have a test done, including pictures and dyes. After the procedure, we learned that Annika had several bowel perforations. The surgeon told us she had several perforations, which she could suture together, but that if they didn’t hold, there was nothing more they could do. I felt sick during the surgery. I knew if she wasn’t able to close them that she wouldn’t make it much longer. The surgery was performed and she was able to close the perforations. In that moment, I celebrated!
Annika was still on peritoneal dialysis. The fluid it the dialysis bag typically looked like urine. On Monday, January 31, the fluid in the bag was brown. I remember seeing that bag for the first time; I knew at that point that we were going to lose her. I remember feeling weak and a little like I might vomit. It was like I was in a shock. Evan had left the night before, in order to be at work that Monday. Two doctors, a nurse and my mom were taken into a tiny little room. It was the meeting that every parent with sick babies fears. “There is nothing more we can do for her. We are so sorry.” I was heartbroken. I sat there, limp inside the couch. The nurse, Patricia, had her hand on my knee. I emptied what seemed to be a box of Kleenex and had a pounding headache. I didn’t want to get up. I didn’t want to leave the little cave. I didn’t want to face reality. I called Evan and told him that he needed to get to the hospital and we informed loved ones that if they wanted to see her, they better come now.
After I left the room, I ran into my friend, Angie. She too had a little girl on the PICU. We went into the tiny room and I told her what I had just been told. We cried together, she held me and I can’t thank her enough for being there to listen and lend support. I managed to push through that day …knowing she was going to die. We took finger prints, pictures, created a replica of her hand and spent the evening holding her with loved ones and crying lots of tears. Quite honestly, I don’t know how I survived it. I was physically and emotionally exhausted. That evening some family and friends joined us as we were saying our final good-byes to our beautiful baby girl. I don’t know how I somewhat held it together. Late that evening I was talked into heading back to Ron’s House to get some much needed rest. Her nurse, Kim, held her all night. She rocked her, talked/sang to her and loved on her. We are so lucky that Kim was there to care for her when we were not. She was seriously incredible with her; we couldn’t have asked for a better nurse.
I arrived early the next day. Annika began to look very sick. Her body began to look purplish, brown. Her dialysis bag was very dark and she was obviously uncomfortable. My mother-in-law brought to my attention that maybe we shouldn’t let her go through the suffering and that we should let her go sooner than later. I didn’t want to hear that; I didn’t want to let her go! But I didn’t want her to suffer either.
We had her baptized in our arms with several family members in the room. I was very emotional. My angel was being baptized, and I knew that we were having our last moments together. As the years pass, the days and specific moments become harder to remember. This moment is specifically difficult to remember. I’m not sure why. Maybe it’s God’s way of making grief a little more bearable? Maybe it’s my mind’s way of shutting out emotionally devastating memories? Or maybe in this instance, my mind was never truly there to begin with? All I remember about this moment is pain, and crying so hard that my head was pounding. Although I knew it was joyous to have her baptized, I didn’t want it to be because she was dying. I wanted to have it in our hometown. I wanted to pick out her baptismal gown or have Grammy make it. I wanted to pick out her “party” dress. I wanted to have a dinner to celebrate her baptism with family and friends. But I guess it was never about what I wanted. I never thought that the baptismal gown the hospital gave me would be the outfit she was buried in.
Shortly after that, it was time. I discussed with the doctor that I did not want her to feel like a “fish out of water.” I wanted her to feel at peace. She had suffered long enough. Grant (her brother), grandparents and a few other loved ones kissed her goodbye for the last time. With heavy hearts and tears in our eyes, it was our request that Evan and I be the only ones in the room to watch her fall asleep and never wake up. I sat in the chair holding my baby, as Evan sat holding us. The doctor, Dr. Tosi, and one of his nurses were also in the room. Dr. Tosi gave her a heavy dose of Fentanyl to keep her comfortable, shortly after he drew the endotracheal tube from her throat. Fentanyl is a narcotic, a pain reliever, which will make you very sleepy and slow the respiration rate if given enough. In order for Annika not to gasp for air, she was basically heavily sedated. After they pulled the tube, I could see her entire face. I studied her face and she drifted away from us. I glanced at the monitor multiple times. I watched her oxygen saturations go from the upper 80’s (her normal -our normal is upper 90’s) down to the 70’s, 60’s, 50’s, 40’s and then 30’s. It all happened pretty quickly. Once she peered up at us, in a sense telling us the she was okay. When her sats dropped to the 30’s, the doctor turned the monitor off and shortly after he left the room. I knew when she passed, her eyes opened and she made an unusual noise as the last bit of air escaped her body. She suddenly had a peaceful face. I gently placed her eyes closed and began to softly cry. I too felt a sense of peace, as did Evan. I can confidently say that God held us in that moment. We both felt it.
The doctors and nurses began to come in, sharing their condolences. They let us know that we could hold her for as long as we chose. I rocked her tiny, angelic body as Evan went to tell our loved ones that she had passed. I sang to her “You Are My Sunshine” as tears flowed down my face…”don’t take my sunshine away.” After I was finished, Evan held her and rocked her, alone in the room. After he was done, the grandma’s took their turn, holding her for the last time.
During her last day of life, I held her the entire time. Evan and our families cleared our things from Ron’s and the hospital room. It was snowing really badly out. The roads were terrible. As I was kissing Annika for the last time, the loaded cars were waiting outside the hospitals main entrance.
I didn’t want to leave. I knew that would be the last time I would hold her precious body. Finally, I had to say goodbye. I handed her to her nurse, who was preparing to give her a bath. As I walked to my family in preparation of leaving what had been my life, I felt numb. I felt empty, emotionless. The car ride home was similar. A snowy February 1. Few words were spoken. Few sounds were made. The only sign of life, were the tears running down our face.