Our first scare...

Dec. 4th - I just wanted to remember the sound of him breathing. :)

Being in the NICU, you hear a lot about apneic spells. I was so new to this experience that I had no idea what that meant or why it might happen. I would always hear other moms say things like 

"We were scheduled to go home tomorrow but Jake had another apneic spell so it will take longer." 

Or, "My baby girl just can't kick her spells." 

Harrison hadn't had one yet so I was hoping and praying that his breathing would just get better and better. Before we found out he had trisomy 18, the doctors were really testing him with his breathing. One day, his oxygen flow rate would be up to a 35 and the doctor would tell the nurses to turn him down all the way to a 25. Harrison handled it really, really well so the next day they would turn him down to a 20. They kept doing this until he was just on a nasal canula. 

Harrison was such a fighter. I know he was trying to breathe with all of his might but on Dec. 1st he had a terrible apneic spell. And worst of all, it happened while he was laying right on top of me. I thought I was going to pass out. The alarms that went off were the most terrifying sound I had heard in my life. Logan and I started rubbing Harrison's tiny head and body to see if we could stimulate him. I remembered a nurse telling us earlier in the week that when the alarms go off, we don't really need to worry unless a bunch of nurses rush into the room at once, and right at that moment, they started to flood the room. Harrison wasn't waking up. The nurses came to my side and started rubbing his back really hard. One nurse finally just swooped him up to put him back into his little isolette and right when she did, it seemed as time stood still. Harrison's body was limp. His head dropped to the side and his tiny body was grey. That was our first taste of losing our baby. I was in shock. Once he was laid back in his crib they put an oxygen mask on him and kept working furiously to bring him back to us. 

A hospice nurse made her way through the nurses and crouched down next to me, 

"Have you thought of baptizing him?" 

It took me a while to really register what she was saying and it kind of shook me up a little. I never thought I would hear those words about my son used in that context. I realized that the nurses and doctors didn't think Harrison was going to live very long. Trying to focus on the nurse instead of Harrison I replied, "In our faith we baptize when they are older." She said "Okay" and left the room. 

One of the neonatologists that had worked with Harrison before came into the room and sat down next to Logan and I. All I remember was he and Logan talking and talking. I wasn't listening. I was just watching my limp baby boy and all of the sudden it was like I could feel him telling me "It's okay, mom. I can go." It seemed like he was comforting me. After a few seconds, I turned back to Logan and the doctor. They were talking about what we were wanting to do with Harrison's care. Logan and I needed to decide if we wanted to be invasive and keep running tests, do surgeries, and whatever else we needed to do to keep him with us or should we make him comfortable and let him go whenever he wanted to. We had talked about this maybe two times before but hadn't really come to a conclusion together. We had both been praying and praying, trying to decide what to do. 

I remember one day praying about this decision and saying, "What do I do? What do I do?" The answer came into my head clear as day, "You already know what you need to do." 

We looked at each other and made the decision during that moment in the hospital to keep our son as comfortable as possible. Just thinking of doing more tests, maybe surgeries, possibly a bone marrow test to find out why he kept getting anemic, ugh, it just made me sick. He was so tiny and the doctors were worried that if he underwent anesthesia he wouldn't even make it. We knew this was the right decision. We already knew that Harrison was needed more in heaven than here on earth. We knew he would be with Heavenly Father and we didn't want to take that blessing away from him even if it meant we could keep him with us for the rest of our lives. Having Harrison safe and happy, free of all pains and struggles meant so much to Logan and I. I didn't want him to have to work so hard to breathe anymore. As much as I didn't want to let him go, I was starting to understand that it was okay. 

After this apneic spell, one thing kept tugging at my heart. Sophie needed to hold Harrison. It was SO important to me to have my sweet Sophie hold her baby brother. We didn't know how much longer he would be with us so I wanted it to happen right then.

We asked the doctor if Sophie could come see Harrison again and he was just fine with it. He even said she could come into the room and hold him. That was a huge deal since kids under the age of 14 weren't allowed in the NICU. Logan went to get Sophie and his mom while I stayed with Harrison. I sang him songs, talked to him and even told him a story. I think it was the three little bears. I know that sounds silly but I wanted to be able to say that I got to do a few things with him that you would usually get to do with your newborn baby. The nurses in the NICU contacted Now I Lay Me Down To Sleep, an organization of volunteer photographers who come and take pictures of babies who are going to pass away. When Sophie got there, we were able to have our first family photo shoot. It was the most precious time in the world. Sophie was so gentle with her brother. She wanted to look at every inch of him. She was fascinated. Logan and I were amazed at what beautiful children we had. We both felt so blessed to have them.

Looking back, I wish I could have stayed in that moment forever. The four of us just loving each other. Family is so precious. It is the most important thing in the world. I am so grateful to have such a beautiful, eternal family.

Photos taken by Matthew Flowers with NILMDTS