10 minutes...

The reality of Harrison's situation hit us like a ton of bricks after we started seeing the side effects of Trisomy 18 come into play. We realized that we probably wouldn't have much longer with our son and wanted so desperately to take him home where he could spend the rest of his days. I wanted him in his crib. I wanted him to use his beautiful bedding. I wanted to wake up in the middle of the night or in the morning and have him near me. I knew it would be extremely hard and a tremendous amount of work, but I didn't care. I also realized that he would pass away in our house if he came home and probably when it was just Sophie and I alone with him. That was a VERY hard pill to swallow, but again, I didn't care what I had to do, I wanted him HOME. I wanted to feel like I had a baby in the hospital and the happy day had come when we got to bring him home. I wanted Sophie to be around him all of the time, helping with diapers and feeding. I wanted her to be in his face, bugging him and mauling him. I wanted the "normal" circumstance. 

After a long time just thinking about me and my wants, I was given a good dose of more reality.

First, to be able to take Harrison home, he needed to be at a much lower flow of oxygen than where he was at the moment. Being so fragile, we weren't sure that would happen. Second, our insurance wouldn't cover it and since Logan is in medical school, we just did see that as being feasible. This broke my heart. I felt like there was a huge wall being pushed toward me, keeping our family from being together during this precious time. After learning of those two HUGE obstacles, one of the sweet nurses brought up the point that she was worried about ME and how I would handle having Harrison die in our home. I'm not going to lie, that bothered me a little bit. I mean, I'm his mom. He is MY responsibility. If he is going to die, I want to be there. But after thinking about it and talking with Logan, I could see that it would be a very traumatic experience and after he died, everything in our home would remind me of that experience. I guess they were somewhat right. I'm glad I had a few other people to help me think through some of these things, especially Logan.

 Dec. 6th

So, we were a little stagnant. We didn't really have any plans other than trying to wean Harrison down to a lower flow of oxygen. Logan went back to his rotation as I tried to stick by Harrison's side as much as I could. One morning, I was in Harrison's room talking to the rounding neonatologist and a nurse. They started asking me all these questions like, "Were we going to do an eye test?", "If we did find something to be wrong with his eyes, would you do surgery?" They were also worried about a possible block in Harrison's liver. The doctor had ordered a HIDA scan before Harrison's episode happened. This is where they inject dye to do an x-ray and see if anything is going on in his liver that would make his direct bilirubin count so high. The doctors wanted to know if we even wanted to do that test. I know we had decided to keep him comfortable but there were still so many things they were asking me and I didn't even know what it all meant. My head was spinning. I told them I needed to call Logan and we would let them know. When I got Logan on the phone he let me know that he felt he needed to be with me. The doctors he was working with told him to just take all of December off to be with his family. I was so grateful, relieved and happy. Soon after that, Logan was talking with the doctors and understanding everything much better than I was. We decided we weren't going to do any more tests at all except to check his levels. If those weren't right, we would turn his oxygen flow up a little higher so he could be even more comfortable. I felt good with that decision.

Dec. 8th

One or two days later, we got a call from the NICU. It was a hospice nurse. She told us that there was another option for Harrison. There was a hospice in a nearby town that our insurance would cover. We would be able to be together as a family 24/7. My first thought? NO. My baby isn't an elderly man. He's not going to die in a hospice where grown adults pass away and he would be the only baby there. NO. I was so upset. I felt like if Harrison couldn't pass away in his home, the next best thing was his NICU room with all of the nurses who loved him so much. It was starting to feel like a second home and those nurses were starting to feel like family. Logan was so great with my stubbornness and asked me to just think about it. 

So, I thought. I prayed, and I thought. 

And in the middle of all of that thinking and praying, I received a couple answers. 

       

The first was when I was on my knees, crying and pleading with my Father in Heaven what I should do. I said, "I just want my family to be together. I want to be with Harrison all the time." and a simple sentence just popped into my head as plain as day, "Then go to the hospice." Duh! ........that's all I have to say about that. Duh, Melissa.

My second answer was not as simple. I guess Heavenly Father needed to show me that the time was coming soon. 

Dec. 8th After a nice bath

December 8th we had just finished bathing Harrison. We picked Sophie up from a friend's house and put her to bed.......Since I wrote this experience down in my journal, I will just copy it here.....

12-9-13

"It is 2:59AM and we are in the hospital with Harrison....We were at home, I was trying to fall asleep and Logan was still in the living room, studying, when I got a phone call. It was Melody. I could tell by the sound in her voice something wasn't right. "Harrison's heart rate is down. He's still alive, but he's not breathing. You guys need to come in." Panic struck me. I started breathing hard. I felt light headed as I stumbled out of bed, knocking over a candle on my night stand. I ran as fast as I could down the hall to tell Logan but everything was in slow motion. "Harrison's not breathing!" Logan jumped up and started getting things together. Scrambling, I called our friend Chelsea to come be with Sophie while she was asleep. Poor Chelsea hardly understood what I was saying at first but being the good friend she is, she came right over. We just left the door unlocked for her since we were already running out to the car. I couldn't catch my breath and was feeling like I would pass out. We were both going through so much emotion, sadness, anxiety, peace. We each called a parent to let someone know what was going on. While we were driving, another nurse called Logan and told him that Harrison's heart rate had started to come up but we still needed to come in. We got to the hospital and Kaylyn, his nurse, was holding him. We came into his room and she handed Harrison to me. He was very anxious, upset, confused. He was crying harder than I had ever heard him before. He usually hardly ever makes a peep. This was so hard to watch, my heart was breaking and I was beginning to worry that he was going to pass away in my arms. I had to pass him to Logan because I was having such a hard time. We were speaking words of love and comfort to him the whole time. I tried to sing to him but could hardly get anything out. I remember saying, "I don't know what to do, I don't know what to say." as I cried. Logan and I were both expecting Harrison to pass away right then. He seemed like he was in a lot of pain and I asked the nurse if she thought he was. She didn't know but called a doctor to see if we could give him something to help. They finally gave him a little morphine and some "sweeties" along with his pacifier and he slowly started to calm down. Right now, he is laying on Logan's chest, asleep. I don't know if he will leave us today or not but while I watched him crying and so upset, I wanted him to be released from his earthly body."

Dec. 9th - After Harrison calmed down

In fact, Logan and I were praying that the Lord would take him in that moment. He was so upset and struggling so much, it was so hard to watch. One huge detail I forgot to write down in the moment was that his heart rate dropped for about 10 minutes and he wasn't breathing that whole time. That would have done even more damage to his precious brain. I couldn't bear thinking of it. Kaylyn told us that there were about 5 or 6 nurses in the NICU room with him when he wasn't breathing. She was holding him and saying, "You're not alone, Harrison. We are all here with you." She said that he took his agonal breaths (last breaths) and somehow it must have stimulated him and he came back to us.

Those moments in Harrison's NICU room, after he fell asleep on top of Logan were so tender and sacred. I remember loving the silence and hearing the soft humming and beeping of machines. I watched as my husband tried to sleep with sweet Harrison just passed out. I'm sure Harrison was exhausted. We stayed the whole night with him and he stayed with us. We finally felt like we needed to go relieve Chelsea so she could get ready for work. While we were walking out of the hospital to our car I had a very strong feeling, "Harrison does not need to be here." He is done. He needs to go "home". Logan told me that he hoped that Harrison would be able to go soon. Watching him struggle.....it was just too hard for our sweet baby to stay here. He slipped away from us for a few minutes but was sent back to earth for US. Not for him, for us. So we could have more time with him. Harrison's kindness and our Lord's kindness amazes me. They knew my wishes, to have my family together, and they were granting them. 

Just a little more time.