Taking him "home"...

The time had come to take Harrison to the hospice. After he left us the morning of December 9th we both knew he wouldn't be with us much longer. 

We needed our family together. 

The morning of December 10th came and we got up to run to the hospital. I ran up to the NICU to pack up all of our belongings while Logan followed the ambulance to the hospice. I made it there just in time to say bye to Harrison before they wheeled him off. I was so happy that Barb, one of our favorite NICU nurses was able to transport him. 

Harrison and Barb

This was the day I had been waiting for. It was the day I was taking my newborn baby "home". I was beyond happy and was able to feel the excitement that mothers usually feel when they have a new baby. While having Harrison in the NICU, I was happy and loved being with him but I never really felt like he was truly mine. I guess in a way I really never did since I knew he was just visiting us for a while, but being able to take him to a more "homelike" environment was just one step closer to normalcy. 

Harrison's first nurse when we got to the hospice was Whitney. I was a little skeptical at first. It was almost like getting a new step-parent. These were new women who were going to take care of MY baby. I sat back and watched and saw how careful she was with Harrison and how sweet she was to Sophie. It made me feel a little better watching her with them. She told us she had worked with babies before so that made me feel even better. 

Sophie and "Whitty" feeding baby Harrison

After Barb gave out all of her orders to the new nurses and instructed them how to take care of "her" baby, we said goodbye. It was so hard to see her go. I even had a hard time saying goodbye to the other nurses in the NICU. They sent us home with a certificate saying that Harrison had graduated the NICU. Looking at it made me a little sad. When I had looked at it before we knew Harrison had Trisomy 18, it made me happy that he would be done with his NICU stage. He would be able to move on with his baby life. Now when I looked at it, it just reminded me that he didn't graduate the way I thought he was going to. I felt like he was going backwards. But really, he was going forward. He was moving on with life in a way none of us ever would. So, I was sad, but also happy. It's so weird to feel two strong emotions at the exact same time. 

After all of the commotion, we got Harrison settled in and hooked up to his machines. Then, we just enjoyed. 

Enjoyed the quiet. 

Enjoyed our family of 4. 

Enjoyed these last few moments we had together. 

We were "home". 

This was it. 

December 10th was one of the happiest days of my life. 

Sophie love

She was so happy

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. 

Splish! Splash!

Amongst all of the scary and stressful times were some really fun and enjoyable moments. Bath time was one of them. We were able to bathe Mr. Harrison maybe 3 or 4 times and each time, he LOVED it! He would lay in the water like he was in a hot tub and let us do whatever we wanted. The very first tub bath we were able to give him gave him quite the surprise. His face looked so worried and Logan and I could not stop laughing. 

 1st tub bath - Nov. 24th

 "What are you doing to me?!"

One thing Logan would say that would always make me laugh was that he and Harrison would play soccer all the time. Harrison would jump down from his crib and run around with Logan, kicking the ball. It was always when I wasn't around. :) I am so thankful for a husband who stuck by me, helped me through the rough times and made see the happy moments through this whole experience. He is truly a miracle. 

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

Big Sister

One of the first thoughts that came into my mind after we received Harrison's diagnosis was, "Sophie needs to see her brother." 

The sweet doctors and nurses agreed to let Sophie see Harrison through a window. (Since it is winter and RSV season, children aren't allowed in the NICU.) She was so excited to hear that she would meet baby Harrison. We put him in a transport crib and walked him to the window. Sophie's "mimi" told her that Harrison was at the window and I will never forget the look on her face. 

Pure happiness. 

She ran to the window and climbed up on a chair so she could see her baby while I held him. Logan and I were both crying with joy. It was wonderful to have our two babies together. 

Photograph by Grandpa Reed Miller

Bittersweet

I hate the word bittersweet. Every time I thought of my Harrison passing away, that is one of the feelings I would feel. Bittersweet. Being members of the Church of Jesus Christ of Latter-Day Saints, we believe that we will see our sweet Harrison again if we live righteously enough. We know that before this earth was created, Harrison was one of the most valiant spirits along with many other people on this earth who were born with severe mental and physical handicaps. They were so valiant that they didn't need to be tested as much as we do or even at all. They have been protected from the hardships and evils of this crazy world because of those handicaps. We also believe that when a child dies before the age of accountability, they are immediately sent back to the Lord to live in his presence for eternity. Knowing that, but also knowing that my baby boy had to leave me in order for that to happen makes this whole situation "bittersweet".

Dec. 2nd Posing :)

The days following our discovery of Harrison's condition brought much sorrow, joy, anger, and acceptance. But most of all, we were blessed more than we could ever imagine because of this special boy. When any trial comes to you in life, you turn to they who know you best, who can help you and know everything you are going through, our Father in Heaven and Savior Jesus Christ. Logan and I have come to know them even more since we were blessed with Harrison. Their love is so real and so strong.

One night, Logan and I were driving back from visiting Harrison and we were talking in the car. The drives were about 15 to 20 minutes long from the hospital to our house so we had a lot of time to talk. We loved those long talks, they were yet another blessing Harrison gave to us. We became so much closer because of him. I remember we were talking about Harrison and how hard it would be to let him go. We didn't know when he would go, it might have been years, or maybe just days, but we knew he would die before we did and we were trying to wrap our minds around saying goodbye to one of our children. During that drive, Logan said something to me that will stick with me forever. He said that he knew that bringing Harrison to this earth was our calling. That The Lord had called us to do this. Harrison was supposed to come, he was supposed to be sick and he is supposed to die so he could do a much greater work in heaven. At that moment I felt my Father in Heaven and the Savior so strong, strong enough that it seemed they were both standing in front of me giving me comfort and telling me "You can do this, Melissa. We are here with you every step of the way." It is so hard to describe the love and comfort that filled my soul and in that moment I knew without a doubt that Harrison was needed in heaven. I knew he would leave us. The reality sank in and my heart just dropped, but at the same time, I received so much strength. Logan looked at me and told me "We can do this together. We can do this." I believed him with all my heart.

Dec. 5th Almost a month old

Dec. 6th Snuggling

Visiting Harrison became harder. I feel like while we were at home, apart from him, we would already mourn him but try to stay positive because we had been blessed with a beautiful baby boy who we loved so much. When it came time to go to the hospital, we would be tired at times and wouldn't feel like driving there. But when we entered Harrison's room in the NICU, we would instantly feel the spirit so strong. His room was like a sanctuary. We were able to hold our precious boy and feel the peace and calm he gave to us. I never, ever wanted to leave. If it weren't for our beautiful daughter waiting for us at home, I don't think we would have left. It was so hard to split our time between sweet Sophie at home who was having such a hard time being away from us at times, and our sick baby boy. But somehow, it all worked out. And by "somehow", I mean, through the Lord's grace. Saying goodbye to Harrison every day, twice a day was the hardest part for me. It seemed like we needed to say goodbye as though it would be the last time we would see his sweet face. I hated leaving him in that hospital but I knew it was where he needed to be.

 Harrison and Grammie Coletti Nov. 22nd

 Papa Miller saying goodbye Nov. 30th

 Harrison and Mimi Miller

 At my wonderful baby shower - Nov. 22nd