Last kisses...

December 17th was the last time Sophie and Logan saw baby Harrison alive. 

I remember that day, Logan and I were tired and frustrated for some reason as we arrived at the hospice. I really felt like Logan needed some alone time with Harrison so I tried my hardest to entertain Sophie and make sure Logan got to hold Harrison as much as he could. 

He held him for about 2 hours straight. 

Dec. 17th Sophie and Mom's day visit 

Sophie held him and sang to him like she always does. She kissed him, cuddled him, and helped me with the big sister stuff she loved to do. 

Before we knew it, it was time to go so we said goodbye to Harrison. I always made sure that Sophie gave him a kiss and said goodbye every time before we left just in case it was the last time she could do it. 

We went home and put Sophie to bed. I planned on going to sleep with Harrison that night. Before I left, I sat and talked to Logan. I told him how I was just so tired and didn't feel like driving back, I just wanted to go to sleep at home. Logan said I should do whatever I wanted. I sat and thought. Even though I was exhausted, I felt like I needed to stay with my baby. It was hard to stay the night because I basically didn't sleep at all. Every 3 hours the nurse would come in to feed Harrison plus I had to pump at least once a night. It was wearing me down, but I wanted to be with him. 

December 18th

I started driving the 15 minute drive to the hospice and thought about tomorrow. Logan had the idea that we needed to go on a date. We needed to get out and have some fun to recharge and let go of some stress. We decided we would take a lot of that day to go shopping, have dinner and then watch a movie. When he first suggested we spend almost a whole day apart from Harrison, I was scared. I started to feel guilty, but Logan insisted that we needed this date. I agreed, and asked our bishop's wife to sit with Harrison that whole day and found a friend to take Sophie for the day and overnight. 

Once I got to the hospice and walked into Harrison's room I was so happy I decided to come. My sweetie was just waiting for me to hold him. I quickly got ready for bed. I pulled the recliner close to Harrison's crib, set my water and cell phone next to the chair, and carefully picked up my boy. We sunk into the chair and I pulled a blanket up over us. Then, we just snuggled for a while. My favorite part of the day. Silence, and holding Harrison. 

December 18th - My last kisses

After Harrison's feeding I decided I should probably get to sleep. I put him down, dimmed the lights, and closed my eyes. A couple hours later it was time for him to eat again. He started crying quite a bit. A lot more than he usually did. It seemed he was getting hungrier and hungrier. I tell you, that boy loved his food. :) The nurse came in and gave him his milk and he still didn't calm down, so I picked him up and held him in my arms. 

Next, I did what I knew best, I sang to him. 

I had never once sang my new baby boy to sleep before. Right when I started to sing, he stopped crying and just stared up at me in silence. I remember looking down at his face and watching him as he studied me. It looked like his little mind was going a million miles a minute. I always felt like Harrison knew more than me. More than all of us. Like the veil to the other side wasn't closed. If only he could have talked to me, but for now, I could feel his love and his spirit through his tiny, dark eyes. After singing at least 4 songs to him, he fell asleep. 

A couple more feedings later, I picked Harrison up again and we slept together until his new nurse came in for the morning. There were a couple of times that his heart rate went down while I was holding him but that wasn't anything new. I didn't think anything of it. I told the nurse that I wanted to bathe Harrison today and they got everything ready. Like I said before, Harrison loved his baths. He was actually asleep when I gave him this bath and didn't wake up until halfway into it. There were three of us in the room and we were just laughing at him as he was just limp and asleep. I loved his skinny legs and arms. They were the cutest little chicken limbs I had ever seen. I got him all cleaned up, lotioned, changed, and they gave him his next feeding. They started giving him more milk since I noticed he was getting even more cranky with his meal times. I could tell he liked having a fuller tummy. 

Harrison must have felt like a new man after that bath because he was wide awake and talking to me. I needed to go soon because Logan and I were going on our date but for some reason I just couldn't leave him. I got all of my things together and found myself going back to him over and over to kiss him more and more. I couldn't stay away. I decided to grab my camera to try and catch him jabbering at me. It was almost like he was trying to talk. I'm glad that I captured these moments because they were the last moments I had with him. Finally I felt like it was time to go. Logan and I needed to get Sophie to her friend's house and I still needed to take a shower, so I kissed my baby for the last time. 

The last time. 

I turned and walked away. 

The last time......If I had only knew,

I would have never left his side.

Our piece of heaven on earth......

When faced with a trial where you have an unknown amount of time with a loved one, your priorities are really straightened out. Family comes first, you also need The Lord for strength and understanding, and then you try to get sleep. That's it. That is what consumed our days while we were in the hospice. 

We were there.

 There for Harrison.

There for Sophie 

so she could experience as much of her brother as she could. 

Dec. 10th First day in the hospice

Showing Harrison his puppy, "Rolo"

She was just ecstatic to be able to get in his crib and hold him all by herself. It just melted my heart to see the two of them together. What a great big sister she was and still is to Harrison. She would sing to him, try to give him his pacifier, show Harrison his toys. She was loving it. This is exactly what I wanted. We were together as a family. We were able to relax and watch movies while Harrison slept in the other room. I could spend the night with him as much as I wanted. I was feeling more and more like his mother. But there were still things that I wished I could do. I wanted so badly to be able to feed him. I hated pumping. Hated it. I hated waking up in the middle of the night without my baby just to pump. But even thought I hated it, I loved that I was able to at least do something for Harrison. And boy did he love to eat! Whenever it was time for him to eat he would get so grouchy. Harrison was a very mild and meek little baby, partly because all of his energy was going toward breathing, but we really hardly ever heard him cry except at meal times. 

Dec. 12th

I loved hearing him cry. 

I hope I'm not the only mom out there who actually likes to see their babies cry. 

I think it is so precious. 

Maybe it was extra precious since Harrison didn't cry very often. :) 

Dec. 13th

Being a "big sister"

One of the biggest reasons we were able to be with Harrison so much was because of all of the help we received. I have never, EVER been in such a situation where I had to ask for and accept so much help. We received meals for about a month, we had babysitting for Sophie for about a month as well. We received countless cards, phone calls, checks, flowers, presents, you name it. The love and blessings were pouring in. I remember being in shock as person after person went above and beyond what they needed to do and really lifted our burdens. Still to this day I am swamped by thank you notes that I need to write. I'm afraid it will take even a few more months to finish them all. :) 

All I can say about all of this goodness is that God knows what we need. He is at our side every day if we allow him. He is letting others know of our needs and he is comforting us when we are struggling. HE KNOWS. 

HE SEES. 

HE LISTENS. 

HE IS THERE.  

Dec. 12th My eternal family

This trial that our family went through has opened my eyes to that concept. We are so close to our Father in Heaven. We are so close to Jesus Christ. We are so close to the Holy Ghost. We just have to allow them into our lives. They are waiting for us to open our ears to them and to allow them to help us. I feel like I am a good person. I have never been the best, but I feel like I have been a pretty good person. What I never knew was that I could be so much better. I have so much potential and the way I learned that was through Harrison. The Lord trusted me with him. He knew I could handle it. He knows the person that I am and from what I can tell, I must have been pretty strong. I never in a million years thought I would be able to say goodbye to one of my children but The Lord had these plans laid out for Logan and Sophie and I so he knew we could do it. That alone gives me hope and strength. I have so much work to do to become who the Lord knows I am and through the help of all of these wonderful angels who had been helping us, we were able to keep going and become stronger. 

So, thank you. 

Thank you to everyone who smiled, cried with us, visited us, gave us meals, watched Sophie, prayed, thought of us, sent us money, called us....the list goes on. 

Thank you.

Dec. 13th Harrison's festive crib :)

"stretch!"

Looking back to our time in the hospice I now realize that Harrison wasn't there to survive for himself, he was surviving for us. So we could kiss him, sing to him, change his diaper, take pictures and videos and do all of the things that we wanted to do with him before he left us. He was gracious and I am so thankful for that. He didn't need to come back to us, but he did. 

What a sweetheart. 

One thing we were able to do that I am so happy about is bless Harrison. Logan and Bishop Bahr blessed Harrison on December 12, 2013. He was blessed with eternal exaltation. He was blessed that someday he would receive the priesthood power, that someday he will serve a mission after this life and someday he will get married. He was also told that Heavenly Father was very proud of him. I can imagine that he is extremely proud and so are we. 

Dec. 12th

On December 15th I was able to do something else that made me so happy.  Harrison and I were able to "nuzzle". It's like breast feeding but with no milk. I had talked to a lactation consultant and told her that I really wanted to try it at least once and she gave me the green light. So I tried it twice and it worked, twice. All of the nurses in the hospice started to celebrate. :) They were literally jumping up and down because they were so happy. I loved it. So, thank you Harrison. Thank you for letting me do that for my own selfish reasons. :)

Dec. 14th

The time we had with Harrison was so special. It was so brief and short and not how we ever thought our time with him would be but we loved it. We knew he was going to leave us soon. We didn't know when but we always felt it would be sooner rather than later. On December 16th I wrote down a sweet and tender moment between Sophie and I that I would like to share.

12-16-13

                           Today I asked Sophie if she knew where baby Harrison was going. She answered       "With Heavenly Father". It broke my heart and made me happy at the same time and I started to cry. She looked at me and then said, "I know. I know." Then she hopped off my lap, ran off, and came back with a tissue. "It's okay. It's okay. She said and she gave me a hug. I was amazed.

Dec. 11th

That's where he was going. It's where he needed to be. Sophie knew it, Logan knew it and I knew it and it was getting close. We were getting weary and so tired. I remember one night praying that something would happen to change this. I didn't know exactly what I meant but I was tired and felt like I couldn't do it anymore. I know Logan was feeling the same way and the Lord listened.

 Dec. 15th 

 Zonked out after being held by mom

Dec. 16th I had to try some of his many hats on him :)

The following photos were taken by our good friend Leslie Pfau on Dec. 11th

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.