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

An unexpected path

Thanksgiving week came and we were still waiting to hear the results of Harrison's keryotype. My mom left and Logan's mom got here in the same day. It was so nice to have both of our mothers here to help us. I feel bad because all they really did was clean, cook, and watch Sophie 24/7. But it was such a blessing to have them here so we could spend some much needed time with little Harrison.

Harrison -2 days old

One of the doctors in the NICU decided that Harrison was old enough and stable enough to do an MRI, so they did that test around the 22nd, maybe the 25th? It's so hard to remember now. I remember feeling like Harrison was going to be just fine, the test would come back normal and that all of our worries would go away. The nurses transferred him into a transport crib. They forgot his feeding tube was taped up so they actually ripped his nasal canula right out of his nose! Poor Harrison's face looked shocked and then he started to cry. I felt so bad and the nurse felt horrible. She kept apologizing to me over and over again. After they got him settled in the crib, we journeyed through the hospital. I walked with Harrison all the way to some double doors and then they told me to wait in a nearby waiting room. I know I didn't need to wait in the hospital that day. In fact, I don't know if they even wanted a looming mother around when I wouldn't even be hearing the results that day, but I came and waited for him anyway. I felt like I should. He was my son and that's what mothers do for their babies. I had to come and wait for him.

Nov. 18th - Saying a prayer :)

Those next few days were just terrible. The waiting was so hard. I remember the day we were supposed to find out the results of the two tests. It was November 27th, the day before thanksgiving and Logan went to his rotation at another hospital. I was going to get the results back by myself and then I would have to call Logan. I decided that I needed someone else with me for emotional support just in case the results weren't what I wanted to hear so I had Logan's mom and Sophie come and wait in the waiting room. We headed over to the hospital and I went in to visit my sweet baby boy. While I was kangarooing him, Logan called and said he felt like he needed to be there with me for the results of the test so he asked the doctors at his rotation if he could head over. He was at my side about 15 minutes later. We both sat, holding our son, thinking of all the possibilities; all the malformations he could have. No malformations? He could be just fine. Or he could be handicapped. Who knew? As far as we were concerned, he looked completely perfect. So incredibly sweet and handsome. So meek, pure, and lovely. I feel like those three words are the best way to describe Harrison. Meek, pure, and lovely.

Nov. 26th

Time had come and the doctor came into the room with a nurse right next to her. I was kangarooing Harrison and Logan was sitting in a chair across from me. The doctor started talking about the results of the MRI and keryotyping. The words that came out of her mouth completely shocked me. She told us that Harrison didn't have his corpus calosum (the connection between his left and right brain). As she talked about that, I felt so sad but I knew I could handle all the struggles that came with it. Then, the next words that came out of her mouth really confused me, "Harrison has Trisomy 18, or Edwards Syndrome." The only thing I could do was look over at Logan to see if he knew what that meant. He looked just...... sad. Pale. I didn't know what to make of it all. I don't remember much of what the doctor said after that except for a few sentences. My mind was racing trying to understand it all while I had my sweet boy laying on top of me. "I'm sure you can tell by the look on your husbands face that this isn't good news." the doctor said. I had to ask her exactly what did it mean that my son had Edwards syndrome. What she told Logan and I shook our lives forever. "Harrison has an extra 18th chromosome. 80-90 percent of babies with Trisomy 18 don't live past their 1st birthday." Our world shattered. Panic, sadness, rage, so many emotions flooded my body. I remember saying, "Oh no, no" and kissing his sweet little head laying on my chest. How could I live without this perfect little boy? Silence filled the room while Logan and I sobbed. The doctor and nurse just let us cry and tried to comfort us as much as they could. None of the doctors could tell us exactly how long Harrison would last but if he did make it past his first birthday, we knew he would have severe mental and physical handicaps.

Nov. 17th

My thoughts in the moment surprised me and saddened me. During all the crying and sadness I remember having the most fleeting thought that I didn't want Harrison anymore. It made me feel horrible. To this day it still makes me feel so terrible that I thought that. But after that thought, I remember feeling how everything was going to be so hard. I think it was just my mind thinking that everything would change so much and I wasn't ready for all that was expected of me. After a while of crying and talking with Logan, I had to put Harrison back in his crib. I felt like I needed to just so I could breathe, mentally. I remembered Sophie and how excited she was to have a baby brother. She had so many friends who's moms were having babies and she wanted one too. I couldn't bear the thought of my sweet little girl having to go through a sibling death. Too many emotions were coming over me; sadness, anger, disbelief, numbness, acceptance, and then it would happen all over again. It was so physically, mentally and emotionally exhausting.

Nov. 27th

We walked out of the NICU and told Logan's mom the news. The three of us just sat there and cried while Sophie hugged us. We didn't explain it to Sophie and we weren't wanting to for a while but she knew something was making us sad and she was so sweet as she hugged and kissed us. After we called our other parents, brothers and sisters, we got in the car to get lunch. I bet everyone there thought a train had just mowed over us. We looked like zombies (fitting, since we went to Zombie Burger). I didn't care though.

 Thanksgiving Day

So much love

The first time I held Harrison was such a wonderful experience. I remember the nurses asking me if I wanted to hold him and I was so excited, then I thought about it and that excitement quickly turned into worry! This baby is only 3 lbs. and 13 oz! What if I hurt him? All those worries went away when he was close to me. Wow, what a spirit he had! I could feel it so strong and he seemed to know how to calm me when he was in my arms. I kangaroo'd him (skin to skin) for probably an hour and it was the best and most relaxing thing I had ever done. I could hardly hear a thing because his oxygen was turned up so high but that was fine with me. My baby was with me and that was all that mattered. I couldn't feed Harrison because of how premature he was and because he was on such a high flow of oxygen so I knew he and I would bond through holding and touch. We quickly did. 

Nov. 10, 2013

I was once told that the NICU was the closest you could come to heaven aside from the temple. I strongly agree with that. All of those brand new spirits together in one area, it is truly amazing. Harrison's room in the NICU felt like a spiritual place. I loved being there and holding him. Logan was able to start holding Harrison after a few days and I remember the first time he did. I loved seeing my husband with his son. I'm so thankful for those sweet moments we were able to have in the NICU. Little Harrison is one of our treasures.

Nov. 18, 2013

No control...

The best way to explain this whole experience is by using the analogy of a roller coaster ride. You have highs, you have lows, you are excited but scared out of your mind, and most of all you have absolutely no control.

Harrison Reed Miller - Just a few hours old

Harrison was born with severe respiratory distress. When I first saw his handsome face, he looked so worried and was almost wheezing while he was breathing. Poor little boy. When I saw him for the first time in the NICU room, he was having some major subcostal retractions. That is when the baby is working so hard at breathing that their whole abdomen just sinks in as they breathe. (Logan, please correct me where I am wrong :)) He wasn't able to make the lining that usually coats babies lungs to help them breathe, so they had to intubate him. They also found that Harrison was very anemic so they had to give him blood. That was the first of our worries. We were just hoping and praying that he would be taken off intubation and the new blood would give him more oxygen. It was about two days later and we thought all was well when we got some more scary news (another low on the roller coaster). Harrison was born with a PDA (you can find out what that is here) and a VSD (find out about that here). More worries and crying followed that news. The amazing NICU cardiologist assured me that a PDA can be treated with medicine and will usually close up on its own. He also assured me that the VSD would be a very easy surgery that we would possibly need to do way in the future, like 6 or seven months. Okay, I could handle that, very doable. Then, we came to another low on our crazy roller coaster.

The doctors did an ultrasound on baby Harrison's head (I'm forgetting why they did this at the moment, it could have been routine or they might have been checking something). The results came back and they were not what we wanted to hear. I remember standing in the room, listening to the doctor talk about the ultrasound, not knowing what the heck she was saying. She started talking about how Harrison could possibly have an Arnold Chiari Malformation (explanation here). She also said because of his "wide forehead" and other features, he could possibly have something else that might be a genetic disorder. They wanted to cover all of the bases so they decided to send off for a karyotype test (found here) to look for genetic disorders. Another test they wanted to do was an MRI. Harrison was too young and unstable with his breathing at that time so they decided to wait a couple of weeks before delving into that test. Logan and I felt as though a train had mowed over us. Our brand new little baby who we felt was perfect in every way, could possibly have some major physical and mental disabilities. We were crushed.

Now, the day Harrison was born, Logan gave him the most amazing blessing. A blessing of life, health and serving the Lord. This gave us much hope. We both knew that the blessing was not coming from Logan, it was coming from the Lord. After finding that Harrison might have multiple malformations, we had no other choice but to hand the situation over to the Lord. We asked for help from all of our family and friends and anyone else who wanted to pray and fast for little Harrison. We knew that the outcome of these tests might not be what we wanted to hear and that was okay. We would still love him anyway. I remembered the strong feeling that I had when we first found out I was pregnant with Harrison, that he was special, and it was making more and more sense to me now. He could very well be one of the most valiant spirits in heaven whose only test in life was to come and obtain a body on earth. If that was the case, I could be strong, I could handle it. I knew that having a child with disabilities was hard, not by experience, but I loved him, so I was more than willing to live for him.

I think about a day had passed when Logan and I were in the NICU with Harrison once more. A couple of nurses were there caring for our sweet baby boy when Logan asked them if he could read the doctors report of the ultrasound on his brain. They pulled it up on the computer and Logan read through the doctors words. I remember watching his face as he read that they couldn't quite see the corpus callosum in Harrison's brain. His face went pale and he asked the nurses why the doctor didn't tell us about this. They didn't quite have an answer. Logan explained to me what other problems Harrison would have with the lack of a corpus callosum and my heart sank. This roller coaster ride was really starting to make me sick. How could this sweet, tiny baby have so many things wrong inside of him? It just did not make sense. We came to the conclusion that possibly the reason the doctor hadn't told us about that was because she didn't want to make us worry even more when they needed further testing to confirm it was true. An ultrasound isn't really a great way for seeing those kinds of things.

And now we were on a plateau. Waiting......praying.......crying......thinking......fasting.......praying.....crying.....and praying. Our friends and family were so amazing and supportive while we went through these trying times. My mother came and was with us during these days and Logan's mom was coming very soon. Logan and I tried to stay close to the Lord as we waited for the results. He gave us comfort and spoke to both of our hearts telling us that Harrison would be just fine. There were days when I was certain that Harrison wouldn't have anything wrong with him and Logan would be just the opposite. And then we would switch roles were I was depressed and crying and Logan was so optimistic. It is amazing how Satan will try and mess with your life even when its something so personal as your child not being healthy. All I have to say about that is 'how dare he'.

Nov. 10, 2013