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