Dylan was born on 11/13/2023.
I remember the doctors telling us it would be a miracle if he made it to delivery date. It would be a miracle if he was delivered alive. It would be a miracle if he cried when he was delivered.
Our sweet Dylan was a MIRACLE.
He surpassed all of the doctor's expectations. They said they would be shocked if any of the above happened. Because of this, Jon and I quickly became terrified when he was born alive and crying.
Would we now have a special needs child? This wasn't our plan, God. How are we going to take care of him and our toddler at home? How are we going to devote time to both children?
When Dylan was born, he was brought over to the warmer and wrapped up just as I requested. When the nurse tried to hand him to me, I couldn’t do it. All I could do was cry as I was laying there. The nurse asked Jon if he wanted to hold Dylan, and Jon took Dylan and held onto him.
All I remember was Jon repeating to me over and over again, “Emily, it’s not that bad, he’s not that bad!” And when he said that he was saying it because we didn’t know what his abnormalities were going to be exactly. We saw one ultrasound photo where it looked as though his face had some abnormalities, but then other photos looked almost “normal.”
I finally took Dylan from Jon when I felt ready enough. I was still sobbing at this point. I couldn’t believe he was here, but all I could think was when is he going to be taken from us? I think Jon and I both were thinking this.
While I was holding him we had several visitors, my parents were already at the hospital waiting for me to deliver. We called them about an hour after I delivered Dylan, and they came in to meet their newest grandson. My aunt, Audrey was also at the hospital as her daughter was in the PICU, so she came over to meet Dylan. And my cousin, Lindsey works at the hospital, so she stopped over to meet him too.
At some point, I don’t remember who was still all visiting at this time, but I do remember my mom at least being in the room, a nurse came to grab Dylan from me to take measurements and weigh him and all that. As she was doing this, she had to unwrap him. I remember Jon getting up from the far side of the room to go look at him, and he just came back to sit down and started to lose it. My mom sat next to him and comforted him, but it would never work. None of this was fair.
When I knew why Jon was getting emotional, I knew this wasn’t good. I knew that Dylan’s limbs were worse than we thought.
It just wasn’t fair.
Why us? This happens to someone else out there in the world… NOT us!!
Jon and I decided we needed to have the neonatologist come in and speak with us about what our options were, and what she was seeing with Dylan. All of it really was a blur.
The neonatologist that came in to examine Dylan was the same doctor that we met with in September. She examined him and told us all of her findings:
- Small eye openings
- Limb deformities (as also seen on ultrasound)
- Clubbed hands / feet (which we weren't sure how / if these could be corrected)
- There were also internal things going on, but she wouldn't know more about this unless she took him to the NICU to examine him further to do imaging.
- Cleft palate (so he would not be able to eat without a feeding tube)
She explained that in order to look further into the internal things going on, she would need to take him to the NICU, but she didn’t know if this would do anything to extend his life or improve his quality of life.
When we were done talking with her, Jon and I talked it over between just the two of us. We didn’t allow anyone else in the conversation with neonatologist and us - we wanted this all to be a decision that WE were making.
The rest of the afternoon was spent with me chasing after thoughts running through my mind. There were also so many tears shed and many people to love up on Dylan.
By the evening, I was moved from the delivery room to a recovery room.
My cousin, Jennifer came to visit first, then my in-laws were watching our other son, Rhett and they brought Jon’s sister, her husband, and their son with to meet him as well since they were in from out of state.
As they left, my parent’s pastor, Jeremy from their church came, and he baptized Dylan that night. Reading scripture of Psalm 77.
After Pastor Jeremy left, we had a few more visitors. My uncle came to meet Dylan and love on him, and my brother and his wife also came to the hospital for a long while to hold him.
I allowed Jon to go home and get rest because he wasn’t feeling well and he got ZERO sleep the night before. My mom stayed with me at the hospital that night.
We learned quickly that Dylan wanted to be held, or he would cry. I ended up having a nurse take him to the nursery so that I could get sleep. If he was in the room, I knew I would hear him and I think that it would have made me more emotional, and I wouldn’t have been able to sleep.
His cry was such a sad sound to me in those moments because I didn’t know how long I would hear it for, but I also always wondered if he was in pain. I wondered how I could help him.
I remember trying to bottle feed him, and he wouldn’t take it. He wasn’t eating. I’m not sure how well the rest of his body was really functioning. There were just so many unknowns. All of it just breaks my heart that we didn’t know.
The next day, Jon came back to the hospital. My mom left, and Jon’s mom came to the hospital and spent time with us. She was there when we spoke with the neonatologist again. And she was there when we had palliative care come in to speak with us. And she was there when we decided we were going to go home with hospice care.
Let me say, this was one of the HARDEST decisions I have EVER had to make in my life. If you think it would be easy, you are seriously mistaken. And you may think you would know what you would do if you were in my shoes, and you can judge me all you want for my decisions… but you just don’t know unless you’ve lived it.
Before we could be discharged, we had to pick up some medications for Dylan from the hospital pharmacy, Morphine and Ativan. We would be taking these home, and we would be given instructions on how to properly use them and when to use them in more detail when hospice came for the admitting visit.
When it came time to discharge me and Dylan from the hospital, it was about 11:30am on November 14. Less than 24 hours after he was born. Sounds crazy that it was so soon, but I think they wanted to get us home to be able to spend as much time with Dylan as we could.
We notified the hospital that we didn’t have a car seat for Dylan. They told us he would be too small for one anyway, and he would really be safer in my arms than a normal size car seat. I held Dylan all the way home in the back of our vehicle. The hospital assured us that nobody within the hospital would stop us for not having a car seat.
When we got home, it was maybe 5-10 minutes, and the pediatric hospice nurses were there to do Dylan’s admitting visit. My mother-in-law was also there for the visit, which was amazing to just have an extra set of ears available for us. Hospice took a heartbeat recording to put in a bear that they would later bring to us. They also just got other pertinent information from us and from Dylan regarding his vitals.
Later that day, I tried feeding Dylan several times. He wasn’t taking a bottle well at all. At some point during that day, I finally got him to take formula out of a medicine syringe. I would always fill it to 5 ml hoping he would take it all, and he usually would get down about 2-3 ml.
That night, my cousin Lindsey who works at the hospital came to stay at our house. She wanted to let Jon and I get some sleep and she said she would stay up with Dylan all night. Lindsey works on the congenital heart floor for pediatrics, so this was helpful for us in the fact that Dylan DID have a major congenital heart defect. We never looked into the full extent of it after he was born, but Lindsey watched him closely that night.
I woke up early that next morning on November 15, and Lindsey gave me the full lowdown of how the night went. She said she tried to feed him, and he was taking a little from the syringe. He was making wet and poopy diapers, and she even said that he peed on her one time. She asked if she could come stay with us again that night, and I said I would love for her to.
Late morning, a couple of my girlfriends Morgan and Darcy came to visit. They both held Dylan and watched me attempt to feed him with the syringe. Morgan was holding Dylan and started crying when I finished feeding him. (Unless she reads this, I don’t think she’ll ever know how strong she made me feel when she did that. It made me feel like I was recognized, and I was one hell of a mom in that moment.)
After Morgan and Darcy left, about an hour later our dear friend Bridget came. She is a newborn photographer, and she took photos of Dylan for us and some of us with Dylan as well. These photos will forever be such a keepsake to us. When she was done taking photos, I remember her sitting down and talking with me and crying that it wasn’t fair that we had to go through this. She just held onto Dylan and looked at him and it just made me feel like my baby was just so loved.
When Bridget left, Jon and I could tell that Dylan was starting to get agitated. We were beginning to wonder if he should go back to the hospital to be seen in the NICU, or if it was time for him to have a dose of one of the medications we were sent home with.
About an hour and a half after Bridget left, we got a visit from a hospice nurse. I believe it was about 1:30pm on November 15. A few minutes into the visit my mother-in-law also stopped by.
During the visit, I sat on the floor holding Dylan and the nurse sat next to me. She started by listening to his heartbeat. After she was done with that, I began to explain that he started to become pretty restless after the photos and I thought his color was changing quite a bit. I let her know we were questioning as to whether or not we should give him a dose of one of the medications.
As I was sitting there, the room was silent. All I could hear was Dylan, and he let out the biggest gasp searching for air. As I was holding him, I just tucked my head into my arm and started to sob. I told the nurse “it’s happening, he’s going to die today, isn’t he?” She looked at me with the most somber look on her face and said, "I would expect that he would pass away within a few hours or by tomorrow.” It was then that I just kept on crying while holding him.
I asked the nurse if we should give him morphine. She said at this point it would probably be a good idea to make him comfortable. Jon’s mom went to the kitchen to grab the medicine. As the nurse was getting it out of the bag ready to give it to Dylan, I couldn’t even hold him anymore. I passed him on to Jon’s mom, and watched as the morphine was given to him by mouth.
Jon’s mom held him for a bit, and I began to call my parents to tell them they needed to get over to our house immediately. I called my cousin, Lindsey to let her know… but she said she knew she needed to be at our house and was about 2 minutes away already. I tried calling anyone I knew of in that moment that I wanted to be there. Then I let my mother-in-law know that I wanted Rhett there to hopefully really meet his brother before Dylan was gone; she left to go get him from daycare and passed Dylan to Jon.
Shortly after that, car after car started to appear in our driveway. Person after person started to appear in our house. If you were to drive past our house it would look like a party was going on, but it was far from a party.
It took awhile for Dylan to stop breathing. His breathing was slowing down over time, and the nurse would listen to his heart every now and then. Sometimes it was almost like he was tricking us, and you'd see him breathe randomly every 5 minutes... but then it came to a halt...
Dylan passed away in Jon’s arms at about 3:00pm on November 15, 2023 into the arms of Jesus. He was surrounded by his parents, both of his grandmas, his brother, my cousin Lindsey, and hospice. Everyone else slowly trickled in and made it after he passed away.
My sister and my niece were on their way from Colorado to come and meet Dylan and to spend time with us, but they had no idea yet that Dylan passed away. I called my brother-in-law to see if my sister left yet, and he let me know she did. I explained that Dylan passed away, but I didn’t want my sister to find out during her layover.
I kept Dylan at our house until my sister and niece got here from Colorado. I at least wanted my sister to be able to see him and hold him. With my niece only being 4 at the time, I wasn’t sure if my sister wanted her to see or hold Dylan.
I figured when my brother and his wife picked them up from the airport, they would have filled my sister in on Dylan’s passing, but this was not the case. My sister and niece got to our house, and she had no idea. I let her know immediately that Dylan passed away, but he was here for her to hold. I just wasn’t sure if she wanted my niece to hold him or see him. When my sister told me it was okay, I told my sister I was going to tell my niece what happened first.
I went into the living room, and my sister held Dylan and walked into another room. I called my niece over to sit on my lap, and I said to her, “I have to tell you something… Dylan went to heaven today… Do you know what that means?” She told me, “That he died?” I said, “Yes, but remember he was really sick even before he was born, now that he is in heaven he is all better. And you know what, his body is still here if you want to see him, but he’s made brand new in heaven. If you want to hold him though, he’s here. Your mommy has him in the other room… Do you want to see him? Do you want to hold him?” She said, “okay.”
My sister brought Dylan over for her to hold, and I remember my niece saying, “Awww.” Then she said, “Mommy, I really think he’s just sleeping.” The innocence of a child is the most pure and sweetest thing ever, it broke my heart and made me smile so much all at once.
After my niece was done holding Dylan, my brother and his wife took her out for dinner, and my cousin Lindsey called the funeral home for us so they could come get Dylan. My mom called Pastor Jeremy to come over and pray with us when the funeral home arrived as well.
When they arrived to come get Dylan, we handed the funeral home the outfit we wanted Dylan buried in. Pastor Jeremy prayed over all of us. Then it was time. It was time to say goodbye to our boy.
This was the part I was dreading. I was thankful it was nighttime. I didn’t want our neighbors seeing a hearse in our driveway.
The funeral home director asked for Jon to bring Dylan out, and I was not going to let my husband do that alone. I walked out there with him.
All I can remember is the funeral home director saying, “We are going to take the best care of Dylan, I am so sorry for your loss.” Then I looked in the back of the hearse, and I thought... No parent should have to do this.
There was a baby size “stretcher” if you will, with a tiny teddy bear at the head of it, and Jon laid Dylan on that “stretcher.”
That was the most traumatic goodbye I’ve ever had.
When we went inside, I sat on the couch and I burst into uncontrollable tears. I couldn’t hold them back. I couldn’t make them stop.
But somehow…
They finally did stop.
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