The Carrithers Family’s NICU Journey

This story is different than the ones we’ve shared in the past. It involves heartache and loss that we haven’t had the opportunity to share before now. October is Pregnancy and Infant Loss Awareness Month and as much as we wish it weren’t so, the truth is that not all NICU babies get to go home with their family.

It’s hard to share a story with an unhappy ending, it really is. But even families who don’t bring their baby home experience the ups and downs of the NICU. They are NICU families just the same and they deserve supported the best way we can. They deserve to tell their stories and have their babies known and remembered. So today, in honor of this awareness month, we are sharing with you the journey shared with us by Danielle Carrithers.

You always hear of things going wrong in a pregnancy or birth, but never imagine it happening to you. It’s like something out of a movie, but when reality strikes, you realize that it can happen to you, and that its more common than you think.

My husband and I found out we were expecting our second child on November 5, 2017 which was a week after our wedding and at that time, we already had a 3 year old daughter. We were completely shocked, but so excited to learn that our family was growing! Right from the start, my pregnancy was different than with my daughter. I was very sick this time, extreme nausea and could only stomach sprite and ginger snaps for the first month of my pregnancy along with having 2 sinus infections and the flu within the first month as well. Over time, things got better, but I still was not at my best. Unlike the first pregnancy, I was having to go to the doctor more frequently because my blood pressure was high, but not concerning, it was just enough to grab the doctors attention.

At one point, I had to see the high risk doctor, which was completely new to me. It made me nervous because I always heard if you were high risk, that meant something was wrong. When we saw the doctor, he didn’t seem to concerned, it was just about the baby’s placenta. The umbilical cord was attached at the very top of the placenta instead of in the middle, like it should be. The doctor said it was abnormal, but as long as the baby was getting proper nutrition and blood flow, everything should be fine. Yes, I was scared but why panic if the doctor isn’t panicking right? Plus, the baby (which we found out was a BOY!) was measuring a day ahead of schedule!

Fast forward to March 2018. This is where things started to go wrong. I feel like it started with a funeral I had to go to. A friend from high school and her husband had twins a month before, and sadly, one of the twins passed away at 19 days old. I went to show my love and support for them. I remember holding my belly and saying to myself that I couldn’t imagine being here in their shoes, burying their child. Little did I know, I would be there 8 months later in the same chapel in the exact same funeral home. A week after the funeral, I went in for a doctors appointment, and my blood pressure was high again and this time, it was the highest its been. So, my doctor started to suspect preeclampsia. So, we drew blood to test for it and it came back negative, so we discussed gestational hypertension. I was told to take it easy, and was sent home. I believe for this appointment, I had just hit the 23 week mark in my pregnancy. Fast forward a week later, and things spiraled. I woke up sicker than ever. Felt like the flu again, but I knew it wasn’t. I could barely stand, I actually had to crawl upstairs to the living room and lay on the couch. I couldn’t eat or drink anything but I was so hungry, I asked my husband to make me some toast and he did. Literally as soon as I ate the last bite, I threw it up. Despite my nausea, I had never actually gotten sick, so this is how I knew things were bad.

I called my mom and told her what was happening and she told me to call my dad and borrow his blood pressure cuff. He brought it over and we checked my BP and it was high. Now I started panicking because I didn’t understand why this was happening. I had such a good pregnancy with my daughter, why this time? What was wrong with my boy? I went into L&D since it was a Sunday morning, got checked in, given a room and was told that I’d be there overnight for observation. That’s fine, overnight wasn’t a big deal, and if it means they’d help my son, then I was all for it! I was given magnesium to try and help along with a bunch of other meds. My mom stayed with me, while my husband kept our daughter at home with our animals. Next day was Monday so my doctor along with the high risk doctor came in, did ultrasounds, blood tests, the works. I’m terrified of needles so of course getting my blood drawn ruined my day already. Anyway, so they stated I needed to stay another night because my BP was still high and when they gave me blood pressure medication, the baby wouldn’t act right.

The next day after another overnight stay, my doctor told me I needed to stay until I hit 34 weeks. Problem was, that same day, I had just turned 25 weeks. I was going to be in the hospital for NINE weeks? How is that even possible? I had a 3 year old, a dog, 2 cats, and a household to care for! NINE WEEKS? What was happening? How do you not go home for that long? I had just lost all of my freedom. I couldn’t leave. Now panic had truly set in. It threw our family for a loop. My husband works really early mornings starting at 3:30 am so our daughter was going to have to basically live at my in-laws. My husband was head of the house now and that completely threw him off. Between work, taking the dog out, seeing our daughter as much as possible, visiting me, sleeping and eating, he was worn thin. Every day, either my husband or my mother in law had to bring my daughter to the hospital to see me. My mother stayed with me as much as possible the next couple of days, but she did have to work also. I started to feel lonely, along with all of the other emotions I felt.

Throughout the week, things kept getting worse. Even confined to a bed, my blood pressure continued to climb no matter what we did to get it to stop. I went into the hospital on Sunday March 25, 2018 and by Thursday, my doctor gave me more upsetting news. I was being transferred to University of Kentucky hospital because my doctor suspected I’d deliver my son within 3 weeks and their NICU wasn’t equipped to handle babies so small. WHAT? So that same morning, I felt awful. I had this pain that felt like a horrible gas bubble, right underneath my heart at the top of my stomach. I was allowed to walk up and down the hall to get it to go away, but it just got worse. I had barely eaten so how did I get a gas bubble? As the day went on and we prepared for my transfer, the pain had gotten significantly worse. I had so much meds shoved in me throughout the course of the week, I couldn’t even keep up. The pain had gotten so bad, I was crying. If I could’ve curled up into a ball, I would have. My transport finally got there and took me down the street to UK. I remember getting into my room with the EMT’s, signing a few papers, and then the next thing I remember, it was the next morning, and a doctor is trying to get me to wake up to tell me they’re taking the baby out.

What had happened? Why were they delivering my son? Why can’t I remember anything? I was scared. I wasn’t understanding. Did I pass out? Yes. I had. They had given me medication for that pain, and I think to help me sleep. I hadn’t slept all week. I started crying because there was so much happening. My husband was at work and my mom was in my ear telling me I needed to wake up, that the baby was coming. I was so out of it I don’t think I uttered actual words. Of course, this was going to be a cesarean section procedure which scared me even more. Surgery on top of everything else? Finally, when I got to the operating room, is when I finally woke up and realized that this was really happening. My son was being delivered today. My husband came running into the OR. My mom had called and told him what was happening. After what seemed like hours, which it really wasn’t, I felt the tugs at my abdomen and then, I heard him. I heard this tiny baby cry. I didn’t see him though, and neither did my husband. He cried twice and then, he was gone. They took him away. Since he was so little, they had to get a breathing tube in him and get him to the NICU right away. Why couldn’t I see my baby? Was he ok? Was I ok? Am I going to die? Everyone was fine for now. On March 30, 2018 at 8:56 am, our son Coleson William was born.

So what happened to cause him to be delivered so early? I’ll tell you. Preeclampsia and HELLP Syndrome. That pain I had that kept getting worse? It was my liver. My liver was inflamed and bleeding. I had found out that right before delivery, my son and I were listed in critical condition. I was dying, WE were dying. I see it in movies, its in our history, women dying during childbirth but I had never in a million years thought it would happen to me. I almost died! How did this happen? What went wrong? HELLP Syndrome stands for hemolysis, elevated liver enzymes, and low platelet count. It’s actually a very rare condition and the only cure for preeclampsia and HELLP is delivery of the baby.

The day he was born, I didn’t get to see him in person because of my fresh abdominal wound and all of the medicines I was on, they didn’t want me to fall and hurt myself. It killed me not being able to hold my baby, but my husband checked on him and even took pictures for me. I was free to call the NICU anytime I wanted to check on him. I had my son on Good Friday that year. I’m not particularly religious, but we hoped that it was a sign. The next day, I got to go up to the NICU. It was just as I had pictured it would be. Heartbreaking. You checked in, went through the security door to wash your hands to avoid getting the babies sick, then we were shown where his nursery was. Of course, I was in a wheelchair and while being wheeled back I saw the many babies in incubators or in cribs. It made me so sad to see that this had happened to so many other families, however a small part of me felt relieved that I wasn’t alone.

My husband rolled me into Nursery 2 and right by the entry way, I saw the name tag on the incubator. It was my son! He was there, still alive. As I got closer, I saw this tiny, purple little baby, laying there with a breathing tube down his throat, micro blood pressure cuff on his leg, hooked up to many different tubes and wires. Some administering medicine, some helping him breath, and others that I didn’t understand what they were. I was in disbelief that this baby was mine, that just 24 hours ago, we both were fighting for our lives, although he was still fighting for his. I tried to hold it together but I was just so full of so many emotions, that I cried. I felt so stupid because I knew that my baby was still alive and I should be grateful. I mean, just 2 weeks prior, my friend had lost her baby. Mine was here, right in front of me, and I’m crying. I happened to get there just in time for the doctors to make their rounds. I was introduced to the team, looking like a disaster. I hadn’t gotten to shower yet, although after a c-section, it was probably the hardest task I’d ever had to do, my hair was a mess, and I was still in my hospital gown. It wasn’t exactly the impression I wanted to give, but seeing as how I almost died, I figured they’d give me another chance. So after introductions, they proceeded to tell me everything going on with my son. He obviously was underdeveloped in every aspect, especially his lungs but they were so far pleased with him. They even told me he was the hit of the NICU, quite the ladies man already. That made me laugh and feel so proud at the same time. I wanted nothing more than to hold him but, given how small he was that was out of the question. I couldn’t hold my baby.

I didn’t even know if I was allowed to touch him, but luckily, I could! I held his tiny hand and admired his micro fingers, as I liked to call them. I put the tip of my index finger in his hand and almost immediately, he wrapped his small hand around it. I felt my heart fill up with love. In that moment, my mom who was with me, told me to look at his monitor. His stats (heart rate, oxygen levels, etc) were improving, as I was touching him. My mom and the nurse both said that it was a great sign, that he knew exactly who I was. Of course I cried again, my son knew me! The nurseries in the NICU fit 6 beds in them, which means Coleson had 5 roommates. They encourage you to talk, sing, and read to your baby but, with 5 other families there, it gets a little awkward. The good thing about sharing a space with others is you make friends and are able to help each other. I actually did make a friend but this early on, we just saw each other in passing and her baby was moved to a different nursery.

The first month of his life, we got to do some things with him, such as changing his diaper, which was smaller than my palm, giving him a “bath” which was really just wiping him down as he was too small for an actual bath, my daughter got to see her little brother for the first time, and the ultimate best thing I got to do, was hold him for the very first time. I was so happy when that happened. It took a while to get him settled on my chest having to move him plus all of the tubes and wires. Being able to feel my son on me, our skin touching, made me feel so full. It was an incredible bonding moment and I didn’t want it to end, but since he was in the incubator, which was helping him keep a normal body temp, I couldn’t keep him out of it all day holding him. Each day was unpredictable, so I didn’t know when I’d get to hold him again, but even a month later, I was still recovering, and I also had a daughter to think about.

A month after his birth, UK Hospital opened their new NICU inside the Children’s Hospital. It ensured every baby would have a private room, and they had a couple of twin rooms as well. We were grateful that Coleson had his own room because that meant that we could have alone time with him and not be afraid of disturbing another family, and they also had a tv, recliner, and a couch in each room which meant parents could stay the night! It was amazing and made me feel better that I could stay all night with him if I wanted to or felt the need to, which I did sometimes, but again, I had another child who needed me. I honestly don’t have a word to describe our time in the NICU. All I can say is that, we made it work. My new routine was waking up, calling the NICU to get a report from overnight, taking care of my daughter until my husband got home, then as soon as he did, immediately going to the hospital to spend time with him. The time I spent there varied on the kind of day he was having along with procedures or whatever else was going on that day. Our daughter, Kenley, was allowed to visit her brother, but a child that young, didn’t understand how sensitive the baby was or that you can’t touch a lot of the other things in the room so it was easier to leave her at home.

We wanted Kenley to get to know her brother but Coleson got to the point where he was extremely sensitive to sounds so, we almost couldn’t bring her plus the hospital has “cold and flu” season where visitors are restricted to try and prevent sickness breaking out which at that point, we weren’t allowed to bring her at all. I’ll sum up the duration of his stay because so much happened, that we’d be here for days discussing it. During my son’s short 7 month life, he had pneumonia twice, 8 surgeries, and a brain bleed (which is common for preemies). Towards the end of his life, he was one of the sickest babies within the whole NICU, his lungs were his main problem. His lungs were so underdeveloped that he ended up with a tracheostomy which is a tube that is placed within the trachea (it is able to be removed so it can be cleaned and changed) instead of having a tube go in his mouth and down his throat. A trach is not permanent (it can be in some cases) but it still allows a person to eat and talk. Of course for a baby, it delays speech and everything, but it helped him breathe better with the help of a ventilator of course.

Coleson wasn’t due til July 10, 2018 and as stated earlier, was born March 30, 2018. When he was born, we were told he’d at least be in the hospital til his due date, which at the time was heartbreaking, but not the end of the world. As he got older and the more things that happened, that coming home date kept getting pushed back farther and farther. It finally got to the point to where I’d stop asking because I knew I was setting myself up for heartbreak. All throughout his stay, with the help of his amazing nurses, doctors, and the childlife specialists, they made a traumatic event as happy and special as they could. Coleson’s primary nurse especially made things so much better for us, especially me. I felt like I had someone who would fight for him and love him as much as I would, and she did. I knew with this whole team, my son was in the best care possible. They were doing everything they possibly could to help him get better. They even did stuff for my daughter as well, right before we had to end her visits. The childlife team got her a birthday present, and his primary nurse made me a special birthday card on my birthday and did the same for my husband.

As Coleson’s 6 month birthday approached, after having seen many families take their babies home, and even seen a couple leave permanently empty handed without their babies, I was discouraged. Which family would we be? He was still on extremely high settings with his ventilator, on many medications, and wasn’t anywhere close to being able to come home. Would we eventually go home together or leave empty handed? As I’m sorting through my thoughts, I was approached by Ashlee, the child life specialist. I had expressed all of my thoughts to her and she asked me something that I wasn’t expecting. “What did you get to do with Kenley as a baby, that you haven’t gotten to do with Coleson?” Interesting question actually. You’d think I’d have a long list of things in mind but actually I didn’t besides saying “take him home”. Then, it clicked! Professional family pictures, something everyone wants with their family. My heart jumped when she said they could definitely make that happen! How exciting right?! She asked if there was anything else and its something that everyone takes for granted. How often do you go outside and not take a moment to enjoy fresh air? I do it all the time. I looked around his room and noticed we didn’t have natural light coming in. Natural light can make you feel so happy and refreshed, at least for me it does. So then, I had a lightbulb go off. I looked at Ashlee and said “I want to take him outside. He’s 6 months old and has never seen the sun, never felt fresh air, never seen a tree, leaf, the blue sky, anything. My son only knows the inside of a hospital.

I knew him going outside was a long shot, given his medical condition along with his machines and everything else. Although I knew it wouldn’t happen, Ashlee told me she’d see what she could do. In the meantime, we just focused on getting him better, and actually talked to a photographer about having pictures made! We picked a day of November 7, and she’d come in and take pictures of all of us and show our NICU journey. A few days later, I came in around my normal time to hang out with Coleson. He was sleeping which was normal for him, with as sick as he was, he never opened his eyes much. Plus, one of his surgeries was laser eye surgery to correct some blood vessels that were growing too much. Anyway, as I was talking to him, some of the nurses and doctors were coming in, saying hello, and generally acting excited. I wasn’t sure why, because I hadn’t heard anything new but I just kind of shrugged it off. Ashlee came in with the biggest smile I had ever seen. The only reason I could picture smiling is if some miracle happened and Coleson had a coming home date, but that wasn’t it. For the moment, it was something better. The team had gotten together and decided that they would arrange for Coleson to go outside. WHAT?? You mean it was actually going to happen? I couldn’t believe it! We had to pick a day where the weather wasn’t going to be too cold (to avoid the risk of him getting sick). October 30, 2018 was the day. The high was going to be 60 degrees, and clear!

The day finally came a week later and my husband and I were SO excited that we got to the hospital as fast as possible. When we came down the hallway, there were so many happy, smiling faces looking back at us. This was a big moment, not just for the hospital, but for us as a family and for the NICU as well. They’d never done this before. They had to pack up EVERYTHING he could possibly need, and off we went. We went out a back entrance to a patio, so we didn’t have to parade him through the main hospital. We honestly weren’t sure how he’d react. He didn’t react well to movement in general (dropped his heart rate, would make himself stop breathing, etc) but turns out, he LOVED being outside. He even opened his eyes to get a glimpse of the world. Turns out, we had an audience. All the doctors and nurses were trying to see through a window, even waving and giving thumbs up! We stayed out for about 30 minutes, we didn’t want to push our luck. We got him back to his room and he went right to sleep, enough adventure for one day. After that, we got back to focusing on getting him home.

3 days later, tragedy struck. My husband, Wes and I were out celebrating our anniversary. We had visited the hospital before we went out, and Coleson was sleeping, having a great day. Since he was having a good day, we felt good about not staying for long, and actually enjoying ourselves for once. We had made it most of the way through dinner and I noticed I had missed a call from the NICU. Then, Wes looked at his phone and realized he had missed a call too. We thought that was kind of weird, but didn’t give it too much thought. As soon as I started to put my phone away, they were calling again. Now, I knew something was wrong. They never called this much. I picked up the phone and the first thing I hear is “Danielle? Are you driving?” This made my heart sink and I said “no, why? Should I be?” and when I heard “yes” come from the other end of the phone, I stood up, and took off running out of the restaurant to the car all while shouting at Wes from across the restaurant that we needed to go. The doctor proceeded to tell me that Coleson had a cardiac arrest and they were working to get him back. My son essentially died. His heart stopped beating, and was still stopped. I told them that I was on my way and that they had better do everything in their power to get his heart beating again. Now at this point, my heart has shattered and despite that, I tried to hold myself together, but I couldn’t. I broke. Wes was trying to pay the bill as fast as he could and while in the car, I had hung up with the doctor and had called my mom sobbing. She told me to stay calm and get to the hospital as fast and safely as I could. Well, we got there, but we won’t talk about how many traffic laws I broke and how many people I had cut off while driving.

I had forgotten how long it takes to park in the garage, walk across the pedway to the main hospital, walk through the childrens hospital lobby into the NICU lobby, get checked in and then walk all the way to his room. Wes dropped me off at the front entrance and told me to run, get there as fast as I can, and he’d park the car. I ran, as fast as I could. I didn’t have time for formalities and I certainly didn’t have time to check in. I ran to the NICU lobby, rang the bell and when the door opened, I shouted that my son was dying and to let me in. After 200+ days, I knew the staff knew me and I was hoping they’d let me in and give my pass to my husband when he came in, and they did. They could tell something was wrong. I ran to his room, feeling like I was going to faint and feeling like my legs were going to give out but I needed to get to my son. At the start of the hallway, I saw his doors wide open with a staff that filled the hallway. I see about 30 heads turn and look at me. I freeze. This is the end isn’t it? I was never going to see my son alive again. I knew it but, I continued walking forward. Then, I turn to see if I can even get a glimpse of him, but I can’t. There are so many people. I waited. They’re still doing chest compressions and administering medicines. About an hour goes by, and the doctor finally comes out. He’s back! My son is alive, his heart is beating! He is knocked out from everything but he’s alive!

The moment of relief was very short lived. The doctor had told me everything that had happened. They weren’t sure why, but his potassium had shot up way beyond normal levels and was more than likely the cause of his cardiac arrest. Of course, they told me they’d find out what they could but then, she looked at me and said “I’m afraid that you’ll need to set a plan in place in case this happens again” which meant we had to decide if we would want them to resuscitate him if this happened again. Normally, I wouldn’t have given it a second thought, but trying to bring him back, it took about an hour (which isn’t good), and doing chest compressions, he ended up with 3 broken ribs. My poor infant baby had broken ribs. He had 3 IV’s in place and at this point was on about 20 different medications. I had always known in the back of my mind that my son might die, just after 7 months, you start to have hope you know? When the doctor was telling me everything, 7 months of trauma, emotions, stress, anger, depression that had built up finally spilled out. I cried and it wasn’t just normal crying, I was borderline screaming. I had my head buried in a trashcan screaming and feeling like I was going to throw up and pass out at the same time. I got taken into an empty room (which just so happened to be our friends’ room that we had made in the NICU and they had taken their baby home the week prior) and the nurses made me lay down to pull myself together. Every possible emotion someone could feel, I was feeling. Guilt mainly. Would things be different if I had been there with him instead of being out having fun? My son essentially died alone. The thought of that shattered my heart repeatedly. I should’ve been there for my son, but I couldn’t think like that. I got up and sat with my son. Of course, he was knocked out but there was NO way I was leaving him now. This was it, I knew this would be one of the last times I’d see him but of course I still had a little hope that maybe a miracle would happen. A couple of days before this happened, I had asked for a clear sign of what we should do due to the bad days he had been having. We had been told by doctors that his lungs were going to take many years to get to where they needed to be, and something new, we had learned that his brain wasn’t growing. He was at risk for cerebral palsy, mental retardation, they didn’t think he’d ever walk or talk or even be able to feed himself. We had been struggling for a few weeks before the cardiac arrest if we should just withdraw care, or try to get him somewhat better. How were we supposed to make a decision like that? I needed a sign to be sure. The cardiac arrest was my sign. That was my son telling me that he couldn’t fight anymore. He was tired.

After that event, things got worse, very fast. His kidneys started failing, his heart had now taken a hit, his lungs were still bad, and it just seemed like everything was shutting down. He was dying. His cardiac arrest happened November 2, 2018 and I had temporarily forgotten about our scheduled family pictures on November 7. The C.A. happened on Friday, he had made it through the weekend but as I said, things were getting worse. When Monday came around, the NICU was calling again. My heart sank. My worst fear had happened. He died without me there. I answered, and it was our favorite doctor, Brendan. He was always one to have a positive outlook no matter what but, when I answered and he started talking, he didn’t sound like himself. He sounded, grim. He called asking when I was coming in because the team needed to talk to me. I knew we were running out of time. I went in, met with the team and they told me that options were running out. Keep in mind, we’re close to the holidays here. I told them that if he lived that long, we’d withdraw care after the holidays. We just wanted to spend this special time with our son, but they told me he wouldn’t live until next weekend because of the cardiac arrest, his organs were failing, and he was requiring medicine more frequently and he was maxing out on some of them. What other choice was there? He was dying. How does a parent choose to end care for their child? How are you even supposed to decide something like that right? You’re supposed to do everything in your power to help your child but unfortunately the only way I could help my son was to give him a peaceful passing.

Peaceful passing in place, we chose to do it the next Friday which gave us a week and a half. We only had a week and a half left with our son. As heartbreaking as it was, I chose to push my heartbreak down and enjoy my last days with him. This plan in place, we were allowed to have anyone we wanted come to the hospital to visit us and him of course, despite cold and flu season rules. We had many visitors and I basically lived at the hospital for the week. We brought Kenley to visit her brother and they got to do artistic activities together along with us too. The hospital did everything they could to make our last moments special. The last days went by, each day a little worse than the previous, and then family picture day came, which was Wednesday, which only meant we had 2 more days left. I was so nervous that Coleson would be having a bad day and we wouldn’t get pictures made but, turns out, he was having a good day. I considered it a sign. I considered it his gift to me, a way of him saying “I’m sorry I won’t be here much longer mommy, but I will tough it out so we can have great pictures to remember forever”. Kenley actually lost patience with pictures quicker than Coleson did. He did such an amazing job. We got some great memories and left him alone the rest of the day.

Now, Thursday is here. I’m getting more nervous but I’m still pushing it down so I can enjoy my time. Thursday was a hard day because this is when we had to tell Kenley about what was going to happen to her brother. How do you tell a now 4 year old that her brother is going to die? Does she even understand what “death” means? We enlisted the help of the child life specialists and even a doctor and a nurse to help us tell her. The conversation was simplified as much as we could simplify it. We told her that her brother was a very, very sick little boy and his body doesn’t work the way it should, which is why he’s sick. We also told her that the next day, he was going to die. The word death does seem extremely harsh to use on such a small child, however, you have to be blunt, so they understand. If you use words that can be interpreted as something else, such as “pass away” or something similar, a child will more than likely misinterpret it. So, we told her that her brother will die, (and we tried to explain death as best we could) and she didn’t really react. She went back to coloring which kind of upset me because I wanted her to understand and appreciate the last moments she had with her brother. However, there really wasn’t anything else we could say or do to make her understand. After that, my mother-in-law took Kenley home, Wes went home that evening, I spent my last night with my son.

That dreaded Friday came and to me, I couldn’t even think of it as the last day I’d ever get to see, touch, kiss, or just be with my son. We were choosing to wait until after nightshift came in (7:00 pm) for us to go through with this since his primary nurse wanted to be the one to do this. She wanted to make sure she was the one who made him comfortable, and of course, she wanted to see him and help us through the last moments. All day Friday, we had our last visitors, we packed up his belongings, and just held him. I read him a book, and our immediate family gave him all the love that they possibly could. The doctors and nurses we had come to love over the past 7 months all stopped by to give their condolences and give him some love. A lot of them cried because well, its hard on them too. When it close to shift change, his nurse from the day tried to prepare me for what was going to happen. No matter how many times the procedure was explained, there was no way I was prepared. A few moments later, I saw them. Nightshift was walking in, and my heart sank. It was happening, this was really going to happen. My son was going to die today.

I walked out into the hallway to say goodbye to everyone. Up to this point, I had held myself together. I didn’t lose my composure until one of the nurses walked up and asked, “are you ok”. My lips quivered and I said, “I’m scared” and telling her that made me cry. I was able to admit it, I was so incredibly scared. How do I continue life without my boy? How do I wake up tomorrow morning and go about my day? How do I say goodbye? After nightshift arrived, they still had to do their normal routine of giving notes from the day, explaining plans, etc. While they did that, all of us (me, my husband, my parents and his parents) all took a few minutes each to hold him and say their goodbyes. I even let his primary nurse hold him for a few minutes and say goodbye and even one of our favorite doctors. My husband and I had decided I’d be the one to hold him while he died, and my husband would be right there next to us, holding his hand. They got us set up, me in a big chair with pillows to help comfort him and me, and they gave him to me. Immediately, my heart sank. In a few minutes, I’d see him take his last breath. I’d see him turn blue and die in my arms. The doctor was required to give us the rundown of everything, even though we already knew what was going to happen. They were going to give him a medication that was going to relax him to the point of knocking him unconscious basically. After that, they would turn his ventilator settings down to half of what they were, wait a few minutes, and then turn it off completely. Of course, after the ventilator was turned off, he’d pass away naturally. After it was explained, I felt like everything was going in slow motion but fast at the same time. I look up from my son’s face and see our room was full to the max. Our parents were with us, with Coleson’s nurse, the doctor, respiratory therapist, along with several other doctors and nurses who we couldn’t imagine not being there. The medication was administered, his breathing slowed down, the ventilator was turned to half, and I noticed his lips were slightly blue. This was it, he was dying on me. In a few moments, my son’s spirit would leave his body. Then, I hear the doctor very quietly tell RT to turn the ventilator off. I wanted so desperately to shout NO and turn it back up, but I knew this was the only thing that could be done for my son now, was to give him the peaceful passing he deserved with all of his loved ones with him. I sat and watched his chest, ran my fingers over his face, kissed his forehead repeatedly and told him as many times as I could that I loved him. I didn’t want him to pass hearing anything else other than “we all love you”.

At 8:49 pm, my sweet Coleson was pronounced dead. I clung as hard as I could to his body and cried. We removed all of his tubes and wires except for his trach and his feeding tube that went into his stomach, just to prevents leakage (gross I know). Even with Coleson gone, we got to give him his last bath, dress him, and hold him for as long as we wanted. I could’ve picked his body up and carried it home with me. How was I supposed to let him go? After the bath, our parents, besides my mom, left. Wesley actually left too, he said he couldn’t be there any longer, which I understood. I honestly didn’t care if he left, I just wanted to be with my boy. I sat in a chair and held him. He got cold and blue, but I didn’t care. We had some doctors come by and hold him again and my mom held him too. We sat for a few hours and told stories about him and his short life. They had asked me if we were ready to send him to the morgue and even though I wasn’t ready, I said yes. I knew the longer I sat there, the harder it would be to go home. The morgue worker came, swaddled him just like a newborn baby, covered up the mobile crib with a blanket and down we went. When we got to the morgue, they wheeled him into the “viewing room” so we could say our final goodbye. I picked him up, snuggled him as hard as I could, cried again, and he was gone. My mom and I walked back to his room to pick up the final suitcase and left. I remember walking through the hospital, onto the pedway, not saying a word to my mom and something caught my eye.

What was it? Snow. It was the first snow of the season. I love snow, it makes me happy. As I saw it, I wanted to smile, but I felt it’d be disrespectful seeing as what I had just gone through. Snow gently fell to the ground and I said to myself that this was Coleson sending me another gift. I was so sad, that he sent me something he knew made me happy. It was my son, he was communicating with me, at least, that’s what it was to me. I got into the car, and my mom drove me home. I never said a word, how could I? What was I going to say? I went into the house, Wes was asleep and Kenley was at my in-laws. Even though Coleson’s abrupt and life-threatening entrance into the world, flipped our lives upside down, his death flipped them upside down again. I’m pretty sure the only reason I slept that night was due to pure exhaustion. That was it. My son was gone, my heart was shattered, and a piece of me had died with him.

I’m pretty sure my son’s death affected me the way it would affect any parent. I felt every possible emotion someone could feel in a situation like this. I felt like my life was over and that I had nothing to live for but deep down I knew that wasn’t true. I had a daughter who needed me, a mother who would be devastated if something happened to me and many other family and friends. Over the course of this, my husband and I had a strained relationship, we were barely on speaking terms. We came together for Coleson’s death and funeral, but after that, we became strained again. We were told over the course of our NICU stay that having a medically ill child can either make or break your relationship, so to speak. Some couples, the death of their child, brought them closer together, others, it tore them apart. For us, it was tearing us apart. I was there with Coleson every single day except for the day he was born, and one day that I had pink eye and the beginnings of an upper respiratory infection. 225 days my son was in the NICU at University of Kentucky Children’s Hospital. 223 days I went and saw him at the hospital despite everything else happening in life. 225 days of advocating for him, trying to do what’s best.

We are just a few days away from the one-year anniversary of his death. Each day it gets closer, my anxiety gets worse. I don’t want to be reminded of that fateful day. I don’t want to relive that day by each hour. This past year has definitely had its ups and downs. It was mainly learning how to continue our lives without our boy. Unfortunately, two months after Coleson died, my beloved dog died as well. Of course, that just added salt to the wound. For people who are going through a child loss, or any kind of loss, I definitely insist on going to grief therapy. If it wasn’t for grief therapy, I honestly don’t know where I’d be right now. Not only did I do grief therapy, I still go to a regular therapist as well. Please do not be afraid to tell someone how you feel. Two things that helped tremendously was therapy, and a great support system. I also encourage to get involved in trying to help other families going through loss, which is what I’m doing by typing this. The NICU life is hard and exhausting. You will see things you don’t want to see but if I gained anything from this, if my son gave me the gift of anything, it was showing me that I’m stronger than I thought I was. I don’t consider myself strong, but I do know that if I can survive the loss of a child, I can survive anything. Before Coleson, I was shy, kind of quiet, very intimidated, and afraid to stand up for people and things I believe in. My son being in the NICU, changed all of that. When your child doesn’t have a voice, you learn to be their voice and having to speak for him, changed me into the person I am now. If I can give any NICU family a piece of advice, it would be that no matter how tough it gets, you CAN get through it.

Please join us in praying for this family as they anticipate the upcoming anniversary of the loss of their sweet son. Support them in remembering their son, Coleson, with them and hearing their story.

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