Camron’s story told by his Mom.

 

Should we try for a third baby? That was the question on our minds in late 2020. Dustin and I always said we wanted 3 children. Already having a son (Jaxon) and daughter (Mackenzie) we were looking forward to our "tie breaker." Coming off of two complicated pregnancies we put a lot of thought into trying for a third baby but ultimately decided this was our dream and went for it.

 In January 2021 we were absolutely thrilled to find out we were pregnant with a baby boy! We had just moved to our new town and I needed a local OB so I found a highly recommended one on the local Moms Facebook group and made my first appointment. I remember sitting on my bed, 6 weeks pregnant, making this appointment and that’s when doubt started to creep in. Maybe because I was moving to a new doctor or maybe it was my intuition but I felt uneasy.

Even with some doubt in my head we were so excited to be having another boy. I was excited that Jaxon would have a brother to share his room with. I was excited to pull out all of my baby boy clothes that I hadn’t used in years. I was just excited to be completing our family. I kept my initial feelings of doubt to myself for the time being and just celebrated with our family and friends. About 2 months into my pregnancy I found out my neighbor Melissa was pregnant with a baby boy and due 10 days before me! This made us so excited to get to bring two little best friends into the world together and to go through all the ups and downs of pregnancy together. For about another month we got to celebrate the future we wanted together but this quickly unraveled.

In the next few weeks, I remember thinking I was going to get preeclampsia again, an illness that I experienced with our first-born Jaxon and caused him to be born at 34 weeks. I didn't have any reason for thinking this so early but I was so very sure I was going to get it again. In fact, I confided in Melissa a few times that I felt this way and I had a bad feeling. She was the first person I told about my doubts.

A few weeks later Melissa suffered a late term pregnancy loss. My heart broke in half for her. Not only was her dream of completing her family with this baby crushed but our dream of bringing two best friends into the world was gone. For some reason the moment she told me that she lost her baby boy, I felt an immense amount of dread. I just couldn’t see the end of my pregnancy being successful. Not because she suffered a loss but because I had been feeling this way for a while and kept it inside. I tried to be there for her as much as possible but my own doubts and the fact that I was still pregnant felt like a weight on my chest. I had so many fears about this pregnancy but I wanted to be there for my friend and I pushed them down again.

Another month went by and we were scheduled for our anatomy scan. I can remember having a conversation with a family friend. She asked how I was feeling and I said, " I'm okay, I’m just taking it day by day, looking forward to this baby being viable." I remember thinking to myself " why did I just say that?" Why did I think this baby needed to make it to 24 weeks to be viable? Looking back on it, I feel like subconsciously I knew all along.

About a week later, we went to our anatomy scan as scheduled. I was a ball of nerves going in but also excited to see our baby boy! I really did not let Dustin know of the immense anxiety I was feeling up until this point. As I lay there on the sono table watching the technician scan I found myself reading all the measurements. I kept noticing many of the measurements were almost 2 weeks behind where he should be but she wasn’t saying anything about it. 18 weeks, that’s what he was measuring. I started counting my days in my head, did I get my period date wrong? Did they calculate the due date wrong? I knew those weren’t true, I knew he was too small. Jaxon and Mackenzie had been small as well but never 2 weeks behind. The tech then told us we would go into the room to speak with the doctor. As we sat there waiting all I could replay in my head was "18 weeks." But that’s not right he’s almost 21 weeks.

The doctor called the next day and told us she wanted us to see a Maternal Fetal Medicine (MFM) high risk OB as his intestines look lighter than normal on the imaging and she wanted them to check it out on better machines. I said okay, but what about his size? Our doctor assured us that they sometimes read small and we will do another check in a few weeks to assess growth. I could have just rolled over and not gotten back up right then and there because deep down I knew a few weeks would not make a difference and this was going to be a complicated pregnancy.

In about 3 weeks we found our MFM practice and had our appointment set up. I do not remember why but Dustin could not come that day. I was in the room and the tech came in and started scanning, she finished and said "Dr. Gary likes to scan his patients, I am going to go get him." He was such a nice man with a sweet demeanor. As he scanned he assured me his intestines were fine and the color was not a concern, but his growth was. I still remember him looking at me and saying "you are going to have a premature baby." He explained that his cord flow was not what it should be but we will monitor it closely. He explained he wanted to get me to 32 weeks and then any week after that would be a gift. I just started crying. I said I wasn't surprised about having another preemie but still it's hard to hear. He comforted me and promised me they would do everything to get us as far as we can in this pregnancy. We set up bi-weekly scans, one at the MFM and one at my regular OB to have the most eyes on our little baby.

I immediately called Dustin sobbing. Since we had a preemie before Dustin assured me we could do it again. I mean, 32 weeks is only 2 weeks earlier then Jaxon was born. Surely, we could do another round in the NICU right? I felt a loss that we would not have a peaceful relaxing birth for our last baby. That dream was over.

That weekend I was 24 weeks. I just felt sick to my stomach all day every day. There was one day that weekend that I took my daughter Mackenzie outside to play with bubbles. It was just me and her sitting there. I took a video of her playing and shared it with family and friends. In my head this was the last moment of peace I had for many, many months.

The next week I went for a doppler at my OB. His heart sounded fine and I was sent on my way. I was 25 weeks.

The next week was the last week of school so it was an exciting busy week. I had my OB doppler scheduled that Thursday.  I went in and laid down connected to the monitors. After about a half hour the doctor came in saying it all sounded fine and she will see me next week.

The day after, Friday, was my MFM sonogram. Both kids were home for summer vacation and Dustin was working from home. I left the house and told them I would be back after my appointment. Covid regulations prevented the kids from coming to appointments so Dustin had to stay with them. The sono tech came in and started measuring the cord blood flow on the screen. She finished and told me to stay put as she went and got the doctor. She brought in a woman doctor I had never met before. She started explaining to me that the umbilical cord was not allowing enough blood to get to the baby which was causing him not to grow. He was almost 26 weeks but was measuring 23½ weeks. I think this is where I went numb. I didn’t cry or speak or anything. I remember her asking me if I had a hospital bag with me and I said no but I live close. She said to go home get a bag packed ASAP and go straight to the hospital to labor and delivery. After that I remember calling Dustin telling him I was coming home only to get a bag and leaving. He was stunned. I don’t think either of us saw this coming. I called my mom to come out to watch Jaxon and Mackenzie. As soon as I got home I ran upstairs packed everything I could think of, kissed my other two babies and went to the hospital alone while Dustin waited for my mom to get there.

I had no clue where I was going as we had never even been in Stony Brook Hospital before. I asked the woman doing Covid screenings and she directed me towards the front desk. They checked me in, showed me where L&D was, and I walked into triage. They told me they received a call from my MFM that I was coming and they rushed me into a room and hooked me up to monitors immediately. That’s where I sat for what felt like hours. Just lying there listening to our little boys’ heartbeat. I don’t even remember when Dustin got there. Again, I was zoned out.

A woman doctor from our practice, came in and laid it out on the table for us. We were a bit intimidated by her at first. She told us he is not growing and cord blood flow is stopping altogether in places. She was worried the flow would go reverse and the baby would die in utero. She told us to prepare ourselves and that we might lose this baby.

It’s weird because hearing her say this almost made me feel validated. I never told Dustin how much I believed her when she said that. Part of me felt like I was preparing myself this whole time for losing him. Maybe that’s why I was so calm. I'm still not really sure.

From there, we were put in a room where they administered steroid shots for his lungs. The woman doctor let us know we could get these shots or we could leave with things as is and he would pass away in my body. All I thought was, I do not want a dead baby in my stomach. I don’t want to birth a dead baby. I want him to be born alive and then what happens from there will happen. I still wonder if we did the right thing sometimes. She came back in to check every hour or so. I was tested for preeclampsia which was negative. Eventually she let us know she saw some improvement in heart beat and blood flow due to the steroid shots and I would be moved up to anti-partum to be monitored until our baby boy was delivered. We were then brought up to what would be our new home for the next week.

As we settled in, we met our nurse staff and some NICU doctors. They walked us through what it would be like with a Micro-preemie in the NICU. We were concerned because he was so small they might not be able to help him but they assured us that he would be helped in every way he could be. He was now 2 weeks past viability so hospitals could help.

This week was a literal blur to me. I couldn’t even tell you what our day to day life was. Dustin and I worked from the hospital room remotely in between scans and doctors’ visits. We were right next to the helicopter pad so we would try to catch videos of them landing for Jaxon and Mackenzie to watch. We watched TV and just waited for any news on our baby. I remember just rolling over and laying there to feel him wiggle just to comfort me. It was like he was reminding me he was still alive in there and to keep fighting. One day a nurse came in and asked me what his name was so she could write it on the board. I remember saying "I guess Camron" since we hadn't really solidified a name but this was our top choice.

A week passed and now I was 27 weeks pregnant. We were having our first growth scan since we got here. This is when we met Dr. Bernasko. He sent us for our scan that morning. I wanted to believe we would be here for weeks with our baby slowly but surely growing but I couldn’t get there mentally. We had our scan and then came back to the room to await Dr. Bernasko’s assessment.

Finally, he came in and let us know he was only measuring 1.4lbs and his cord flow was reversed which meant he was getting no nutrients anymore. It was time to deliver. He let us know I would have something called a Classical C-Section. I had never heard of this as both of my prior babies weren't C- Sections. He explained I would have a normal C-section scar on the outside but would have a vertical uterine incision. He explained this was better for Micro-Preemies and would give him the best chance of survival. There was a higher risk of blood loss for me but they would have everything prepared in the OR for me and not to worry. Honestly, I wasn’t. I was so extremely numb. I felt nothing. I wasn't scared or worried or nervous. I was just there. Dr. Bernasko wanted to schedule our delivery for the next day. He told us he was going to move us back down to labor and delivery to be monitored before my scheduled C-section the following day.

We were moved to the L&D room and I was hooked up to monitors again. The Yankees were playing on TV and winning which somehow comforted us. I took it as a good sign. As I was laying there I heard his heart beat rhythm start to change on the monitor. I had a sudden drop of anxiety I never felt before. I watched his heart rate drop to the 80’s (most babies his gestation have heartbeats in the 140’s) and then come back up. Dustin and I looked at each other in complete concern. Moments later Dr. Bernasko was back in the room telling us he would be doing the C-section that day within the next hour.

Things moved very fast from there. As they prepped me for surgery, the woman doctor from the first day came back in. We had told her this would be our last baby and I wanted my tubes taken out. She advised strongly against it as Camron was not strong and it could end badly. After a few minutes of back and forth, we agreed to forgo the tubal and revisit it at another time. This proved to be one of the best decisions we made that day.

As I was laying on the table I couldn't really think of anything. My mind was pretty much blank. I was shaking and crying but I don't remember actually thinking about anything. Camron was born within 10 minutes of me being in the room. I heard the nurses say "he's out" and I heard the absolute smallest cry I have ever heard in my life. I couldn't believe he cried at all, he was barely a pound how could he make any audible sound. The NICU staff got right to work and they weren't saying much to us. While my doctor was stitching me back up I just remember laying there holding Dustin's hand. The doctor informed me it was taking them longer to stitch me than normal and there was a chance I would have to be put under general anesthesia. Normally, I would have panicked but I was so emotionally exhausted at that point again I couldn't think. Luckily, they were able to close me up. I had lost a lot of blood but was okay.

As we were reaching the end they finally rolled Camron to us in his incubator. I could not believe how small he was. I was shocked. They told me I could touch him but I was honestly scared to. How could any human being be that small? They wheeled him into the NICU away from us while I was being wheeled to recovery. They told me I could eat something so I did. It felt weird to be eating something, after a day that just felt surreal eating felt so normal. We were there for a bit before they moved us to our postpartum room.

I wanted Dustin to go and see Camron. He went down to talk to the nurses and Facetimed me so I could see him since I wasn't strong enough to go down. They filled him in on the lights, medications, and tests he was having. I felt happy he was with his dad and not alone. After that I fell asleep for a bit and decided a few hours later I wanted to go to the NICU. The nurses allowed me to go in a wheel chair. I couldn't stand but Dustin got me as close to him as I could in a wheel chair and I spent the next 45 minutes just staring at him.

After a little while I started to feel off and asked Dustin to take me back to our room. I remember leaving Camron's room and then I remember waking up in the main entrance to the NICU with nurses all around me. I had passed out but I was okay. I had lost a lot of blood and ate too much food and was honestly emotionally and physically exhausted. I went back up to the room to rest.

I honestly cannot remember the next few days. I was in a lot of pain from my C-Section but I was in the NICU as long as they would let me be there each day. Once we were discharged, we made arrangements with our parents to watch our other two kids so we could be at the NICU every single day with Camron.

Each day I would stand next to him in his incubator sometimes in silence and sometimes singing or talking to him. Dustin would read to him sometimes. I would hold his hand in the incubator and count his fingers and toes over and over and over. I still remember the feeling of his tiny little fingers on mine. Since I couldn't hold him I was desperate for any physical interaction with our baby. I threw my energy into pumping milk for him. I wanted to take care of him anyway I could.

The NICU was filled with extreme ups and downs so I started journaling about what was happening daily. Some days he would make huge progress and sometimes it would be huge setbacks. I would spend my day staring at his monitor that measured his oxygen. My heart would drop every time his oxygen would drop too low. I can still hear the beeping sound and see the flashing of the numbers. Though there were glimmers of hope, his situation was very critical. I can remember having a conversation with one of his nurses. I said to her, "I can't see the end of this", and she said "It will end. You don’t see it but he will grow and graduate from the NICU." But what I really meant was, I don't see him coming home. Though I tried to keep faith, there was always this horrible feeling that our time was limited and precious.

About 2 weeks in, Camron's oxygen began struggling more than usual. We hadn't held him yet. That day the Nurse Practitioner came in and asked if I would like to hold him. I just started sobbing. I was beyond happy. I wanted to feel him in my arms so bad. Not being able to hold my baby was so extremely difficult that when she set him up on me with his ventilator in place and all his wires where they were meant to be, I didn't move for hours. His heart rate an oxygen would even out a bit when I held him. She explained she hoped skin to skin would help him and me. It was amazing how tiny he was. He barely took up any room on my chest. I can still feel him wiggling his little feet as he lay all warm and cozy on me. Although I was beyond ecstatic to hold him, Dustin and I knew that this was also an effort to improve his failing health.

A few days after I held him for the first time, Dustin went to the NICU before me. I was home with Jaxon and Mackenzie waiting for my mom to come babysit. I had knots in my stomach everyday but today was different. The night before I had called the NICU at 2AM just to check on him. The nurse said he was struggling a little but they are upping his oxygen and just letting him be. They were minimizing touching him as it seemed to cause him stress. When Dustin got there, he texted me to fill me in that he walked into a room full of doctors and nurses around Camron. As he was being brought up to speed he found out Camron's kidneys started failing and he was no longer making urine.  I knew what kidney failure meant in a micro-preemie. I had read about this in some of the Facebook groups I belonged to. I couldn't recall one story where there was a positive outcome. I stood in my bathroom sobbing by myself. I remember praying out loud for god to “please help him.” They took him off my breastmilk and just gave him fluids overnight. I was panicking, I wanted to get there as soon as I could. I flew out of the house as soon as my mom pulled up. I felt like throwing up walking into the hospital. I just needed to be with him.

Once I walked in Dustin told me all about what was happening. I went right over to Camron and started counting his fingers and toes again. He was swollen and he started really looking sick to me that day. From that day on, for the next and last week of his life it just got worse and worse. The nurses were great and promised us they would try everything possible. We had numerous consults with specialists and doctors to try to help him. We tried all the medications and positions to help get oxygen to his body. He just wasn't strong enough to keep his organs working. He was on 100% oxygen with an additional oxygen booster but his tiny body was still failing him. His heartrate was so high, I just felt like he was in pain. Though they assured me the medicine he was on was helping his pain, he just looked like he hurt to me. I look back at a picture of him from that day now and I can barely look at how sick he really was.

On the night of July 14th, Dustin got to hold him for the first and last time. We knew his body could not hold on much longer. We decided to just be with him and hold him and hope he knew mommy and daddy were there and with him. Dustin held him for hours as we spoke to doctors. All of them let us know they had not seen a preemie come back from this kind of condition. They took us through all the options but ultimately to save him from pain as his life was ending we decided to take Camron off of his life support and let him pass naturally in our arms.

It was strange because I felt like I was thinking with such a clear head when we made this decision. I don't even know how I was functioning but he was our baby boy and we had to do what was right for him. The doctors put him on my chest and Dustin snuggled in with us. They disconnected all his medications first and we sat with him on his ventilator for a minute. The head of the NICU was with us and she removed his ventilator. He lived for about a minute after that and passed away completely peaceful in my arms. There were no doctors pumping him with drugs or trying to resuscitate him. He was just with his mom and dad and loved. Looking back, it was the most peaceful moment with him we had. There was nothing else that mattered.

There was a lot that happened after he passed and the NICU staff was just so incredible. I handed Camron to Dustin and he handed him to the nurses to take him away. I swear my brain short circuited. “Where was she taking my baby boy? How could he really be gone? Did that actually just happen? Will he be completely alone? But he needs his mommy and daddy!”

The walk out of the hospital was the worst walk of our lives. Women were leaving with their baby's but we had to leave without ours. We would never bring him home. His brother and sister would never meet him in person. And they loved him so much already. How do we tell them?

When we got home we went straight to bed and slept all day and night.

I used to hear stories of people going into shock after a traumatic event, but I feel like I just felt everything all at once. As we planned Camron's funeral it was just one awful decision after another that we had to make. What casket do we want? What cemetery will he be buried at? What should he wear to be buried? Honestly, the funeral was a blur. We were there, I was talking to people but I wasn’t really there. I felt empty.

One of the hardest parts about this whole experience was telling Jaxon and Mackenzie that their baby brother was in Heaven. We were sitting by the pool while they swam. I wasn’t really sure how to approach this. I never had to do something like this before. As they were smiling and laughing, Dustin and I sat by the pool and told them that Camron went to Heaven. They didn’t seem like they understood what Heaven was so eventually I wound up being straight up with them. "Baby Camron died." Jaxon was old enough to comprehend what was happening and had a lot of questions. Mackenzie was 2 at the time so a lot of this didn’t resonate with her. Jaxon was sad and I could see he wanted to cry a lot. But we made sure to let him know it was okay to feel sad and we were there to answer any questions. The sadness on his face was so terrible. I never want to deliver news like that again to our children. It was such a huge life event that they had to endure at way too young of an age.

As the dust was settling and life got back to normal I felt like I was in fight or flight mode constantly. I was replaying every second of the past month and wondering what I could have done differently. Did I do enough? Was it my fault? It was my body that failed him and couldn't help him grow. I started talking to my therapist about all of this which absolutely helped me work through these emotions. We also had amazing support from our cousins Nick and Kate and our friends Melissa and Doug. I truly believe they got us through this impossible time and I just don't know where we would have been without them.

There were, and still are, some emotions I never expected, such as resentment towards certain people and feelings of disappointment. As time has gone on, these emotions have begun to subside and I know I still have a long way to go in dealing with Camron's passing.

Two years later in March of 2023, Camron sent us our 4th baby. A boy, Leo William. There is no doubt he was sent here by Camron to help us heal. I feel him every day watching over our family. I can feel him still in my arms and still remember the feeling of his tiny fingers as I counted them. I hope that never goes away. When I’m feeling sad or lost I am so lucky to have pictures and videos of him to look back on. Our kids still talk about him and remember him which is an absolutely amazing feeling. They will forever know that he is part of our family and our story.

Camron John...My forever baby... I love you more than words can ever say. We miss you every day but we thank you for watching over us and sending us an immeasurable amount of blessings. Until we meet again my sweet boy…Love, Mom.