‘Do you want to hold your baby?’ Through tears I repeated, ‘No, you need to keep trying.’ Matthew fought to live well before he was born.’: Mom details life and loss of preemie child, ‘My kids are here because, not instead of him’

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Disclaimer: This story contains details of grief/loss that may be triggering to some.

“In May 2014, I learned I was pregnant for the second time. Just a few short months earlier in January 2014, my husband Eric and I were pregnant for the very first time, but we had suffered a miscarriage. So, this time, I was a little cautious to be excited. To my surprise, everything was going normally in my pregnancy until I was 16 weeks along. It was then we learned we were having a boy and he was already measuring two weeks behind on growth. The baby was diagnosed with severe intrauterine growth restriction (IUGR). The further along in my pregnancy I went, the more the baby continued to fall even further and further behind. My high-risk doctor told me the goal was to get the baby to at least one pound before delivery for him to even have a fighting chance of survival. The one-pound threshold was an extremely critical milestone because this is the size he had to be for his airway to fit the smallest size tube for the ventilator. It was at this time I knew we were up against some pretty grim statistics. Eric and I decided the name Matthew was fitting since it meant ‘gift from God’ and we were going to have to rely on our faith heavily throughout this journey.

Matthew always had the odds stacked against him; he was fighting to live even before he was born. From the time I was 16 weeks pregnant, we knew Matthew’s survival was never guaranteed, but we never gave up on him. I was exactly 29 weeks when I was told it was no longer safe for Matthew to be inside of me. The blood flow in the umbilical cord had started to reverse and he needed to come out right away because he was now at risk of becoming a stillborn. His size on ultrasound was estimated to be a little less than one pound, but at this point he was better out than in.

Matthew Allen China was born November 6, 2014 at 11:33 a.m. by emergency C-section. He weighed 13.6 ounces (385 grams) and was 10 inches long. The most incredible thing about the day he was born is the fact he came out breathing on his own. He was on record as the smallest baby to ever survive delivery at Kennestone Hospital.

Courtesy of Kristin Nash China

All the medical professionals in attendance at his birth could not believe he was breathing on his own and he did not need to be intubated. Nobody in the operating room thought he would make it out of there alive. He continued to surprise everyone and breathed on his own for over two weeks. His overall health started going in the wrong direction and he needed to be intubated at 15 days old, but God’s timing was perfect because Matthew had finally grown big enough to fit the smallest tube they had. This was the biggest blessing; the ventilator prolonged Matthew’s life.

It always seemed like Matthew was battling infections. At one point, he had four infections at the same time and the doctors thought he would not pull through, but he did. He needed constant blood and platelet transfusions and it just never seemed like his organs were working like they were supposed to. It was a mystery why he had all these struggles and he always seemed to be the sickest baby in the NICU, but that only made my love and support for him even stronger.

Courtesy of Kristin Nash China

Every day for three months straight I visited Matthew for eleven hours a day. I came in the morning as soon as parents were allowed, and I only left at shift change when parents were required to leave. Sometimes, on the really bad days, I would leave at shift change and grab a quick bite to eat and come right back to spend more time with Matthew. Eric would visit Matthew late in the evenings after he got off work, but unfortunately the different timings of our visits during the week meant we were only able to see Matthew together on the weekends. The NICU was a 45-minute drive from our house and I was terrified to leave Matthew every night because there was no way I could get to him at a moment’s notice in an emergency.

I knew there was no guarantee Matthew would come home, so I was determined to squeeze in every second I could with him, just in case. Matthew fought to gain weight, he fought infections, he fought to breathe, he fought through a surgery, he fought broken bones, and he fought with such a mighty strength and determination; I could not have been prouder of him. I don’t even know the number of times he coded in his short life because I lost count, but he always fought and came back. There was even one time he required CPR so long they were worried about brain damage, but to everyone’s surprise he never had a single brain bleed in his short life. There was never damage to his brain and he was always alert and aware. He was so resilient and amazing in his fight.

Courtesy of Kristin Nash China

What Matthew lacked in size he made up for in personality. From the day he was born, he was so animated. He didn’t act like a 29-week baby should. He never slept and always had his eyes wandering around the room. He was always so alert to the point that if he were actually sleeping everyone would notice and begin to wonder if something was wrong with him. He always wanted to know what was going on and he would melt everyone’s heart when his eyes would become so wide it would cause his forehead to wrinkle. He talked with his eyebrows and his big wise eyes were the best thing about him. He had the funniest facial expressions, and I could just sit and watch him forever. He always had his tongue sticking out and he had the most perfect and sweetest little hands and feet. He loved getting his head rubbed so much so that it was communicated among the nurses and respiratory therapists that if he made any alarms go off to just rub his head first and he would get better. He hated getting his diaper changed and he would let you know with the most pitiful pouty face or the funniest stink eye. Sometimes, if he wanted nothing to do with you, he would close his eyes and pretend to be asleep, and every now and then he would peak to see if anyone was still there watching him. He had so much personality packed into such a tiny body.

Courtesy of Kristin Nash China

When I was getting wheeled into the operating room for my C-section, I talked to God and begged him not to let Matthew die. After Matthew was born and time went on, I began to learn exactly what Matthew was up against and I was very aware of what could happen. I was hopeful but realistic about his situation. I thought the worst thing besides Matthew dying would be if he died alone. I began talking to God every night when I went to bed and asked Him to please not let Matthew die unless I was with him. I did not want Matthew to die at all, but if God was going to take him, all I wanted was to be there with him when it happened. That is exactly what happened on February 6, 2015. I was as the hospital not even two full hours when everything suddenly went crazy. His death was so sudden and so unexpected, but I was right there with him. I thank God for allowing it to happen like that.

Courtesy of Kristin Nash China

Before the alarms went off, I had just finished pumping milk for his next feeding. I had just finished applying some lotion to his back and laughing at the way he squirmed while I was doing it. I had just finished telling him I loved him, and I had debated whether I should take his three-month picture right then or wait until after the nurse and respiratory therapist got done with their cares. I decided to wait. I would never get that three-month picture of him alive because it was only a few minutes later the code started. During the code, I sat frozen in disbelief of what was happening right in front of me. This scenario had happened before, but this time would be the last time I saw it play out. The nurse practitioner kept asking me, ‘Do you want to hold your baby?’ and through tears and a shaky voice I kept saying, ‘No, you need to keep trying.’ A nurse asked me if there was anyone they could call for me. I told her everyone was at work and I didn’t have anyone who could be there in just a few minutes. The nurse practitioner looked at me again and asked me how long I would like them to keep trying for. I didn’t have an answer.

I turned to the nurse, who now had her arm around me, and I asked her why his heart rate and oxygen saturation numbers were not going up yet. She told me they tried everything and nothing was working. It was at this moment I realized this was the end of his journey. They called time of death at 12:24 p.m. and I immediately collapsed into the nurse’s arms and literally felt a piece of my heart get ripped from my body. Everyone in the room started to clean Matthew up, and for the first and last time in my life I got to hold my baby free of tubes and wires, but there was no life left in his three-pound body. I had wanted to be there if he died because I didn’t want him to be alone. I had never thought about what I would do if he did die and I was the one left alone. It was an awful feeling. Eventually, I would be surrounded by support in the form of pastoral services, nurses, and family. Eric didn’t get to the hospital until a couple hours after Matthew had died because he was working pretty far away that day, so the details of those few hours are so deeply personal to just me.

After Matthew died, the neonatologist wanted to know if we wanted an autopsy done. Personally, I wanted the autopsy done because I needed to know what happened to Matthew. Even the neonatologist was stunned when we got the results of the autopsy. Matthew was positive for cytomegalovirus (CMV). This was shocking because he was tested for CMV at birth and he was negative. The neonatologist explained sometimes CMV can be dormant at first and result in a negative, but then become positive, which is exactly what happened to Matthew and why he was so sick in his life. Because of Matthew, protocols at the hospital have changed now that they know what to look for. Babies admitted to the NICU with a diagnosis for IUGR are checked for CMV at birth as well as at 30 days of age. Checking at 30 days ensures an infection is not missed. If a baby is not making improvements and lab values are out of normal ranges, despite usual interventions to fix them, there is also a blood test sent out to check for CMV. I am glad we had an autopsy done because it provided some closure for Eric and I, and hopefully may help future preemies and their families who may receive the same diagnosis.

After Matthew’s funeral, everything felt so painfully final. I was beyond depressed. I had stopped eating and sleeping. It felt like he was still in the NICU and I was not allowed to go see him. For the last three months every day, every hour, every minute, every second I had spent focusing on my son and making sure he was alright, and now I had nothing but endless, empty time on my hands. I just lay on the floor of his fully decorated yet untouched nursery and wept for hours. It physically and emotionally hurt me to be alive. I just wanted to die. Family, friends, and even strangers who followed Matthew’s story kept telling me how strong I was. No one, not even Eric, knew how far gone I actually was.

I kept pretending I was doing okay, but two weeks after Matthew’s funeral is when I snapped. I had decided the pain was too much, and I wanted to seriously die. I really believed my life was never going to get better after such a devastating loss. I was taken by ambulance to the ER and then eventually to a treatment center. Matthew’s primary nurse is the one who made the phone call that saved my life. The day Matthew died she showed up on her day off and spent several hours supporting us. She even spoke at his funeral that was attended by twelve other NICU staff members as well. She is also the person who picked me from the treatment center when I was discharged. I am forever indebted to that nurse for the many ways she went totally above and beyond her job duties during Matthew’s life, and even more so for all she did for me to make sure I had a second chance at life too.

Two months after Matthew died, I found out I was pregnant. It wasn’t a planned pregnancy, but God knew another baby was going to mend my heart in some ways. My second son, Andrew, was born in December 2015, only ten months after Matthew died. I had lost a son and gained a son all in the same calendar year. For me, 2015 was the epitome of simultaneously experiencing gut-wrenching grief and overwhelming joy. I have been asked before if I wish I didn’t have Andrew so soon after Matthew died, but Andrew’s timing was exactly what I needed. After Matthew died, one of the worst feelings was being a childless mother. I had lost my identity. My empty arms were so painfully heavy. After Andrew was born, he gave me the best reason to get out of bed each day. He was the light in the darkness, and he started to heal my heart in ways I never thought were possible.

Courtesy of Kristin Nash China

Before I was ever pregnant with Matthew, I never had a desire to be a stay-at-home mom. Personally, it just was not something I wanted to do, and I was more focused on finishing college and starting my career. I was okay with my future children being in full-time daycare while I worked. But Matthew’s life and death changed my views on my own life. After my maternity leave ended with Andrew, I quit my job to become a stay-at-home mom because I had learned firsthand how short life was and I knew I wanted to soak up every second of motherhood. I enjoyed being a mom to Andrew so much that I knew I wanted to see him grow up with a sibling.

20 months after Andrew was born, I had my daughter Allison. Both Andrew and Allison were born five weeks early and spent some time in the NICU, too. I had three preemies within 33 months and a combined NICU stay of 103 days between them all. Some might say it is a shame I will never know what a full-term birth experience is like, but the NICU is the only experience all three of my kids ever can or ever will share together. We got to see our favorite nurses and doctors that we bonded so closely with during Matthew’s stay now care for our other two children as well. Those nurses watched us leave the NICU with crushed souls and empty arms in February 2015, only to see us leave with smiling faces and a healthy baby in a car seat in December 2015, and then again in September 2017. Life came full circle and I know Matthew was watching from above and cheering on his brother and sister as we took those victory walks out of the NICU on discharge day.

Courtesy of Kristin Nash China
Courtesy of Kristin Nash China

Matthew’s life forever changed me. I am beyond thankful for what I had back then and what I have now. One is not better than the other. Andrew and Allison are here because of Matthew and not instead of Matthew. I wish I could tell my February 6, 2015 self, ‘There are going to be some other hard, personal struggles along the way, but your arms won’t always stay empty. I know it seems impossible right now, but you really will be okay after this, just trust me.'”

Courtesy of Kristin Nash China
Courtesy of Kristin Nash China
Courtesy of Kristin Nash China

This story was submitted to Love What Matters by Kristin Nash China of Dallas, GA. You can follow her journey on Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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