Having a baby in the NICU is not something any parent plans for. At least, that’s what I used to believe until I met Jenny & Hal Rogers. When Scarlett was 8 weeks old, I was having my daily chit-chat with her when I noticed some people walking around the pod. I wasn’t sure what to think of it until her nurse told me it was another family taking a tour of the unit. I was confused by that, why would anyone be touring the NICU? She explained that they give tours to families who know that their baby will be admitted here once they are born. I was stunned, I had no idea anyone could KNOW that they would have a baby come to NICU. I guess with Scarlett’s dramatic entrance into the world, I assumed that was how it always was if your baby had to be in NICU. I couldn’t believe it. It was scary enough being introduced to NICU the way I was, but actually KNOWING beforehand that your child would end up in there…I can’t imagine how those parents must have felt. I bet they were stressed out, scared out of their minds and overwhelmed.
Later that same day, I was on Facebook, good-old trusty Facebook where you can learn anything about anyone in a matter of minutes. I remember reading a post by a friend of mine sharing a story of a family who needed prayers. Their daughter was going to be born earlier than expected and extremely small. After reading the post, I did what another mother of a NICU baby did for me – I messaged her with words of encouragement and shared a little piece of Scarlett’s story with her. I wanted her to know that she wasn’t alone. I too was a new mother of a micro-preemie and I would be here for her if she ever needed someone to talk to, someone who understood the NICU life. I wanted to reach out to her because I remember how good it felt when another mother did that for me and how much it helped; and I wanted to return that favor to someone else. So I did.
That’s how I met Jenny! After talking back and forth, it turned out that she knew exactly who Scarlett was! (I couldn’t believe it, God works in mysterious ways y’all!) She knew who Scarlett was and had heard her story before. And it just so happened that, she, and her husband along with her mom, were the family that had toured the unit THAT DAY! (Crazy right!? It was like God meant for us to cross paths) They were touring the unit because they were having a baby girl, Everly Jade. And although Jenny was further along (much further) than I was when I had Scarlett, Everly was expected to weigh about the same as she did when she was born (1lb 3oz). She then shared with me something her mother had said when she saw how tiny Scarlett was when she was born. (It gave me a feeling of such pride and joy for being Scarlett’s mom and I’ll never forget it.) Her mother said that reading about how small Scarlett was at birth and seeing how well she was doing that day gave them a feeling of so much hope. I knew then that, God was using Scarlett to reach people’s hearts and that maybe, just maybe that was part of the reason he had us on the path we were on.
Since starting this blog, I have wanted to share with you all Jenny, Hal and Everly’s story. It’s one full of hope and love and heartache… It is a story that shares the sad reality that is not often talked about but is another outcome for some NICU journey’s. The amazing hand that God has played in their lives has left us all #forEverlychanged and with Jenny’s blessing, and in her own words, here is their story.
On June 30, 2017, my life changed. The little white test said the words I had never before seen, “Pregnant”. We got pregnant easily, but I still was in shock! We then spent the next few weeks keeping the ultimate secret. I watched what I ate, double-checked what medications were safe, drank more water and started working out. I was determined to have a healthy pregnancy so I could have a healthy delivery. My first trimester was a breeze. Minus some added tiredness, I was golden. Never had any morning sickness and if I felt a little weak, a snack fixed me up every time.
We told family around 6 weeks but waited until the “safe” zone to make our pregnancy public knowledge. Everyone was so excited and just positive their gender guess was correct. My response was always along the lines of “you have a 50% chance of being right!” On October 24th we had our 20-week anatomy scan. Our child was being less than cooperative. Hal laughed and said, “that is you in there!” I apologized while laughing at the ultrasound techs for my child is being so difficult. Everything looked perfect, just a petite baby at 13 oz. After seeing my OB, we had to go back to see if we could find out the gender. Stubborn baby thought they needed to sit with their legs crossed covering themselves. Hal & I all but started taking bets. I said girl, he said boy. The ultrasound techs said they were pretty sure the baby was a girl. I laughed a joyous laugh. Hal became silent. It was funny watching his face. You could tell his mind had just started running wild on how he would parent a girl, protect a girl, teach a girl, love a girl. We then kept her gender a secret until the gender reveal for our loved ones on November, 4th. Everyone was ecstatic!
I had horrible headaches during the week of Thanksgiving. I figured it was just the stress of traveling to see family all over the northern part of the state. A week after Thanksgiving and after a stressful day and hormonal breakdown, we went to the store & got a blood pressure cuff. I felt my blood pressure may have been elevated. Sure enough, it was. After multiple readings spaced out over several hours we decided to go to Labor & Delivery Triage, just in case. I assumed we would go to the hospital, they would set me up on the monitors for a few hours then send me home. I assumed they would probably laugh at me as an overly cautious first-time parent. And in part I was right. My blood pressure wasn’t insanely high, but baby Everly was having decels as the nurse called them. That is where the heart rate dips low or decelerates. That isn’t always a reason for concern, but our sweet nurse had an intuition to have it checked out further. We stayed the night in the hospital. Around 8 am, I was wheeled in for a detailed ultrasound. When your ultrasound tech jokes around and smiles with you, you know everything is great. When they are serious, you learn real quickly something is wrong. I started crying. I didn’t even know what the issue was, but I knew it was serious. Once the Maternal-Fetal Medicine (MFM) doctor came in, he gave us a diagnosis. The placenta wasn’t sufficiently giving Everly the nutrients she needed to grow. She was growth restricted (IUGR). She was 25 weeks 4 days at this point but was measuring the size of a 20-week baby. We were told the chances of survival were not great and to go home and prepare for her to “expire” in my womb in the weeks ahead.
We began seeing my OB weekly. Every appointment I was terrified there would be no heartbeat. And every appointment resulted in the same strong heartbeat. We cried, A LOT. We prayed more than we cried. Every day I thanked God for another day with a live baby in my womb. For a baby to be viable after birth, they have to weigh 500 grams which is 1 lb 2 oz. That is the smallest they are able to intubate. And a 1 pound baby would most definitely need to be intubated after birth to assist with breathing. Lungs are the last organ to fully develop in the womb. On December 28th, we went for another ultrasound. We prayed for a 500-gram baby! She had already survived a full month after a grim diagnosis. We knew God had big plans for Everly. And she sure loved showing us what a fighter she was.
God answered our prayer, she was 523 grams! Our MFM decided it would be good to go ahead and start steroids to help strengthen her lungs. We had also made it to the third trimester which was HUGE! After getting my first steroid shot, my MFM called me from his cell phone. He told me after talking to the head of Neonatology (head of NICU) he thought it would be best to deliver soon. I’m freaking out. I have no idea what to expect. I had my second steroid shot 24 hours later and had my bags packed just in case. We called the MFM to meet us for the shot. He told us he wanted to wait a few more days. My OB was out of town at this time, so I was completely ok with waiting a few more days until she was back. We scheduled another ultrasound for January 3rd, 2018, to check the cord flow. This time our MFM was in the room during the scan. He looked at us and said, “I think I’m ready to see her on the outside.” We didn’t ask many questions. We knew delivery was the best option for her survival. Hal and I had decided the best chance at us having a live baby was a cesarean birth. The risks of stillbirth were too great with the induction of a vaginal birth. We went home, finished packing our bags and were back at the hospital less than 2 hours later to get checked in for the birth of our daughter.
At 2:16 pm on January 3, 2018, Everly Jade Rogers came into the world via cesarean. She weighed a mighty 570 grams or 1 lb 4 oz and 12 inches long. She literally came into the world kicking! She was the strongest, most beautiful baby I had ever seen. Shortly after her birth, she was whisked away to the NICU with her daddy in tow. She was remarkable. She may have been the size of a Coke bottle, but once in her presence, you quickly forgot her size. She had the biggest personality ever! She kicked and threw her arms around all the time. At one point, they had to restrain her little arms & legs to be able to put an IV catheter in. The nurse told us “your daughter defeated me.” We laughed, Everly Jade didn’t know she was little. After less than 24 hours she was extubated and changed to a CPAP machine. This is the same type of machine you get if you have sleep apnea and snore at night. She was doing so well! Shortly after CPAP, they changed her AGAIN to nasal cannula. This is the same type of nasal tube I had been given during my cesarean. I was the proudest mom.
The only way I have found to describe the next few days is as follows. She did so well until she didn’t. It seemed every time we would get 1 step ahead, we would get followed with 2 steps back. We couldn’t get ahead of her. Her belly started swelling late one night. The doctors did ultrasounds to figure out if she was bloated due to air or liquid. At the time, nothing could be determined. On Sunday, the beginning of the end started. Her body was becoming acidic. If the acid in her blood wasn’t able to be under control, her organs would start to fail. The doctors quickly decided to put in some “pigtail” drains in her abdomen to release the pressure created from the bloating. At this time, we realized she had liquid in her abdomen which was probably causing the acidity. We were sat in a room with the doctor and asked the question no parent is ever ready to answer. “Do you want us to resuscitate your daughter if her heart rate drops?” Hal and I looked at each other. We weren’t ready for this type of parenthood. I finally answered, “can you resuscitate her until we can make a decision based on the situation?” The doctor agreed and assured us that it could be done. She also told us if her acidity level didn’t change, her organs would begin failing and in a sense, she would become pickled from the inside out. We didn’t know what to do. So, we prayed. We asked our friends to pray, our families to pray. We even asked our preacher to come pray with us as soon as he was done with his Sunday sermon. We were so close to losing our baby girl. After her next blood gas, the doctor came to us in disbelief. Her ph level was starting to come back to normal. We were overjoyed. Her next blood gas came back. It was right where it needed to be. That evening, I asked the doctor if she was going to sleep that night. She probably thought I was crazy. I wanted to know if she felt comfortable enough to close her eyes that night or if she would be near in case of another episode. She told me, she was going to sleep so I should too. I took great relief in that and did my best to rest. She congratulated us again on our daughter. She knew congratulations were in order because of the close call of losing her. Monday was slightly better than Sunday but just as bad in a sense. Due to how distended Everly’s belly was over the weekend, her lungs ended up collapsing. I stood outside her room, while another surgery took place on my 1 lb diva. This time, they were placing tubes in her lungs to help where they had collapsed. At this point, my angel baby is on sedatives and paralytics. It’s hard seeing our baby lay there so still. They placed her on the paralytic since she was such a wiggle worm! They were afraid she would start tugging on drains or tubes that she didn’t need to be messing with. She was notorious for pulling on tubes. That night, we went home to rest and left my dad on Everly watch for the second night in a row. It was the worst feeling of my life. I had a feeling I didn’t need to be far from my baby girl, but I also knew I was helpless in her care. Around 2:30 or 3:00am, my dad called Hal and told him it was time for us to come. The doctors were running out of options. According to my dad, before we got there the monitor screen was blank. No heartbeat, no blood pressure, no oxygen. He circled the doctors, nurses, my mom (who had beat us there) and anyone else in the room and prayed. He was terrified we would walk in and see the blank monitors. After praying, a beep occurred and everyone looked up. Her heart rate was back where it should be. Another beep, her oxygen level was picking up. Another beep, her oxygen level was back to 100%. Everyone in the room stared in awe at the monitors. The doctor told my dad, “I believe we just witnessed Divine Intervention.” Hal and I walk in at this moment. I couldn’t understand what the fuss was about, her levels looked great! Her blood pressure wasn’t measuring but I figured she had just moved here it wasn’t able to get a good reading. I put my fingers on her tiny blood pressure cuff & I begin to pray. After less than a minute, her blood pressure is perfect. The next little bit happened so fast. As quickly as everything went good, it went bad just as quickly. Her levels started tanking. We all step back as chest compressions & oxygen are administered. I sat next to her praying & singing “He’s Got the Whole World in his Hands”. The doctors and nurses have exhausted every measure by this point. The doctor looks at me with love and sadness in her eyes and says, “I think its time for you to hold her.” I knew what that meant. It meant it was time for my daughter to pass away peacefully in my arms. We asked if we could call our preacher so we could have her baptized first. She agreed. The doctors and nurses then took turns doing chest compressions and oxygen on Everly as Hal and I took turns holding her. Once our preacher arrived, he baptized our sweet baby, Everly. At 4:51 am, Everly Jade Rogers went to be with Jesus while being held in her parent’s arms. While nobody prepares you for the birth of a child, they certainly can’t prepare you for the loss of a child.
The rest of the month was a fog. I had been pumping milk for Everly every 3 hours while she was alive. She’s deceased so now what? My body didn’t know she was gone, so I kept producing milk. The milk that was going to be her lifeline was now a painful reminder that she was no longer on earth. Before her funeral, we decided I would keep pumping to avoid mastitis and that I would donate all of my milk to a baby I had found out had RSV. What was supposed to be a few weeks of pumping, turned into months? Within 16 weeks, I roughly pumped 20 gallons of milk. Even though my pumping journey is done, Everly’s milk was still being consumed by the sweet baby we donated to. She impacted far more people in 6 days than I have in all of my years. People from all over the world have been lucky enough to learn of a loving God that is providing peace and comfort to Everly’s grieving family. I know I am a mother. I may not look like a mother to a stranger, but the mark she left on my abdomen and my heart will stay with me forever. I told my dad that since becoming a mom I will never be the same. He replied, “You are forever changed, forEverly changed”
I’d like to thank Jenny & Hal for allowing me to share Everly’s story with you all. They have shown such strength in the face of a loss that no parent should ever have to face. I thank God for allowing me to meet them and witness his undeniable love for us. Sometimes, he gives us challenges that test us and our faith to our limit, but he would never give us more than we can handle.
One day I know you will all be reunited in God’s Kingdom. Until then, I know Miss Everly is watching over her parents with love and causing all sorts of mischief. Maybe, she will even make good on her & Scarlett’s playdate we had dreamed for them. But for now, we’ll just keep looking for that glitter she likes to leave behind when she comes to visit.
Everly Jade Rogers
January 3, 2018 – January 9, 2018