THE FAIRLEY TWINS | A story of hope
Jessica is not like one of my typical "NICU moms". I was connected with Jessica by one of the amazing nurses that took care of my little NICU miracle many years ago. This nurse knew about my NICU ministry and thought I may could help bring a smile and blessing to brighten her day.
I had full intentions of visiting Jessica in the NICU and photographing her sweet babies, but things can quickly change in the NICU world and each time I was scheduled to come meet her at the hospital something happened and Emmalyn took a turn for the worse.
I never got to go to the NICU to meet Jessica before both of her babies were discharged, but we did get to message back and forth to chat. I admired her grace under all the pressure that she was dealing with. She was warm and kind, and even went out of her way to donate several boxes of things to another NICU mom that I was trying to help at the time. Here is Jessica with SO much on her plate, taking time to bless someone else who was going to be leaving the NICU with their baby. It's easy to see how someone in her shoes could have been jealous of this other mom, as she could only dream of having both of her babies home, but that was so far from the case. Her story is so raw and so touching, and I am SO glad that she was brave enough to share it with others to help bring hope to other families who may be currently fighting their own battles.
I FINALLY got to meet Jessica in person last week! I was over the moon excited when she agreed to let me meet up with her at USA Children's & Women's Hospital and photograph the twins first birthday session. One of the very special nurses from their story joined us on her day off to reconnect with the sweet babies she cared for in the hospital too!
This is Jessica's story...
As far back as I can remember I have always wanted to be a mommy.
After being together for ten years, my husband and I were married November 5, 2016. We knew we wanted to start a family together. I ached and yearned for my womb to be full of life.
We would soon know that my dream of bring a mother may never be a reality for us. I was diagnosed with PCOS and was told by my doctors that it would be extremely hard to naturally conceive a child. After much thought and prayer, we started our fertility journey in April 2017.
After the first treatment we went in for a follow up appointment and ultrasound but were heartbroken to find out that the treatment did not work.
We were not pregnant.. We were determined that we would not give up, and the plan was to wait until the following month and start the cycle all over again.
Mother’s Day of 2017 I woke up sick to my stomach and sent my husband out for some pregnancy test. Could this be? There were mixed emotions of excitement and fear as I carefully took one of the test. I laid it down and left the room immediatly after. My heart was just not ready to see yet another negative result.
My husband walked by shortly after to sneak a peek at the test. "What do two lines mean??" he asked. Could this really be it? I thought to myself as my heart pounded right out of my chest.
8 test later and I had an appointment the next day! My hormone levels confirmed that I was pregnant. Finally! It was OUR time!
In June 2017 we had our first ultrasound appointment. It was almost too good to be true! The Ultrasound Tech said, “OH well there are two tiny babies there!" God showed up and let us know He doesn’t need medications or treatments, He is the creator of life!
The next few months flew by preparing for our babies. We were going to be parents to not only one, but TWO little miracles!
October 7th the Mississippi Gulf Coast was preparing for Hurricane Nate as it made a beeline for the coast. I started having pain and cramping in my back that came and went as the day went on. The cramps grew closer and closer together so I stared timing them. My husband and I decided that we should go in to the hospital just to be safe. With a storm looming in the Gulf we were not taking any chances. The nurse in Labor & Delivery told us that it was totally normal and that it was not in fact contractions that I was having.
We were sent home to weather the storm.
That evening and night I labored at home for 12+ hours in the middle of Hurricane Nate until around 5AM when the storm finally passed. We knew that something was NOT right so my husband and I headed back to the hospital for a second time.
Once again we were told that it was not contractions, but we knew differently, and we persisted. The nurse tapped on the monitor and quickly discovered that the monitor was broken. It was at this point that I was finally checked, and I will never forget the words, “OH you are five centimeters! These babies are coming today!!”
I immediately prepared myself to lose both of my babies right then. I started screaming and crying.
There are no classes, no books, and no amount of advice that will ever prepare someone for that moment.
My babies were coming at only 24 weeks, and there was nothing that I could do to stop it.
I looked up at the clock and God told me to “hush” and to trust him.
Everything was spinning out of control and God just wanted me to be still!?
But how??
The hospital staff rushed in an attempt to stop my labor, but despite their efforts, it could not be done. Two teams from Gulfport, Mississippi NICU came in prior to delivery. Time seemed to stand still and move at light speed all in the same moment. Emmalyn Marie was born at 9:36AM in a completely natural birth. The NICU team rushed in and started working to stabilize her.
Baby B was still in his sack and transverse. Doctors watched him closely for a while and decided the best course of action was to transfer us to USA Children's & Women's Hospital in Mobile, Alabama.
Within 10 minutes of arriving in Mobile, Baby B was breach and I was 8cm dialated. The medical team explained that if Baby B were to be delivered that he would not survive. I was quickly prepped for an emergency C-Section.
James Bernard was born at 1:20PM, and our NICU journey began....
We now had 24 week twins in two different states. Emmalyn was 1lbs 7oz 8 1/2” and James was 1lbs 11oz 13”. I had no idea the journey we were about to endure but my husband and I were just so grateful at this point that our babies were alive. Later this night Emmalyn would be transferred to USA Children's & Women's Hospital as well.
People would ask me how I did it, and to be completely honest- you do it because that is the only choice that you have. We prayed and trusted God with all our might. Even in despair, even on the days that we thought we would never get through, we cried out to God, and we trusted His will.
One thing I had to realize is that God knew our precious babies before they were ever born. God knew me before I was ever born, and He knew that my story was their story. He knit them perfectly together in my womb.
We knew that no matter the outcome, this story was already written. We felt peace because we know that we serve a graceful and merciful God.
James had a pretty easy NICU stay besides the normal heart rate drops and desats that I thought he would never grow out of. Apnea of Prematurity is a very scary thing. Babies that are born too soon will just forget to breathe. Without warning they just simply stop breathing and turn blue
Nothing about that got easy but I learned how to tell on the monitor what was a real alarm and what was not. Other than one illness requiring antibiotics he cruised right along growing in his incubator. He constantly stayed hot and loved to be snuggled.
Following surgery to repair two hurnias, James was discharged from the NICU on Feb 22, 2018 after a 4 1/2 month NICU stay.
Half of my heart was at home, and the other half still remained in the NICU.
Emmalyn's journey was full of ups, downs, and difficulty. It seemed this sweet baby girl got everything possible. She was 2 days old when Dr. Harmon told me that she had Hydrocephalus and that it wasn’t from a brain bleed. This was due to her brain not developing.
I had never even heard the word before. "Hydrocephalus". It sounded mean and scary, and whatever it was I did not want my precious little baby to have it. I vividly remember in that moment, grasping to wrap my head around what this even meant, I asked “so she is brain dead?”
The doctor held my hand while I sobbed and in an attempt to reassure me he said, “I can’t tell you the quality of life she will have -but I will tell you that you have a beautiful daughter that will thrive with a mother like you”. My heart needed to hear that. I was her Mommy, and no matter what the future held, I knew that I was going to love her with a love so fierce, and fight for her until my last breath on this Earth.
The doctor explained that our main concern is growing her and keeping her alive. We were not focusing on her brain at this point.
My sweet girl also suffered from blood clots, causing her to require two injections every day for weeks to try and dissolve the clots. She also got an infection at 1 month old almost had to get a sub Q port for antibiotics because they couldn’t get a PICC line in.
She had two spinal taps to make sure the infection wasn’t going to her brain.
They told me that her optic nerves didn’t develop and they weren’t sure that she could see at all, or would ever see.
It was at this point in our journey that we met Joy. The first day Joy was her nurse, Emmalyn was really sick. and they just told me about her eyes. Joy took my hand and prayed miracles over my babies eyes, she claimed in Jesus’s name that Emmalyn WOULD see. I simply cannot say enough about this incredible soul. She is far more than a nurse, and despite me trying to explain it, she will never know just how much that moment meant to me. I was thrilled beyond measure when she joined us on her day off for the twins birthday photo session!
Emmalyn got better and she continued to grow. She then endured yet another surgery. This time for her eyes.
She started having seizures so we knew her brain was getting worse, and a surgery was scheduled to put in a shunt to combat the seizures. I came down with Shingles, and due to this we had to go to isolation for three weeks and the surgery had to be postponed. The NICU is full of ups and downs. Every single day in the NICU is different from the last. This set back would not break us, and we fought to move forward again.
The isolation period passes, and we were finally at a point to schedule surgery again.
Thank you Lord! It felt good to be moving forward.
At 3:30AM the night of her surgery, I got a call from Alicia one of her primary nurses. Alecia cared for both Emmalyn and James in the NICU. Alecia explained on the phone that the surgery had been canceled and something was wrong. My heart sank. This is not a call that you want to get from the NICU. My mind was racing and I could not get there fast enough.
When I arrived at the hospital Emmalyn couldn’t breathe. She was back on CPAP at 100% oxygen and couldn’t get her stats passed 70.
I had been on this NICU roller coaster long enough to know that this was not good. This was very bad. Something was terribly wrong.
I was losing my baby right then and there.
I dropped to my knees in the middle of the pod beside my baby and cried out to God. "Jesus". It’s the only thing I could say. I had one baby at home, and was watching one baby slip away right in front of my eyes.
I looked at Alicia at one point and said "What’s wrong with her.?? There was silence in that moment. .
Emmalyn had to be iintubated and placed on a ventilator to breathe for her, as she was no longer able to breathe on her own. She was given medication to put her to sleep so that she would not fight the ventilator as it breathed for her. Emmalyn remained on the ventilator for a few days while her lungs healed. It was at this point that we met another one of our angel nurses. Mrs.Charlene took care of her while she was so sick, but fighting every single day. Charlene cheered her on and fought alongside her daily.
We were dealt another blow when we found out that during the time on the ventilator she developed pulmonary hypertension.
Three steps forward, and two steps back.
This was the dance that we had come to know all too well. We were also told this same week that her brain stem was starting to herniate towards her spine from the pressure. This was a HUGE blow, and one that I was not ready for.
The medical team explained that babies with brains and lungs like hers will probably need a trachea or Oxygen for life in order to survive.
Fast forward to February 21st. She was finally able to have the shunt surgery, and was doing great. We got back down to a cannula, and the last hurdle before we could be home was surgery for her G-tube. A G-tube was required in order to deliver nutrients directly to her stomach so that she could continue to grow and thrive.
She got her G-tube in mid April and was finally able to come home on April 13, 2018 after 193 days in the NICU.
This was the first time that my little family would be under ONE roof together. This was the day that I could only dream about.
We had weathered the storm and we were coming out to the other side stronger than before.
Emmalyn's journey is far from over, and only time will tell if she will ever be able to walk or talk. Emmalyn is a child of God and we know that He has a very special purpose for her on this Earth.
I refuse to accept anything but success for my perfect little baby. I know that God's plan is perfect, and He has a plan for her life.
I know that God will never leave or forsake our sweet girl and I will continue to put my faith in Him.
She was never supposed to breath 100% on her own and she is now oxygen free.
She was never supposed to be able to drink from a bottle, but she is know taking a 4oz bottle by mouth.
She was never supposed to be able to see or hear but she can do both to a certain degree.
She is proving them wrong and glorifying God while doing it. Modern medicine is wonderful, and I am grateful for an amazing medical team at USA Children's and Women's Hospital. I know that God is the ultimate healer and He has our perfect baby in the palm of His mighty hand.
He has carried her every step of the way, even putting amazing nurses like Joy, Alecia, and Charlene in our lives.
I promised God that I would always use her for His Glory and I do it every chance I get.
Emmalyn and James are a gift from God and are true living miracles. I will never take one moment with my babies for granted.
Since we have been home it’s been a storm of emotions. We have had hospital stays, countless doctors appointments, time spent soaking up the best snuggles ever , meeting milestones and learning to manage with two babies at once.
It's so hard to believe that we are just a few weeks shy of ONE YEAR OLD!!!!!!
I give ALL of the glory to God for these precious little miracles, and for trusting us to be their parents.
My hope for anyone reading this that may be in the middle of your own NICU storm is to please don't give up. Please don't ever stop advocating and speaking up for your baby. I know it's hard to see them like that day after day. I know the days are LONG, and I know you feel torn between your baby and a family at home who also needs you present.
Just know that it's ok to cry and it's ok to ask for help. People may not know what to say to you, but just know that they care and they love you.
Take care of yourself so that you can be there for your baby.
Talk to them. Sing to them and read stories to them. They are soothed by the sound of your voice and they know you.
Be kind to your nurses because they are the ones that will carry you when you simply cannot carry yourself.
Above all else, know that God's plan is always perfect. He will never bring pain or heartache without bringing something good.
If my story touches even ONE person out there who is struggling, then I have made a difference.
Please know that God loves you!!
-Jessica
