Bonsie Skin to Skin Babywear had the privilege to talk with Ashley Taylor, a courageous mom of two and a physical therapist. Ashley’s second baby, Jane Elizabeth Taylor (JET) recently had open heart surgery. Ashley was kind enough to share Jane’s incredible story with us. Her triumphant tale of her little heart warrior will have all parents reaching for tissues and holding their babies extra tight.
Here is Ashley and Jane’s story:
“I thought April 5th was the hardest day of my life. “This is really hard, Ashley.” Dr. Kelly entered the room with these words. Lying on my side while the ultrasound technician continued to scan my belly for more pictures of our baby girl’s heart, I looked up at her confused. Minutes prior, Dr. Kelly just told me that every measurement was “perfect” for our baby girl and on par with our due date of August 17th. What could be hard about this?
“We needed a specific angle of her heart, which was difficult to get with her facing toward your spine, but since she’s rolled, we can now see that part of her heart does not look right.”
I think I nodded my head and squeaked out a hesitant and still confused “okay” and tried to continue to breathe.
“I’m not 100% certain what the defect exactly is at this moment. I need to spend more time looking closely at the scans, but I can tell you it is something serious, and your baby is likely going to need open heart surgery when she’s born.”
I couldn’t fight it a moment longer. My brain was catching up with the words gently pouring from her mouth. My eyes started to well up, everything was blurry, I couldn’t breathe, but my chest rises and falls. I’m lost in sadness; heartbroken for my baby girl’s broken heart.
“I’m so sorry. I just told you your baby girl was measuring perfectly and then this news. I will get you all the answers. We will do an echocardiogram and figure this out. She is safe inside of you and should be through pregnancy.”
I cannot hear anything else, I cannot see clearly, I can barely breathe. I know I need to breathe for her, for my broken-hearted baby girl - find strength Ashley, you can do this.
The genetic counselor kindly walked me out of the empty office, and I began the long walk back to my car in the cold, damp parking garage. “Just breathe, just make it to the car, you can lose it then, when you get to the car, not here, not now, not yet…” words I was saying aloud to myself to keep one foot in front of the other as I left that appointment on that rainy afternoon on April 5th, 2022.
The anticipation leading up to finding out what exactly our baby girl’s heart defect was, gutted me. Every day I had to surrender her life to Jesus and let go of trying to have control over anything but keeping myself healthy and strong to keep Jane healthy and strong while growing inside of me. On April 12th we learned that Jane’s heart defect was called “Tetralogy of Fallot” and she would be considered a “Pink Tet”. The short of it meant that she had a large hole in her heart and a narrowing of the vessel that blood passed through to the lungs to get oxygen to then get pumped through the heart and into the rest of her body. We had to set up several more appointments knowing our baby girls’ heart was broken. Fetal echocardiograms with a pediatric cardiologist, weekly growth scans and non-stress tests with the high-risk pregnancy team. Each appointment came with its own anxieties, constantly wondering if Jane was okay.
The first words out of the mouth of our amazing pediatric cardiologist with Children’s National Hospital, Dr. Mary Donofrio, were “your daughter is going to be okay.” I cannot express the immense gratitude I have for Dr. D – from day one of meeting her while Jane was still growing inside my belly, to post-operative care, Dr. D was our Jane girls’ advocate! She is brilliant and so passionate about heart warrior babies; we know she is a true gift from The Lord.
We scheduled surgery for October 18th, 2022. After having a date set I felt like I could breathe a little easier. Jane seemed like such a normal newborn baby – she was pink, would fuss, loved to nurse and gained weight beautifully. Weeks would pass and I started to notice when she cried hard there would be a darker blue-purple around her nose and lips. We had weekly appointments with our regular pediatrician office to check her oxygen saturation – one appointment they checked her saturation while she was crying and it was in the low 80’s. My heart sank – even though this was still considered “good” and “safe” for our Jane girl, it was the first time I recognized just how my baby girls’ broken heart was impacting her. Usually I could calm her down quickly so the color around her nose and lips would pink up quickly. This would eventually change.
Thursday, September 29th Dr. Donofrio came into the room with a different demeanor. She was much more serious: “so Jane’s echocardiogram looks worse than I anticipated at this time. I just tried to call the surgeon to move her surgery date up, he’s in the OR so I also sent him a text message.” My heart slowed, my breathing slowed, I looked at Jane and fears began creeping into my heart and mind. October 18th became October 13th.
It was around 2 or 3am Saturday October 1st and Jane was inconsolable - crying so hard, turning blue around her nose and lips… Brock woke up and tried to help: “she’s getting worse, I don’t know what to do,” I said anxiously pacing back and forth shh-ing my baby girl, offering to nurse her, pat her bottom, anything to help calm her down. After several minutes she eventually fell back to sleep in my arms while I sat in the glider. I emailed Dr. D in a panic at 3:30am Saturday October 1st, asking if there was anything she could do to help move Jane’s surgery up any sooner. By 7:30 that morning Dr. D responded saying she would do her best to get us admitted that evening, and sure enough by 10:00pm we were admitted to Children’s National Hospital to have a pre-operative day Sunday and surgery scheduled for first thing Monday morning, October 3rd.
Remember when I said I thought April 5th was the hardest day of my life… that would become October 3rd.Prior to surgery Jane had to be “NPO” for 4 hours, meaning she couldn’t eat the four hours prior to surgery. She woke up hangry at 6am. She cried, she screamed, alarms went off on her monitors, her oxygen started decreasing, nurses were running into the room, residents and fellows followed shortly after. They put her on oxygen via a nasal cannula, her oxygen didn’t improve, she screamed and cried in my arms trying to find my breast to eat- I couldn’t do anything to calm her down… the cardiac fellow started singing “twinkle twinkle little star,” Jane screamed. A mask with higher flow oxygen was placed over her nose and mouth and she continued to cry, her oxygen now getting into the 60’s (optimal is 95% or above). I looked around in desperation for someone to DO SOMETHING to help my baby girl. After what was the longest twenty minutes of my life, they gave Jane morphine to calm her down… she fell asleep on my chest. Dr. Yerebakan would come in around 8:30 am to discuss his plan for surgery and shortly after the anesthesiologist would come in and explain what they would do to get Jane prepared for surgery. We signed consent, we said our goodbye to Jane and laid her on the sterile crib; they wheeled her out of the small dark room and I sat and wept. I fell into my husband's arms and wept for my baby girl, again surrendering her life to Jesus. She was in His hands now, all I could do was weep and pray.
We spoke to Dr. Yerebakan around 2:30pm and he said “surgery went great, she did really well.” Our hearts slowed and we were able to breathe a bit easier. Time passed and we anxiously waited to be walked back to see our baby girl. It wasn’t until 5:30pm we were able to see our girl, and nothing I did leading up to this moment could have prepared me for seeing my sweet, precious, vulnerable baby girl.
She was lying there listless on the bed, arms out at her sides. Lines, tubes, wires coming out of her tiny little body, a tube through her nose down her trachea to breathe for her - monitors beeping, alarms sounding, nurses and doctors running in and out of her room trying to stabilize her post-operatively. Tears streamed down my face and I’m not sure I was breathing as I took her in.
Yes, October 3rd was the hardest day of my life to date.
Our 10 day stay at Children’s National Hospital was laden with tiny little miracles. The nurses in charge of Jane’s care for the first and hardest three days postoperatively were literal gifts from the Lord. Hugo & Chris - not only amazing nurses but also extremely great advocates for our girl and extremely empathetic. Another evening, due to the nation-wide shortage of nurses, Katy was literally flown in from Miami to be our daughter’s nurse… I told her she was an angel heaven-sent to care for our girl. The attending physicians and fellows always ensured we were present for their daily rounds and informed us of every detail of their plan to get us safely home.
Day 8 post-op, October 11th we got to bring our little heart warrior home. So many different emotions flooded my heart and mind. My husband and I wept listening to the song “Gratitude” by Brandon Lake as we pulled out of the parking garage at Children’s National Hospital and made the 45 minute drive home with our girl to see our almost 2.5 year old son. I could still hear the monitors beeping in my head while we drove home… would her blood pressure stay stable, would her heart rate stay in a safe range? Anxieties tried to creep into my heart and mind and I would just lean into Jesus - He has been so kind, so faithful and so good throughout our entire story, why would He stop now? I took a deep breath and breathed in gratitude for being able to be home.
Making sure our daughter was safe and comfortable at home were our top priorities. I was ready for sleepless nights, nursing on demand, and holding my baby girl all day and all night if need be. Jane only needed Tylenol for pain - mind blowing! She nursed well and would sleep okay; however, every once in a while she would scream - her eyes would stay closed but she would scream… and stayed pink… staying pink was a miracle… her heart was fixed! I wholeheartedly believe her screams are due to the trauma she’s experienced in her short life, and this breaks my heart. Jane Elizabeth Taylor, our little JET, is a fighter and warrior with a story that is going to change this world.
Bonsie Skin to Skin Babywear had posted they were doing a giveaway. I noticed this brand previously and thought to myself, “how perfect, not only for skin-to-skin, but also for my heart warrior post-operatively.” I entered the giveaway and posted in the comments that our baby girl would need open heart surgery and how perfect these outfits would be! My mom immediately purchased the sunshine pattern for Jane. I waited to see if we would win the free four-pack, but instead received a message from Emily, who works with Bonsie, saying she wanted to send us four anyways. Another tiny little miracle written into our Jane girls story. The first several days Jane lived in her Bonsie outfits and they are oh so delicate over her midsternal incision. I am so thankful for a company that initially broke the ground for stylish skin-to-skin baby clothing, but also has provided a line of clothing perfect for heartwarrior babies like our little JET.”
Thank you to Ashley, Jane’s adoring mom, for sharing your unforgettable experience and for advocating for other Heart Warriors. Bonsie Skin to Skin Babywear is so proud to have played a small part in Jane’s miraculous story. We are cheering for you, JET! #JETstrong