Family Story Assets (Word Document, Photos)
Video Content:
"How is Kaya Today?" (DRTV Spot - do not use on social)
"Kaya's Story" (DRTV Spot - do not use on social)
"March for Babies 2017 - Kaya's Story"
Family Story:
Everything seemed healthy throughout my pregnancy other than minor high-blood pressure concerns, which I had always had growing up as a kid. The week before our intended baby shower was scheduled, I came down with severe pains below one side of my ribs. I started to get scared as the pain got more intense and frequent. I immediately called Essa and asked him to hurry home. I then called my doctor, and he suggested I give it ore time and if the pain didn't go away, to go to the emergency room. A few minutes later, Essa came in with obvious concern as he saw that I couldn’t sit still and was in tears due to the overwhelming pain. I told him what the doctor said, but he wanted nothing to do with it and forced me in the car so we could go to the hospital.
We made it to St. Elizabeth Hospital at 11:30 PM and by 11:35 PM I was admitted to an emergency room and had my blood pressure taken. As the nurses were signing me in, they checked the reading on the blood pressure machine and immediately looked at Essa and asked him if I had experienced any seizures, and if so, how many and how severe. He looked at the nurse with a dull stare like he wasn’t sure how to answer. My blood pressure reading came back at 226 over 129, a reading that far exceeded the point of a person having seizures. Luckily my body hadn’t let it get to that point.
After doing more labs, they diagnosed me with severe HELLP Syndrome. Within minutes, nurses were calling hospitals in the region known for their Neonatal Intensive Care Units, especially ones with a Level 4 Triage Unit for me. They were very concerned with my deteriorating health. I was transferred by ambulance to University Hospital and taken to the ICU closest to their NICU. As soon as I was admitted, another set of labs was taken. As we waited, we spoke with several doctors, surgeons, and anesthesiologists about what was happening and the severity of the situation.
At that point, Tate, a fellow from the NICU down the hall, came to speak with us and gave us the honest truth… Kaya was going to be born extremely early and would have approximately a 40% chance of living.
As he finished his sentence, more doctors than the first round came rushing into the room and interrupted our questions to get me into surgery. The second lab results came back, and within an hour the situation reached a critical stage for both of us, as my body was beginning to shut down. They rolled me out of the room and immediately into surgery. I still remember the tears in my dad’s eyes as he watched them take me away.
Approximately 15 minutes later, Kaya was born. She weighed 1 pound, 6 ounces and within a few days got down to 1 pound, 1 ounce. The doctors that delivered her told us that they never know what to expect in those types of circumstances, but they had never expected her to come out screaming. Every single doctor in the room was shocked to hear her powerful little lungs.
Kaya was very touch-and-go after the first week as her lungs began retaining too much water and it hard for her to breathe. There’s no way to explain the feeling you get when you’re discharged from the hospital (without your baby) and receive a 4 AM call informing you that your baby coded during the night and had to be revived. We got that phone call several times over the next few days.
That next week they switched her from the usual respirator to an oscillating respirator, in hopes that it would allow her body and lungs a chance to breathe and grow. As things started to get better, the doctors detected an infection and diagnosed her with necrotizing enterocolitis (NEC), which has taken the lives of many premature babies as there is no known cause or cure.
After several weeks, we were finally able to hold Kaya for the first time. Her neonatologist was adamant about her next phase of treatment, kangaroo care. The best treatment Kaya could receive at that point was our love. She weighed just a little over 2 pounds, and I can still feel her tiny little fingers gently feeling her way like she knew it was me. It was one of the most amazing feelings. The best part about that day was laying back in the chair and feeling her heart beat against mine; her heart monitor began to level out.
The nurses told us that our skin-to-skin treatment was the only thing that would help her keep fighting. After that day, we took every chance we could to hold her. After several more weeks of infections, treatments, and rounds with the
doctors, she was diagnosed with retinopathy of prematurity (R.O.P.).
She underwent two laser eye surgeries to stop her from going blind. These two eye surgeries were no walk in the park as it required her to be put back on a respirator, after being taken off of it just weeks before. She extubated herself after both surgeries; we knew we had a fighter on our hands.
From then on, things began to look brighter. Kaya graduated from her incubator and was able to wear actual baby clothes! After a grueling 163 days, she finally came home. It was a lot of preparation as she was coming home on oxygen and with a heart monitor. After several months of doctors visits, she was finally able to breathe on her own and lose the oxygen and her heart monitor.
Today, Kaya is doing better than we could have ever hoped for, thanks to the amazing doctors and nurses at University Hospital and Children's Hospital. They helped us so much in the first six months of her life and to this day. Thank you to the people who gave blood to help my baby girl and to the mothers who donated their breast milk. We are so thrilled with her progress and although we would like her to gain a little more weight, she’s a very happy and healthy little miracle.
Updates 060519 from staff contact Ashley L.:
Challenges Kaya has faced recently:
· She’s smaller than her classmates
· She’s experienced challenges with her developmental and motor skills
· She’s had multiple vision surgeries
Inspired by his daughter’s journey, Essa has now served on the local March of Dimes Board of Directors for three years. He and Sara took Kaya to her first walk when she was just a baby and started a March for Babies fundraising team in 2014. Since then, they have raised nearly $40,000 through their participation in March for Babies and the Signature Chefs Auction during the last five years.
