Pediatric Nurse tells her story giving birth to a Child born unable to swallow in USA Ea-Tef

Pediatric Nurse tells her story giving birth to a Child born unable to swallow in USA Ea-Tef

TEF from Oakland, CA Rylei-Rose, (Received 2020)

I was diagnosed with Polyhydramnios at 20 weeks gestation.

I could barely walk and I knew something was wrong. I was already the size I was with my first pregnancy at 8 months pregnant. I was sent to 2 different specialists plus my regular OB/GYN every week. One for genetic testing and Ultrasound and the other for stress testing (which they could never hear her heartbeat for too long due to fluid). During the genetic testing, I was told that all of her organs were accounted for (on their high tech 3D machine)and things looked like they were anatomically placed.

I am a pediatric nurse myself and was always on my feet at the time and asked my OB/GYN several times to allow me to take off from work early and she refused.

I grew very tired and was in severe pain every day, it felt like my hip/back might break at any minute. I went in to labor at 34weeks. My husband rushed me to the Mother/Baby ward to be triaged and sure enough, I was dilating and my contraction were hard and true. I began to panic because it was too early to be in labor but a part of me also felt relieved, because of all the pain. I labored for 1 week in the M/B ward because they wanted to try to keep her in as long as possible and my water hadn’t broken just yet.

Finally, 1 week later I could take it anymore and begged my MD that day to induce me and she agreed. On 9/11/2018, after having my bag of water manually popped, I began to push, but my daughter’s heart rate dropped. I was rushed to the OR and underwent a C-section. She was weighed at 4lb 13oz. Meanwhile, I was having a reaction to the anesthesia and could not stop shaking. It was a very dramatic welcoming into the world you can say. All of a sudden I hear the MD yell get the baby over to NICU ASAP! I began to feel scared and confused. I, unfortunately, had to go to the postop area until my vitals were stable. My husband was keeping me posted explaining to me that the MD had just spoken to him and informed him that my daughter needed surgery as soon as possible and that she had a condition called Tracheal Esophageal Fistula with esophageal atresia (I said “WHAT IS THAT?” and I’m a Pedi nurse okay!). I didn’t know how to feel… it was unbelievable, to say the least.

Before being taken back to my room I was asked to be wheeled to my daughter just so I could at least see her face and tough her hand. All I could do was cry when I looked at her, all of these scary and unknown feelings were running through my mind and I did not have enough clarity in my mind at the time to ask the right questions. I remember walking down to her room as I was transferred over to the room gurney bed. I was moving sooooo slow because all of the fluid in my legs felt like bricks and I was being assisted with a walker and my husband’s arm. Once we got to the room I stayed in the room and didn’t leave her side until they had to whisk her off for surgery and then I finally went back to my room to await the news…

Finally, we got a call from the OR saying that she was doing great and they should be finishing up soon. The surgeon came and spoke to both my husband and I and explained the whole procedure and his expectations(he explained it prior as well, but I think my husband and I were in deep shock of everything that had just transpired). All we could do was wait and pray. After the 5 hour surgery, we went to meet our baby in NICU to comfort her. There she was intubated, placed on a ventilator, and a bunch of other wires attached. It was the scariest thing I’d ever experienced. She de sat’d more than I’d like to count and was completely lifeless twice.

I cried myself dry for 20 days right next to her. I never left the hospital.

Finally, something came over me and was said “get up! Wipe those tears! And get to work! Yes, you are mommy, but you are also a pediatric nurse yourself!”

And so I came back to my daughter’s room and took charge. I started recording her feedings and slowly increased her feedings when I felt they were needed and she responded a lot faster to me. This made me start to feel great and a lot of the thoughts of “what did I do, how could this happen?” started to fade away. Before you knew it I was removing her NG tubing and watching her extubation go to Hi-flow then to wall air. And shortly to non-assisted room air. I was one PROUD MOMMY! Her GT tube was being removed where her lipid nutrient was being administered. Everything was looking up. I decided to go home one night to get some rest and be with my husband at night (I really missed sleeping with him in our bed), and received a call saying that she’d de sat’d again and almost had to be intubated again.

My husband and I rushed back to the hospital and she was back on Hi-Flow and vitals were stable. It was an emotional roller coaster. Every time someone would try to talk to me and “see if I was okay”, I wanted to tell them to FUCK OFF! I didn’t want to hear anyone’s sympathies or apologies that my baby was going through such a traumatic experience. I just wanted her home…I wanted to go home… I wanted to go home with my baby in hand. It just seemed so far away from happening at the time. My husband held me up emotionally and my mom…my mom was my rock. She was taking care of me while I was focusing all of my attention on my daughter (what a chain reaction).

The final week being there, I picked my tits up and pushed on. If I could get my daughter on the right path before I could do it again.

I recycled the care I gave my daughter the past week, but this time I never left the hospital, not even the NICU. And back to room air in 1 week, it was. A-MA-ZING!!!

We were home 10/8/2018 smiling and thanking GOD that everything went well. She is now 19 months and lives a very full life attitude and all. And I LOVE every bit of it. Her eating is a fragile state, but she does great with tiny bites at a time and pureed food. We feed her 6+mo foods at the moment because she tends to digest that better.

She is not able to digest her own bites of soft fruit yet, but we are working on it.

I appreciate this opportunity to tell Rylei-Rose’s story. I hope it helps the next family!

Meet my Daughter