Spina Bifida Awareness: Meet Taylor

If you are friends with me on facebook, you might recognize today's friend. A few days ago I asked you to pray for a precious girl named Taylor from our spina bifida family, well today you are going to hear Taylor's story from her mom Stephanie

    

 meet Taylor!

I was always told that I would never be able to get pregnant. I have stage 2 endometriosis & fibroid tumors on my uterus & I've had a handful of ovarian cysts since I was 17. I had 4 D&Cs, an appendectomy &my gallbladder removed due to the endometriosis.

I found out in April of 2010 that I was pregnant. Needless to say, I was completely stunned and dumb founded. Around 9 weeks I suffered a miscarriage. I sat there suffering this miscarriage all alone in a doctor's office by myself. I remember that my boyfriend James was in Camp Shelby, Mississippi for the Army and I wanted to record the baby's heart beat and send it to him so he could experience it with me. I had my cell phone out and all ready to go when the doctor performing my ultrasound said "are you sure you're pregnant?" My heart sank to my stomach and I had an emergency D&C a few days later because the baby wouldn't come out.

      Much to my surprise, I got pregnant in July. Just less than 3 weeks after I suffered my miscarriage. I had a normal pregnancy! I threw up what seemed like a million times a day for the first 5 months. I got dehydrated & was hospitalized a lot. But hey, I'll take it, I was still pregnant!

      At my 20 week ultrasound, the day we found out that the little baby I was carrying was a girl, the ultrasound tech couldn't measure the baby's head the way she was positioned. The tech called my OBGYN to come in & take a peek. I was thinking, “Ok, that's weird right? Maybe she's just being stubborn & she's comfy & doesn't want to move.” My OB couldn't measure her head either, even with me laying on my side, & getting my belly poked with fingers and prodded with the instrument.

      "I'm going to send you to our High Risk Clinic in Lexington to Dr. Campbell, just to be safe. It's probably nothing & she's probably just in a mood" is what my OBGYN told me.  In my mind I said “Ok, that's not too bad. We'll go to Lexington & everything will be fine. It has to be. Quit worrying Stephanie.”

      A week later, James & I drove over 2 hours to the High Risk Clinic. There I was getting examined by the tech is doing an ultrasound on me, & the doctor walks in. Doesn't even say "Hi" to us, instead he says "I can tell you right now what’s wrong with this baby" Again, my heart sank to my belly. There's something wrong with my baby? You've got to be wrong. Check again.

      The doctor walked up to the television that the ultrasound was being played on & starts pointing to her head & tells me its lemon shaped. My thought. “So? That's not a big deal.” Then he starts showing me her rib cage. Me: “K, that’s normal”, but then he gets to her spine, he says "See these white areas? Have you ever heard of Spina Bifida?" My thoughts: “Uh, no. I still believe you are wrong sir. My baby is fine.”

      At this point the doctor starts explaining to me what Spina Bifida is, while I'm wiping off the goo on my stomach from the ultrasound. James is sitting beside of me in a chair calm as can be. How could he be so calm?

      Dr. Campbell had told me that if he wanted one of his kids to be born with a birth defect (please quit saying that..) that this would be the one. At least you can fix Spina Bifida. He seemed optimistic.

      On the drive home, James called his mom & told her the news. I called my dad & tried my hardest to choke back the tears. I also texted a few people & told them. No one else that I talked to really knew what Spina Bifida was either. I went to where I worked & showed my friends my new ultrasound pictures of my baby & acted like everything was alright. I just didn’t know what to do.

      From there on out, I had an OB appointment every 2 weeks. I had routine ultrasounds to check the amount of fluid on her head because if it increased too fast I was going to have to deliver sooner. Thankfully the Hydrocephalus was stable, and there was no rush.

      I went into labor 10 days before my c-section was scheduled. I think she just ran out of room. I got transported to UK via ambulance, which was fun. (I hope you sense my sarcasm). I had to lay on my left side with an oxygen mask on, on a gurney & I swear, the driver hit every single bump from Ashland to Lexington. I just know he did!

      I had my baby, which we named Taylor Shea at 9:16pm on Sunday, April 10th 2011.

      She looked absolutely perfect from what I could tell. I was expecting that I would get to touch her or hold her as soon as she was born, but all I got was the doctor peeking beside of me with her in her hands. The doctor goes "hi mommy!" & then took off. I didn't have my glasses on, but she was the most beautiful blur I had ever seen! Taylor got rushed to the NICU, which we knew would happen, but I didn't expect it to be that fast.  I got stitched up & all that fun stuff.

      What we were told was "not a big deal" with her Spina Bifida ended up being a huge deal. We were told she had Occulta (enclosed lesion), when in fact she had Myleomeningocele(open hole in her back). Fantastic.

      About 7 hours after her birth, I finally got to go upstairs to the NICU to see my baby. It took me forever to get out of bed, the nurses wouldn't let me get up until I could wiggle my toes. I tried for HOURS to wiggle my dang toes. I think eventually the nurses just felt sorry for me & let me go.

      Taylor was even more beautiful than the blurry image I had in my head. Even with all the wires, tubes & IVs, she was perfect. That morning she had her spinal closure, plastic surgery fixed the skin around her lesion and we learned that night that her bladder didn't contract from the nerve damage. Ok, I can deal with all that.

      She went to eat the next day for the first time & flat lined. She had to get bagged & have chest compressions, the whole nine yards. So a feeding tube was placed. Her stomach muscles didn't want to contract so everything Taylor ate, came right back up.    At 18 days old, Taylor got a GTube & a nissan, because if she didn't she would die. There was no choice.

      After 37 LONG days in the NICU, we went home.

      2 days later, Taylor quits breathing at her pediatrician's office. I think we made a good first impression (insert more sarcasm!). She was rushed to the Cabell PICU where she stayed for 9 days. From then on, she was in & out of the hospital several times for respiratory distress.

      In July, Taylor quit breathing all together & died for the longest few minutes of my life. As I sat in the backseat of my car in the middle of Lexington trying with everything in me to bag her & give her CPR but her little body just wasn't having it. I remember screaming my guts out to the 911 Dispatch because the EMTs were taking so long to get to me & I kept screaming "Please Taylor, please" as I watched her go from pale, to gray, to blue, to nearly black as she lay limp across my lap in the backseat of my car. To this day, every time I drive down the road it happened, I have a rush of fear & panic.

      Taylor got put in the PICU for the 3rd time since she got released from the NICU & ended up getting a shunt & a trach put in the same week. The 2 things we wanted to stay away from. More fantastic.

      Three weeks later, we go home for a few days. We get sent back because she ended up getting pneumonia from the trach & the humidity. We were told it was unavoidable. "You did everything right. This stuff just happens" they said. Three weeks later, we go home again. This time we lasted 4 days before we were back with Pneumonia again, fantastic!

      This time, the doctors wouldn't release Taylor to go home. It was too far away from a hospital that would take her & we couldn't risk it again. So we either go to stay in the PICU forever. (Uh, no thanks). Or we could send her to Rock Castle which to me sounded like a nursing home (Even bigger no). Or we could move to Lexington. So we moved in 4 days, of course.

      Taylor got released that Monday & we spent 5 days in our new home with new rules to follow from the doctors. Taylor has to be on the vent 24/7 for an indefinite period of time. Woo.

      Five days later, we're back in the hospital. It’s hard to tell the difference between normal kid stuff and Spina Bifida kid stuff. She had a fever, diarrhea & was puny. She could have a virus, OR her shunt could be malfunctioning. So off to the ER we go. She had a virus & was hospitalized for 3 days.

      4 hours later James calls 911 while I'm at WalMart getting diapers because of an unexplained rash on her chest & increased heart rate.  Found out an hour later, she had pneumonia for the 3rd time since July. Really trach? Thought you were supposed to help.

      The next day, Taylor's lung collapsed & wouldn't re inflate. She was inches, no, centimeters from death. Her heart started to shut down, her blood pressure bottomed out, her oxygen levels were low. They put her on an oscillator & didn't expect her to survive the next 2 days.

      Just so you know, that was over a week ago. I'm writing this beside of her bed in her room in the PICU as she sleeps from all the sedation medicine she’s on. We are hoping for a full recovery, but the doctors said we will be in here for at least 2 more months as she gets over the sepsis she got from where her body started shutting down. And if she relapses again, they aren't sure if her body can handle another set back, so we are taking things one day at a time.

      There's such a broad spectrum of Spina Bifida. Occulta, Myleomeningocele, Meningocele, Lipomeningocele.. and every one's outs come is different.    What we were told would be "No big deal" has nearly cost my daughter her life. I remember Dr. O' Brian saying "ah you'll be in for a week, maybe two tops. They'll put a shunt in her head & close up her spine & you'll be on your way". Well, he was wrong, & if I ever see him again, I'm going to kick him in the shins. No lie.

      129 days since April. I've almost lost her probably 5 major times.

      I carry an ambulance bag with me everywhere I go.

 She's on oxygen, a ventilator & a feeding pump & has had quite the rough beginning.

      But I love every single second of being her mother. She has taught me patience, understanding & has given me a whole new outlook on life.

Yeah, I go days without sleep because she alarms all night. I've had to sit & rock her for hours on end & let her chew on my hand because her gums hurt.  I have had to bag her to bring up her oxygen saturation & the PICU nurses know us by name. But you know what, that's alright. Not every mom out there will go through some of what I have & still see the light at the end of the worst tunnel in the world.

 I’ve had so many people tell me how good of a parent I am for doing this, but I don't think I'm doing anything spectacular. I mean, if you love your child, you'll sacrifice for them & do anything in the world for them. I actually feel like the biggest failure in the world. Parents are supposed to protect their babies from all the horrible things in life & I can't. I have felt like I was being punished for something. But I finally realized, I'm meant to do this. If a baby like Taylor was born to a set of dead beat parents, she would have never made it this long.

      &Every time I look at her chunky little face I melt. She grabs my face & eats my nose & smiles. That makes every sleepless night, every fight I have with James, everyone I had to seclude from my life to take care of her by any means necessary, the move to Lexington, all worth it.

      I love her more than anyone will ever understand & wish so very badly that I could trade her places.

      *May you never take one single breath for granted, Stephanie

Thank you Stephanie for taking time out of your busy day of caring for Taylor to share your story with us! Please everyone, continue to keep precious Taylor in your prayers as she fights her fight even right this second! We all know God has big plans for this little girl!