Thursday, November 17, 2011

Spina Bifida Awareness: Meet Kayleigh

 Even though October and Spina Bifida Awareness Month is over, Tiffany from Growing From the Obstacles still want to continue bringing you a look at what Spina Bifida REALLY is, and the stories of our friends and family who live with it daily!!! We will feature stories of SB families and their journey every Thursday, as long as we have stories to feature!

Today we get to meet darling Kayleigh!

In 2009 I found out I was pregnant!

 Up until about 28 weeks I had a perfectly normal pregnancy. But once I hit the 28 week mark things changed, I was diagnosed with bacterial vaginosis. The next week I had some slight bleeding. Before I knew it my water broke. My water broke @ 29 weeks & I was admitted into the Med Center in BG, KY & immediately put on magnesium sulfate to stop contractions.

 I was put on a higher dose than normal & extremely out of it!! I was seeing double & talking out of my head. I was also given the steroid injections to help with Kayleigh's lung development in case she was born premature. I had a Foley catheter & was not allowed out of bed for any reason. Drugged, not able to move, bed bound, catheter,etc. All I could do was hold onto my baby girl!

I was at the Medical Center for 4 days then transferred to Women's Centennial hospital in Nashville to be placed under a high-risk OBGYN. Almost a month went by of me laying in bed. Kayleigh Ann kept us together! I had had several Terbutaline shots to stop contractions, Procardia 3 times/day by mouth, several ultrasounds & tests, lab work every morning, plus several different antibiotics & even on triple antibiotics at one point!!

I was awoken Jan 31at 12am with stunning pains. I was given another Terbutaline shot to stop contractions & it helped.

4 am came and the pains started all over again!

I was asked if I wanted another shot and I refused (it would just be the same thing). The Dr said to start Magnesium once again and I immediately burst into tears. Please God! I refused the Magnesium. I knew how it made me feel & how it made Kayleigh feel. I was already 4-5cm dilated so there was absolutely NOTHING they could do/could have done to stop the labor.

 9:53 am Kayleigh Ann Richards was born weighing 4 lbs 8 oz. Exactly 32 weeks. Thanks to March of Dimes Kbug only kept her oxygen until the next morning. The steroid shots for her lungs WORKED! She had a feeding tube, but it was never used so after a couple of days it was taken out.

When Kayleigh was born my husband noticed a skin tag on her butt and we were told it was nothing to worry about. The skin tag ended up falling off on it's own but the bump under the skin tag remained. She had several different ultrasounds, etc while in the NICU and we were told it was just fatty tissue and we would be sent to a neurologist for further testing after being discharged.

The "bump" she was born with grew as she grew. We didn't find out Kayleigh had Spina Bifida till she was 5 months old (when they finally said she was old enough to have an MRI).

The MRI showed she had a tethered spinal cord and we were scheduled for surgery. Kbug's surgery was around 7 months- she had a release of a tethered spinal cord and removal of lipoma (the "bump" she was born with). We stayed in the hospital for about 4 days. Kayleigh had ran a fever of 104 so we had to stay longer than expected.

 Once home the week after surgery her incision looked like it was trying to come open so we took her back to Vanderbilt. They assured us it was okay and sent us home with an ointment to administer to her back once a day.

 The next week the incision was showing signs of little pins holes. Once again we took Kayleigh back to Vanderbilt and her top incision was opening (apparently they had sent us home with the incorrect ointment to administer). Kayleigh stayed for about 4 days and was sent home with a PICC line where I had to administer IV antibiotics for 2 weeks- morning, afternoon, thru the night. It was A LOT! But through prayer and family support we made it through!

 Kayleigh's scar is now healed and fading with each day.

She's also walking unsupported and improving every day!

We are so thankful for the blessings we have been given!

Kayleigh is a joy!

Kayleigh is catheterized every 3 hours but we've been cathing since she was around 8 or 9 months so she's now used to it and we have no problems. God is constantly working miracles and we can not thank him enough for our little princess!

Stephanie Richards
"Remember that you were given this life because you are strong enough to live it"

Thanks Stephanie for sharing Kayleigh's story with us!

If you would like to be part of this on going project, please feel free to email your story to us at