“She goes to other children and talks all about her “belly button” as she calls it and shows off her MiniONE® teddy bear she received most recently.”

Skylar’s Mom

Skylar was a very busy baby during the pregnancy.  Always kicking and moving around. I found out I was pregnant for a second time and was praying it was a girl (since she has an older brother and now a younger sister).  During the pregnancy, I was sent to genetic specialists. Some tests were done and they were certain she was going to be born with Spina Bifida.  I was asked to do a spinal tap but was told it was a 50/50 chance of losing her and I didn’t want to take that chance.  My husband was quite upset thinking we would have a child with medical needs for the rest of her life but I was determined to take every day as a blessing and deal with what would come our way later down the road.

Skylar tried entering the world at 25 weeks.  We stopped the labor and continued to wait.  She tried entering the world again at 30 weeks but I was not ready yet, so again we stopped the labor and waited. At 35 weeks, my water broke.  I knew she was ready and wasn’t willing to wait any longer so off to the hospital we went.  Skylar was born that night on September 18th, 2012 at 11:06pm weighing 8lbs 2oz.  She was perfect.  No spina bifida.  She was born with a cleft palate but that was easily fixed. She was an angel and I was the luckiest mom in the world.  At 6 months old Skylar was diagnosed with RSV.  Luckily I had taken her to the doctor when I did because her oxygen levels were deteriorating fast.  We were picked up by an ambulance and sent to the ER immediately.  Skylar was on oxygen for over a week and I never left her side.  She stopped eating and couldn’t function well anymore.  It was like her body sent her back to a newborn.  She was no longer able to breastfeed and it took her over an hour to complete 1 ounce of Pedialyte.

We were back to square one and I had no idea what had happened but I wasn’t giving up on my little girl.  The day we were discharged I was given a nebulizer for breathing treatments and her mouth piece.  I was determined to get my baby girl some help, so after a day of pondering the events that had taken effect over the past 2 weeks I found Pediatric Boulevard.  Skylar was placed in feeding therapy, occupational therapy and physical therapy 4 days a week.  She had to be taught how to crawl, how to sit, how to play with toys, how to walk and how to talk.  Everything a child learns by watching other people and using their cognitive and motor skills to do, my baby girl had to be taught.  We were at the genetic specialist every 6 months for the next 3 years. We had done all of the testing they would do on her but nothing was ever diagnosed. It was always a maybe this or a maybe that.  The only definitive thing they could tell me was that she was born with a small mandible, low muscle tone in her entire body, and that she was a cerebral palsy candidate but no one wanted to officially diagnose her.

At 2yrs old Skylar stopped eating.  She would gain weight and then lose twice the amount.  She was below the 1% of children her age in weight and height.  I had to purée everything for her into smoothies. She couldn’t eat meats or she would choke.  So with no answers from the genetic specialist, I was determined to at least get an answer for something.  I changed pediatricians and was immediately given a referral to a gastroenterologist. We decided that Skylar was in need of a peg g-tube.  So surgery was set up and she did amazing.  A week at Children’s Levine Hospital and my baby girl seemed happy, happier than she had been in a very long time.  After a year of having the peg g-tube, we were constantly having problems.  Skylar would start bleeding from her stomach as she became more active and she would wake up most nights crying in pain from her stomach.  Back to the gastroenterologist we went and decided she needed to be changed to the MiniONE® Button.  Surgery was set up again and she did great.  I was a very happy mom.  We have had the MiniONE® Button for over a year now.

I taught Skylar that there was nothing wrong with her, that she was the same as everyone else in this world and that she has something even more special than other people.  She goes to other children and talks all about her “belly button” as she calls it and shows off her MiniONE® teddy bear she received most recently.  Skylar is now 4yrs old.  She was taking 6-8 cans of Pediasure a day including overnight feedings when we started with the peg tube and now we have bumped her down to 4-6 cans with no overnight feedings on her good days.  We still struggle with maintaining weight but we’re in the right direction.  Today, Skylar still has lower oxygen levels than most children her age.  A simple cold can cause her to stop breathing and put her back into the hospital again. But, we remain hopeful that one day we will get the answers we need to continue moving forward in the right direction.