Nylas Story

I created this blog to follow Nyla through her problems resulting from her prematurity. This is her story...

We found out we were expecting Nyla in July of 2004 after a year of trying to get pregnant and finally resorting to fertility drugs. I suffered a partial placental abruption at 11 weeks and was told there was less than a 50% chance that our baby would survive to viability. We left with little hope for our unborn child. The days slowly turned into weeks as each checkup produced a healthy strong heartbeat from our developing baby. At 23 weeks we had a preterm labor scare, and again at 29 weeks when I was sent home on strict bedrest. By the grace of God we made it 2 hours past the 33 week mark before my water broke without warning and we were rushed back for an emergency c section. Baby Nyla Marie arrived on February 22nd 2005 a full 7 weeks too soon weighing in at 4 pounds 5.6 ounces and measured 16 inches long. After an uneventful 10 day stay in the Neonatal Intensive Care Unit Nyla left the NICU behind her forever weighing just 3 pounds 14 ounces. The was thriving at home; gaining weight well, breastfeeding like a champ, and meeting her developmental milestones better than expected.

Nyla got RSV when she was just 10 weeks old; but was not hospitalized. She recovered at home, but little did we know this virus would leave lasting damage to her tiny lungs. She continued to thrive until 11 months old when she came down pneumonia. After that infection she started on a downhill run that has yet to stop. She contracted croup, RSV, pneumonia, bronchiolitis, and so on over and over. Each infection went straight to her immature lungs resulting in wheezing, stridors, and chronic coughing. At the age of 23 months she was diagnosed with asthma and started on a prevention plan. Her growth started to suffer until she fell into the 'failure to thrive' category. By 3 years old she was still suffering lung ailments, not growing, and spending most of her time groggy and tired. She had a simple test to check for a few of the most common mutations of cystic fibrosis but it came back negative.

Nyla just turned 5 years old and the pattern of bad lungs, chronic infections, and poor growth continues. She is on a concoction of medications to try to keep her healthy but so far its not enough. She uses Ventolin, FloVent, Singulair and Prednisone for asthma; Prevacid for GERD, as well as extra vitamins and PediaSure foor poor growth and poor immunities. Just 3 weeks ago we were at the hospital with yet another bout of RSV. Each year has been worse and worse for her. We have attempted 5 times to get her under anesthetic for a simple dental surgery, but each time her lungs have not been healthy enough. She is scheduled to have this surgery done at Primary Children's Hopital on the 15th of march, and we are all praying that it goes well.

We are now looking at further testing for cystic fibrosis as well as a full immune panel. She will most likely be having her tonsils and adenoids removed as a result of 'ruling everything else out' that could be causing her chronic sinusitis. Please feel free to join us through the ups and downs of this journey.