At a normal check up at about 29 weeks of my pregnancy, my doctor had noticed that my belly hadn’t grown since my previous appointment 2 weeks earlier.  At my next appt. – 31 weeks into my pregnancy, my belly had grown only a small amount

This is when we had decided to go ahead with an ultrasound to measure the baby and try to determine what it was that causing the sudden decrease in growth.  What we found was that Rylynn was suffering from Interuterine Growth Restriction, or IUGR. 

Basically what was happening was that for some reason, there were very little nutrients being passed onto Rylynn through the umbilical cord.  For this reason, Rylynn’s body had adapted itself to make the most of the nutrients she was receiving. 

We found through the measurements obtained from the ultrasound that Rylynn’s head had continued to thrive at a fairly normal rate, while her chest had continued to develop but a slower rate and her arms and legs had all but stopped growing completely.  This was her body’s way of taking care of itself.  What was happening was a primary supply of nutrients had gone to developing her brain while a secondary supply had gone to developing the necessary organs in her chest.  Rather then wasting good nutrients on developing limbs, we were lucky in that her body knew what she needed to survive.

For the next five weeks, we continued with ultrasounds every other week, non stress tests two – three times a week to monitor her movement and heart rate and of course regular weekly appointments with our doctor. Our doctor was ready to go ahead with a c-section if necessary at any time, but the goal was that we would make it to the 37 week mark in hopes that Rylynn’s lungs would be fully developed and she would not require any assistance with her breathing.

Fortunately for us, this little girl held on as we had hoped and while there were times she had all of us in a little bit of a panic, there  was never a point in which she was in serious distress.  When we finally hit the 37 week mark, with a huge sigh of relief our doctor said “Let’s get this little trooper out of there before we push our luck.”

I was induced in hopes that with a little bit of help, Rylynn would decide on her own free will to enter into the world.  After 18 hours of labor Rylynn’s heart rate dropped drastically and an emergency c-section was performed.  Within a matter of minutes, I was prepped for surgery and with my husband at my side in a room filled with about 12 doctors and nurses the procedure began. 

Listening to all of the doctors and nurses divvy out responsibilities as to who should prepare for what when this little one was out was mind boggeling.  The doctors and nurses from the NICU seemed to be hovering over me and it all seemed so frantic.  The cord is wrapped around the neck our doctor said.  They unwrapped the cord and began pulling the baby out.  The baby wasn’t crying.  With a couple pats on the back we finally heard the tiniest sweetest little cries a parent will ever hear and then we heard those words we had waited 37 weeks to hear.  “It’s a girl”

I looked at my husband and with my hand in his, for the first time in weeks we both felt relief.  Greg wasn’t able to hold her and we had only about 10 seconds to see her, already all bundled up before she was taken from us.

Later that day when we were taken to the NICU to see her, I think we were both still in a little bit of a fog.  It all seemed so surreal.  One minute your in a room filled with all of these people – all of them talking & planning.  You’re expecting a baby and you’re scared for that baby’s life.  In the next minute, it’s all over.  Everybody is gone and they’ve taken your baby with them.  It’s a feeling that can’t be described and you can only hope a parent never has to experience.

Really seeing our baby for the first time came as a little bit of a shock to us.  We knew what to expect – that she was fairly disproportioned and she was going to be small.  However, nothing can prepare you for the sight of a child who doesn’t even reach from the palm of your hand to your elbow. 

While Rylynn did weigh nearly 5 lbs at birth, the majority of her weight was in her head.  Looking at her you would think there is no way this child is almost 5 lbs.  Her chest was so small and her arms and legs were tiny.  I was so scared to hold her in my arms.  She had so many cords hanging off her.  Her respiratory and heart rates were being monitored as well as the oxygen saturation in her blood and she was being fed through a tube in her nose.

There were five other babies in that room with her.  Most much smaller then she was.  There were babies in there that had been born 2-3 months early, weighing only a pound and a half.  I looked at these other babies and actually felt lucky that ours was as developed as she was.

During the course of the next six or so days, we sat by Rylynn’s side as her weight dropped to a tiny 4lbs 2ozs.  Meanwhile, various specialist were administering various tests.  NICU doctor’s were concerned about the fact that a “full-term” baby was so underweight.  They performed x-rays and various lab tests.  We discussed family history again and again – trying to find some missing piece of the puzzle.  It just wasn’t making sense to doctors that she was so small, yet all of her tests came back perfectly normal. 

By 12 days of age, Rylynn had learned how to feed by herself and the tube was removed her nose.  She had also regained the weight she had lost and finally hit the 5 lb mark.  After maintaining her weight of 5 lbs for 48 hours, Rylynn was released from the hospital and we were finally able to bring our baby home with us.

Since then, Rylynn continues to measure quite small for her age and we still have no explanation as to why.  We were so excited when at two and a half years she had began to make her way up the measurement charts.  She had made a big jump moving from less then the 1st percentile in weight to the 3rd percentile and she had gone from the 5th percentile in height to the 10th.

Because of the intrauterine complications, Rylynn’s vision will never be great.  She has severe nerve damage in her right eye and has very little vision out of it.  She will loose vision completely in her right eye in a matter of years.  She has undergone surgery to correct some drifting in both eyes and will likely have another one in the near future to further correct the drifting in her right eye.

Due to her small size and developmental delays, Rylynn has a list of speciailists that seems to go on forever. Over the past 3 years, Rylynn’s list of specialists and doctors includes: a genetist, an endocrinologist, a cardiologist, an audiologist, a pediatric neurologist, a pediatric opthamologist, a physical therapist, an occupational therapist and a speech therapist.

Each have done their tests and tried to find the answers and all have come up empty handed.  What we do know now is that Rylynn is absolutely amazing.  She is a smart, active, happy and healthy 3 year old.  And while she is still on the small end for a child her age, she continues to make huge strides to close the gap. 

Every minute of everyday, I am thankful for the care Rylynn received while in the hospital those first two weeks.  I am grateful for the knowledge of the staff and that the hospital had the equipment needed to keep her and her roommates safe and healthy.

Rylynn is an amazing inspiration and she has been my rock.  Through all of the MRI’s, x-rays, lab work and her surgery, she has been so strong – moreso then I could ever be.  Her ability to take it all in stride would make any parent proud.

Greg and Jen Zanon
2009 Nashville March for Babies Ambassador Family