Meeting Madilyn
Today, my life at age 31 is nothing like I ever imagined it would be over a decade ago when everyone was telling me to figure out what I wanted to do with my life. I guess a lot of people say the same thing... and isn't that part of the beauty of life? If everything was as we expected and went as planned, it'd make for a pretty boring day. And all those boring days would add up to a pretty boring life. Just think, how would we know true love without the heartache to compare it to? What would you do without the feeling you get from that powerful surge of courage jolting through your body just when you need it the most? See, it's the unexpected in life that makes it exciting. Possibliity, however scary or intimidating, is part of what keeps me going day after day. My life is a grand example of this theory I believe, and my daughter Madilyn is at the center of it all.
For me, my life changed the summer I was 20 years old- the day I found out I was pregnant; It was a time when my life was set to "coast" and things were pretty easy going. I had everything I needed plus a little more. I was going to college and hanging out with friends with few cares and responsibilities in the world. Sure there were a definitely some things that weren't perfect, but looking back, not many of those things would get much of my time compared to what I've dealt with since then. By that winter, my life had changed drastically. I went from the stereotypical Southern college sophomore to the mother of a child with special needs.
My sweet Madilyn Grace was born on February 21, 2005. It was Monday- Presidents' Day, and had it been any other year, I would have been picking out a horse to bet on at Oaklawn instead of in a hospital delivery room giving birth to the little being who would show me a whole new world. She was 7 pounds 6 ounces and 18.5 inches long. She was tiny and pink when I first laid eyes on her that afternoon. I only got to see her for about 5 seconds before the Angel Care Team, whom had been on standby down the hall, whisked her away before I could even touch her.
I had been told a couple months before my due date that there were major concerns with her facial features, specifically her eyes and ears, as well as her brain, heart, and a long list of other possibilities. It was very likely that she would be blind because of an extremely rare eye condition called anophthalmia in which the eye tissue and optic nerves fail to develop. Why? No one knows... But, I had been informed that no one could really predict what to expect in regards to her ability to survive after birth. It took some time but I had finally found my peace with it all a few weeks before she was born and gave it all to God.
Okay... She was definitely blind.
That evening a group of doctors visited my room after I woke to talk to me about Madilyn's health. I had been sleeping off the pain medicine and recuperating from the sheer exhaustion of delivery. It must have been close to five hours after she was born that I found out what was happening. I remember the woman doctor in the group coming up next to the head of my bed first. She told me that Madilyn was at Children's Hospital on a ventilator to help her breathe. She explained further that Madilyn hadn't been breathing when she was born but they were able to resuscitate her. I thought back to when I saw her for those first few seconds. She wasn't making any noise.
Okay... She was on a ventilator but she was breathing so she already made it that far.
The doctor looked away for a moment to take a breath then looked back in my direction to say, "Your daughter doesn't have eyes and she is blind." I nodded in understanding that I heard what she said. Then she looked me in the eyes, pausing for a moment to assess my reaction I imagine, before going on. Maybe she expected me to be in shock, I don't know. Unlike many parents, this actually wasn't an utter surprise since I had already been told it was in fact a strong possibility. It didn't feel like it at the time, but I think I was lucky that I had been given the time to process it beforehand. Still, having it confirmed by hearing the words "she is blind" aloud and finding where to go from there, was a whole other story entirely.
Along with the diagnosis of bilateral anophthalmia (neither eye nor optic nerve was there), Madilyn also had other craniofacial anomalies including an underdeveloped nose that was very small and kind of smushed to her face with itsy-bitsy nasal passages that weren't big enough for her to be able to breathe through. Hence, she could only breathe through her mouth, which she wasn't even doing. The doctor explained that infants are primarily "nose breathers" and so it was almost expected that she would need the ventilator. "That sort of makes sense I guess," I thought. Whether she would eventually learn to breathe through her mouth would mostly be up to Madilyn.
The doctor continued to explain that brain defects and hearing problems were often associated with theses types of craniofacial abnormalities but they couldn't give any information on her ability to function on her own yet. They would schedule an MRI and other tests for the end of the week.
Okay... She wasn't quite 'in the clear' as I had prayed to hear.
Another doctor stepped forward to discuss even more. To feed her he explained, they had to perform an orogastric intubation where they inserted a tiny tube in her mouth, down the back of her throat and into her stomach. Nurses then used a special pump device that was programmed to deliver formula straight into her stomach at a constant speed on and off throughout the day.
Okay... She had a definite way to get nutrition, another essential for survival could be taken care of for now.
They ended our conversation, which was mostly one-sided, with "We'll be in touch with additional diagnoses and updates." Adding, "Remember, you can call to check on Madilyn anytime you want," before stepping out the door, leaving me to begin comprehending the myriad of information they left with me. "Additional diagnoses...?" There would still be more to come...
Okay... She was breathing with the help of a ventilator, she was being fed through a tube, and she was blind. She was fighting...
My body was still so tired though that I don't think I had the ability to think much more than the fact that at least for now it seemed, she was doing okay. It was enough to get me through the night in order to rest, but "What else would they come back to tell me?" I wondered before I falling back asleep.
