We are a family of 5......
I guess our story began in October of 1997 when I returned after class to my apartment at ECU to find a rose on my doorstep. A little while later I found out who left it there, a few days later we had our first date, a little over a year later he asked me to marry him, and almost two years later, we were married.
And then a few days after that, he asked when we might have our first child. Me! the woman who doesn't "do" babies. Well, I managed to hold him off until October of 2001, again almost 2 years. Something about the events of 9/11 and the cutest little bumble bee that showed up at our door to trick-or-treat finally tipped me over to his side.
Nine months later, we receive our first gift, Jayda Emmalyn. We learned 5 days before her birth that she had a condition called Hydrocephalus and that she would have to be born at UNC-CH to undergo immediate surgery. We were scheduled to be induced there on 7/9/2002, but, just like now, she had her own plans and I went into labor on 7/7/2002. We were airlifted to UNC together while I was in labor. After she was born, the doctors could not confirm the diagnosis, so they did not place a shunt at that time. After several months of follow-ups, lack of development, and parental worry, she was finally shunted in May 2003. Her improvement was immediate and the only lasting effects were gross and fine motor issues on the left side of her body (aka-left sided hemiplegia, hypotonia; aka- left-sided cerebral palsy). After an eye surgery and YEARS of physical therapy and occupational therapy, we now have a beautiful nine year old who is bright, articulate, loving, social, dramatic, creative and funny.
It took quite a while before he could convince me that we should try the kid thing again. As scary as it was for me, I knew that I wanted a sibling for Jayda more than anything. So, in June of 2006, we learned that we would be having just that. Several weeks later, we found out it would be a sister. After some slight pregnancy drama ensued, we welcomed our next gift, Brynn Elizabeth into our lives on January 30, 2007. She is my mini-me in almost every way and sometimes just the sight of her makes me laugh. She's one of those kids who never gets in trouble, not because she doesn't do bad things, but because she's so stinking cute and funny that you can't even pretend to be mad. She is our little ninja (very quick and sneaky, especially when it comes to stealing cheese or chocolate) and has also been recently named an "intentional defacer". She puts stickers on furniture! She even wrote on the vinyl siding on the front of our house with crayon. Who does that?!? We also have a sneaking suspicion that she may end up on "Hoarders" one day. Let's just say that her favorite toy is her play shopping cart filled with toys and clothes that she pushes around the house. Her favorite past-time is driving her big sister nuts.
Fast-forward to a year ago. We had just learned that we were going to have yet another Copeland to join our family. A boy this time? Can we do this "zone defense" thing, rather than "one-on-one"? Fear and excitement ensued, until we learned that there seemed to be two babies instead of just one. That's when fear and excitement turned to sheer panic and shock. We couldn't do two more, could we? At once? No way! A few short weeks later we found that "Baby A" stopped developing, so it would be one after all. We felt every emotion, from grief to guilt to relief, to guilt again, and of course feared that this might mean another loss down the road a little further. A few weeks later, the news that it was another girl! We kept on keeping on and things continued to go well.....until the end of June. I was diagnosed with Polyhydramnios and the doctors began frantically searching for a cause, as they knew it could be related to the baby's digestive system. Test after test, ultrasound after ultrasound, and no real reason found. I had 39 cm of amniotic fluid, where normal should have been <20 and, although I was really having one baby, it looked like I was having 3. On August 3rd, I went into labor, even though I was not due until September 1st. Fortunately, the doctors had prepared us for this. We held on to belief that there would be no problems for our baby, but we asked our most wonderful pediatrician to be in the OR with us, just in case. At 2:59 that afternoon, we received our 3rd gift, Clark Jamesyn. Bryant learned very quickly that there were indeed issues, but because there had been some complications in the OR with me, it would be an hour before he would be able to (or maybe have to?) fill me in. All we knew was that her esophagus was closed and connected to her airway, and that she had a little, malformed right ear. We also knew that the helicopter was on it's way to take her to Chapel Hill for surgery and this surgery was the only way she would survive. Within minutes of being released from the recovery room, the flight nurses brought her into my room for one last goodbye before they took off. Of course, Bryant would leave shortly there after to be with her in the NICU and through her surgery. I was left to recover from the c-section, but my doctors released me less than 48 hours later so that I could join them.
Then the blessings began:
Blessing #1: Her EA/TEF was repaired immediately, which is not always the case. There are several types, and she has type C, which is the most common and most easily repaired. Many kids have to wait to grow before they can be repaired and sometimes, this means multiple surgeries and months in the NICU.
Blessing #2: She began eating well immediately after recovery (Day 8) and was released from the NICU in 14 days. This is amazing and can mostly be attributed to the fact that she did not fall under a VACTERL diagnosis. Many kids with EA/TEF also have severe heart, lung, renal or other conditions, as well. Clark's only other condition is Microtia and Aural Atresia and related Hemifacial Microsomia. She also has severe Tracheomalacia, which is very common for babies with this condition.
Blessing #3: She has the best surgeon, doctors, nurses, therapists and caregivers EVER! I could never in a million years say enough Thank Yous to all they have done and will continue to do for her and us.
...and the blessings just continue, day after day!
Of course, the doctors have tried to find genetic reasons to explain why we have two "medically special" children, but have been unable to prove any genetic causes. They believe that Clark's condition developed as a result, and at the time of, the loss of her twin, as the timing correlates to the fetal development of both the esophagus and ears.
Clark will be 5 months old tomorrow, and, although the road has not been "bump free", she is doing well. Most of her issues have resulted from the Tracheomalacia. She has difficulty breathing to varying degrees, but especially while eating. In October, her surgeon performed another surgery called a Nissen Fundoplication to control her reflux, which was found to be the cause of most of her apnea spells. There was amazing improvement in her breathing after this, but she also had to get a g-tube because the Nissen keeps her from being able to burp. The g-tube is used to "vent" the air out of her stomach and sometimes to feed her.
So, that's the story in a (slightly large) nutshell. As I said in my Introduction, everyday is an adventure, but we do our best to meet every challenge with courage, humor, and faith. The main reason I started this blog was to keep our friends and family informed about what's going on with us, but also to connect with other families that may have been blessed with babies with hydrocephalus or EA/TEFs. We hope you enjoy getting to know more about us!
