The Rollercoaster

Arwynn was born in October 2004. After finding out she was born with cataracts our whole family was crushed. We didn't know what to do next, but thanks to the eye clinic, a path was already set ahead of our feet. In November Arwynn had her first surgery to remove the cataract from her right eye. In removing a cataract from the eye, the lense inside the eye must be removed and (in adults) be replaced with a man-made intraocular lense. In infants, the lense isn't replaced until after the age of 2. So Arwynn's right lense was being removed. I will never forget the shakes I had from the moment they took her from my arms, to the moment I was allowed into the recovery room after surgery. I can't remember how long she was in surgery, but I can't forget those shakes. Even more than the shakes, I can't forget the smell of the recovery room. It's as if the smell of the anesthesia burned the inside of my nose. It was made permenant, and I can still smell the anesthesia, although I know it's nowhere to be found. I walked into recovery (smelling anesthesia, and then a strong formula smell) to find a nurse I knew quite well holding my baby in a rocking chair, wrapped in blankets, tubes and moniters connected to her all over. She assured me over and over she was ok, and my job, for the moment, was to hold her, comfort her, and try to get a little bit of food into her. She hadn't eaten for so long, for a baby who was suppossed to eat every 2 hours, it had been an eternity. But she didn't want to eat much, so I just rocked her and wouldn't let her out of my sight, or out of my arms. She cried and whimpered and slept. My husband was there the whole time, relaying messages to family members. We stayed the night in the hospital that night, in a little room on the pedeatric floor. The door was made to look like a little navy blue house, and our nurses name was Rocky. It's strange what you remember; if I could paint a picture of it all, it'd take a lifetime.That first surgery was the hardest and most vivid for me, everything was new for me. A new mother, a new baby, and then all this. I didn't even know babies could go through this. And there was much more ahead.


We finally went back to my mother's to heal, being sent home with more eyedrops than I knew existed. (Preforte 6x a day, Tobramycin 4x a day, Cyclogyl 2x a day, Tobradex 1x a night) There may have been more, I honestly can't remember. We did this and patched her eye for 2 wks. That metal eye patch and all the paper tape was so much worse than all the medications. The paper tape ripped her poor face, she looked like she'd been burned all over her face. I hated every second of pulling off the tape. But I knew her sight depended on me.

Still in November, but two weeks after the first, she had her second surgery. Her second surgery was nearly identical to the first. Except this time it was her left eye, and the pedeatric ward had given us a little peach house :)  More needles and paper tape and doctors I'd never seen. But her opthalmologist had found that her eyes looked great behind the cataracts, she had a healthy optic nerve, he was no longer concerned about her pituitary gland. Things were looking up! Then a medical student, training in the hospital, thought he heard something wrong with her heart. He was right.

When we were young...

I met my husband in high school, and by our senior year, we knew we wanted to be together for the rest of our lives. I know it sounds cheesy and cliche, but that's how it worked. I'd planned on starting college in the fall, and so had he, so we had everything lined up. I got my vaccines for college in March of that year.I found out I was pregnant a couple of months before graduation, and we decided just to keep it from the high school drama (of course our parents knew as soon as we did) and we started preparing for a new future. I was still going to school, and we started saving for our own place. At 21 wks, I had an AFP test done for Down's Syndrome. It came back positive and we had to do special ultrasounds and see different doctors, who assured me it was most likely a false positive because the test is supposed to be done between 16 and 19 wks. We were scared, but it didn't matter, I wasn't going to do an amniocentisis just to know for sure. It didn't matter if she was born with Down's Syndrome. She was ours. It. didn't matter

 Fast forward to October 2004, we had a home and Arwynn was here smiling at us, a perfect 7 lb 9oz baby girl. It had been a false positive, so we celebrated her health and ours as well, as the labor was a little difficult. The nurses just fell in love with this little baby who's eyes were open the whole time she was awake, she had a tiny bruise on her forhead, but that's all....she was beautiful, and pink, and perfect. Until we got ready to leave...the nurses had discovered there was no red reflection in her eyes (like when you get red eye from a photo), and this was a problem. We couldn't go home. My husband had to go back to work. But we couldn't go home. My mother and I (thank God I have her) rushed her to the local eye doctor, who in turn sent us to the only Pediatric Opthamologist in our region. (He moved here in July of that year) It was 5 o'clock before we got there, and that man and his wonderful assistant stayed with us intil 7 o'clock that evening, just to check and double check Arwynn and explain everything to me he could. I will never forget that first visit. I think he was sent here for us, for my daughter.

He explained to me Arwynn had congenital catartacts (bilateral), and he gave us the worst case scenario. The blood vessels in her eyes could also be underdeveloped or connected where they shouldn't be in her eyes, but he wouldn't know until the surgery. (What! Surgery, on my newborn baby!?!? Needless to say, on the inside, I was a train wreck.) She could only see light and shadow. My daughter was blind. She needed surgery, surgery that may not help. Turns out, Dr. Carlsen was a pro at this, specialized in this, developed surgical tools and techniques just for this! This man was sent from heaven, for our daughter. His first patient with cataracts in his new home. My mother and I cried all the way home, she blamed herself for Arwynn's condition because she'd been so upset when she found out I was pregnant. She hadn't wanted this. I blamed myself because I'd gotten the Hep B vaccination (not knowing I was pregnant) and I thought I was the cause. I've never been so confused, sad, scared in all my life. Then began the real rollercoaster.......

Arwynn and her daddy, not a baby baby, but I'll try to get those soon!

My Beginning

First I want to say I am completely new to all this, so bear with me if some of this is incorrect or terrible to navigate, or anything else wonky and difficult. I wanted to start this blog because of my very special daughter, and because there is such a small amount of information about her condition/s. I have been looking for years for support groups and other parents with children like my Arwynn, and found very few, even less who wanted to keep in touch and share stories and advice. (Some new sites to me have actually inspired me to do this!) It will take me some time to make a timeline of Arwynn's story and catch everyone up, as she is now 6, but I will do my best. Thanks again for reading our blog!  "The best and most beautiful things in the world cannot be seen, or even touched - they must be felt with the heart." Helen Keller