Monday, August 15, 2011

Happy Birthday CHLOE!!!!

Despite a fever that she'd been running for 3 days, Chloe had a wonderful birthday! We celebrated her THIRD birthday in Maine, the place of her birth. For those of you who don't know her story, she was born while we were on vacation in southern Maine just around the 36th/37th weeks. Although we knew we were taking a chance by traveling that far along in the pregnancy, we decided to take the chance with ALL our supplies and medical records in hand. We figured if we were completely ready, she wouldn't come. HA! She showed us. We knew before she was born that she had Down syndrome and a "significant" heart defect that would require surgery 3-4 months after her birth. She was expected to be born healthy and continue being "healthy" until her heart required surgery months after she was born. When she arrived on 8/12/08 just about 4 hours after my water broke and an hour drive to the nearest hospital (Maine Medical Center) she came into the world just as they had expected, healthy and ready to go. She spent only a few hours in the NICU while they monitored and confirmed her heart defect and then roomed in with me. We were able to return to CT (a 5 hour drive postpartum - OUCH) in 2 days. All was going so well when at about 6 days she stopped eating and started sleeping A LOT. The next 6-12 months would be spent, at times, watching Chloe fight for her life. I'll never forget in the early days when she was failure to thrive (not able to gain weight) and really sick and our pediatrician (who we LOVE) stood over her shaking his head and said "I'm really worried about her". We were too.

Countless trips to the ER and hospital stays, including open heart surgery at only 9 weeks (we waited as long as we could!), g-tube placement and REMOVAL (wooo hooo), and eye surgery; numberous procedures and labwork, including many sleep studies; nursing care, g-tube feeds and CPAP all filled our first year. There were literally times we weren't sure she would make it. But now, 3 years after she was born, we look back with amazement. . . pure and astonishing amazement, that she has grown into the thriving, wonderful little girl that she is today. And weeks from now she will board a school bus and venture out on her own and into the world of preschool, away from mommy and daddy and Xander and Sadie. Out into the big world. . . and she is READY. Happy Birthday Sweet Chloe. Happy Birthday!

Wednesday, August 10, 2011

Vacation Sorrow, Swimming and PTSD, and a Fever

Well, we’ve been enjoying a wonderful vacation in Maine with our family, albeit a little sad without my step-father Sam, who is ALWAYS missed, but especially on our trips to Maine. After a few days of feeling overwhelmingly sad, I’m managing now to focus less on his absence and celebrate in the spirit of his life. Not to mention Chloe’s 2 days away from celebrating her 3rd birthday in her birth state (Maine, where she arrived while we were on vacation!!!!), so I’m turning this frown upside down and learning how to enjoy being here ;)

Sam, Big Sam, Grandpa or "Bah-Pah" in Maine 2 years ago.

My mom Penny with the love of her life...

So one of our favorite adventures while up here is of course swimming in the lake. Chloe’s become quite the little water baby. She loves playing on the beach and playing around in the water. With a life jacket on we were enjoying some water time on her belly, blowing bubbles, when she inhaled a little water into her nose. She started to choke and panic and while remaining perfectly calm I reminded her to BREATHE. . . BREATHE CHLOE. . . BREATH. It seemed like FOREVER waiting for her to take in that breath, although I still remained calm because I saw how little water she took in and couldn’t imagine why she wasn’t breathing. She finally snorted out some water from her nose and then inhaled a great big breath of air. We returned to playing in the water and eventually returned to the beach. Her tongue was slightly bluish-purple, but she otherwise looked fine. She did get a little limp in my arms as I carried her back to the beach, but as I undid her lifejacket she bounced back to her “normal” self. She was totally fine and doing great, but I couldn’t stop thinking about how much the choking looked like when she used to choke as an infant when she had a small opening to her airway and would choke frequently on mucus plugs. As time went by I became more and more anxious that maybe she inhaled some water and was going to suffer from dry drowning (an uncommon but fatal condition where someone who has inhaled water into their lungs actually drowns within the first 24 hours of being out of the water because the water in their lungs breaks down the chemicals in the lungs). Even though I KNEW she was acting fine, I was anticipating spending the next 24 hours WATCHING her like a hawk. So to settle my own anxieties I called the pediatrician. If you don’t know my pediatrician, he is AWESOME!!!! He talked me down off the edge and even validated my sense of anxiety associated with her earlier choking episodes. “Of course, it’s like PTSD!” which I had already expressed to my family before making the call. I knew my extreme anxiety was totally related to “Post – Traumatic Stress Disorder” from when she was an infant. Thank GOODNESS I have a pediatrician who validates my feelings and emotions as a parent while still reassuring me that my baby is going to be okay (and if not, he’s there to help). Although relaxed and feeling MUCH better later that night I dreamed she died and I can’t even begin to express the emotions I was experiencing. I honestly don’t know how others go on after the loss of a child, other than the fact that you have no choice. To my friends and family who have lost a child, my heart truly breaks and aches for you because it is absolutely an experience no parent should have to endure.

Finally, I round out this post with a fever. . . Chloe started running a fever after a rainy-day nap with mama today. Nothing too alarming – about 100.8 with a temporal thermometer. After an hour on Tylenol she was up to 102, but it slowly came down. She’s been lying around feeling poopy, but nothing too terrible. We’ll see what tomorrow brings, but let’s all hope she is healthy for her BIRTHDAY!!!!!

Oh, ONE MORE THING. . . 3 successful potty trips. :) wooo hoooo!!!! One time she even signed “potty”, I took her to the toilet and sat her there and she peed. Yeeeehhhhaaaaaa!!!!!!

Wait, one more “one more thing” – Stacey caught a beautiful bass today. The kids were all so excited! :) Congrats honey.

And by the way, for anyone who is wondering, we have people staying at our house watching it and our dog! ;)