Miss Chloe Girl turned one on April 13th. Try as I might I have not been able to blog about this amazing day! I find myself watching her and wondering what is wrong with me. Aren't you ecstatic with the progress she has made? Aren't you happy you made it through the winter months of illness after illness and things are beginning to look up with her health? Of course, the answer to both of those questions would be YES! So, what is my problem??? Unfortuntately, the answer to that question is not so forthcoming!
The morning of her birthday dawned much like any other morning. By the time we awoke from our moderately good night's sleep it was already well past the time of feeling that first labor pain that would bring this tiny miracle into our lives. The whirlwind trip to the hospital was over. The two pushes that would signify her arrival already completed. In fact, by the time we arose from our beds she had already been in our life for an hour. A very long hour of waiting and waiting to get my first up close and personal look at my new baby girl. The news of her red-hair, well to be honest, hair at all still shocking me as all of my other beautiful babies were born missing any such surprise. Hearing the whispering of the doctors, she isn't breathing as well as we like, she's a bit blue, her apgar's are low...also all things I had never heard at the birth of my other children.
Finally the pediatrician arrives. She examines our tiny baby girl. We knew she would be small, but I could never have imagined her weighing in at only 5lbs 11ozs and a mere 19" long. The pediatrician after a few short minutes declares her to be fine. The nurse bundles her up in a warm blanket and brings her to me. She is cold to the touch and upon retrospect I knew that this precious little bundle was not just fine. My heart just wouldn't allow me to believe it. I remember looking at her face and feeling like what are they missing. Her soft-spot is so large, extending way into her forehead. Her eyes, do they look different? All questions I knew were lingering in the back of my mind. I am assured by the medical professionals surrounding me that all was well and she was just a tiny baby. Nothing unusual when the mother is of advanced maternal age!
As the day progresses she goes into respiratory arrest and is taken from our loving arms and placed in a cold ambulance surrounded by strangers. Off to a NICU forty miles away, she goes. I know at that moment her dad and I both wondered, will we see her again.
Sadly, I look back now and think to myself...Here is this precious little girl surrounded by dozens of highly trained professionals that work strictly with newborns in extreme situations and not one of them came to us and said we think your daughter has medical issues that have yet to be diagnosed. If I as her mommy could see it why couldn't they? We would bring her home a few days later with the wonderful, but misleading news, that she was fine. Just a newborn condition that occurs with fast labors and small newborns. For many weeks later I would question. Why doesn't she eat like my other babies and why when I look in her face do I see a disabled child? I would often question a good friend of mine who has a son with down syndrome. Even after her seizures were diagnosed and the brain abnormality found no one could give me the answers to these questions.
Thankfully, God placed in our lives an amazing pediatrician. She put us on the road of figuring out her seizures. She placed us in touch with an amazing neurologist who did the rest. Our pediatrician would often look at Chloe and check the placement of her ears, examine the creases in her palms and the bottoms of her feet. I know she was looking, studying, trying to figure out what she was missing. Finally, knowing I am a straight shooter, she says we need to consult a geneticist. After being told the waiting list was months long she decided to order the tests for herself. In the process of getting those results Chloe took a turn for the worst and ended up right under the noses of the geneticists we fought so long to see.
The weekend before Christmas we got her diagnosis. Now, fast forward to her birthday. Her very first birthday. A day, at some points this winter, I didn't think we would reach. This day should bring so much happiness, so much joy, so much a feeling of accomplishment. She picked this day, of all wonderful days, to roll over not only once but six times. So, why do I wake up finding myself angry. Not just a tiny bit angry, but a whole lot of Angry! Angry at myself for not pushing for a diagnosis sooner. Angry at the doctors for not taking the time to see my child for what she really was, a child in need of intervention. How much time was wasted because they refused to see what was there? What could have been done to prevent so many of her illnesses this past winter? Angry that there are people under my own roof that refuse to open their hearts to this amazing little girl and a strong desire to throw them out on their ears. Anger, Anger, Anger...!
So you see my friends. How could I blog this on my special little girl's birthday? I couldn't. As much as I wanted to, as much as I wanted to scream at God and everyone around me all I could do was smile. Smile and hold it altogether for the rest of the family that was busy baking cakes and decorating them. Thinking of ways we could try to get her to eat her cake when all of her nutrition comes from a tube. Honestly, I couldn't wait for the day to come to an end.
At last, the day did end. It was at this point, when I laid down next to my beautiful little "1" year old that my anger began to die. I am not sure what caused it other than when she rolled over towards me, as she does every night, and put her hand on my face. I will forever find it amazing how this child comforts me more than I comfort her. Even now as she rolls from one end of the house to the other I swear she stops right in front of me, looks up with her toothy grin and says don't you know Mommy...everything will be as it was meant to be, and then continues on her merry way!
Zoe in Hospital
1 day ago