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"It has taken me a very long time to put our story in words..."
Part of that is because I don't feel very inspiring much of the time, but I do know that what I write will resonate with someone and if it helps them to know that they are not alone then I've done a small part to contribute to this network of remarkable parents and children.
I was incredibly sick throughout my pregnancy with Bailey but never suspected that there was anything wrong with our baby. I was induced 10 days after my due date and I sometimes joke that Bailey would still be in my tummy if we'd left it up to her. She was born weighing 5lbs. 1oz. and needed oxygen right away. Within a day we were told she had a diaphragmatic eventration on her right side (i.e. her diaphragm wasn't working, it was elevated and crowding her lung), but they knew that wasn't enough to cause her to require as much oxygen as she needed. After running Bailey through the multitude of tests we were told a week later that her diagnosis was congenital CMV. We were completely unaware of what that meant and the doctor explained the full spectrum of what the long-term consequences could be for Bailey; including the fact that she was profoundly deaf. My first response was "I can't do this." My husband grabbed my hand in a way that meant he knew differently.
Bailey spent the first 3 months in the Neonatal Intensive Care Unit (NICU). She was not at all interested in eating due to massive reflux and despite regular respiratory treatments she had a very high oxygen requirement. They indicated that the CMV was centralized in her lungs and they considered her to have CMV pneumonia. We were sent home right before Christmas, but Bailey wasn't ready and within the week we were back in NICU; apparently this is a rare thing to be discharged and be readmitted into NICU but the severity of Bailey's condition warranted the decision. At 4 months of age Bailey had a G-tube placed along with a fundoplication to keep her from suffering from the reflux.
After those initial months and her eventual discharge from the hospital, Bailey progressed very slowly despite her heavy routine of Occupational Therapy, Physical Therapy and Communication/Speech Therapy.
Her oxygen requirement lessened and since about age 3 she only uses oxygen at night and when she is ill. We went through various doctors in Alaska, Washington and Idaho talking about the best options for Bailey. Her spine was slowly progressing into a severe case of scoliosis and secondarily her right hip eventually dislocated. As her scoliosis became worse she started to succumb to pneumonia. Her first, and worst, case of pneumonia was October 2005; Bailey was 10 years old at the time. The intensity of that bout and the rapidness of its severity was horribly frightening to my husband and me. Even with a high level of care and attention, Bailey wasn't recovering and my husband and I were told that Bailey wasn't going to make it through the night unless they dramatically increased the concentration of their efforts and it would be very hard on Bailey. We were told to make the choice of whether or not to put her through that level of treatment when it wasn't certain she'd even make it through. She was already so weak and bruised and scarred from prior weeks' treatments it was a horrifying concept to put her through more. We screamed at how unfair this was, hugged one another, prayed for an answer, and cried until the doctor's said, "We need to know now. Bailey is dying." We chose to save her, we told them to do everything they could to save her and they did.
That was a turning moment in our lives and it might sound like a really great thing to say that Bailey is still with us because of that decision. There are parents out there who couldn't imagine making a different decision and would have done the same thing. There are parents out there that wish every day that their child was still with them now. I know it will seem unfathomable to hear me say that I think we made the wrong decision and it pains me every day to think about that moment. I think that to the majority of parents out there this will be incredibly difficult to understand and they will disagree with our position. That is okay, because for those few that know exactly what I'm talking about who feel the same guilt I do, I know that my story will help them to know they are not alone.
Do I wish my daughter was dead? Absolutely not. Do I think we made the right decision that night? No, I think we made a selfish decision, I think we made that decision so that we could keep her for ourselves. I don't think we made that decision for Bailey. However, and I've analyzed this situation for thousands and thousands of hours, I do believe that if God had wanted her that badly it wouldn't have mattered what the doctors did to Bailey He would have taken her. So, while I take on the fact that it was our decision I also know that God would have given us the strength to make a different decision had that been the RIGHT decision. My point is that I feel so sadly responsible for the suffering she endured that night and since that night such that I wish I had had the strength to let her go. I didn't and I don't know that I'll ever have it or be faced with that decision again. I do know that I am not the only parent who feels like I have no idea what I'm doing in this world of parenting a special needs child. I'm ill-equipped when it comes to having to make such monumental decisions about our little girl. No one should ever have to face those moments.
Bailey made it home from the hospital and subsequently had several additional bouts with pneumonia, none near as severe as the first. Her scoliosis progressed to 110 degrees and at age 11 she went through a 10 hour surgery to have rods placed. Since that surgery, Bailey has been able to recover much quickly from her illnesses and hasn't used oxygen more than a few times due to a cold or flu. It is a great relief to us to have our happy and loving little girl be as able as she can be and not suffer the hardships she endured before the surgery.
Today, Bailey uses a wheelchair, has almost no communication (except to sign "swing" and "Mom"), has very poor circulation in her legs and feet, experiences grand mal seizures several times a year, takes all her nutrition through a g-tube, exhibits signs of pain - though we're not sure why, and has very limited use of her extremities.
Today, Bailey makes sure she gets all the Mom-and-Dad-lap-time as humanly possible every day. When we put her arms around our necks she uses every tiny muscle in her body to hold on as tight as she can. She loves swinging, swimming, skiing, flashy lights/fireworks, dog toys, horses/horse therapy, our Beagle Lilly and everyone who takes the time to see her for the precious little girl that she is inside of that obstacle of a body she lives in.
- Shared by her mother, Karen