March for Babies

Sunday, November 17, 2013

Live, Learn, Teach, Prevent

On this day when. we recognize premature birth around the world I cannot help to count our blessings. 

We started out in a panic, I thought we would lose the baby, Tim thought he was losing us both. We made it through, not at all unscathed. 

Then came the phone call wherein I had to tell my husband that he needed to come down to the hospital because our two-year-old had cancer and they had checked us into a room straight from the ultrasound when they found the grapefruit sized tumor in her liver. This, it turned out, was most likely caused by the nutritional supplements given in the NICU. We wondered which side of Karma we were on. Double wammy bad stuff but we again made it through. 

There are other lingering preemie-related issues we are still dealing with. Spastic Diplegia, a form of Cerebral Palsy which requires Amanda to sleep in night splints that stretch her muscles. These are uncomfortable and leave red mark on her skin. They haven't improved her range of motion but we haven't lost any either which is good enough at this point. She has also undergone extensive testing, both psychological and neurological to determine she is living with ADHD-C (combined inattentive and hyperactive) and struggles with Executive Functions (organizing thoughts, prioritizing steps to complete tasks, etc.) she also suffers from sensory issues which interfere with dressing, sitting still, etc. That being said, she is SO smart and a good student. 

I am sure we are not yet finished discovering ways in which a premature birth will effect our daughter's life. Life will not be easy for her. Luckily, we know she is a fighter and resilient and somehow, continues to wind up with the best case scenario in bad situations. 

Not everyone is so lucky. 

Today is not about how bad we've had it (pretty bad, odds were against her coming home both from the NICU & from the cancer) but rather about pulling together to make it through the rough times and hopefully prevent these things from happening in the future. Within our pnuclear family this means Amanda will be an only child. This was not an easy decision or one made lightly. It meant changing my whole world view and long-term plans. On a global scale it means getting the word out about premature birth, signs & symptoms of preterm labor, maternal and fetal healthcare leading to PREVENTION. 

I was lucky enough tonight to kiss my seven-year-old at bedtime and tell her I love her all the time, even when he is angry at me (which she was at the time) and I am so grateful I was able to do that. I feel badly she will struggle in this life because she didn't cause any of this. None of it was her fault. We are finding in medical records that it wasn't my fault either. I had good insurance and good prenatal care, more than most considering the fertility treatments, but when I went into premature labor I did not recognize the warning signs. If I had, maybe we would have gotten to the hospital sooner, maybe they could have stopped my labor, or at least given her some steroids to develop her lungs before she was born. Can you say Maternal Guilt? (In my defense, the hospital didn't recognize it as labor either until my water broke.)

So, I leave you with this, the signs of preterm labor. Study them. Share them with anyone of childbearing age. Learn and teach so as to prevent. 


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