Blindsided

Women are a worrying bunch. It is in our chromosomal make up. We cannot avoid it, we do not choose it...it just becomes who we are. This becomes exponentially true when we find out that we are to become mothers. From the first moment that pee stick tosses out that extra line, we find ourselves fretting about what might be. Will I be an unfit mother? Will my husband never want to touch me again after my skin becomes as elastic as an old rubber band? Will my child hate me? But above all, we worry about whether or not the baby will be healthy. And so, we rely upon the reassuring words of our health care providers when they tell us, "Everything is fine."

What happens, though, when everything is not fine? What happens when we know in our hearts, that something is wrong, and the medical powers that be will not listen? What happens is that we become acquainted, for the first time, with the primal reaction known as a mother's instinct.

Having had two healthy babies, and having worried ad nauseum about their mental, physical, and emotional well-being, both in utero and out, I suppose there was a certain percentage of my being that wondered if I was going overboard with my obsessive-compulsive worry about baby #3. After all, we had just moved out of state for the first time. We were living in the country after having lived in major shopping-mecca suburbia for 30 years. I was sicker than I had ever been during a pregnancy and knew no one within a 200 mile radius on whom I could rely for companionship and understanding. (Other than my wonderful, supremely patient husband.) Maybe all of my stress about the baby was just a function of my misery in other aspects of my life.

But when my Elizabeth Josephine was born 5 weeks premature with a bowel obstruction, a life threatening birth defect, and whisked 60 miles away to another hospital, I knew that my instinct had been correct. What happened in the 10 weeks following her birth silences so many with whom I speak. She required emergency surgery the day after her birth to remove the obstruction. The surgeon told us at the close of that surgery that she would be eating within three to five days and home in a week. We did not see him again for six weeks. We waited and waited and waited for her to show the doctors, and us, that she was getting better, that she was ready to start eating and getting ready to come to us. It took six weeks, when we finally demanded that the chief surgeon, and not his band of Grey's Anatomy interns and residents, come to our baby's bedside and explain what was happening and why she was so much sicker.

He then told us that he made a "judgment call" and that he should have resected a piece of her bowel that was clearly not going to work on its own. He then told us she would need to withstand another surgery, and the waiting would begin all over again. Six weeks later. After she had become dehydrated. After nurses forgot to write orders for her replacement fluids. After she had become septic. After she needed multiple blood transfusions. After I had been pumping to keep my milk supply up to feed my baby who could not eat. He told us then.

This experience was the first time I realized that doctors do not know everything. And I realized that without advocating and fighting like a lioness for the life of my child, she would have died. There were doctors and nurses who would not speak to me by the time I left the hospital with my daughter because I had rocked their boats and bruised their fragile egos so badly. And then, on the night Elizabeth left that place, after a day of demanding that my baby come home and pleading my case that she would be better off with her family, one nurse came to me and quietly whispered, "You are my hero."

Elizabeth came home on a nasogastric feeding tube and had only gained three pounds while in the hospital. She sustained severe liver damage because of the length of time she spent on artificial nutrition. She is now, at six months of age, nearly 14 pounds, taking all of her meals by mouth (bottles and baby food) and is threatening each day to start crawling. Her liver has healed.

I sometimes wonder what would have happened had I not angered the medical staff and demanded better care for my daughter. I wonder and fear and question and I cry for the time we lost with her and the pain that we all endured. And I think, "What can I do that will make them pay?"

But instead of searching for revenge, I quietly thank God, hug and kiss my baby girl and her sisters and their father, and realize my blessings instead of the pain. And then I empty the dishwasher and make dinner. And I'm thankful for those tasks, too...because I'm not driving an hour to see my baby and I'm warming a bottle instead of filling a feeding bag.

My life is so good.