Our Life

My sweet baby girl recently turned eight months old. She is a beautiful, cuddly baby, and I adore her. But these past eight months have not been easy. When she was born via C-section and required some resuscitation, it set off alarm bells in my head that simply would not be quieted. As the hours, days, and weeks passed after her birth, my mommy spidey-sense was tingling. Something was not right. First, it was way in which her left eyelid was droopy. Then, it was the severe diaper rash that would not clear up. And when I say severe, I mean her skin was raw and bleeding, and no amount of prescription cream or rigid skin care routine worked to heal it. She was also very congested- rattly breathing with copious secretions that she had a hard time clearing. And then there was the feeding. Oh god, the feeding. Nursing her every one to two hours for months. She stubbornly refused the bottle, which meant that I was the only one who was able to feed her. I was beyond exhausted, and frustrated at constantly being told she was fine. I knew she was not fine, and that something was not right.

At our two month check up, I was no longer alone in the feeling that something was wrong. Our family doctor noticed that her head was small, and when she measured it and plotted it on the growth chart, it was clear that there was a problem. Her head was in the <0.01 percentile for size, meaning that less than 1 in ten thousand babies would have the same head size at her age. And thus began months of tests and worries. Weeks of phone calls, trying to get her moved up on waiting lists to be seen. Desperate for answers, and yet scared of what those answers might be. One of the worst things about the whole experience was the way in which I was often treated as an over-protective, hyper-worrying mom. And when the dust settled, we had a diagnosis: our baby girl is missing part of a chromosome, which has caused some abnormalities to her brain. This puts her at high risk for developmental delay and seizures, and in fact, she is about four months delayed at this point. The frustrating part of this diagnosis is that no one has been able to predict what her future will hold- there are no other known cases of people with this particular chromosome deletion. So it’s an answer that has led to more questions: Will she always be four months behind her peers or will that gap start to widen? Will she be able to lead an independent, fulfilling life, or will she continually face struggles? What new health problems will appear as time goes on?

Our current struggle is with her ability to swallow. A recent test showed aspiration during breastfeeding, meaning she was inhaling the milk as she was feeding. This led to a hospital admission and insertion of a feeding tube so that she could be nourished safely. This has turned out to be a bit of a blessing- for one thing, I am not the only one able to feed her, so I am finally getting some rest. For another, we have noticed a huge change in her- she is happy, alert, and far more interactive these days, now that she is finally receiving the right nutrition. The feeding tube is a bit of a pain to deal with, but it is certainly worth all the headaches to finally see our baby thriving.

So this is where things stand now. Our older daughter has been an absolute angel throughout this entire experience. She was never jealous of her baby sister, and is so sweet and loving towards her every day. She is understanding of her sister’s complex needs, and easily rolls with the punches with a grace and maturity that belies her three and a half years of age.

I decided to start this blog so that I could have an outlet for everything that is going on in our life. Some days, I just want scream and cry with grief and frustration, and I thought that writing here might help me get through those days. I also want other parents who have gone through or are currently facing health problems in their children to know that they aren’t alone. I have felt very alone at times while dealing with all this, and often still do, so I’m hoping that reaching out in this forum may help with that, too.

I know that no one knows what the future holds for their children, and I know that, unfortunately, many parents have to face far worse problems with their children. I know that I am lucky to have two beautiful, sweet daughters, and I wouldn’t trade either of them for anything. Knowing all of that, though, doesn’t mean that I can’t grieve for the situation I find us in. Somehow, I have to find a balance between the grief and the gratitude- someday, somehow, I will find it.

-Julie Steel