Thursday, August 5, 2010

Brutal truth

Our dear Noah was born November 24, 2010 at 8 pounds, 13 ounces. He seemed very healthy. He was easy-going, loving and unusually agreeable. But his mommy knew something wasn't right. She was told to "relax", that new moms were nervous and that he would feed in time. I had buckets of breastmilk and a child who seemed totally underinterested in eating. He only ever ate enough to eliminate the edge of his hunger.

We lived in worry that Noah would not eat enough to stay hydrated and it was obvious that he was not eating enough to grow. I remember the day that our doctor at Children's first talked about “supplemental feedings”. The idea was so foreign and unnatural. To be perfectly honest, I don’t think that I really comprehended what she was talking about and how much it would eventually consume every waking and sleeping moment of our lives.

So, 2.5 weeks old, my son was tube feed via NG Tube and evenually a G-tube. He vomited large portions of his food, day and night. People told me he would be fine, he looked so good, he was a fine weight. I heard endless stories about other kids who were small. I smiled politely because I had such severe depression I didn't know how to even respond. Soon enough, I just starting asking if these other children were feed via a tube, and since they weren't, the comments slowed.

The Drs. said Noah would get the energy he needed through tube feeding to drink better. I worried about his oral skills from day one but was told there was no reason to expect Noah to have any kind of aversion. Then, it started happening. It was a slow process. For a while, he would take a bottle. Then he stopped. He tried purees. Then he stopped. Now, he won't eat or drink anything. He is determined, figuring out every possible way to avoid eating.

He had an extreme treatment for reflux via surgery. The first week went great. Then he started retching. And hasn't stopped.

I hunger for the day we will no longer function in survival mode with stress, lack of sleep, and worry about Noah's medical needs and his relationship with food. Everyone keeps telling me he looks great....he does...I get it....but that isn't always enough to get through the day.

We are learning how to deal with the day-to-day. But honestly, right now, I'm just pretty scared of the journey to come. I desperately want to help Noah but no one seems to know how to do that, least of all me. I lean more and more on my faith in God and the understanding that He is great healer. I sit and stare at my boy who is full of life and fun. I get recharged.

In some ways, we are eternally grateful for the medical technology to help Noah thrive on a feeding tube, and in other ways it was the beginning of many heart-breaking complications. Our normal lives have revolved around the clock feedings. It has been a constant balance of how to maximize the calories we can get into Noah. We've had several hospital stays, and a myriad doctor consultations with every pediatric sub-specialty. He is strong, determined, and amazing.

We have fought for Noah and he is finally on the normal growth chart at the 2nd percentile for weight. This milestone might be the biggest accomplishment in his life and the lives of both of his parents. And, it brings us to our next challenge over the years to come: how to wean a determined, bright, 100% tube dependent baby. For now and probably for a while to come, I have to leave the idea of weaning on the backburner.

Despite the many moments of darkness, the endless frustrations of tube feeding, and the virtually non-existent sleep, we recognize that we would do it all a million times over for Noah. He is the delight of our world.

1 comment:

  1. I pray that you will be give the wisdom daily that you need to help Noah be a "normal" boy. I hope that someday you will be able to resume your normal lives and not have to worry about Noah not getting enough calories. You are a very brave and wonderful woman who I am blessed to know.