Today is June 30 and its 2am, and I am awake in bed on my iPad making a blog to document the journey my family is about to embark on. My name is Erica, my 2 yr 8 month old little girl Willow is scheduled to have a g-tube placed, as she has been diagnosed with failure to thrive, and is not gaining weight like she should. She has food allergies, and barely eats anything. She is in occupational therapy for feeding, but her therapist says it will be a very long process to get her to enjoy eating. Until then, we need to get her weight up to a healthy level. She weighs 23 lbs, and has only gained 2 lbs in the past 9 months.
Surgery is scheduled for tomorrow July 1st at 7:30am. I have joined several support groups on Facebook, talked with my friends and family, watched about 3546376 YouTube videos on what to expect, and honestly I am still scared to death. The thing that scares me most is the pain she will experience until it heals. I've heard it can be up to 2 weeks of pain, and that it's more painful than open heart surgery. There is no worse feeling in the world than seeing your child in pain and not being able to fix it. This is what terrifies me most, that feeling of helplessness I know I am going to be experiencing very soon.
There is SO much I still need to learn about the tube as well. I can say that I am beyond grateful for today's technology, as I never could have had the chance to prepare myself as much as I have with pictures, videos, articles, and connecting with people via the Internet. I'm still not sure how she will take her tube feelings, whether it will be bolus feeds (a large amount at once like a regular meal) or continuous feeds. I'll learn that when I meet with the nutritionist after the tube is placed. Willow, and Ellen (my 5 year old) still sleep in our bed, so I'm trying to figure out how we'll manage if she has to have continuous feeds during the night. Ellen and my husband may have to sleep on the couch for a while. Also during the recovery time, I'm guessing.
I really wish my parents lived closer to me, but they are 10 hours away. I know I'm going to need help. For now, I'll be praying for strength and courage to carry my baby girl (and my whole family) through this scary, scary time. I know in my heart it's what's best for her, but that doesn't make it any less frightening.
