Between Jason and I's sisters, my girls have many Aunts to choose from for "Favorite Aunt." When we came home from the hospital this time, we came home with a GJ button rather than a G button. One feeds your belly. One feeds your intestines. One big difference is that you have to be on continuous feeds with a GJ button. That means there is always a tube connected to Bella's belly. I thought about this and came up with three problems that I needed to solve.
3. Years of no food
In reverse order
3. Bummer! Seriously - I guess because I'm thinking about it, I have noticed how much we associate with food. 2 friends of mine in the last 2 days have posted about food - popcorn and cupcakes (yum!), but not something my Bell will be able to eat. What are the implications of not eating for years - oral aversion, big time. My OT (who happens to specialize in oral work, how blessed are we?) knows we have a lot of work ahead of us for many years. When Bella does finally get to eat her first piece of birthday cake - it will be a moment to truly celebrate!
2. My hope is that Bella will one day be off the vent and have the trach removed. My secret hope is next summer. My 2nd best hope is the following summer. Whatever happens, happens and we'll deal. But IF she can get off the vent and not have a trach by the time she is three, we will be talking about school. School! School with a child that is continuously feed...hmm....guess what? They make back packs for little ones to carry around their feeding pumps and feeding bags. Problem solved.
1. Clothes - I went through her dresser and realized that at our current size (3-6 months - wahoo Bella!) most of her clothes consisted of a onesies with something - for example, a onesies and cute matching pants. Before the GJ, we could bolus feed her and then remove the tube. We could pretty much keep her clothed. I thought about this. We could just keep the onesies snapped and then unsnap it when we needed access to her ports for meds. (Silly me to worry about these things, I know. There are more important things in life - but she is my baby girl and I want her to wear clothes and look nice.) My sister happened to stop by and we were discussing this. She (the artsy one (read Shelly, could never have figured this out - ever)) said, no problem. And she came up with the perfect solution right there on the spot. She scooped up all of her onesies and fixed them right up. The result - my baby can wear clothes again while eating and getting her meds. Wahoo! Thank you Asia! Did I mention that she did this all the same week she was packing for an international move with a newborn, a toddler, and a husband out of the country? So, sorry to all of my sisters and sisters-in-law, but ASIA, is the favorite aunt of the week!!
What did she do? She ripped out the side seam and stitched it, then sewed in some velcro circles. So now, we can just lift that part when we need access. Yipee! She did leave me some extra velcro circles to do her 6-9 month onesies - like that is going to happen. That is why this poor kid has Grandmas and Aunts. Her Mama is not the domestic goddess - those gifts were passed out to my sisters. :)