What Ifs

Since I have been outed by my husband, I decided to invite a few more friends in to ride our journey. And so the questions have begun about "blogging". I need to say that I have no clue how to blog. In the past 18 months, I have researched different situations in our family and have found blogs that have inspired me enough that I continued to follow them weekly. Sunday night was the night that I checked in with my friends in the blog world and found out the happenings in their life! It was/is my guilty pleasure usually accompanied by a Skinny Cow vanilla ice cream sandwich! I shared my interest in a certain blog with some friends, but they didn't seem to get drawn in the way I was. I was hooked!! Some people like American Idol; I like blogs!! I am sure in the therapeutic world that means something. Add that to list of my issues!! When I decided to blog, my hubby & an old friend (aka: the computer geek) helped to get the ball rolling. I hope this blog draws others in who may need inspiration from 1st time parents of a 19 month old born with an unexpected teeny tiny very rare birth defect or at the very least get a laugh from reading about a mom who is trying her best to stay afloat in her world!! lol


Today, I left Sloane with one of her aunties for 2 hours. Not a big deal to most moms of a 19 month old, but a big deal to me. Why? Because there was a feed involved. A tube feed that is!! I had no concerns, no worries and I didn't look back once. Quite a change from a year ago!! My hubby and I have a very small handful of people we trust to run a tube feed. We try VERY HARD to not be away for a tube feed because we truly do not relax until we know Sloane is vented and unplugged. Sometimes, if we don't want to deal with the concern, we simply omit the tube feed and give our babysitter a break from listening to our directions, rules, concerns, and play by plays. There is always a little voice in your head saying "what if ?" when a tube feed is happening and you are not running it. Sloane's mickey button has been pulled out on us on 4 different occasions. It is not a relaxed experience and we would never want that to happen on someone else's watch. We very quickly learned that replacing a mickey button to us is as normal as another parent brushing their child's teeth. You don't believe the doctors and nurses when they tell you "one day, you will do this without thinking" but it is true.  I cannot say the same about the NG tube or nasogastric tube. That tube goes down your child's nose into their belly. I tried many time to insert the NG tube but I could not do it. Although a g-tube is not ideal, it is a much better fit for our family than a NG tube. 


It has taken months for us to realize that when Sloane eats solid foods, she is NO different than other children so oral feeds aren't our concern when we leave her. We certainly do not leave thickened liquids, sippy cups or juicy fruits for others to feed Sloane. We have a no choking policy. How ridiculous is that? Other parents have a standard no candy or soda policy. We have a no turning blue policy. Choking is something we save for ourselves. It has happened to us in the past. We have called 911 and we now have a CPR cheat sheet with our basket of baby books in our kitchen. Normal right?


Anyhow, I left today without a worry. I knew the auntie had it covered and it felt good. She is one of Sloane's super aunties!! Leaving Sloane was something I had to work at, it did not come easy to me. The cleft, the aspirations, the reflux, the feeding tube, and the possible choking made it almost unnecessary. Now I can say, because of the incredible circle of trust around us, on an average week, I leave Sloane during waking hours about 6 to 8 hours. Somedays it is an easy task that I gladly welcome, other days I am consumed with "what ifs?"