Hot Topic

Sloane and I saw a neighborhood friend today. She hadn't seen Sloane since before the holidays, so of course she was shocked at how big she had gotten. We were chatting about life and SJ showed her all her new tricks. And then the cleft came up! Like it always does. With many convos about Sloane's progress, the cleft isnt the issue for people, it is the feeding tube. My neighbor said, I heard she is drinking, why does she still have "that thing"?  


I don't think the cleft scares the general public because they can't visually see it and many people do not understand what a laryngeal cleft is. During my dissertation on the cleft (I am very passionate about it), the thickness vs. thinness of liquid always stumps people. I try to simply say that thick foods slide past the cleft and thin liquids slide thru it...causing aspiration into the lungs. And then there is usually a comment such as: but didnt you have the cleft closed? And I take the simple road, rather than getting even more medical about the neuro-muscular discoordination we are left with and just say: yes, but it will take time for Sloane to learn how to swallow liquids. I'm sure the person thinks then in terms of months not years so the odds of us having this same convo again are GOOD! 


Back to the neighbor, "that thing" is the feeding tube.  It is a hot topic for people. The cleft is usually replied to as "her little problem" but the feeding tube has taken on a life of its own. It freaks people out. I understand. It used to freak me out. I am not freaked it anymore, but I am protective of it. For over a year, I dragged an IV tube around my house with a feeding tube hanging off it, before I figure out how to rig the pump to our rolling highchair.  The sight of the IV pole freaked people out even more than the feeding pump I think. The IV pole = sickness = sadness. The look on the UPS man's face or the postal worker when they came to the the door was sadness. And one day, I figured it out. The pump sits on the bottom of the highchair and the feed bag hangs off the back of the seat. VIOLA!!!  I felt completely liberated when I rolled the IV tube into the basement and completely stupid that I hadn't done it before. 


"That Thing" has become completely normal to us and our circle of trust. A friend of mine and I had a convo about how uncomfy it can make people the other day. We decided that if this situation happened to someone else we knew, we would feel terrible for that child and their parents because of the tube. Feeding tubes in babies haven't become "the new black". They still are a bit behind the trend.  Sloane and I have a nightly ritual when she lifts her shirt and I kiss her mickey button telling her how much I love her button. I do not want her to ever be embarrassed of it or afraid of it. She has started to check her baby dolls for their buttons. I am sure if her mickey button is staying for a while, we will have some chats about why her cuzzy doesn't have one since she and her cuzzy  are almost the same age. 


There was a contest a while back looking for the cutest baby with the mickey button. I am pretty sure if I had entered Sloane she would have had a good chance of winning!! She rocks her button. It sits on top of the most beautiful Buddha belly ever!! It also helps that our surgeon was AMAZING so SJ's button has a certain flair. HA One auntie wants to be-dazzle it!! I do wish they came in different colors. 


The feeding tube is taboo in a certain way for people. The general public would be very happy is Sloane didnt have the tube anymore. Our circle of trust understands that the feeding tube stays until Sloane can drink all her liquids in their natural form by mouth. 


Sloane, too, at times, has had it with the feeding tube. She won't let me or my hubby near it to plug her in. She cries and pushes us away. We know it doesn't hurt her, so we assume she doesn't want to be bothered, forced to sit still for 40 minutes, or is asserting herself. As time goes on, we can already see that the mickey button and feeding tube will become a hot topic in our home!!


Sloane learned to make "pucker up" kisses today. Her little noise is yummy. She was kissing her baby dolls up and shhhhing them to be quiet. HaHaHa As I am finishing this post, I am thinking that maybe momma needs a fake mickey button to look just like Sloane so she can kiss mine!!