Filled To The Brim

This blog has proved to be a great vehicle of speech. I do not have to tell stories over and over again. Many people in our circle of trust have signed up to have the blog emailed to them so they are getting our cleft/family news real time. I am thinking of signing up others in our circle (watch out brother bear!!!) so they get the emails too and I do not have to answer any questions. HA It has always been easier for me to write things down to explain them clearly and I think it is easier for others to read info in print rather than to hear them.

I had dinner for some friends tonight. I think I made it clear in past posts that I am not a domestic diva. It took me 3 hours to prepare for a dinner for 4. One friend is a chef so I am sure you understand my pain staking preparation. There was one smoke alarm alert and one spill of boiling water....not bad considering! Dinner was quite yummy and Sloane had a blast playing. I have just settled down with a glass of wine to relax. Something I do not usually do, but I am throwing caution to the wind, living dangerously, and going crazy! Whoooo Hooooo!

I gave my mickey button tutorial tonight. One auntie asked how long do we have to put the new button in before the track will start to close. I took the conservative approach and said 4 hours....to which she said: well, you never go that far away so you will be close enough to re-insert it yourself. lol So much for a weekend getaway!

I made an appointment with the nutrition clinic at Children's Hospital today for next month. The thought behind it is that because MAYBE if Sloane continues to eat such a wide variety of solid food, she could MAYBE be taken down to 2 tube feeds of milk a day. She currently has 3 tube feeds of milk. This is all an assumption based on the information we received for our SLP. I am all for it if it is safe for Sloane. If you have never had a child with a feeding tube, you can not understand how hard it is to manage food intake. There is always a little voice in your head making you question whether or not you are feeding your child too much. 

It is a normal reaction to stop eating when you are full. If you are me and there is a plate of french fries in front you..there is no reaction to stop at all. Ha!! Anyhow, because Sloane's tube feed happens simultaneously as she oral feeds...the worry is that she will eat, fill her belly and not want any more food EXCEPT the tube feed usually runs after she has stopped eating so her full belly gets even more full. That is when the worry occurs.....we start to think that she will be overfed, get too full and then vomit. This has happened to me once. It is scary. It is like my baby is literally filled up to the brim and food starts pouring out her mouth. There were also been times when Sloane would scream during her feeds and we would immediately shut the feed off because we would think her belly was hurting from too much food. The fears have lessened as Sloane has grown, but they are always in the back of your head.

I know the worry of over feeding her is common for tube fed children because I have discussed it with other families. There really isnt anyone in charge of managing how much a child on a tube eats other than the parent. There is a formula to how much and how fast the belly can hold liquids via tube in relationship to the age/weight/size of the child, but once a child starts eating by mouth while the tube is running it gets tricky. For us, it has now gotten even tricker because once Sloane has eaten by mouth and while the tube in running, she will request JU. And i think, can this all fit in her belly??? It can be a game of trail and error. It can be very hard to navigate through it all. It isn't a thing that you testing different formulas with, it is your child.