New Trial: Little A in charge

After the last visit with the swallow therapist my mom and I decided that we would give Little A a few weeks of getting used to his new schedule before a new “trial” idea of just on demand feeding.  As in a previous post Little A was doing well with his new schedule of bottles every 4 hours--giving him some more time to eat a meal, play and longer naps. With traveling down to Little A's other grandparents house for passover, his schedule was off and Little A decided he was going to make the rules.  He let us know when he wanted to drink his bottle and when he wanted to nap. I’ll admit it made me a bit anxious to relinquish all of the control to Little A...but that anxiety eased with every ounce he drank. By the end of the day I was just one excited mama because he drank 27 oz out of a total of 30oz! For the rest of the week, Little A only had 3 or 4 ounces go through his tube during his morning bottle time.  The rest of the day he drank 26 or 27 ounces total by bottle. He took a morning nap of about 2 hours and in the afternoon sometimes he took a 30 minute catnap followed by a 1.5 hour nap later on. We kind of still set a limit on when we wanted each bottle done, just so that we did not get overwhelmed at the end of the day. For example, his “11 o’ clock” bottle had to be done before his 1 o’clock nap. That being said, we didn’t expect Little A to sit down and drink the 7.5 ounces in the bottle before he was allowed to do anything else.  We tried to get him to drink 2-3 ounces before he could go play with his toys for a little while. Sometimes Little A even wanted to eat some purees and puffs before he drank. In just seven days he really proved that he can tell us when he is hungry and when he is tired. There are times of the day that were a little bit of struggle to get him to finish the bottle when all he wanted to do was play with his toys. We are finding ways to get him to calm down and finish first. One way is to go to a dark extra room with less distractions and another if we put his wearable blanket on he thinks he is getting ready for a nap.  These two strategies have been working so far. Also when we are out and about and Little A is bored in the car seat or stroller he does some great bottle drinking! The best part of this one week trial….on the 8th day we decided to give Little A the chance to try not using his tube at all and he did great!! He drank 31 ounces all out of his bottle for the first time ever! There are no words to describe this feeling...and how my dream and goal to have him off of his feeding tube by his first birthday is actually real! It was the greatest feeling in the world to not fight with Little A to sit or stand close to the feeding pump pole.It was the greatest feeling in the world to not think about that tube at all today. It was the greatest feeling in the world for Little A to just eat, drink, nap, and play like every other kid his age! It was the greatest feeling in the world to not worry about his outfit being accessible to his tube! [People take for granted being able to just put their kid in a bodysuit onesie and some pants.  After 11.5 months, I am so used to making sure Little A’s shirts/clothing have snaps or buttons down the front or cutting a hole and making a patch in a body suit...all for easy access to his tube. For the first week in about 11 months I walked into a store and didn’t have to make sure the outfit would work for Little A. Although I realized at this point my brain is so trained in that, that I do it when looking for gifts for other babies too. I put a sleep and play back on the rack because it is a zipper not snaps only to remember not everyone has that problem. The other day in Carters I almost screamed with excitement at my mom because Little A needed a pack of short sleeved bodysuits to wear with some pants he has…”He can wear the same clothes as everyone else!” ] As I have happy tears rolling down my cheeks, it is really hard to put into words how I truly feel. I am so thankful for my mom who helped every step of the way of this drinking and eating journey. Together we have used our common sense, asked some questions, and figured out the next steps.  We would rejoice together when Little A reached the goal we set for him and discuss what to do next and if we thought he was ready. She was the first to say after 7 days of only one tube feeding that Little A is ready to show us what we can do without that tube. When I was feeling a little bit anxious about the amount left in the bottle at the end of the day (and Little A fighting because he was tired), she was the first to say there is no turning back now. She is right...no going back! If he can do it once he can do it everyday...he just might need some encouragement or time but he will do it! I am starting to feel relieved and giddy that the end of this feeding tube is really in sight. I also feel if this little boy can overcome this, he will be able to do anything he puts his mind to in life! He is only going to be a year old, but he has accomplished so much already! He is one strong little guy and there is no stopping him. After his 1 year doctor’s appointment, when we get to tell our favorite Pediatrician how amazing Little A has been doing since we have last seen her, we will reach out to the swallow therapist again to tell her as well and see what the next step is.  We are positive that by the summer, everyone involved will agree that Little A’s tube can be taken out and the physical healing will begin. Until then, we will keep on smiling and celebrating each day that Little A continues to drink all his bottles and not use his tube at all! If you are someone who has a child on a feeding tube...don’t give up or become complacent. With therapy, practice, time and some faith they may be able to get off their tube one day too. Little A is where he is today because we put in the work and time to get him here.

Little A: "I did not use this pump today!"