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!"

Little A update: April 2019

Little A is 10 1/2 months old already! Where has the time gone? He has come so incredibly far in these months. Little A does his own variation of crawling because now that he realizes he can stand up and take steps he doesn't want to stay on his knees.  He cruises around the ottoman and takes steps with his baby walker. Little A makes sounds and giggles. He has found his hearing aids and thinks pulling them down is a fun game (I can tell you it's not fun, but the audiologist laughed and said good luck for another year - it's just what they do). Little A has finally gotten teeth! Currently we can see the two front bottom teeth, but we think the top two are on their way. He often holds his own bottles while drinking and lounging on the couch as only a couple of ounces of milk run through his tube.  Little A loves to eat yogurt, baby oatmeal and any of the Gerber purees as long as they have a sweet taste. He loves to eat bananas in a mesh teether-feeder, so we don’t have to worry about him swallowing too big of a bite (we hope to brave letting him try a whole banana piece soon). Little A has started eating Gerber puffs and has even surprised us by picking it up off the tray himself and bringing it to his mouth. We are just so happy and proud of this little boy!

On Thursday, March 28th, Little A, both grandmas and I went to two appointments in the city.  The first was with a nutritionist who was semi-helpful. We thought that a swallow therapist who set up the appointment with the nutritionist for us (after seeing her in January) had passed along information. We were wrong as when she came into the room she asked us what brought us to her.  Basically, we started from the beginning of Little A’s feeding story and ended with we really hope to get him off his tube this summer. So we left that appointment with just the idea to see how it goes with feeding him 7.5oz of milk every four hours and continue our three meals of solids a day in between.  Nothing that we couldn’t have figured out on our own or with the help of our local, amazing pediatrician. My mom (Grandma JoJo) and I decided we will give LIttle A a few weeks on this new schedule to help him better understand his own hunger cues before experimenting on our own. I can tell you though our future idea is to be brave and let go of this schedule.  We will make 30 oz of formula in our Dr. Brown’s pitcher and just make sure it is gone by the end of the day by reading Little A’s cues and just offering him the bottle. He has already shown in smaller opportunities--like when we are out shopping--that he can drink a whole bottle at his own leisure. We will also discuss more of the milk/solids ratio with the pediatrician in May at his 12 month appointment.  The second appointment of the day was with a swallow therapist. She was so happy with how he drank his bottle as well as how well he ate the puree mixed with baby cereal. We also showed her how Little A eats the Gerber puffs and she was pleased for the most part with how he moves it around his mouth so it melts down enough to swallow. She told us we could even try veggie sticks since they also melt. Little A does need to strengthen his chewing a bit, so of course she gave us a tool to help set us up for success.  It is called a chewy stick - they come in different resistances (we got yellow the easiest and red which is a level up). We dip it in his food or crunch the puffs and put the crumbs on it. Then we put it on the side of his mouth and he chews on it (alternating sides to help strengthen both). Little A likes to chew on it--teething probably helps with this aspect. We will make another appointment with the swallow therapist either in May or over the summer to hopefully determine that Little A is ready to have his feeding tube removed.  It literally brings happy tears to my eyes to think about how this little boy went from only getting a taste of milk off of a pacifier to drinking whole bottles (at times) within a year. He is already one amazing dude! I hope this shows other parents who are in similar situations to have hope, set a reasonable goal and practice with your child as much as you can (don’t only rely on the therapists or specialists, but do the homework). When you believe in your child, there is no limiting what they can accomplish!

Little A lounging on the couch while drinking his bottle and his tube is running

mesh teether-feeder (makers: munchkin) 

chewy sticks