Bye Bye G-tube!

Jack’s G-Tube was removed this morning.  He will have to wear a dressing over the site for a few weeks. It should heal on it’s own within a few days. The surgeon said 8/10 times, the site heals on it’s own completely. If the site does not completely heal (meaning it continues to leak), he will have to have it surgically repaired. Let’s hope Jack is one of the 8/10 this time! I know those things usually don’t go in his favor, but maybe this time? He keeps rubbing his belly, I’m sure he’s wondering where the tube went!

He did well during the procedure and we were told not to let him eat for a few hours.  By the time we got home, he was hungry and asking to eat,  so I let him have some formula. Luckily I don’t see any leaking. Let’s hope this is a good sign!

Thanks for your thoughts today!




Growth Charts and G-Tubes

Jack had his 18 month well child visit last week. He weighed 17lbs 1.9oz and was 29 inches long. He is still not on the adjusted preemie curve, but he’s getting closer! I take that back… His head is on the chart! Thank goodness for big brains!

The month before his checkup, the feeding team decided to cut down on Jack’s formula intake in order to make him more hungry for table foods. This did not work well and he actually lost almost a pound. So, it’s back to formula for now. We knew he had his 18 month appointment coming up, so the goal of the feeding team was for him to weigh 17lbs 2oz. He was just made it, thank goodness! We have an infant scale at home. I try not to obsess, but I have been weighing him fairly often. He was back up to 17lbs 6.5 oz as of yesterday. Thursday, Jack has an appointment with his surgeon at Riley. We are hoping to have his G-Tube removed. His surgeon has two criteria for removal:

1. Jack must take everything by mouth for three months. Check. We have not used the tube since March.

2. Jack must be gaining weight well. Hmm…

I’m nervous for #2 and I’m not sure how Thursday will go.  I would love the get the tube out. It has been leaking lately and his poor skin has been irritated. I also would love to have him shirtless in this hot weather! However, what if he needs the tube down the road? Jack has the capability to take everything by mouth. He has made huge progress trying new foods. Some might wonder why not just use the tube to help him gain weight? When we use the tube, Jack is less hungry. He also gets very gaggy and sometimes vomits. Using the tube would also most likely hinder our progress with eating.

So, please keep us in your thoughts and prayers as we see the surgeon Thursday. This is definitely a tough decision for all of us.

In other Jack news, he is climbing and cruising, but still not walking. It’s tough seeing younger babies taking their first steps. I know Jack will walk someday, it’s just frustrating in the mean time. He is terrified to stand by himself and we all know how stubborn he is! He is talking up a storm. He will repeat about anything on a good day and is starting to put words together. Last night,  Leela, our dog, came in his room. He looked at her and pointed and said “Go Leela!” I guess he didn’t want her to play in his room!  Jack will start OT with First steps next week. He had his yearly evaluation a few weeks ago and we requested OT to help him with some sensory issues that are leading to him not wanting to stand and walk. Speaking of the evaluation, Jack did very well. He scored at or above his age in every category except gross motor skills. If it wasn’t for not walking, he would not even qualify for services! The therapist who came to evaluate him had not seen him since he was about 6 months old. They were amazed at how well he was doing. Keep up the good work buddy!

Now to leave you with a picture…. Henry attempted to take some pictures of the boys and their cousins this past weekend. Do you know how hard it is to get a decent picture of these two??

We hope you have a happy and safe 4th!