Feeding Tube Awareness Week 2013

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Last February, we celebrated Feeding Tube Awareness Week with our post here

Here is a partial excerpt from the original post:

After Jack had surgery to repair his hypospadias on November 10, he had trouble breathing and was admitted to the PICU at Riley Children’s Hospital.  There wasn’t much improvement in the days following surgery and he then began showing some other symptoms with his belly. On Monday, November 14, Jack went back to surgery and they found he had a perforation is his duodenum.  The recovery from this surgery was very slow as Jack’s stomach was not working.  After weeks of TPN nutrition (through his veins), Jack had a G-J Tube placed. We were grateful for the tube to provide nutrition for Jack and also allow us to bring him home for his 1st birthday and Christmas.

Jack had his feeding tube for around 7 months. Jack progressed very quickly from continuous jejunal feedings to just needing additional feedings at night. Around March, he was able to take everything orally. After 3 moths of not using the tube and proving he could gain (some) weight, we were able to have the tube removed. You can read about that here and here!

Looking back on the last year, it has definitely been an adventure. While Jack progressed from the feeding tube, we have still had many struggles. When Jack went in for his surgery in November of 2011, he was getting all of his nutrition from a bottle. When we weaned him from the feeding tube, Jack went back to taking his formula from a bottle. We had attempted some solids before surgery and Jack wasn’t interested, so we didn’t push it.

We began seeing a feeding team at St. Elizabeth around March of 2012. They gave us some ideas on introducing solids and helped with his caloric needs. We saw the feeding team monthly through the spring. At one point, we began cutting back on his formula to make him more hungry. This didn’t work and he lost weight. While we did make some progress during this time, it felt like we weren’t heading in the right direction.

In September of 2012, we visited the feeding team at Riley. We came home with TONS of new information, recipes and rules. In September, Jack was getting most of his calories from a bottle and swallowed very little food. We learned he had very weak oral motor skills and couldn’t chew well enough to swallow most foods.

Since September, we have been very faithful to his feeding plan, increased his occupational therapy to once a week to help with feeding and put in a LOT of hard work. When we saw the feeding team at Riley in January, they were VERY pleased with his progress. We had instructions to stick with the plan and we also started a new drug, cyproheptadine, which is an appetite stimulant.

Since Jack’s January 3rd appointment, we are pretty much bottle free! He is drinking all of his high calorie milk from a cup with a straw AND he has gained over 1 whole pound. Jack tells me he is hungry, is willing to try most foods and we couldn’t be more proud! We still have work to do on his amounts of foods and being consistent, but WOW! The appetite stimulant was certainly the push we needed. 

So, while Jack no longer has a feeding tube, we still want to do our part to share awareness for tube feeding. I believe Tube Feeding Awareness Week also brings light to feeding difficulties in general. Eating is something most of us take for granted. Of all of Jack’s complications from prematurity, this has most certainly been the most stressful.

Happy Feeding Tube Awareness Week and Keep up the good work, Jack!

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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!

We’re still here!

I hoped to post a weekend in review post like Kendra and Misha, but our weekend was not so fun or exciting. The stomach flu made it’s rounds through the Peña home. I starting getting sick late Thursday night. Jack started on Friday, Kendrick on Sunday and Henry is in bed now not feeling so well. So, if I did post any pictures it might be of puke buckets, loads of laundry and Lysol. Unfortunately, I did not have time to snap any of those pics and you’re probably glad! Luckily, the bug didn’t last too long although it was a little different for each of us. I’ll spare you all the details, but things are looking up. We are just hoping Henry feels better in the morning!

I did want to give an update on Jack. Things were going great before this bug. We were running his feeding pump for around 12 hours each night and he was taking bottles fairly well during the day. He also started back at daycare last week and that was another adjustment. However, with the stomach bug we stopped bottles for a bit and were running Pedialyte through his feeding tube.  It has been a slow process getting him back to tolerating his normal rate on the feeding pump, but we are pretty much there tonight. He also finally took a whole bottle this evening. Hopefully we will continue to progress this week. Once Jack is tolerating bottles well through the day again, we will be able to increase the amount of formula in each  bottle and decrease his time on the pump. I feel very inpatient sometimes and wish we could move more quickly. But, I have to remind myself it’s only been a little over a month since the tube was placed. We have made excellent progress to this point. I stay in close contact with Dr. Engum’s nurse and they also agree things are going very well. Jack will go back to see Dr. Engum in February and at that point we will switch his G-J tube to just a G-tube. Even when he is tolerating bottles and off the pump, the g-tube will stay in a few months just to be safe. Adding to all the fun are some new teeth coming in. Jack has his bottom two teeth, and his top right tooth has popped through and now the top left is also coming in. I know this also leads to some of his feeding issues. Kendrick was such a happy baby, we never knew when he was teething. Jack is a different story for sure! This picture is not the best quality, but it does show off his new teeth!

That’s all for now! I’m still working on Jack’s month by month growth post. The weekend of sickness has set us back. Today also marked the start of a new semester. I am entering my final semester in my master’s program. During this semester I am completing my practicum at Purdue School of Nursing. This means I am teaching at both St E and Purdue which makes for a busy semester. Henry is also taking an online course this semester. So, maybe by May we will be able to accomplish the post!