Maddie gets an NG Tube

We have a very stubborn and strong willed three-year-old on our hands. It has been very difficult to help her gain the weight and eat/drink the needed daily calories. Let me give you a quick recap of our journey thus far. When Madison was born, she weighed 6lbs and 8oz. She lost a full pound within three days. She had a lot of gas pain, vomiting (which her Dr. associated to acid reflux) and was constantly being monitored for weight gain until age 1. We had changed bottles, formula, fed her with multiple burp breaks, and tried rice cereal to help her gain. Her Dr at the time kept dismissing our concerns and saying she was just being a small framed kid who had acid reflux. She would only drink 4-6 ounces a bottle feeding when she should have been drinking more than 8 in one sitting.

               

Fast forward to 1 ½ years of age. Her PCM retired and we were given a new one. This Dr

said she personally had all of the same issues with her daughter and diagnosed Madison as Failure to Thrive with Sensory Disorder. Madison started OT (Occupational Therapy) for feeding, was put on Pediasure 4 times a day and saw a Gastrointestinal Specialist. Madison’s GI required her to have a daily 1125 caloric intake. Her PCM agreed, but said we had to force Maddie to eat/drink those calories however we can. If that meant putting the Pediasure in a syringe and shoving it down her throat, then that was what we were supposed to do. This was absolutely horrible advice as it made her lose trust in us and elevated her Sensory Disorder and anxiety levels. Her PCM wanted her to eat whatever, she didn’t care what it was. She didn’t care if all Maddie was eating was junk food, as long as the calories were getting met. Upon being made to feel like a bad mother every time we went to a Dr’s appointment and her Dr threatening to put Maddie in a hospital for a while until she gained weight (not to mention the horrible advice and making matters worse), we decided it was time to change PCM’s. The new PCM was amazing and told us to just keep doing what we were doing as Madison was slowly gaining weight. She even made it onto the growth chart at 1%.

                We recently moved to Virginia from California for my husband’s work. This brought about a whole new set of Dr’s and specialists. Her current PCM doesn’t want to touch the issue much and refers to the GI for all of Maddie’s weight gain and eating issues. For a few months, we were doing fine with everything and the GI liked Maddie’s progress. He said we were to keep doing what was currently working and if things were to get worse or she started losing weight, then we would reevaluate. Christmas week came around and a horrible virus took a hold of our house. Sadly, Madison who has a weak immune system as it is, obtained this virus that makes kids vomit a lot and not keep much down. For two and a half weeks she vomited nightly with a few day time episodes. By the 27^th we were really concerned. She had visibly lost weight, couldn’t keep anything down and was showing signs of dehydration and acted lethargic. We quickly made the decision to take her to the ER that night. While there, I demanded multiple tests to be done that we had been waiting and dancing around with GI. They did CAT scans to rule out brain tumor (which could explain her behavior with some of vomiting on normal nights), urinalysis, blood work, nose and throat cultures, sonograms and x-rays. All tests came back normal thankfully. Although, we wished we had an answer as to why she never ate and vomited on some nights for no reason so we could fix said problems.

   

             We saw her GI Dr. the following week and he decided it was time. Time for the dreaded NG tube. The very thing we were trying to avoid. So, we took her into the hospital later that week to be admitted and have the NG tube placed. For those of you who don’t have experience with or know what an NG Tube is, it’s a tube that is placed directly into the stomach through the way of the nose. This enables you to place liquid foods, medications and drinks directly into the stomach bypassing the mouth. She had the tube placed and was miserable. They gave her a size 10 French. This size is basically an adult size. Imagine your iPhone charger cord placed in a child’s nose. That is exactly the diameter of the 10 French. The tube filled her nostril and she could feel it in her throat. She hated it. Honestly, I didn’t blame her. She did very well with the feeds (what they call it when they place food/drink in her tube during a certain amount of time) but had issues with the tube. We fought and complained to have them downsize the tube before we were released. We told the staff that we were not leaving until they found and placed a smaller tube for her. Which, low and behold, they miraculously found a smaller tube, placed it and discharged us two days after being admitted. Maddie was still miserable for a few days and had a sore throat.

           Dr’s don’t tell you all the things that associate itself with procedures or treatments such as this. They didn’t tell us that Madison would lose all trust in us, would develop a fear of blankets (they wrapped her in one to place the tube), would refuse baths, and would have issues with lying down or putting her head on her pillow. It has taken some time but she has learned to trust us again and now does all the things she used to. She has thankfully gained back all the weight she lost when sick and is doing amazing with the tube. She is still having issues when it comes to having the tape changed on her cheek but no longer wants to vomit while we are changing it. When they say kids are resilient, they aren’t kidding. This kid is pretty much back to her old self. We don’t know how long she will have the tube but hopefully it won’t be for long. We are praying she gains quite a bit of weight with it to reach that healthy weight goal and remove the Failure to Thrive title.

                Having the tube placed has helped in so many ways. We no longer have to count or worry

about daily caloric intake (whereas every day was so stressful to try to get her to eat and drink the calories to meet the daily goal). We can also focus on making meals fun again instead of it being a hostage negotiation. We implemented a few new rules, got rid of most of the junk foods she relied on, and are getting her to eat/try new foods. She is doing amazing with it. She now eats mac and cheese again, started eating apples, grapes, tried broccoli, found out she likes scrambled eggs, will eat bananas if made to, and eats/drinks fruit pouches daily. I know we will still have our ups and downs with this but I am grateful that we are making great strides.

                We have been trying to get her into OT out here but sadly all of the offices for OT are booked and have a long wait list. For now, we are continuing with the NG tube and new meal rules. I pray all this is behind us soon and we can have normal stress free meal times with a little girl who is a healthy weight. In place of OT I have decided to do my own OT sessions with Maddie. We play with food, talk about food, have her help cook/bake, and have her help grocery shop. I have also made a meal chart for each month. Each day of the week she has a specific meal for the whole month. Ex:  

Each Monday for January- PB&J Sandwiches, grapes, and pretzels. Each Tuesday- Mac and cheese, carrots with ranch, strawberries, and a cookie.

She gets the meals repeated weekly to try them and familiarize herself with them and then change the following month. She is already trying new foods and liking them! She has asked for her junk foods and has quickly realized that we are not giving her what she wants. What we place in front of her is what she will eat. Hostage negotiation handled and over. LolThank you to all of our family and friends for all of your support, prayers and concerns for our family. We would not be able to overcome all of this or manage its stresses without you. We have so many friends who have offered advice and tips on Madison’s situation that have proven to be exactly what we needed. We are forever grateful to all of you and love you even more for it. Thank you!