As most of you know Sophia has a feeding tube and always has. After Sophia was born, the doctors realized that she had a blockage where her stomach and her intestines meet, called a duodenal atresia. She had to have surgery to repair the blockage so that she could eat, and so that her food would have a place to go after it got into her tummy. Sophia wasn't able to eat at all for the first few days after she was born, there was no where for her food to go. It wasn't until she was about 4 days old that she was ever given anything, and because Sophia had such a poor suck/swallow she was given a NG tube (a tube that is inserted down the nose into the stomach) to get nutrition. And so our feeding tube journey began........
After about 4 months of dealing with the NG tube, and having to replace it down her nose every week and having all the pesky tape glued to her cute little face, we decided it was time for a g-tube. Plus, we knew that oral feedings were a LONG time away for us, and we were ready to get something more convenient. A gastrostomy tube, or G-tube, is a tube inserted through the abdomen that delivers nutrition directly to the stomach. It's a way to make sure that kids with trouble eating get the fluid and calories they need to grow. A gastrostomy is a common procedure that takes only about 30-45 minutes. After spending 1-2 days in the hospital, kids who have had a gastrostomy can get back to their normal activities fairly quickly after the incision has healed.
Not all children with Down syndrome have feeding tubes. There are a lot of children who eat very well and never have any feeding problems or at least never require a tube to help them get nutrition. But there are children, who DO NOT have Down syndrome who do need a feeding tube. Common conditions that might require a child to need a G-tube include: congenital (present from birth) abnormalities of the mouth, esophagus, stomach, or intestines; sucking and swallowing disorders, which are often related to prematurity, brain injury, developmental delay, or certain neuromuscular condtitions; failure to thrive, which is a general diagnosis that refers to a child's inability to gain weight and grow appropriately; or extreme difficulty taking medications. Gastric tubes typically last for several months or longer before needing to be replaced and replacing a G-tube is easily done by a parent or health care provider without any surgical procedures. If and when the doctor decides that a child is able to take in enough nutrition by mouth, the G-tube or button, may be removed. Removal takes only minutes and is usually done in the office by the doctor or nurse. Once the button, or G-tube, is out a small hole will remain. It should be kept clean and covered with gauze until it closes on it's own. The scar that remains will be small.
It's a little strange to think that I'm not so sure I would know exactly what to do if you gave me a baby and bottle and expected me to feed that baby! :) It's been a long time since I fed a baby with a bottle or gave a baby cereal or baby food. As normal as feeding a baby with a bottle is for the majority of mothers, it's normal for me to feed a baby using a feeding tube. Of course it wasn't always so normal. It took some adjusting, which we do a lot when it comes to Sophia's eating. She has reflux, which used to be HORRIBLE, but isn't bad at all anymore (knock on wood!) And Sophia has always struggled with the amount of formula she was given. She needed more calories to grow, but her little tummy just couldn't handle the volume of formula that we would try to give her. Which led to more feedings during the day or LONG feedings in order to try and keep her food down. I remember at the beginning when we would have to feed Sophia for 2 1/2 hours and then let her "rest" for 1/2 hour and then start another 2 1/2 hour feed all over again! It's hard to get things accomplished when your baby is eating ALL THE TIME! But she worked through all of that, and now she eats 5 times a day; breakfast, lunch, "snack", dinner, and at bedtime and each feed lasts 20 minutes. Of course it's hard to get all of her needed calories in for the day through her G-tube AND work on oral feedings, because realistically she just isn't that hungry to want to eat, but it's a work in progress. I used to hate this whole feeding tube thing. It was hard for me to understand there for a while why Sophia couldn't just eat! But it's just not that easy. Low tone, which is common in children with Down syndrome, can make a lot of things very difficult for my little Sophia, that comes so darn easy for other kids! Of course I still get frustrated at times when it comes to her feeding struggles and having that darn button, but there are many times where I am so grateful for her feeding tube and I know that ultimately that precious little tube is what has made it possible for Sophia to be here today!
Sophia has shown such improvement with feeding. Most people can't see, but as her mother I know that she is moving in the right direction and I am very confident that we will get to that day where we will be sitting in the waiting room of our surgical doctor's office and anxtiously awaiting our name to be called to have that button taken out, once and for all!
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