Ellie's G-tube

The more I talk to people about Ellie the more I realize that a lot of our friends and family don't really understand trachs, g-tubes, and chromosomes and the role all of those things play in Ellie's life. I can tell that some people are uncomfortable being around Ellie because these things can be kind of intimidating when you don't understand them.  For the record I am not offended by any questions you might have and I never mind answering them. In an attempt to help others better understand and not be scared of Ellie I am trying to do a few informative posts that explain some of her extra accessories.

Ellie has a g-tube (short for gastrostomy tube) which is a tube that is inserted through the abdomen straight into the stomach. This tube allows us to deliver food and medication straight into Ellie's stomach.

This was necessary because from the time she was born, Ellie struggled with the coordination of swallowing and was continually aspirating (milk was going into her lungs when she swallowed). We thickened her milk, tried every kind of slow flow nipple we could find, and worked with an occupational therapist, but nothing helped. Her continual aspirating was injuring her lungs and was a huge reason why we weren't able to wean her off her oxygen. I fought so hard for the first 2 months of Ellie's life to avoid a feeding tube. Truthfully, I let her struggle for way too long.  Part of me was in denial of how bad the problem really was, the other part of me knew she needed a feeding tube but was so terrified of the long term effects on her being able to eat normally that I couldn't accept it. It wasn't until she was in the hospital with her first surgery that the medical staff saw her eating and helped me come to terms with how bad things really were. At first there was discussion of whether an NG tube (tube that goes in the nose, down the throat, and into the stomach), which could be used for several months, would be sufficient. But after a lot of thought and evaluation by the speech therapist and doctors they felt that realistically Ellie was going to need something long term and so a permanent g-tube was more appropriate. 
So on July 29th Ellie had surgery to place what is commonly referred to as a "button". It is a low profile device meaning it sits close to her tummy and we can disconnect the tubing from it and button it up. During this surgery the stomach is physically moved and stitched to the side of the abdomen wall and an opening is made for the tube to pass through. At he end of the tube is a small balloon that is filled with 4 ml of water. Once the water is injected in the balloon, the balloon sits in the stomach and prevents the tube from coming out.

 We are able to change out the g-tube at home routinely (every 4-6 months) as well as in an emergency if it comes out for any reason.

Ellie's Button

Honestly, her g-tube placement and Nissen Fundoplication surgery was the hardest for Ellie to recover from. Her g-tube site was extremely painful for more than a month after surgery. She would scream if we touched anywhere near it and forget about wearing pants or doing tummy time. It's easy to see why it was so painful when you look at what they did to her poor little stomach. Below is a diagram of a Nissen Fundoplication. They take the top part of the stomach and wrap it around the esophagus. As the stomach fills up this little pouch of stomach constricts the esophagus preventing anything from refluxing back up the esophagus.

We had known since Ellie was weeks old she had significant reflux. We later found out that reflux exacerbates laryngomalacia and that she was also aspirating the stomach contents that were refluxing up, making a Nissen necessary along with the g-tube. This was all done laproscopically so she just has 5 little scars across her belly including one in her belly button and her g-tube site (see red dots on picture of button above). The surgeon told us that Ellie had an extremely small stomach and it took almost the whole thing just to wrap it around her esophagus leaving just enough for him to insert the g-tube. So her little stomach was stretched and pulled and stitched and punctured. Like I said, I understand why it hurt so bad.
Now that it has healed, Ellie's g-tube is pretty low maintenance. We do g-tube care once a day where we clean around the tube with Q-tips, soap, and water. This keeps the skin clean and dry and prevents the skin from getting irritated (a big problem with Ellie's sensitive skin). The only other real maintenance is venting her g-tube. Not only does the Nissen prevent food from going up the esophagus, it also prevents air from leaving the stomach, aka burping. So when Ellie gets bubbles in her tummy she has no way to get rid of them, and if you've ever seen a baby who needs to be burped you know that it makes for one angry baby. So we hook her g-tube up to an open syringe (to catch any stomach contents that make their way out) and let the bubbles escape that way. We usually have to vent her 3-5 times a day.

Venting Ellie's g-tube

Because Ellie's stomach is so small she is not able to tolerate a bolus feed. A bolus feed is when you run in several ounces of formula over a short amount of time as if she were drinking a bottle. Instead she requires continuous feeds where we use a feeding pump to run in her formula at a slow rate throughout the day. We are slowly working on increasing the rate of her feeds, but so far she hasn't tolerated it very well. Anything above 40 ml/hr (30 ml = 1 ounce) and she becomes a hysterical mess. So for now we are happy to tote her little feeding backpack around the house with us. Since she is on continuous feeds we leave the extension tubing hooked into the button most of the time. We tape down the button and tubing so that it doesn't wiggle around because that can be uncomfortable and causes granulation tissue which is very painful.
The most difficult part of always having her hooked up to her feeds is finding functional clothes for her to wear. In the summer it was easiest to have her just wear onesies, but now that it has gotten cold we've had to get a little more creative. Pants are hard because they rub on and irritate her g-tube site, and the tubing gets bent and kinked when we try to twist and turn it out of the pants. My aunt and Grandma gave Ellie a few little sleepers and rompers that are specially made for kids that have g-tubes. They are ideal for nights because they have little pockets and snaps in all the right places and allow me to access her tube without having to wake her. Thanks Marilyn and Grandma! The other solutions we have found are outfits that snap all the way up the front so we can sneak the tube out between snaps.

Ellie at 4 months. This sleeper  is almost too short on her now because she's getting so long.

 And baby leg warmers to keep her legs warm with onesies.

It's a shame because I have so many cute clothes from when Brynn was a baby that Ellie will never wear because they are simply not functional.
I don't think I would go as far as to say I love her feeding tube, but I am glad she has it. When she entered the hospital at 2 months old she weighed less than 8 lbs. She wasn't even on the growth chart. At her 4 month check up she weighed 10 lbs 6 oz which put her in the 0.7%! That's a percentile we haven't seen! And there are definitely some benefits to her having a feeding tube. I don't have to plan my day around her feeding schedule. No late night feedings to endure. Ellie is a champion napper because her naps are never cut short when it's time for her to eat again. I don't have to deal with Miles climbing all over me while I'm trying to nurse a baby. The insurance company pays for her formula. I don't have to worry about her spitting out all of her medications. These are just some of the perks of a feeding tube.
There are also some potential problems that can result from Ellie being tube fed. The biggest of those is she is at risk for developing an oral aversion. Just her being g-tube dependent and not being able to eat anything orally from such a young age puts her at huge risk for an oral aversion, but add to that the fact that it is common for kids with 4p to have sensory processing disorders and many of them struggle with oral aversions and once again, I feel like the odds are stacked against Ellie. But then I have to remember it's Ellie we are talking about and she is constantly proving us wrong. Just in the last month we have been able to take huge steps in the right direction. After a repeat swallow evaluation our occupational therapist was given the green light to start giving Ellie some tastes of food. We started by dipping a finger in pureed bananas and letting her suck it off. This girl definitely has her Mama's love for food. One taste and she couldn't get enough of those bananas. After a couple weeks of her doing great with banana tasting she had a FEES (a different kind of swallow study) with the ENT and speech therapist. They were blown away by how well she was doing and cleared her to start practicing with nectar thick consistency bottles. So now we give her two bottles a day where we let her practice sucking and swallowing for 5-10 minutes. We don't focus on the volume she takes because we are not doing it for nutrition, we are just doing it for practice and for her to have a positive experience with food. The first few times we did it she hardly got anything out of the bottle because she wasn't able to create much suction and breathing while eating was tricky for her with her trach. But she is getting better and better every day and now I have to stop her at 2 ounces so she doesn't give herself a tummy ache.

 Next week we are going to start introducing her to different baby foods during her Occupational Therapy. Starting baby food at 6 month just like any other baby....way to go Ellie!

Thanks Brynn for playing photographer and snapping this picture of me and my babe.

That concludes what is officially the longest and most boring post I've ever written.