Be Who You Are: LIfe with a "tubie"

At the age of 14 months most parents are wishing their child would stop feeding the dog, throwing the food on the floor or making a huge mess well we wish we could have Addison do just one of those things.

With the NG tube came the tape on the face. We got lots of stares from people

Due to Addison's brain injury she didn't have a suck and swallow when she was born. She had an NG tube in her nose until she was 23 days old and then she was drinking 5 ounces from a bottle every three hours of breast milk. From the very beginning Addison was not easy to feed. She liked the nuk nipple and it had to be upside down and pushed against the top of her mouth. By the end of her drinking from a bottle we had to be sitting in the bathroom with the water running or by a computer with a you tube video of running water. We ended up getting the NG Tube back in the middle of February which was then followed by a feeding pump which she was hooked to all of the day except a few hours.

This was when we were hospitalized and her friends came to visit her

Although she wouldn't drink from the bottle we did feed her solids when she turned six months. She didn't eat as much as one might expect of a child her age but we continued to try three times a day. In the month of May she underwent surgery to have a G Tube placed in her belly. This was so much nicer then having to worry about pulling the tube out of her nose. It wasn't a fun process to put it back in her nose when it got pulled out by a mistake.

No tube in her belly

Tube in her belly

In the month of July she had a swallow study done and we found out she was aspirating(going into her lungs) and this meant she could no longer take anything orally. This was a very sad day for us because it was the one thing that we did that other parents did. I could share in the talk about making baby food and all the new things I could try and in a flash it was taken away. We are not giving up on this we are hoping for another swallow study in the New Year since the day she had hers done she had 9 seizures and that could have made a huge difference in results.

Her Auntie Debbie wrote this on the board in her hospital room

At the end of July she went to have her G Tube replaced with a MicKey button which was supposed to be a day surgery and make life very easy. Well as life would have it it didn't go as planned.

Button in the wrong spot

Ready for surgery

They brought her out of surgery, taught us how to use it and were going to send us home. Tyler and I didn't feel comfortable going home without trying to feed her and it was a good thing. We tried to feed her a small amount through the button and she was hysterical. Little did we know they put the button in the wrong spot and she had to go for a second surgery that day to get a G Tube put back in and be hospitalized for three days to watch for infection and to make sure she could tolerate her feeds again. Thank goodness for our Dietitian Sheri she worked with us to make sure we didn't waste time increasing her feeds and we were home by lunch on the third day. There are times that I don't know how we would make it if we didn't have her to keep us sane!

We had to wait another three months for surgery again to try for the button. This time we made sure the surgeon was doing the surgery and not the resident which he did and everything went smoothly. We were home by lunch and she was on full feeds of formula within 24 hours.

So now that you know the history of Addison being tub fed you ask well what is life like with at "Tubie"

What we do in the run of a day

Addison has partially digested formula right now to try to help with reflux that has to be made every morning and mixed with water and salt.
Feed Addison between 7 and 8 am. For every feeding you need a flush with 20 mls of water, a syringe for feeding, a venting tube(to let air out of her belly), and a feeding tube that has been pre filled with water so air doesn't go into her belly.
Feed her and keep her very still for at least 20 minutes so she doesn't vomit(sometimes this helps sometimes it doesn't)
After feeding the tubes need to be cleaned with soapy water and rinsed and the guide lines after that are different depending on who you talk too which can be very frustrating.
Give her medications(through syringe so we have to crush two of them and mix with water) and this requires another tube pre-filled with water
After you keep her still after that she needs to be cleaned up for the day. We get a bowl of warm soapy water. Take a q-tip and clean around the button, dry the area and then put on one of her button beauties made by the wonderful Christie Beck whom I met through an online support group of families with children who suffered HIE at birth. These pads replace the gauze that you put around the button or g tube. Before we found the Button Beauties we would be replacing the gauze multiple times a day because it would fall out or get to puffy. These wonderful creation have made life with a tubie much easier and also fun! I love picking out her daily button beautie!
We feed her 4 times a day 3 ounces at a time and then at 930 she goes on the pump until 4 am. Tyler and I take turns in the middle of the night getting up to un hook the pump, flush her tube, put the bag in the fridge(we washed it for the first 6 months until we found out if you put it in fridge in a ziploc it could be washed in the morning). So we never sleep through the night even when Addison does.
At all times when someone is holding Addison we are hoping that they are not going to hold her the wrong way and make the button fall out. It could happen it is held in with a balloon which is filled with water that we have to check every week to make sure it isn't loosing water. We haven't got to this yet but every three months we have to take the button out and put a new one in they compare it to changing an earring I think it might be a tad different!

So the next time your child dumps their plate of supper on the floor, pick it all up, give it to them and tell them to do it again for Addi!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!