February holds many honors. Valentine’s Day, Black History Month, among others. But it also holds a week that my family and I hold close to our hearts. G-Tube awareness week.
This year it was the 5th- 9th.
My cousin, who is about to turn 4, has a g-tube. She has had one since she was a few weeks old. My family has gotten pretty good with all the medical accessories she needs. Not to say that we enjoy all of it, but we’ve gotten good at it.
This is just my family’s story, I’m not trying to tell other families stories because I don’t know them.
Lochlyn was born May 27, 2014. She was tiny. Smaller than the Bitty Baby dolls. She had to wear the preemie diapers that wouldn’t even fit her properly. She was beautiful. The first person that got to see her was my younger sister. They were transferring her to NICU.
There was a medical mistake made, and within a few weeks Lochlyn was deemed failure to thrive, and a g-tube was recommended. Having a g tube surgery is a huge decision. Made no easier by all the opinions of a very southern and old-fashioned family. I know that my aunt and uncle went through every option before deciding.
Little miss got her tube and was able to come home. This is where things got to be a bit more complicated. Her parents were in the midst of moving, she was three months early. She was passed from family member to family member throughout the days of packing. She was a very calm baby. Which is good, because when my family gets together, antics happen.
She had therapy once a week. Still does, actually. Lochlyn also had an IV pole. At this point, she had to be hooked up to a feeding machine 24 hours a day. Everyone hated to IV pole. It was tall, and all the women in my family are very short. And the wheels didn’t work half the time. And the cord connecting her tube to the food bag wasn’t long enough to put her on the floor to play. Which meant that you either had to hold her, or leave her on the bed and pray she didn’t try to go to the far side.
Lochlyn, much like myself, attended her own baby shower. We left the pole at home. My cousins and I had the ingenious idea to duct tape her bag and equipment to a scooter board. This worked surprisingly well and looked incredibly tacky. But Lochlyn was able to crawl around freely for the first time in a while. And her tube was safety pinned down the back of her clothes so it didn’t pull.
My family can sew, which means that we are DIY masters. Because do you know how hard it is to find two-piece outfits for preemies? There aren’t any. So, Lochlyn wore our feeble attempts at DIY-ing flaps onto her clothes from where we cut circles to be able to get her tube through. These did not last long. Tatum, Loch’s mom, figured out that it would just make life easier to take in her two-piece outfits that weren’t her size. Please note that for church she wore my American Girl doll dresses. She looked the best in Felicity’s.
This was my families life for three years. We took her to local comic cons. She did dance. She fell in love with The Lion Guard.
And then Lochlyn got into a g-tube program in New Jersey. She didn’t get into the one in North Carolina because she knew Spanish, thank you, Dora. My aunt and Lochlyn moved to Patterson, New Jersey. Into a church where only the pastor’s wife spoke English. The girls of my family made a trip to visit them about halfway through their stay. Lochlyn was doing amazing. She woke me up by squeezing a pig in my face that would make the oink sound. We went to New York. Great place to visit, but I don’t think I could live there.
When they came back Lochlyn was 27 pounds. My tiny dog was still heavier than her. But the program worked.
The thing is. You have to feed her every three hours. And we’re trying to potty train her. My aunt Tatum’s life became puree, feed, potty, rinse and repeat. How she remained sane during this is beyond me.
Loch has gone to both the beach and Disney this past year. All with a g-tube. And my family all deeply love Aurora, because Lochlyn was hooked up when we met her and she made sure that Lochlyn bag with her food was seen clearly in the photos.
By telling this story I am not asking for pity. I am asking for awareness and acceptance for my cousin. I want waitresses to not give my family the third degree and then bring food out anyway when we don’t order for her. I want kids to stop pulling her tube out at school. Stomach acid stains like there is no tomorrow. And we only have so many backups. I want parents to stop telling my aunt that she “should just try to feed her more”. This is our life, we’ve been doing it for a while now.
All I ask is that you show support and treat people with g tubes with as much love and respect as you would anyone else.