Feeding Tube Awareness Week is something special to our family. It's an opportunity for us to share with perfect strangers, what we have learned about feeding tubes. I once walked in those shoes, I didn't know what feeding tubes purpose was, as I explain in last years post, I believed tubes were only for those gravely ill. The reality is that feeding tubes are used for so many more reasons that I even knew!
Tubey's can truly (well, pretty much) do everything a person without a feeding tube can do. If you put a challenge in front of Annabelle, I can say for absolute certain, that a silly tube in her tummy is the LAST thing that will hold her back from getting her where she wishes to run. I didn't know any of that, so many people said that the tube will not hold us back but I didn't believe them. Of course it will hold us back! Look at all this equipment and maintenance! Look at how ugly and painful the tube is! It's holding us back from EVERYTHING! Or so I thought.
18 months later. I feel like we've moved mountains from where we started when it comes to tube feeding. It is still not a comfortable part of our life, just less than two weeks ago, I asked a doctor when we can get rid of the horrible thing. He shook his head and said "We wont even entertain that conversation.." but we have adapted. Believe it or not, AK and I have taken nights out and left Annabelle with family and friends (never more than a few hours, but still). Annabelle can hook up her own tube feeding and owns it confidently. The stoma has healed and very seldom do we have complications with the tube/stoma site at all. It stays clean, dry and as far as we can tell, she's comfortable!
Tubey's can really do anything other kiddos can do. In fact, in many ways, it's super special to be a tubey!
We have the cutest stickers we get to wear ON OUR FACE! ..
We can take baths just like anyone else..
We have the coolest IV Pole to decorate for every holiday!..
We get to ride in awesome expensive strollers..
We get fun gadgets to play with, bonus(!) it beeps constantly and always brings mom and dad running in a panic!
Dress-up is super fun and tubey's have endless ways of accessorizing..
Easter Egg Hunts are exciting, because after we cash in all the candy from the eggs, mommy and daddy give us an extra special surprise in exchange..
We have numerous backpacks, that even have extra room to stash a spare baby doll.. or two..
Cute belts cover our tubey so i can run and play just like other kiddos! I don't have to worry about getting hurt.. AND, it can even go in the pool! ..
I get to eat and sleep at the same time, who else can do that, really? ..
We get sick just like other kids. But we vomit thru our tube instead of our mouth, so we never get choked or have that yucky taste in our mouth. Aren't we lucky?! ..
We don't miss a family vacation! Just bring our tubey along..
We visit the pumpkin patch..
We are ALWAYS at our friends side when they need us. As they are always with us when it's our time to hold another tubey's hand during a difficult time.. Tubey - Buddies - for - Life! ..
We go to baseball games..
We get totally excited when new products come out. Like this one, a tubey that GLOWS IN THE DARK! How awesome is that!! ..
We read books in our room..
We dress up with our friends ..
We visit the zoo and get to accessorize with matching tubey covers..
We have safe, fun, very special birthday cakes ..
We get to pose naked for pictures and people don't judge! ..
When times are tough, we always have a sense of humor and accessorize appropriate.
"When life gives you lemons. Accessorize" ..
Being a Tubey also has it's challenges. Not all are fun but the way to survive and enjoy the life of a tubey is to make the most of every difficult situation. Our family always finds the light, even when we feel like we are living in a dark cave all alone. Parenting a young tubey is difficult, especially when you cannot calm or explain to them why they are in pain....
Why we had to make a trip to the emergency room for yet another NG tube replacement (and the doctor wasn't nearly as gentle as mommy)..
Why her face is absolutely raw from the tape that is constantly across her sweet cheeks.. or why people stare every time we are in public..
Why mommy and daddy have to subject her to so much pain and put a hard tube in her nose that makes her bleed and hurts so badly.. why mommy and daddy hug and kiss her with tears in their own eyes after its finished..
Why mommy and daddy worry all night when she is sick but they do not know how to help her..
Why she was just in an operating room for over 4 hours and is in the most excruciating pain but no one will touch her and make it all better ..
Why her tubey continues to become infected and everything she touches and every time she moves, it hurts.. but again, mommy and daddy can't make the pain go away..
Why her sissy gets to come and go from the hospital but she's left all alone.. why her big sissy cries at night worried about her baby sister in the hospital in pain..
Why mommy has to hold her down and won't pick her up during CT scans
Why this is her life.
Feeding Tube Awareness Week for our family is the opportunity to share with you the realities of our life living with a tubey. Of the reality of a tubey's life, living in this world. Not all things are horrible - the medical device of a feeding tube is not a death sentence or depiction of 'gravely ill', it is a means of providing nourishment to those that are unable to nourish themselves. Some kids cannot see, they wear glasses. Some kids cannot hear, they have hearing aids. Some kids cannot talk, they use sign language. Annabelle cannot eat - she has a feeding tube. Specifically a Gastrostomy Tube, aka G-Tube that is surgically placed into her stomach. We first started with a Nasogastric Tube, aka NG-Tube. That was a longer tube that was inserted thru her nose, down her esophagus and fed her into her stomach.
Feeding tubes come in all shapes, sizes, forms and means of providing nutrition in whichever way the person needs. Those with feeding tubes, those living with recipients of feeding tubes are truly a species of strength all on their own. Every road is paved with it's own potholes of struggles and curves; our bumpy road is built around a feeding tube. It isn't always a rainy/stormy drive, most times it is truly sunshines and rainbows. Especially when you look at the sky and recognize just how much the tube is nourishing your loved one. We are so grateful for our Tubey-Annabelle. We hate the device and why it is here. But we are blessed beyond measure for what it provides to our little girl.
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