Feeding Tube Awareness Week, Day 2

From their website:

 Topic: Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding.

Maryam had 4 different feeding tubes ranging from when she was only a few weeks old up until her Mic-Key button was removed when she was 4 years old.  Her first tube is called a NG tube.  The NJ tube or Nasal Gastric tube is a tube that is inserted up the nose, down through the throat and ends in the stomach.  This is placed without any anesthesia and can be done in the home or in the doctor's office.  When Maryam first came home from the NICU she had an NG. 
After one of Maryam's procedures in the NICU she had some trouble with motility, digestion and vomiting so the docs decided to place and NJ tube or Nasal Jejunum tube.  With this tube, the stomach is completely bypassed and the tube ends in the Jejunum.  This is so the body doesn't have to digest the food, its harder to vomit it back up and its easier to pass through the bowels.  Once Maryam was stable again she went back to an NG tube.  
Days before Maryam was discharged from the NICU we had a long talk with her doctors and some nurses about how we weren't ready to have a G-tube placed or have a Nissen/Fundoplication procedure done on her.  So, with that decision came a ton of training.  We had to learn how to place an NG tube in our little baby.  Maryam was nearly five months old, but still only 7 pounds 9 ounces when she was discharged from the NICU.  But I wasn't ready to "give up on her" yet, so we learned how to place the NG. Personally I wasn't ready for her to have a G-tube.  I was still praying that she'd learn to coordinate her suck/swallow/breath, that her lungs would get better and that her GERD would get better.  
When she came home it was a little overwhelming but we were super organized.  We had a binder that we kept track of everything in.  We kept track on spreadsheets of how much food she drank, how much went into the tube and how much she vomited up.  We had  a medicine spreadsheet.  We had a poop and pee spreadsheet.  We had an oxygen tank spreadsheet.  We had a DME ordering spreadsheet.  WE WERE ORGANIZED!  I had to take her, her feeding pump, her oxygen tank and her binder with me to the doctor every week for oxygen tests and weight checks.  She kept failing both.
After 2 months at home and barely a pound of weight gain and no lung improvement, we knew it was time.  The docs ordered another swallow study and upper GI and the decision was made, Maryam was getting a G-tube placed and a fundoplication.  Sigh.  The official reason for the G-tube placement was Failure to Thrive (FTT).  The official reason for the fundo was complications of Bronchopulmonary dysplasi (BPD) due to microaspirations from severe Gastroesophageal reflux disease (GERD). Maryam had surgery July 17, 2007 she was 7 month and 9 days old and weighed about 8.5 pounds.  She stayed in the hospital for 2 weeks and came home with a new feeding pump, feeding pump bags, gauze, tape, rope, syringes and new medications.  
Maryam took her last bottle on August 4, 2007.  Arguably one of the saddest days of my life.  Just typing that sentence made me tear up.  
Two weeks after Maryam's G-tube was placed we took her in to have the tube removed and the button put in.  The button was RAD.  It made it possible for us to put the tube on and off as needed.  When it was time to eat, we attached the tube, when she was finished and vented, we took it off.  It was GREAT.  The Mic-Key button is the brand she had.  As she got bigger, she got a bigger button.  The Mic-Key button and feeding tubes were the only brand we had.  They worked great for her.  I have no complaints. They kept my little punkin alive. 
On September 20, 2010 we took out her button!  Arguably one of the happiest days of my life.  
On March 30, 2011 Maryam's stoma was all closed up!  
Here is a post from the day of the surgery.  I love the before and after shots.  :)

Feeding Tube Awareness Week

According to their website:
The goal of Feeding Tube Awareness Week it to spread awareness and educate as many as possible through Facebook status posts, notes, twitter, blog posts, email...basically however, you want to spread the word. The topics below are a guide. They will be posted daily on the Facebook Page but also encourage you to use them in your posts to others.


Daily Topics
Topic: Why awareness is important to my family - What would be difference for me/my child if tube feeding was better understood?

I want to start my post by recognizing what a wonderful idea this is. Maryam hasn't been a "tubie" since September 2010 and I'm extremely grateful but when she was tube fed, I always felt isolated. I know I wasn't the only mother of a tube fed child, through the magic of the Internet, I have met quite a few moms of tube fed children. But it's the little things.
I'll never forget how sad I would feel when we would go out to dinner, order our food and then when the server would ask what we wanted for the little one we'd bust out a can of Pediasure and a tube and watch the expression on his/her face change. It wouldn't end there though. There was always the people who would stare at Maryam and her tummy with her tube sticking out of her belly as they'd walk by to go to the bathroom. Or my personal favorite, the people that would flat out ask, what's wrong with your baby? Ugh, I hated that.
Sadly, the people who are aware of feeding tubes are usually only aware of them because someone close to them has had one. Whether it is an older person holding on to life, a person who is allergic to most foods, babies born with their intestines on the outside of their abdomen, or people with CF who need extra substance to stay alive, odds are you know someone who, at sometime, had or has a feeding tube. Since you're reading my blog you know of Maryam. Maryam started out with an NG (Nasal Gastric) tube because she was on a ventilator for the first 9 weeks of her life. Then when she could drink from a bottle she didn't have the stamina to get enough sustenance. Her little lungs were too weak.
After 8 months of too much vomiting, her respiratory system failing and lack of weight gain we had to make the toughest decision of our lives. We had to choose to permanently altar our daughter's anatomy. She went in for surgery only days after we discovered she was aspirating on her own vomit. She spent 2 more weeks in the hospital. At only 8 months old she had 3 surgeries, 2 hospital stays totaling 154 days and now had a new anatomy.
A feeding tube kept my little baby alive for her first 2 years and 9+ months. And she had her tube in her tummy a whole year longer, just in case. You probably know someone else who has used a feeding tube too. It's important that others are aware they're not alone. There is no reason to feel isolated. Maryam still shows everyone her scars and asks me lots of questions. I've shown her pictures! She thinks it's neat! We all think it's pretty neat that technology kept our little miracle baby around to become the great kid she is now.