Proudly Supporting all Military Families with a Special Needs Dependent
In 2007, my daughter was a diagnosed with “failure to thrive”. Since her oral intake was so low, Addie needed a feeding tube to help promote weight gain and growth. I was terrified, devastated, and felt like a failure. I spent many hours trying to convince the doctors that my Addie didn’t need a feeding tube – I just needed to work harder and I could fix her. To prove this, I spent the next four months feeding my 17 month old baby every two hours, 24 hours a day. I would hold her while she screamed and frantically shook her head as I begged her to drink. I felt that if I was “mom-enough,” I could will my daughter to drink; but it wasn’t enough.
I desperately wanted her to get the nutrition and hydration that she needed, and so in November 2007 we made the difficult decision for Addie to have a percutaneous endoscopic gastrostomy (PEG). This procedure placed a tube into her stomach through the abdominal wall for feeding.
After surgery, it was very scary to see my helpless baby and I was terrified of hurting her, the site, and doing everything wrong. How was I going to learn about the tube, how to feed her, clean the site, work the machines, and become a nurse? I was still trying to come to terms with her disabilities and I was not READY for this.
Fortunately, the wonderful nursing staff saw through my fears and patiently showed me everything I needed to know. Addie was sent home days later with a portable feeding pump. A nurse met us when we arrived home and helped me get all the equipment set up.
Addie needed to be connected to the feeding pump 24 hours a day, in the beginning. The feeding at night was a disaster. The connector would dislodge from her, but it would continue to pump formula into the bed as scheduled. We “fed the bed” more than fed Addie. She would scream – not from pain, but she did not enjoy being bathed in smelly formula.
Things eventually got easier. I learned to really push the connectors together and make sure there were fewer milk baths. I learned how to prime, pump, and switch out bags with my eyes half closed. Within a few months, the doctor told us that we could switch from continuous feeds to a bolus feed using a large syringe. This made things so much simpler for us. No more pump alarm going off at 3am. No more formula-soaked sheets to wash every day. And the best part? Addie was gaining weight. She stopped crying so much. She began growing.
My worries and uncertainties began to be replaced with confidence and assurance. I got over my fears and queasiness with blood, bile, vomit, and other gross stuff. I became educated on what to look for – redness, swelling, leakage, and granulation. I learned about tube clogs, burping, and flushing. The g-tube (Mic-Key button) has to be replaced every 6 months, and I had to learn to do that, too. The first time, my doctor changed it, while I stared from the sideline, scared and sweating. But I learned. (Word of advice: if you do this too soon after a feed, you will see a geyser of formula come out of the belly hole) Today, it takes me longer just to set up the supplies than it does to actually change out the button.
We have had many bumps in the road since her surgery. It took Addie over a year to learn how to roll over onto her belly. Once while on vacation, she pulled the button completely out of her stomach, causing us a frightening ER visit. I have overfed her, causing projectile vomiting. I’ve spilled formula and medicine all over the place, forgetting to clamp the connector or close the extender. But, through trial and error, I’ve managed to learn. I feel good about feeding her now, knowing that she is growing and thriving. It’s been five and a half years now, and I can look back and know that it was the best decision we ever made to have a feeding tube for Addie. Today, she is a happy, healthy girl. I guess I was “mom-enough” all along.
Wendy Kruse is a military spouse, mother to two beautiful girls, and the CEO of the Military Special Needs Network. She became an advocate in 2006 when her youngest daughter was diagnosed with severe neurological and developmental delays. Having experienced the overwhelming feelings that confront parents after receiving a devastating diagnosis, Wendy knows how challenging it can be to navigate the world of special needs in the military and the myriad of decisions that we are faced with. Contact Wendy via email at: firstname.lastname@example.org.
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