Our post today is a guest blog entry from Anne Moore. We’d like to thank her for guest blogging for us.
I am the proud mother of two adorable little boys ages four and seven. Both of my beautiful boys were born at exactly thirty-nine weeks and weighed nearly nine pounds. So what made our second child so different from our first?
His name is Joseph, but his brother mispronounced his name and said Jofas the day he was born. Joey had a rough start and although he is now a vibrant four year old kid, he still faces challenges.
For example, he tires more quickly than the average four year old. I believe this fatigue is directly related to a weakened immune system that is continually fighting inflammation caused by severe allergies. His known food allergies are dairy, soy, eggs, red 40 and nuts. Once I knew the truth about his many allergies, I dedicated every day to being the best “allergy mom” I could be. Unfortunately, his allergies were not known until he was eleven months old. Sure, I recognized some tummy discomfort and extremely rough itchy skin but I had no idea of the severity of his allergies at the time.
I was an experienced breastfeeding mom and was determined to give Joey the same benefit of mother’s milk. Due to my own allergies, I had already eliminated dairy from my diet. Therefore, I did not consider the possibility that other ingredients in my own diet might be contributing to Joey’s allergies. And, at the time I was primarily focused on his main eating problem.
You see, Joey was born with a floppy epiglottis. He latched on correctly and went through the motions of nursing, but he failed to thrive. Simply put, he was aspirating the liquid and not gaining weight. After many exhausting days and a swallow study, my two month old was put on an NG tube indefinitely. At that moment I decided to pump my milk. I managed to effectively pump for eleven months! The children’s hospital said they have only seen two mothers successfully pump exclusively.
The pumping routine was exhausting. My “tubie” needed to eat a set amount every three hours around the clock. Each three hour process included pumping, cleaning the tubes and pumps, feeding Joey and then putting him back to sleep. This allowed about one hour consecutive sleep before the process repeated.
I quickly figured out that holding my baby and a tube full of milk up in the air was just not working for us. I still find it difficult to understand why mothers are advised to feed their baby in this manner.
We decided to create a mother’s third arm. The resulting product, The Jofas Clamp, is portable and easy to use. It attaches to any surface via a clamp and adjusts by simply moving it up and down. We have dedicated this device to Joey and hope you visit http://www.jofas.net/ to learn about this wonderful feeding aid. We need to nurture our babies while feeding them via a tube and I sincerely hope this product can help a “tubie mom” do just that.
Thank you for reading our story. I have learned that things do not always work out as planned. I genuinely understand the challenges of having a child with special needs. I know that feeding a child with food allergies or with a tube can be heartbreaking and at times a true hardship. I feel blessed to be a part of these support groups and I know that together we can get through the difficult times. I feel lucky and inspired to benefit from wonderful companies, like Neocate, and to know amazing people who are working towards improving the lives of our children.