The story of Hope

by Melissa Knight
(Akron, Ohio)

My precious daughter is named Hope for a reason. She is a two and a half year old beauty, full of life and energy, and can light up a room with her heartwarming smile.

You would not know to look at her, how much this tough little cookie has been through, or that she is tube fed.

Hope had problems with feeding since she was a newborn. At about two weeks old, she stopped latching on and skipped several feeds. I had constant appointments with a lactation consultant, because I so desperately wanted to breast feed, but no matter how much I tried and cried, it was not in the cards for us.

By four months old, my daughter was only able to drink a bottle while completely asleep. My husband and I would take turns feeding her all night long, so incredibly sleep deprived, and then since we still needed to try to feed her during the daytime we were absolutely exhausted and stressed. The feeds had gotten so bad that my daughter would cry when she saw the bottle coming towards her or when we sat down in the rocking chair that I fed her in. She would arch, kick, scream, and bat the bottle away. Feeding normally was non-existent.

Towards four months of age, she would scream so much when she saw the bottle, that it put her to sleep and she would feed, then wake up the second it was over. This was her coping mechanism.

Our lives revolved around the feedings because we would have to put her to sleep to feed her and make sure she was awake at times we were not feeding her.

It is an isolating feeling, a feeling of being a failure in a way; not being able to get your baby to drink a bottle or to nurse. Not being able to hold your baby tightly and enjoy a peaceful feed with her eyes looking to you with love is so devastating (and I never got to have that experience with my baby). It is isolating because nobody seems to understand the pain you are in and everyone seems to know what to do, but they do not realize that YOU HAVE TRIED EVERYTHING ALREADY AND NOTHING WORKED!

Our doctor at the time, was not helping us so one night we went to the hospital emergency room and said "We are not leaving until you help our daughter". We did not leave for five days.
My daughter was diagnosed with severe GERD, dysphasia, oral aversion, failure to thrive, and a milk protein intolerance. She was placed on a medication for the GERD and a special formula, as well as having her feeds thickened. After all of that still did not work, my daughter had an NG tube placed.

My husband and I needed to learn how to put the tube into her before leaving the hospital. That so far, is the worst thing I have ever had to do in my life. My daughter sadly, had the ng tube for 7 months because we thought she was going to get over the feeding disorder much sooner.

The ng tube was awful! Some days, we would have to place it back in her 3 times if she was sick, threw it up, or pulled it out. In order to place the tube, we would have to swaddle her with a blanket that had a Velcro piece to hold her hands down, I would sit on her legs, and my husband would hold her head still. All you would hear is ear-piercing screaming. Sometimes you would think you had the tube going down good, and out it would come from the other nostril and you would have to start the process all over again. (it would always end with me crying, and my husband having tears in his eyes). Then, we would have to take a stethoscope and listen to make sure the tube was in the stomach and not by or in the lungs. We would also have to check for this prior to each feed.

One time in particular, I tried three times to get the tube down her nose and was unsuccessful. A male nurse came to our home and offered his support. To my amazement, he had to leave the room to gather himself before he could finish helping us. (He too, was teary eyed).

I would never recommend an ng tube to any parent unless it is for a brief period. Our daughter got so aversive because of it, she did not even want her face touched for a long time after that, not to mention, it made her reflux much worse. She would dry heave all day long and we were constantly trying to stay ahead of her with distraction techniques, to avoid was exhausting.

At 11 months, Hope received a peg tube. She kept this in for awhile until the site healed and a g-tube could be placed. The peg tube was tricky, especially for one who is crawling. Attached to it is a long piece of tubing that does not come off. You need to tuck it into the back of their pants so it does not hang down. Hope also got granulated tissue with the peg tube, and my husband and I would also have to hold her down and burn it off with silver nitrate daily. (There are also many other things that Hope endured that are not related to the g-tube but required blood draws weekly to two times a week for a matter of time).

Now Hope is two and a half and still has a g-tube. The g-tube has saved her life by far. She is allowed to eat by mouth, but it is a long tough road ahead of her. We are currently in our third feeding clinic and things are progressing. She is not where I imagined her to be by now, however I have gained so much knowledge in this field of study, that I can appreciate and understand now why she is not.

Her prognosis is good, and she is expected to be eating without a tube by school age. I have never given up hope on my little girl and have dedicated my life towards making her whole again, inside and out.

My advice to any parent out there is that you know your baby and if something seems like it is not not stop at the first doctor that says it is okay. You are your child's advocate.

Most importantly, never ever give up Hope! My daughter has the best personality a parent could ask for, including an incredible sense of humor at such a young age. Children are amazing and can conquer just about anything that life throws at them. They can teach us so much even as adults.

Just remember to love your little ones through it all and enjoy the small accomplishments!

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