Stories from our families - Larissa's Story
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How to begin? The desire to have another child was great and although we already had two amazing children, Katherine and Alexander, my husband and I decided that one more was needed to complete our family. Little did we know what an adventure and learning experience was to follow. We navigated all the usual pregnancy issues and avoided all the “bad” substances and felt that we had created the perfect environment for the development of this new little soul.
Late in the pregnancy, Larissa began to indicate to us that this would be no straightforward journey. She was little, and stayed little during that period of the pregnancy when you would expect her to jump in weight. As I was older, this was put down to the womb conditions and I was monitored. Larissa stayed around 5lbs all the last month. The decision to bring her into the world a little early was made with the hope that we could begin to supplement her immediately. Her arrival was quick, after 45 minutes of induction she was in my arms, seemingly perfect.
As the days and weeks passed, it became obvious to all that she was not growing well, was not eating well (often falling back to sleep after only a few minutes of nursing), and she was continually suffering from some lung related illness. One horrible night, when her breathing was so bad, we rushed her to emergency, and from that moment onwards our lives changed. Our other children were lost in a whorl of doctors’ appointments, hospital visits, tears, and exhausted parents. Larissa was diagnosed with failure to thrive and gastroeosophogeal reflux disease at the age of six months. I might add that we had struggled throughout these months to have the doctor recognize the problem.
The nasogastral tube was put in place and in time and with much support, we learned to cope with, replace and feed with this life saving device. At first hated and feared, we realized with the help of many wonderfully supportive moms, that this medical device was enabling us to enjoy our new child and to watch her finally grow. She began to gain many of the milestones that had been passed and by one year we began to have a sense of hope that she would live.
Oh that our story could end there. Not so, we had only just begun. The next months would see Larissa put through many tests and many visits to specialists. Eventually, we learned that she had developmental issues relating to the underdevelopment of a small piece of the brain, known as the vermis. At about this same time, we realized that we would have to replace the nasal tube with a gastric tube and she was readied for yet another hospital visit. Larissa had a PEG inserted into the stomach and after 6 weeks we moved to a MicKey device.
Ah, but I have forgotten to share with you all the eating journey associated with this device. Medications, exploratory at best, were fed to her in the hopes that the reflux would be controlled. A cacophony of drugs, including Zantac, Metaclopamide, and Prevacid, and Omperazole were tried. The latter drug seemed to do the most good. Her reflux (barfing) continued for months and we had to slowly, oh so slowly, increase her food intake, from a continuous drip, to bolus feeds of 50ml which were slowly increased over many months to 150mls. All this was done with the help of a Kangaroo pump – an amazing device to control the rate of liquid entering the stomach- which would, without fail, manage to jam sometime during the early morning hours, causing one of us to drag out of bed to the sound of the incessant beep, to reset and adjust the feeding. Plastic tube stiffeners would get entangled around her limbs, and caused us great fear. Midnight puking would often require bed changes, clothing changes, and reinsertion of tubes. Needless to say, we remained exhausted, sad and it was very difficult to see into the future.
Then, a miracle of sorts, we began to meet other parents through an exploratory attempt to create a support group for parents with children with reflux. This group, named KEPP, was my first introduction to other parents suffering in the same way. After over a year and half of suffering alone, finally we had other people who understood that having a tube fed baby was exhausting. That, in fact, tube feeding was not “plug and go”, as one bureaucrat had indicated to me at At the same time, I attended a workshop put on by Marsha Dunn Klein. These two supports started me off on another journey with Larissa.
I learned about blenderized food, bolus feeding, expectations and friendship. Larissa slowly learned to tolerate more feed at a time, and while we had always offered her oral food, she now began to taste things again. We learned that Larissa was teaching us patience and that life leads you where you need to go, not where you want to. Through Larissa, I have gained a greater insight into the needs of my other children. My understanding of ‘normal” has changed. My compassion for others struggling along to keep a family running (regardless of the challenges) has increased. I am slowly learning from Larissa, that she thrives no matter what I feel she should be. She is who she wants to be and she only wants to give me love. She never asks more from me than my time and love. With her smile, my exhaustion lifts; with her laughter my fear of the future abates.
Through her I have gained a new appreciation for old friendships and have gained new ones. My husband and I have grown stronger and more united in the future. My children have learned to care deeply for each other, while still learning to cope with each others foibles. Little did we know that when deciding to complete our family with another child that she would complete it in a way we would never expect and force us to change and grow. Thank you for sharing Larissa’s story, and I hope that if you have a child with a challenge of any kind, that you can take a moment to learn something from them about life and love. Larissa is now three and still continues to give us a challenge. She explores food with greater gusto, but still we maintain the tube feeds to sustain her. Our journey will continue for many, many more years I hope.
Pamela Mayne Correia