Wednesday, October 14, 2015

Medical Complexities and Changing Opinions

Over the past couple years I've been joking with Walter that I am going to become a dog trainer. And he has joked back that I'm not allowed until Stella is a "good dog" (see previous post). I looked up the requirements to attend The Academy for Dog Trainers and found the essay question each applicant must answer. At first it stumped me but it didn't take long before I knew exactly what I would write about if I were to complete the application process.

Below is the essay question and my response, which exceeds the 300-500 word limit, but for the sake of this post and my personal interest in the importance of this question, I am choosing to flesh this out in detail.

We’ve all had the experience of holding an entrenched or strong opinion and then changing it, sometimes as a result of gradual reflection, persuasive arguments made by others, epiphany or a combination of factors. Describe a time when you changed your view about something. How did it come about and how did it change you? Your experience can be about any subject (not necessarily dogs).

I grew up going to La Leche League (LLL) meetings with my mom. LLL is an international organization devoted to helping and supporting breastfeeding mothers. To say breastfeeding was a big part of my life is an understatement. I'm not even sure when I realized that another form of feeding for infants even existed, but I was significantly older that most. My mom was (actually still is) an LLL Leader, which meant she was devoted to counseling struggling mothers through the process of breastfeeding. This also meant our home phone rang off the hook with crying mothers on the other end of the line. I remember a little pepto bismal pink message pad at the ready by the telephone and my sister and I were given detailed lessons on how to properly answer the phone and take down messages. 

When I was pregnant with Isabella I didn't even consider an alternative to breastfeeding. My husband didn't consider an alternative either, we didn't see any necessity for formula and it was clearly written out in my birth plan that Isabella would not be given a pacifier or bottle, and would be put to the breast upon delivery. I'd even been attending LLL meetings in Kent, Ohio as an expectant mother and I couldn't wait to enjoy a magical breastfeeding experience with my daughter. 

Nursing Isabella was hard right off the bat. And I began to understand why people choose to replace the breast with a bottle. But I was determined and I stuck with it and got through the hard part. And nursing Isabella was magical. I loved nearly every minute and enjoyed lazy afternoons snuggling my infant and feeding her the world's perfect food. Not only that, I was enthralled with idea that my body was not only able to grow a baby, but it was more than capable of providing her with perfect nutrition for the first year of her life. As someone who struggled with an eating disorder and previously felt completely uncomfortable in my own skin, this was an incredible experience and extremely healing for my body and my soul. 

Fast forwarding a little bit, I went through the process of becoming an LLL Leader and within a year I was leading meetings and counseling other women. I felt strongly, actually, I was even hardheaded that breast is best and formula is evil. Isabella never had a bottle. We didn't even own a single bottle. 

Let's fast forward a little Isaac. 

Isaac was born and the dreams I had of recreating my experience with Isabella quickly dissolved, no actually, they were smashed, with a giant hammer and then shredded with a chain saw--how's that for imagery? 

Breastfeeding Isaac was miserable. He cried. No screamed...all hours of the day and night. There's this lovely moment after a satisfying feeding in which the baby unlatches and some breast milk dribbles from their mouth and they look completely drunk on love. Yeah, that never happened with Isaac. Nursing him was miserable, living with him was miserable, trying to get sleep while living with him was miserable. You get the idea. We blamed most of this on his need for the upcoming craniofacial surgery. I was convinced his head shape was giving him headaches and that after surgery and recovery we would be back on track. Surgery came and went and several months later Walter and I were having a meeting with the pediatrician about Isaac's lack of growth and weight gain. I was furious and I felt like a failure. The doctor (who has since apologized) blamed breastfeeding even though by that point I was on a stressful and exhausting quest to find out what was wrong with my baby. I knew in my heart it wasn't breastfeeding and I was determined to continue providing my son with what I felt was the very best nutrition. 

Nine long months later, Isaac got a g-tube. I angrily breastfed him until he was fifteen months. I say 'angrily' because it was never enjoyable and by this point he had a slew of doctors and was in feeding therapy slowing gaining one ounce after another. We went from not even owning a bottle to trying to get Isaac to take any number of bottles on the market. 

The puzzle pieces of his diagnosis gradually came together in a painful process and by this point I was stepping away as an LLL Leader. Going to meetings was hard and I usually went home feeling sad and frustrated with my own situation. Mothers at meetings were worried about how often they should nurse their baby and it seemed so trivial compared to what I was going through. All I wanted in the world was for my baby to be satisfied by breastfeeding. Not only that, but formula was on the horizon for us. And admitting that to those around me, to my entire community of friends so devoted to breastfeeding, was daunting. 

Unfortunately, g-tube = formula. That is beginning to change a little and I can share more in a different post but when your kid goes into surgery for a g-tube, they don't leave without a prescription for formula. Within a matter of days, I went from feeding my baby the most natural meal on earth, to the most artificial. But guess what, he literally wouldn't have survived without formula. Isaac had long been diagnosed as failure-to-thrive, which is a stab in any mother's heart, and he needed medical intervention in order to have any chance at reaching his greatest potential. By fifteen months old, my son wasn't walking, crawling, babbling (let alone talking), and the future looked grim. 

Isaac still has a g-tube and at this very moment I have three boxes of canned formula in my kitchen. And yes, I still blend real food meals for Isaac, and he does get the packaged Real Food Blends created by a brilliant mother on the quest to change what the standard of enteral feeding looks like, but pretty much every day Isaac has formula. And you'd better believe that every day I am thankful for that can of Organic PediaSmart. 

I am no longer an LLL Leader. I resigned shortly after Isaac got his g-tube because it was too hard emotionally for me to attend meetings. But I have an incredible group of friends that grew out of LLL and their support along this journey with Isaac has been unwavering. Walter and I still believe "the breast is best" but we also believe that formula has made our lives, and the life of our son, so much better. With sincerity, I now understand why some moms just don't want to breastfeed at all, why some babies need formula, and why some moms may want to breastfeed but due to medication or medical issues, they are unable to make that choice. Ultimately, formula exists for a reason. Those of us who are LLL or breastfeeding supporters, can hold strongly to the opinion that breast milk is the perfect nutrition, but we shouldn't bash the need for formula and a mother's choice to choose what is best for her, and her baby. 

Isaac is no longer diagnosed as failure-to-thrive. It has taken a very long time to remove that diagnosis and I am thankful that there are many ways we can provide nutrition to the medically complex child. I am also thankful for my many experiences and opportunities for growth that have come from raising a medically complex child. I have learned that it is okay for previously steadfast opinions to morph. As a result, I am more capable of supporting other mothers in a loving and thoughtful way. 

1 comment:

  1. What a heartfelt post! I so enjoy reading about your life... a written account really crystallizes the nebulous clouds of thought and emotion surrounding experience. I look forward to more of your discoveries and reflections as you look back on life from your current vantage point! :)