In Summary

*I just wrote this as an intro in a breastfeeding support group. I am sharing it here since I don’t get to write about breastfeeding much anymore.*
Hello! I want to introduce myself and share my breastfeeding story in case it can help anyone. My son is now 4 1/2 and doing great; he breastfed until almost 3 after being faced with nearly every challenge. I am a single mom by choice and my son was born at 41w5d after a 60ish hour labor, 5 on pitocin. I have celiac disease and absorption issues and one of my big reasons for breastfeeding was to give my son the best chance he could at gut health. I took a hospital breastfeeding class and one at WIC, I joined support groups online, and went to LLL meetings. Breastfeeding hurt terribly and my newborn nursed constantly. He screamed and cried if he wasn’t on me and nursing (classic high needs baby, I later found out. The dr Sears article on it was an eye opener). By 5 weeks old, I knew something wasn’t right, though people in support groups and LLL mostly brushed off my concern. Someone mentioned to look for tongue and lip ties, which then prompted memories of my need for speech therapy and my lip tie breaking when I was about 13. I also did not, and never did, respond to any pumps. At the 5 week dr appointment I made when I realized he wasn’t gaining and ties were an issue, the two female doctors told me he was fine and to just pump if it hurt. I left, cried, trusted my gut, and kept fighting for help. I reached out to the IBCLC who taught the hospital class and started supplementing with milk from a friend. The IBCLC did weighed feeds, taught me how to support him for a little better latch, taught me how to use a SNS, and agreed he appeared to have ties. I was able to get his tongue clipped by an ENT at 10 weeks and raised money to get his lip lazered by a dentist (ENT refused to do it stating it doesn’t effect breastfeeding). His latch and transfer improved a little, my pain decreased some, but anytime he had a bottle his latch was messed up again. I had pretty severe low supply due to him not being able to nurse well in the crucial first weeks. I was able to find a bottle that worked for him (breastflow), and kept acquiring donor milk, but not before a breastfeeding ignorant doctor reported me to CPS for neglect. Part of the conditions of getting the allegations denied was weekly visits with a RN/LC while I got set with a new doctor. These LCs told me a lot of horrible misinformation that I had to work against. In one visit one of them told me to give my baby a pacifier to prevent SIDS when he is sleeping and then later said to limit his time at the breast because he was wasting energy suckling. I knew better, and along with the bottles and SNS of donor milk, I put him in a ring sling and nursed around the clock. At 6 months, we experienced our first letdown! He was suckling and sleeping in the sling when all of a sudden his eyes popped open and he gulped and gulped for about a minute. It was amazing. By about 9 months, he was gaining quite well and looking chubby. We had found a new doctor and our rhythm of feeds/bottles/solids. Some things had been ruled out, such as absorption issues, but there were many things that were never discussed or tested for. Though he was now gaining well, he was way behind on gross and fine milestones. He couldn’t sit, roll either way, or pincer grasp, his head lagged when helped up into sitting, and when put on his feet, his toes pointed to the sides and he had no ability to support himself. We were denied early intervention and the latest doctor reported me for neglect when we had an appointment to try to get a prescription for therapies. I had begun to suspect something bigger when she wanted me to take him to a neurologist, but no one talked to me about possibilities. I got through those false allegations again and we moved out of state for a job, which had the added benefit of lower requirements for early intervention and a doctor who at least supported breastfeeding and his growth. My son was diagnosed with hypotonia, low muscle tone, which though it explained a lot, is not a diagnosis but a symptom. PT and feeding therapy helped, but he was still small, delayed, and a horrible sleeper. His last bottle of donor milk came shortly after night weaning (I was losing too much weight and he was waking every hour, not letting me lie down). When he was 2 1/2, I was in a support group for families with children with hypotonia. It felt like there was a good chance he would be diagnosed with Cerebral Palsy if we made it to the neurologist. He couldn’t run, still fell a lot while walking, couldn’t use a spoon, couldn’t jump, and he woke about every 2-3 hours. He was also wearing mostly 12-18m size clothes and 2nd percentile. I learned about the Preemie Growth Project in that support group and started my son on trace minerals the next day. Within a couple months on a full dose, he was growing, jumping, and sleeping so much better. Six months in and he was solidly in 2T by his 3rd birthday and on a break from therapies. He was sleeping 4-6 hour stretches at night and had weaned a couple months before due to my work schedule and him only napping before nap and bed. The doctors now dismiss his global hypotonia, he’s been discharged from therapies, and you can’t tell him apart from other kids his age.

There is a lot of misinformation out there, most doctors don’t trust breastfeeding or know how to actually help with it, growth charts aren’t the end all be all but do matter, and trusting your gut (not just your heart), and that your view of success can change over time. My son and I dealt with low supply, tongue and lip ties, thrush, food intolerances, hypotonia, nipples that cracked, scabbed, bled, became misshapen and discolored during feeds, lack of letdown for 6 months, silent reflux, accidental mint, bottle refusals, and some sort of bleeding/pain that wasn’t mastitis but never got a diagnosis. It was not what I expected, but I’ve found my passion and my drive. Thank you for reading and I hope something in my story helps you.

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About JennP

Single mom by choice, lesbian, natural living, parenting, car free, Chicago.Thank you for reading and feel free to leave a comment!
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