“Everything happens for a reason,” I have repeated this to myself like a broken record for 7 months; and when I was sobbing too deeply, my mother said it for me.
“Just hold your baby skin to skin, that will encourage her to nurse” – expert advice from a hospital nurse, and Naomi did nurse – for a few minutes before falling asleep, and so the cycle repeated itself. “Why is my baby rooting for the breast and not feeding?” I asked the pediatrician, and was assured everything was fine, but, in my spirit I knew it was not.
“She is still losing weight, maybe you are forgetting to feed her,” the pediatrician advised at Naomi’s two week weight check.
The lactation consultant confirmed Naomi was only transferring 20ml of breastmilk – after switching sides 4 times and performing breast compressions . . . and a “perfect latch,” which left my nipples flattened, broken, and bleeding. “Your baby has become ‘lazy’ because of your ‘oversupply’ and does not want to nurse past the letdown,” I was told.
“Just offer a two ounce bottle after breastfeeding,” our pediatrician advised when Naomi was 3 weeks old and still losing weight, despite nursing her non-stop around the clock. Fearing rejection I sterilized the SNS and offered her expressed milk through a tube, taped to my breast – she never took more than half an ounce and I was certain things were improving.
“She didn’t lose any more weight, that is an improvement, but, the SNS is not working – you need to use a bottle” I was told at the 4 week check up. My stomach dropped and vision spun. This was not happening. I had researched for months, all I wanted was a normal breastfeeding experience . . . I just wanted to feed my baby in peace.
“Please help me, my baby can’t breastfeed and she chokes on the bottle,” I pleaded with the nurse who admittedly did not have much advice. My new routine became breastfeed, bottle feed breastfeed. Feedings were lasting 2 hours, 45 minutes of that time was Naomi attempting to drink 2 ounces before she was out of energy – more often than not she could not finish a bottle.
“There is this other kind of tongue tie that is really hard to diagnose, a posterior tongue tie,” wrote a trusted la leche league leader in response to my saga on the LLL Facebook Group. I googled “posterior tongue tie,” and realized we had literally every sign and symptom except reflux (which showed up later, once she had enough nourishment to stay awake). I read stories of the “simple revision” being done and babies instantly latching and breastfeeding perfectly. My strength and hope for breastfeeding returned. I became a mama bear. I was angry and determined. I wanted to set things right for my baby and for as many other mamas and babies as I could.
I started taking domperidone and changed feedings to breast, bottle, pump. I prayed for my milk supply to increase – it doubled overnight!
The first ENT recognized an upper lip tie, but, not a tongue tie. The second ENT performed a tongue tie revision but claimed the lip tie would not affect breastfeeding. Naomi was able to transfer some milk. We followed up with speech pathologists who suggested suck training techniques, we began meds for reflux, Naomi was transferring some milk, my nipples healed. I eliminated dairy and soy from diet, we fed her high calorie formula in addition to breastmilk, and still her weight gain was painfully slow and reflux got worse by the day. Where was my quick fix?
We had the lip tie revised and still there was little improvement. I had health issues and took multiple medications and spent time in the hospital with very little pumping and my supply plummeted.
I joined the Tongue Tie Babies Support group on Facebook, IBCLCs and other group members were convinced there was unrevised tongue tie. I emailed pictures to Dr. Kotlow, and visited a local lactation consultant who all agreed Naomi’s tongue was still restricted.
Feeling crazier by the hour, I took Naomi to craniosacral therapy, where I watched her tongue change shape in front of my eyes. 2 days later, and several states away, I opened a door to an office which had a merry go round and video games in the waiting area along with breastfeeding posters. We were escorted to a private room where I filled out the most complete questionnaire yet, again my world spun as a man entered the room with a smile and said, “Hi, I’m Dr. Kotlow,” I wanted to cry, but, held fast. Before long he had taken Naomi and returned her, “the other doctor only took the anterior tie, now there is nothing left to take,” stated Dr. Kotlow. She had been seen by the best of the best. I felt such a peace wash over me. A few minutes after we left Dr. Kotlow called me, “I just wanted to tell you that you are not crazy and I really think things will improve.” I have been so amazed by people like Dr. Kotlow, and others who volunteer hours of their time to help people – I can only hope and pray I am able pay some of that forward one day.
Still, the road had not ended. I felt a surge of emotions. I was angry, cheated, defeated. I felt guilty for my feelings, because things had improved so much. I hated the people who had taken their babies for revision and they nursed perfectly afterwards. I had yet to understand that the complexity was our blessing.
“Gut healing” is the phrase I kept hearing over and over. I resisted until I was told, “gluten is like cocaine,” an hour later I was gluten free, a few weeks later corn free, the next week making Naomi’s formula from goat milk and other ingredients that I know she can safely consume.
I switched to stretching the revision site with Naomi’s head in my lap and feet pointing away, and it healed quickly and completely.
With more craniosacral therapy she was able to drink 3.8 ounces from my breasts last week – a milestone for both of us.
“Everything happens for a reason.” My baby is beautiful, happy, and growing. I have clarity of mind, and a passion to learn everything I can about the challenging topics of lactation so that one day I can pay it forward. I feel I am caring for my body and my family like never before. Everything is coming together at once, I am a stay at home mom for the first time, I am home schooling, I am breastfeeding, I am preparing healthy foods for my family. All these things fit together perfectly, God always has a plan . . . we simply have to trust and persevere. The phrase that kept me going was to help others – this journey has helped no one more than me.