I had a breast reduction in 2007 and was therefore told that I would not likely be able to breastfeed. During pregnancy, I was able to express some colostrum and was overcome with joy that there was a chance I would be successful! With flat and inverted nipples, latching in the beginning was difficult but I exclusively breastfed throughout my daughter’s first month, believing everything was fine.
At her 4 week checkup we discovered she had not yet regained her birth weight so I was given a can of formula by the pediatrician and a referral to a local IBCLC. I felt like the rug had been pulled from under me, so I began offering to nurse my daughter every 30-45 minutes, refusing to supplement if it was unnecessary. She happily nursed, however she had only gained a few ounces by the end of the week so I made an appointment with an IBCLC . After spending about 30 minutes with me the IBCLC diagnosed me with low supply as a result of my breast reduction and a single weigh-feed-weigh whereby my daughter took 1.5 ounces from my breasts. She recommended 3 ounce bottles of formula after every nursing session and that I rent a hospital grade pump and purchase a variety of galactagogues (including fenugreek) from the shop she worked for (totaling around $200 when everything was said and done!).
From there I began pumping after every nursing session and supplementing with formula by bottle as I was told, and within 2 weeks my daughter was refusing to nurse altogether- in fact, if she even saw my breasts she would start screaming. At this point I did two things; I joined Diana West’s BFAR fora and began learning about supplemental nursing systems and galactagogues that would actually be helpful to me. I also began seeking donor milk for my daughter so that I could get her off of formula. I began researching fenugreek and learned that it is actually unsafe for me to take (with my food allergies and hypothyroidism) and I scheduled an appointment with the Newman Breastfeeding Clinic and Institute in Toronto. I also ordered some domperidone online and had a discussion with my primary doctor (PLEASE never begin any medication/supplement without first discussing it with your medical care provider AND your IBCLC), who could not see any reason why it might be harmful for me, and I started myself on the middle recommended dose per Dr. Newman's instructions.
Within 24 hours I was engorged and my pumping output was increasing. I began slowly using a Madela SNS I purchased to help combat the flow preference I saw my daughter had developed. I was still “power pumping” with my rented Madela Symphony every 2-3 hours for 15-30 minutes on a 24/7 basis and soon I found that I was able to stop relying on donated milk, being able to pump 1.5-2 ounces during each nursing session. Along the way I also noticed that my daughter couldn’t stick her tongue out very far, so I scheduled an appointment with an ENT per my pediatrician’s recommendation to get her evaluated for a tongue tie. It was confirmed and her tie was snipped, but it was still very slow going getting her back to the breast and she still received bottles for most of her meals. After her tongue tie release I had her latch re-evaluated by a La Leche League leader in my area, and she confirmed that the latch looked good and was deep, but I noticed that over the next week or two she had started making some clicking noises as she suckled. I read that it was common for there to be loss of suction or clicking sorts of noises as a baby got used to using an un-tied tongue, so I didn’t worry about it.
Time came for my appointment at the Newman Clinic and by then I was so stressed out that my supply had actually plummeted (despite being on 120mg of domperidone and power pumping) and at the appointment I was unable to get even one let down. I was fortunate to be able to see Edith Kernerman (co-founder of the Newman Clinic), who recommended that I increase my domperidone dosage to 160/day and that if supplementation was necessary and I couldn’t get donor milk or my own supply up adequately, that solids may be introduced prior to 6 months as a healthier alternative to formula. She also pointed out that my daughter was still tongue tied, and that less than 2 weeks following her tongue tie release it hadn’t been snipped enough- they left a posterior tie in her mouth, and she showed me how to spot posterior ties as opposed to the more typical ties.
After my appointment at the clinic I was disheartened and accepted the fact that I’d be in this cycle forever. I scheduled another appointment for a second frenectomy and had to argue with the doctor in order to get it done (he was refusing and telling me that I "didn't have to put her through this again when formula is a perfectly good option").
Claudia was just starting to nurse more often as I increased my domperidone dosage and I started giving fewer bottles. I used the largest tubing in the SNS and raised the container high above her head for the fastest flow possible, while giving slow flow bottles and only giving a small amount at a time. I was trying to get her to reverse her flow preference to ME instead of to the bottles. It started working! It got to a point where I was able to pump 1.5 ounces after every feeding, and then I was giving those 1.5 ounces back to her via the SNS at the next feeding. At this point I began lowering the tube size and restricting the flow of milk she got, and clamping the tubes for incrementally longer periods of time so that she would have to wait for “letdown” before she got milk.
At 5.5 weeks I saw an IBCLC. By 8 weeks my daughter was no longer nursing. By 10 weeks we obtained our SNS. Around 12 weeks I found her tongue tie and by 14 she had her first frenectomy. At 16 weeks we went to NBCI and by 18 she had her second frenectomy. By 20 weeks we were finally exclusively breastfeeding again with no pump, no SNS, and no supplementation! At that point I weaned down from the domperidone (per Dr. Newman's dosing instructions) until we finally had a normal breastfeeding relationship (just in time to start introducing solids lol). It was a long road, but I’d do it all again in a heartbeat because now our nursing relationship is as strong as ever. I do feel extremely frustrated, however, because had her tongue tie been seen in the beginning, I would not have endured so many months of struggle and heartache… but had I not experienced any of it I would not have found myself in the amazing position I’m in today of being able to help so many mothers with their own issues, having learned so much from mine!
Here is our database of resources as well as food for thought!