I have had a heck of a time nursing and I will try to make the back story short...
Shiloh is my 4th baby. I have a ten year old and twin 5 year olds.
My 10 year old had a weak suck at the start, and I pumped and bottle fed, supplemented, used an SNS and eventually was able to exclusively breastfeed her by 3 months of age. I nursed her until she was 14.5 months old. She had very few bottles.
My twins were born 9 weeks premature, and I pumped every 3 hours around the clock to establish supply and provide milk for them in the NICU. When they came home at 4 weeks of age, we gradually weaned them from the supplements and I went on to nurse them for 16.5 months. They also had a few bottles a day with a nanny.
Shiloh was born at 38 weeks and seemed to take to nursing right away. But then she lost a pound and got dehydrated and was readmitted to the hospital at 3 days for jaundice and dehydration. She was there for 3 days. I was pumping during that time, trying to get my milk to come in faster - it came in on the 5th day. We came home and exclusively nursed.
Nursing was always a challenge. She did not like to wait for my letdown and the more she fussed, the longer letdown took. She constantly popped on and off of the breast. She would fuss and cry and nursing sessions always ended when I was too frustrated to continue.
She started daycare at 3 months and took 2-3 bottles of breast milk a day there without issue during the day.
The nursing kept getting worse and worse and I kept having LC visits, but nothing was helping. One LC told me she was just a "difficult nurser". We kept trying.
Then I learned about lip tie and it looked like Shiloh had one. We spent a month looking for someone to help us with it, and finally drove 1.5 hours to Seattle to have it looked at.
During that visit, she was deemed to have a weak suck, a strong gag reflex, no movement at the back of her tongue, a posterior tongue tie and a lip tie. The tongue and lip ties were severed (she was 4.5 months old at this point). We were told to switch to Dr. Brown's preemie bottles to help strengthen her suck, and follow up with a speech language pathologist (SLP) for mouth exercises, as well as a cranial sacral therapist (CST) to help her start using the muscles needed to nurse properly.
At first, nursing seemed better. But then, over time, it started getting worse. And worse. And now it's really, really bad.
We are doing OT for her mouth. We have a Nuk brush (a little rubber tool with a nubby end) that we use to help desensitize her gag reflex. It has worked well - she used to just gag when it went in her mouth at all, now we can roll it down the insides of her cheek, down her tongue and up the roof of her mouth with no gagging.
The CST said she could feel Shiloh nursing as if she is "sucking on a straw" which is the perfect description. She does not want my nipple in her mouth much at all - she sucks right on the tip. She pushes against me with her arms to make sure she doesn't get much in her mouth. She nurses through letdown and not much past that since she can't suck effectively at all.
The CST also said she could feel Shiloh start to relax and use the back muscles of her mouth to nurse properly, but as soon as that would happen, she'd tense up and push me away and get back to her straw sucking.
It has gotten so bad that it's a battle of pushing and arms flailing and she wants to nurse every hour or so since she gets so little each time. I am losing my mind.
Here is where we are at now:
(1) I think the Dr. Brown's bottles have made it worse. It has such a narrow nipple, I could see how she could learn to "straw suck" off of it. I checked out every bottle nipple at the store last night and chose a Playtex Nurser as it looks the most like my own nipple and I think it could help her re-learn how to do this.
(2) I am going to try to swaddle her and pin her arms down to see if that will help. I tried it once this morning and she didn't cry or refuse to nurse, but she got very rigid and was arching her back to pull as far from my nipple as she could.
(3) We had been doing the mouth exercises at least 20 minutes before a meal (at the SLP's recommendation) but the CST said to try to do it RIGHT before I nurse her, to try to "trick" her in a sense - she CAN take the Nuk brush in her mouth, so there's no reason she can't take my nipple. Perhaps if the Nuk brush comes right before, she will be more accepting of the nipple as the sensation will be fresh in her mind.
I don't know what else to do. She's pushing me away, slipping off, turning away constantly... she doesn't cry when she nurses - she WANTS to nurse - but the act itself is a struggle and it's frustrating. Sometimes I just cry as I fight with her over it all.
I just really, really need ideas and help. We have been through so much to get this far and I have no intention of giving up now. But I don't know how to fix this. I have tried everything the LCs, doctors and specialists have told me and I'm getting nowhere.