So a friend of mine on another forum suggested I post here in hopes that it may help someone in the future (or now). This is my first post here and I am hoping that our story can help people out. This is a long post, forewarning. I wanted to write it all out in it's entirety.
My little one was born June 28th, 2014. We had issues from day one. He had difficulty latching on and wasn't getting anything from me. I assumed (at first) that it was because of my large breast size. I wear an O cup bra and it's pretty difficult nursing. We met with an ibclc in the hospital and she checked for tongue/lip ties as well, and found a minor anterior tongue tie, but nothing she said that was too severe and would impede his feeding.
We left the hospital, and LO was still losing weight - 10.3% weight loss in 6 days. My pediatrician also checked his mouth and came to the same conclusion and simply said "you need to formula feed. This weight loss is unacceptable." At the insistence of my doula, we ended up meeting with a private IBCLC who also happened to be the le Leches league leader for our area.
We did a weighed feeding and he was only getting in 0.7oz at a feed, which at ten days old is no where near enough. She checked his mouth...and his lip tie was so severe, it was nearly wrapped around his gum and his tongue tie went to the tip of his tongue and he had one of the worst posterior tongue ties she had ever felt.
We scheduled an appointment with a dentist (ninety miles away because no one in our area works on posterior ties) to have a laser frenectomy completed. His lip tie was classed as a 4A - it went to the tip of his gums. The posterior tie was ranked at a 4 as well and one of the more severe ones the dentist had seen. We had a chiropractic appointment the day before to help release the muscles and show more of the tie for the dentist and then two more visits after to make sure the muscles stayed released. The recovery for him was pretty fast and his fussiness quit after about 24 hours.
After we had it done, we were relieved and thought "ahh we are home free now!". Our very first nursing session after was great, then after that it went downhill quickly. I had blisters on my nipples, I was crying during our sessions and he was like a fish out of water.
So, we started doing these "suck exercises" to train his mouth how to work properly (again, as instructed by the IBCLC). He was showing slow signs of improvement with these exercises. After....two weeks or so, we hit a wall. He wasn't improving anymore, but we had hit a point that he was at least eating well and gaining weight, we just were having to use the stupid nipple shield which is inconvenient at best and painful at worst. His mouth was too weak to pull me in and keep me there.
We knew we had to introduce a bottle for when I went back to work (with pumped breastmilk - my work already knows I am doing that), so we talked with the ibclc about what to use bottle wise. We ended up trying first years breastflow bottles which has a dual nipple set up to mimic actual breastfeeding.
My husband tried it once on an overnight feeding (to allow me sleep - I was dead) and the next feed, I tried at first without the shield (to give him practice as I always did), and he latched right on - first time ever. I couldn't believe it. He went the whole feed without needing the shield. He was nursing right, keeping me in his mouth...and didn't hurt! It continued this way. The bottles actually trained him to feed right. The IBCLC had come over at that point (the day we started with the bottle at night) to check his weight and she checked his surgical site to make sure it looked good. He had a perfect diamond shape and there was absolutely no tie.
After three days of normal nursing and bottle at night, I noticed I was starting to get slightly sore again and just thought that maybe it's because I wasn't used to having him directly on me. It got progressively worse and worse, however, to the point I was crying again during feedings. I was back to a nice white, thin compression line on my nipple.
So, I had the random idea to check his mouth/tongue and I'll be a monkey's uncle if he didn't have more tongue tie. What I couldn't figure out, however, was that I could still see where all the previous tie was cut. The underside of his tongue physically looked different than it had ten days prior when the IBCLC was here - I could see the salivary glands, whereas before that I couldn't and of course, there was site.
So I texted pictures to the dentist and he told us to come in when we could. I also texted them to the ibclc and she said it was rare, but she had seen it before. The day before he started nursing without the shield, she had looked at his mouth and he had the perfect diamond incision and no tie, like I said before. She felt that when he started using his mouth the right way, the muscles in his lower jaw finally started to release. When that happened, it allowed me to finally see his salivary glands and also exposed the rest of the tongue tie.
So we went back to the dentist on Monday and had the rest of it cut. They've done over 300 frenectomies there and it was the first time they had seen it first hand. They were pretty excited and said it will help future patients.
After that release, each feeding session was progressively better, without doing more suck exercises. Now, we are rocking it and I'm pretty excited.
The recovery for this procedure took a lot longer than the first one unfortunately, because that tissue had started making blood vessels and stuff since it was locked back so far in the mouth for so long. But we are getting there. We kept him on infant Tylenol for a good five days because he was crying a lot and when I tried to do anything with his mouth other than my nipple, he would cry and cry - and especially since this part of the tie had blood vessels, the stretches they recommend you do to make sure the muscles free up and the tie doesn't reattach were extra important.
Tomorrow will be seven days after the procedure and I finally quit the Tylenol today. He is still nursing fantastic and I have not had to use the nipple shield at all. My nipples are no longer sore and he had a wonderful diamond shape under his tongue from the procedure and nothing else has come forward.
No, I am not a doctor and I am not offering medical advice, I am just passing along our experience as it's something that quite a few IBCLCs hadn't even heard of and the IBCLC we are working with shared the story within that group for education for them.
