My son was born on 3 september and from the minute he was born, refused to latch on. In fact - he showed little or no interest in my breast for the first two days of his life.
The LCs at the hospital were not at all concerned, saying that it is perfectly normal for a newborn to not latch or show interest in the breast, and that as long as I was giving him 15 drops of hand expressed colostrum every two hours in the first few days that everything was OK.
In fact - all the doctors we saw at the hospital (3 altogether) were also not concerned, reconfirming what the LCs said and reassuring me not to worry.
By the time he had gotten home he had just about started to latch on, it was painful, but no more painful than I imagined it would be, but even though he was on and sucking, it was clear that he wasn't really getting anything from my breast - particularly since my milk had not come in.
We were adamant to continue breastfeeding, and so I was pumping out as much colostrum as I could possibly pump (hand pump) and my husband and I were feeding it to him in a syringe every two hours. Obviously he was not getting enough. His first doctors appointment didn't go well and he had dropped 12% of his birth weight and we were advised to switch to formula.
Adamant that we didn't want to introduce the bottle, we fed the formula to him with the syringe, and then later a supplemental nursing system, as advised by our lactation consultant. This way I was getting the nipple stimulation I needed to get my supply going (bearing in mind my milk still hadn't come in).
A midwife we met suggested we look at his tongue to see if it is tongue tied - and it turns out he had a severe upper lip tie, and a tongue tie, which was making nursing impossible.
We took him to the doctor, and he got the tongue snipped by a local ENT, who told us that he should be better later that day. When we got home he was in so much pain, he refused to latch on to my breast and so we were unable to feed him by the SNS, and so back to the syringe for us.
Two days later, he is STILL not nursing and struggling to eat (at this stage it was taking my husband and I 3 hours to feed him 2.5oz of formula using the SNS). The lactation consultant came by and said that his tongue tie was still there and the original doctor did not snip it far back enough.
She recommended a well known and highly reviewed surgeon which we scheduled an urgent appointment with. The procedure was done by laser. The doctor said that the previous ENT had not done a great job on the first procedure and that he would be in quite a lot of pain for a few days and his recovery would be longer.
Here we are - almost two weeks later, and he is even worse than before. He can barely suck on our finger, and we have had to resort to feeding him with a bottle.
Now he will not at all take my breast, and he sucks at the bottle so limply that feeding him 4ounces sometimes takes an hour! He went from latching on but not being able to get anything (but still with a decent suck) to not even being able to suck a bottle or a finger properly.
We have tried to give him a pacifier (again, not in our plan) but he cannot even keep it in his mouth.
The lactation consultants and doctors who have seen him have said that his slow recovery from the tongue tie procedure is very unusual, and they have recommended that we take him for occupational therapy "suck training" where he needs to be taught how to use his tongue again.
For me this is very worrying - isn't sucking an instinctive thing in babies?
All this time I am pumping like a fiend (my milk only came in on day seven) and producing just enough to feed him almost exclusively breast milk. So there is one positive at least.
Here are my questions:
Has anyone heard of or had their child see an Occupational therapist for "suck training"? Is it possible that we have forever damaged his ability to suck and therefore to eat? Is there a chance that his tongue could be permanently damaged as a result of the frenectomy?
Is my breastfeeding dream crushed? Assuming his tongue gets fixed, will I ever get him on my breast again? I have tried very hard to offer the breast before every feeding, to no avail. He tongues it sometimes, puts it in his mouth but never takes anything further than my nipple in, and he never latches. I do skin to skin as long as I do not have the pumps attached to me.
Does anyone have any good advice to offer on how we can go forward from here? We are seeing multiple lactation consultants but no one seems to be offering anything new or helpful anymore.
Thank you so much for reading this massive diatribe. I tried very hard to make it as detailed as possible without including too much superfluous information. I hope someone can help, as I am feeling rather quite desperate. First time mom insecurities, coupled with the fact that I feel like such a failure as a mother, has not made for a good first three weeks of my gorgeous son's life.