I still feel if Henry had been diagnosed early on and treated sooner that we could've save our breastfeeding relationship. Like it's always said, everythings 20/20 in hindsight.
After Robin Glass MS, OTR, IBCLC saw us on that first visit it took me a while to recover from that blow. I was told by others who had experience with a tongue tie that after their infants had their tongue clipped it was like night and day, their babies could nurse. I had my hopes up high. The light was at the end of the tunnel. I was the engine that could. We still were mainly bottle feeding formula at this point. My supply was trashed, I was waiting on a shipment of Domperidone/Motilium to arrive to my doctor to hopefully help my supply. I was pumping less and less each day. I was taking so much fenugreek, goats rue, brewers yeast and teas. I've probably spent a small fortune on supplements/remedies to get my milk back. I was highly anxious about my upcoming appointment with MaryAnn O'Hara MD, MPH, FAAFP, FABM and to see if Domperidone would work for me. I'm sure all the anxiety I was experiencing was not helping my supply or my attempts to feed Henry. But that's kind of what first time mommy-hood is about. Anxiety.
At my appointment with Dr. O'Hara I had to sign some waivers. On the waiver was a number I hadn't seen before. I found out for the first time that the tongue tie Henry had was not only very rare and extremely hard to diagnose, but that it was equally hard to treat. Whereas with a traditional tongue tie 99% of the time a clipping will 'fix' the problem. With Henry's posterior tongue tie it's only 75% of the time, and to get that number it usually requires not one, but a series of clippings. I felt like throwing up when I read that. I'm actually surprise I never vomited/fainted once during this part of Henry's treatment.
I was very nervous. My husband had some deadlines at work so he couldn't come with us, so I made my sister come. If I had known that I would have to hold Henry down while his tongue was cut with surgical grade scissors I would've made him, deadline be damned. Instead, as we were having the procedure explained to us I found out I'd have to hold him. I felt sick. Still do as I think back on it. Dr. O'Hara prepares me and tells me not to expect a miracle, that it will probably have to be done again. My naive hopes and dreams of all these problems going away instantly were dashed as I held my son down to have his tongue clipped. She couldn't get the local numbing medicine applied to his tongue, and I didn't know to give him tylenol prior to coming. However, we did give him some Tylenol before the clipping, but it probably didn't kick-in in time. She clipped his tongue. My hopes/dreams dashed, my son screaming in pain, blood oozing out of his mouth, I felt like fainting. I couldn't believe what I had just done to my little sweet baby. He was screaming his head off, I felt weak. It's kind of a blur. The lights in the room got turned down. Dr. O'Hara tried to help me get Henry to latch. He wouldn't/couldn't stop screaming. We gave him some breastmilk from a bottle instead.
Shortly after his tongue was clipped (at least I think it was after his tongue was clipped and not before) my order of Domperidone came in. I instantly felt some relief from my anxiety. I struggled with myself to give it time. I was so ready for a quick and easy fix. I needed it to work, and I needed it to work yesterday. Something needed to give, something had to go right. I couldn't keep getting disappointed. I felt almost frantic about my supply. It wasn't quite over night, but it did work (and probably surprisingly quickly). Within a week I was making enough to feed him but not enough to store any in the freezer. I went from making ~4 oz a day to making about 20 oz a day! The next week I was able to start freezing 5 oz a day. (as a side note I am now currently making ~30 oz a day and have quite the freezer stash - of which I am so proud and I plan on donating some too!) It was working! The relief I felt (and I'm sure the relief my husband felt) was palpable! Now I just had to concentrate on Henry's latch problems.
We go back into Childrens Hospital to visit with Robin Glass and see how Henry was doing. This visit we tried several methods of feeding him, including supplemental nursing systems to try to ease him back to the breast. She warned that it wouldn't be quick, that he's developed a preference for the bottle, but that it wasn't too late either. However, we had no luck at this visit getting him to latch. She assessed his tongue and asked about his chiropractic treatment. We hadn't noticed anything changing with his treatments at the Chiropractor so she suggested we go see Steven Cavanaugh, DO, that he is one of the best to treat his muscular problems. She also wanted us to visit Dr. O'Hara again as his tongue was still tied and she noticed his upper lip was tied as well. But she couldn't say if that could be contributing to his latch problems or not, but could cause a gap tooth resulting in orthodontics and a clipping later in life... Yeah that's a bill I'd rather avoid if possible.
We went in to see Dr. O'Hara first as she had an opening. Jay took the morning off to come in with me as I told him I couldn't do it without him again. Dr. O'Hara talked to us about what had happened since we last saw her and what the plan was for future treatment with him. When we told her about our appointment with Dr. Cavanaugh later that week she asked us to please hold off on the tongue clipping until Dr. Cavanaugh can assess Henry and 'loosen things up' so he can get the most out of this next clipping. We agree, I knew I couldn't do this a third time. This next time was it. It either fixes it or not. It was hard to feel that disappointment again. Yes, I was glad I didn't have to hurt Henry that day, but I was sad too. I was so hoping for a 'cure'.
Dr. Cavanaugh blissfully has appointments open in the mornings so I could drive Jay into work, get to spend a little bit more time with him, then pop on over to his office. We noticed a HUGE difference in Henry immediately following his treatment. Instead of his head being 'stuck' and almost always turning to one side, he started turning his head the other way. I still couldn't get him to latch, but seeing that difference gave me some more hope. It wasn't an all easy appointment though. Henry's pelvis was moderately twisted, he had a severe restriction at the top of his spine and another severe restriction in his skull in addition to the known jaw tilt and limited mobility. My poor baby had so many things 'wrong' with him. But he was still perfect and wonderfully sweet. Dr. Cavanaugh thinks that Henry was probably just 'stuck' in my pelvis, which would explain why he never dropped, and would explain all his musculoskeletal issues. So per Dr. Cavanaughs request after listening to Henry's lengthly medical history we waited for 3 weeks to see Dr. O'Hara again.
At our next appointment (2 weeks after starting to see Dr. Cavanaugh) with Robin Glass we still couldn't get Henry to latch. He was fitted for a wedge (to help with his reflux) and I left with the impression that Robin just didn't have any hope that Henry would breastfeed. I knew that my time of trying to get Henry back to the breast was coming to a rapid end. She didn't want to see us again until his tongue was clipped, there was nothing more she could do for us until then.
Henry continued to thrive. He grew with leaps and bounds. He hit many milestones 'early', he's my smarty pants. My stress levels were still high. Thank god for breastfeeding/pumping burning calories - I started treating my stress with food (moreso than I already was). I tell Jay that I need an end in sight. I can't keep doing this. Up until this point he knew how important this was to me and was push push pushing me. I needed him to back off. He didn't realize that he was stressing me out more, he thought he was giving me the support I needed, that I had asked for. I told him that at this point I needed to know that he was ok with me quitting. I was (and had been for quite a while) crying almost every day, sometimes several times a day. Being rejected by Henry every time I tried to feed him was emotionally draining. To this point Jay had approached these breastfeeding problems we'd encountered 'like an experiment, emotionally uninvested' as he put it. I couldn't be more opposite, to me it was not an experiment at all, and I was hugely emotionally invested. It took several emotional conversations over the course of a week or two for him to realize that him 'helping' me the way he was, was actually hurting me.
We decided that we'd go through Henry's 4 mo birthday, around the time that we would be travelling to visit my family in PA for Thanksgiving. Dr. O'Hara was wonderful enough to make a new time slot to see us and come an hour earlier than she normally would. I had an end in sight. We had our next appointments set with Robin and Dr. O'Hara. I was optimistic while reserved. It was impossible for me to not feel emotional pain going through everything, but with an end in sight I could relax a little. I had some breathing room I hadn't had previously.
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