posterior tongue tie part 1

This was written a few weeks ago... when I was hoping there wouldn't be a part 2... but there will be. We are still struggling now - but I thought I would share part 1.

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So, surely it must nearly be true that I have experienced almost every breastfeeding barrier in the world... Read my post Breastfeeding Anyway HERE to see what i'm talking about :)   Elmer's nursing journey has been no exception - and it has taught me yet another gem of knowledge that I lacked before he came.
If you read Elmer's birth story, you'll know that he was born in a beautiful water birth. I didn't have an epidural - & baby was alert and content when he was born. After I held him in the water for as long as I wanted to - my midwives helped me stand and they wrapped us both in towels as I climbed carefully out of the tub carrying my tiny mite. They didn't want anyone else to take him, as they told me that research supported the claim that me holding him would help to establish our breastfeeding relationship (ha!) - even though I had been unable to get him to latch in the tub like I had with Ephraim when he was born.
As soon as I got out of the tub, I tried again, but we couldn't manage to latch. I honestly didn't think too much of it, as I was drunk on birth hormones - and giddy with my beautiful baby boy. We took our time, and finally it was time for the midwives to come and check him out and weigh and measure him. During their check, they saw that he had a pretty thick anterior tongue tie - his frenulum was stopping his tongue from releasing so that was likely why he hadn't been able to latch. They asked me if I wanted them to clip it. I immediately said yes. Just the day before, we found out that Charter (our 11 year old son) requires braces - and the orthodontist told me that this need was likely because he is tongue tied so his tongue never sat in his mouth correctly - so his palate is narrower and deeper than it should be.
My midwives proceeded to make what they said was a fairly deep frenulum cut - and Elmer miraculously latched.
We were pleased with his latch and it looked like he was sucking well. It was mildly uncomfortable right from the first latch - but breastfeeding has never been easy for me - and Reynauds usually causes quite a bit of pain early on - so again, I didn't think too much about it.
We went home, and Elmer continued to be difficult to latch, but that's not uncommon - & I never find the beginnings of breastfeeding easy - so I just continued doing what I was doing - until Elmer was 24 hours old... and then I couldn't latch him at all. It was evening, and he rooted and fussed for hunger - and I offered him the breast and he couldn't latch at all... I expressed milk into his little birdie mouth - and he swallowed, but couldn't lap it - or get latched on to get the milk himself. Neil went to bed, and I put myself to bed in another room, skin to skin with my newborn and continued to offer the breast every hour of the night - but we made no progress. I held a soother in his mouth to see if he could suck on it - I offered my finger to see what was happening, but his little tongue would just thrust it out. By the wee hours of the morning, I was almost delirious with exhaustion... I hadn't slept in days - with prelabour and then labour and the new tiny baby - and I couldn't figure out why something so hard was suddenly a hundred times harder than it should be.
By 8 am I was genuinely worried. My baby hadn't eaten anything at all in at least 12 hours and I wasn't sure how much he had taken in prior to that - I was sure he hadn't had much in the past 24 hours - as his latch had gotten progressively worse the previous day. I told Neil I was going to have to call the midwife, and as I said this, our doorbell rang - and it was the midwife stopping in!!  I was so relieved to see her - and we immediately set about seeing what we could do about his latch.
She showed me how to put my finger on the roof of his mouth, wait for him to attempt to suck and then turn my finger and press down on his tongue to encourage him to "cup" rather than thrust. My midwife found it very odd that elmer wouldn't even suck a finger that was in his mouth. He would just sit gape mouthed with a finger pressing his tongue. Finally, she encouraged me to "bolus feed" him. I would express tiny precious drops of colostrum into a cup and use a spoon to encourage him to try to "lap" with his tongue. It seemed like he *could* do this - but not well - and very reluctantly. It would take forever for me to get the 2 teaspoons expressed and then slowly get him to take them in, and then try to breastfeed and then start again. This lasted until late afternoon when I finally got him to (painfully) latch on again.
When he would latch, I would do all I could to correct the latch that he had, pulling out his bottom jaw and fixing his upper lip (which had a very obvious tie - but was maneuverable). He would swallow for the initial let down, but then it was like he didn't know what to do - and he would let go - and cry for hunger. So, I would give him the other side and the same thing would happen.
My milk came in with a BANG like it always does - and through the engorgement, I expressed into the bath to try to stay soft enough to be able to feed him (if I would have known what would happen, I would have saved this milk for what came next!!)
Elmer had weighed 8 pounds at birth, by 4 days, he was 7 pounds 4 ounces... by 6 days, he was down another ounce... but it was such a small loss that the midwives felt he must be ready to turn around and we were confident that day 8 would see a gain. I nursed like crazy, doing hand compressions I had watched on a Dr. Newman youtube video. I scoured the internet when I was up all night, trying to find suggestions for babies with "weak suck", "how to fix baby's latch", etc... We nursed every hour of the day... but I didn't feel like we were having much success as his diapers were hardly wet and his poops were frothy with little substance.
Day 8 came and the midwife at first said, "no, there's no gain..." but then she remeasured and said, "Oh, yes there is - he has gained 100 grams!"
I was ecstatic. It had been so much work, but what we were doing must be working! It was worth it, I concluded and steeled myself for some sleepless nights and difficult long days of nursing to see a return to birth weight by the time we would weigh him at 2 weeks (most babies are back at birth weight between 10-14 days after birth).
Over the next 5 days though, I thought my little one looked gaunt. I hoped it was that he was growing, stretching... but I started to worry. His little face looked so thin, and as he was 22 inches at birth - such a long boy - his little legs looked just skeletal. By the time I brought him in a day before 2 weeks, I wasn't very confident that he had gained very well... but I was still shocked when they put him on the scale and he weighed 6 pounds 14 ounces. When I saw him naked, it was even more pitiful. He had good colour, and didn't have a sunken fontanel, but he had no flesh at all on his bones. His loss was 14% of his body weight and the midwives were pretty shocked and dismayed along with me. They let me cry in the back room as I rocked him and cuddled him and tried to nurse him as we talked about options. They told me 14% is just not ok - and we can't continue doing what we're doing... I agreed and told them if I had realized that he was still going down, I would have been more proactive - and borrowed the pump my friend had offered.
They said they felt like he should probably be supplemented with formula - & I balked. Two of my friends had offered their breastmilk - and my mama heart wanted him to have human milk. I told them I would pump and supplement with my own milk - but they were concerned that it was a supply problem. They wrote me a prescription for domperidone and told me that however I did it, he needed to be supplemented 40-60 mls after every feed - and he needed feeding every 2 hours around the clock. Another midwife that wasn't there at the time even phoned me at home and told me she wasn't comfortable with *not* using formula at this point - but I pushed for breastmilk and told her if we saw no gain in 2 days, that I would go out and buy formula immediately. I felt like I needed to follow my heart and give this a fair shot first - and so I did.
I dried my tears and got to work. I borrowed the pump from my friend and with my very first attempt, got the 60 mls he required after I had already fed him. He chomped and chewed, but took the bottle with minimal problems. My friends stepped up with the donor milk and so my routine for the next 5 days around the clock was to nurse my tiny one, then pump that side, then nurse the other side, then pump that side - then I would feed him whatever I had pumped (supplementing with donor milk when necessary). This would sometimes take over an hour - as he would need diaper changes in there too - and so I would have an hour break and then start again... around the clock. I was exhausted. I started the domperidone, fenugreek, blessed thistle and a mother's milk tea - but I couldn't keep up with the supplements - so whenever I couldn't pump anymore, I would give him milk from my mama friends and pray that he would grow.  For 5 days, it was close to 50/50 donor milk to my expressed milk. I nursed him at the beginning of each of these feeds - but over the course of those 5 days, my milk increased and I used less and less donor milk. On the sixth day, he was back only on my milk.
We reweighed him after 2 days and he had gained 6 ounces. We were thrilled with this gain, and scheduled a reweigh for 3 days later. At this weigh in, he had gained another 6 ounces - putting him only 6 ounces from birth weight. I was so happy he was gaining - and his full diapers were soothing my mama heart - but deep down, I wondered what was the root of the problem? Why couldn't my baby eat? My number one goal had to be to get Elmer eating and gaining... but not far behind, I had another set of goals. I was going to get Elmer off donor milk, then I was going to figure out how to get him to get milk from me, not a bottle, and then I was going to get my body off of the domperidone, fenugreek and blessed thistle.
My midwives told me that whatever was going on with Elmer was beyond their scope and they referred me to a breastfeeding clinic here in the south of Calgary. One suggested that my age and number of babies maybe played a part in our problems (even though I knew this wasn't true... it rubbed raw and hurt my already hurting heart)  - they had theories and suspicions, but couldn't nail what it was.
Finally on July 3rd, I went to the lactation clinic. Elmer was 2 weeks 6 days. I told Neil on the way, "if they try to 'fix my latch' I will scream."
"Why are you even going then?" he asked.
"I want help - but I want real help - I want them to figure out what's wrong..."
Early on, a good friend had suggested that Elmer sounded like he had a posterior tongue tie. She had a friend go through the experience of a posterior tongue tie and thought there sounded like there were similarities. My midwives told me it was a possibility but that it wasn't something they were trained to deal with - and that i'd need to ask at the breastfeeding clinic. So, I hoped that there would be an answer - but it didn't seem likely to my midwives since they had already clipped his frenulum at birth and they said his lip tie didn't usually impact breastfeeding.
I got to the clinic and filled out my paper work and they weighed Elmer. I started to get teary when we found he was 8 pounds even - finally at his birth weight! He had amazingly gained 18 ounces over only 1 week! 
The nurse came in and after talking for only 2 minutes with her, I started to get excited. She started explaining to me the symptoms of a posterior tongue tie - how you can't see it, but you feel it. How it's different from a frenulum clip - but can have an enormous impact on the ability to breastfeed. She felt in his mouth and showed me how his tongue wasn't working properly - she pointed out that his palate was deep and narrow - a sign that his tongue hadn't ever been able to move freely even in the womb. She told me that a lip tie is a good indicator of a baby who likely has a posterior tie too. Everything that she said fit - she said with a posterior tongue tie - the mom is feeding the baby, but the baby is never feeding himself. It's too hard - so mom needs pumping, meds and constant feeds to help baby gain - but if baby could move his tongue, he could feed himself and it would be (almost) effortless.
She told me she was going to go get the doctor and see if she confirmed her suspicions.
She swung the door shut behind her and I picked up my baby.
I nuzzled my face right into his neck.
And I started to sob.
It was something real - it wasn't some horrible nightmare where suddenly my body didn't know how to do this... and it was something they could fix... and we could work on... and it would get better... and it was good that I didn't give up - and the nurse told me I was amazing, that she couldn't believe how well we had persevered... and the encouragement was like balm to my hurting, exhausted mama heart - and I couldn't stop the tears as I looked at my tiny son who I know had suffered. I knew that getting this release would hurt him, and I ached to know that he had to suffer more before we could start to get better, but I was so grateful that we had a path to start on...
The nurse returned before I could compose myself with the doctor - and they were both the picture of compassion as they tenderly wrapped my son in a blanket and fixed his tiny mouth. I nursed him right away as soon as they were done - and I could feel the difference as he inexpertly tried to figure out how to move his mouth and tongue.
One day later, he's still a very disorganized nurser. We have been given some exercises to do with him to try to get him to start using his tongue properly. They said it might take some time to relearn how to suck and how to effectively nurse - but I feel full of hope that we're on the road to recovery now.
And - that - is my extremely long story... and believe it or not, this is abbreviated to take out most of my *feelings*.