Although it’s now been months since Harriet’s initial diagnosis of a tongue and lip tie, and then her laser surgery to correct both ties, I really wanted to have it all documented somewhere, just exactly what was involved in having a baby with ties, what happened at what ages and the many different pathways we explored to find out what was wrong (as something was most definitely wrong). Those long, hard, bone-achingly exhausting days (weeks!) The unknown, but knowing, the relief, the questions, the lactation consultants, the osteo, the maternal health nurses and GP’s, the symptoms and the aftercare post-surgery. This could be for nobodies benefit other than my own, an entirely cathartic process, but if this helps another dog tired mum desperately scrolling the internet at 3am with a screaming little one, a devoted mamabear who knows something is just not right with their precious baby…well than that would be pretty bloody awesome. Hold tight, this is a long one…
Harriet’s early days were much the same as her birth – a bit dramatic! In hospital she struggled to attach to feed, despite doing quite well at her first feed after birth. This was pretty much how Eleanor’s first few days of life were with feeding so I thought not much of it, she’d get it eventually. But despite recovering from her birth really well and probably being quite capable of going home after a one night stay in hospital, the midwives agreed we should stay another night to get our feeding established. Harriet was still yet to attach properly. We did a lot of hand expressing of colostrum and syringe feeding into her little mouth. I also did this with Eleanor, so again I didn’t think much of it. The difference was that Eleanor was a big 9lb bubba, super strong, little Harriet was a wee 7lb’s (completely average but still seemed tiny after her big sister!) On our last day in hospital a midwife gave us some nipple shields to try (not recommended before your milk comes in, which mine hadn’t, but I had loads of colustrum so supply didn’t seem to be an issue)…and miraculously, Harriet fed. And was full. I was relieved, so relieved. I could feed my baby, that’s all that mattered, I didn’t care how. We went home and started our journey of using nipple shields to feed.
The shields and I became mortal enemies. Oh God how I hated those shields, to me they symbolised a complete and utter failure on my behalf to be able to feed Harriet, in those early hormone crazy days post-birth they were soul destroying thoughts eating away at your at 1…2…3am. I had fed Eleanor completely carefree and without even a hiccup for 14 months…why couldn’t I do it with Harriet?! Midwives and maternal child health nurses and my GP all told me she would wean off the shields eventually, just keep trying without them and one day she won’t need them. So we tried. We tried and tried and tried. There was no way in hell Harriet could attach without the nipple shields.
And she screamed.
Oh, the screaming. She was such an unsettled baby. All health professionals said she was ‘just a normal newborn’, our GP pointed us in the direction of ‘purple crying’, my MCHN told me I wasn’t feeding her for long enough, I was busy with a toddler, “enjoy your baby”. And still she screamed. And fed. Harriet would feed for hours and hours and hours on end and still scream. She was rarely happy unless she had a nipple in her mouth, awake or asleep…except it wasn’t a nipple it was a plastic nipple shield. I was very worried she was getting so used to the shields that she would never attach to me properly, that my supply would be affected and our breastfeeding would end. This wasn’t an option for me, or Harriet. My MCHN kept assuring me she had other mums successfully feeding with nipple shields until 12-18 months. I hated the shields, loathed them. But at the same time, they were the tool that was enabling me to feed Harriet at all. I hated depending on an object to feed my baby. I was petrified of being not within arms reach of a nipple shield, as Harriet needed to be fed pretty much around the clock…or she screamed. Most nights I paced and rocked and walked and swayed with her screaming and screaming until she passed out from sheer exhaustion and I dared not move her from my chest, so she would sleep for half an hour bursts all through the night like that, me upright on the couch, Harriet nestled into my chest, she was so small.
With her unsettled screaming and not much sleeping, I had advice thrown left right and centre at me, enough to make my head spin. Which I was incredibly grateful for but…I knew it came down to her feeding, the way she was doing it. It wasn’t right. I’ve said many times that had Harriet been my first baby I think our story would have played out very differently, I would have thought that this was how newborn-land was, that this was how hard breastfeeding was meant to be. But, I’d done it before. I knew what it felt like to successfully feed my baby – and Harriet was doing it wrong.
I tried cutting dairy from my diet, for about three days before I decided it wasn’t worth it (and I’d been advised it could take up to six weeks to see any result of a lactose intolerance). I just felt that this wasn’t an intolerance in Harriet, that it wasn’t just general first 12 weeks of crazy newborn-ness. Mama gut instinct is pretty powerful stuff. Eleanor was sent to her grandparents for a few days as I was losing the ability to simply function Mothering her as well. While she was away, Harriet fed for longer…she slept for longer stretches….huh. Perhaps I was just rushing her feeds. Perhaps the MCHN was right. Perhaps she was just far too overstimulated with a toddler in the house. Eleanor returned, we struggled on. Harriet screamed…
People told me to “get a baby swing, my baby who just liked to be held lived in the swing!” We had a swing. Harriet screamed in it. She screamed even being held and held and held and rocked and rocked and fed and fed. Something was wrong with my baby. A few people suggested that perhaps Harriet’s speedy and abrupt birth had something to do with her screaming. I thought there could be something to that, she was always tense and stressed, seemed uptight and only turned her head one way. So I booked an appointment with our local osteopath, which I’d heard do some pretty great things with babies and children. By this point, Harriet was six weeks old. Six weeks of screaming, and big tears from mummy too. Why was it so hard? Eleanor was an ‘easy baby’ yes, but this screaming and tension in Harriet was next level. Surely this wasn’t just ‘normal’ newborn behaviour? People told me it was, that I was just lucky with Eleanor, “welcome to ‘real’ newborn land!” I couldn’t cop that. Something was wrong with my baby.
Our appointment with the osteo wasn’t for another two weeks though. Two more weeks of screaming. And feeding. And feeding. The only way Harriet would sleep was if she was fed and fed and fed, completely normal for a new baby, but this was literally hours and hours of feeding. And not just in the cluster feeding witching hours, I absolutely expected that, and Harriet was particularly unsettled in those hours too, but in the middle of the night I was feeding her for upwards of two hours and she would not sleep. In hindsight, she was hungry.
Our MCHN was not concerned about her weight loss. She was born on the 50th percentile, she steadily kept dropping and dropping weight at every weigh in. “Some babies are just small. Some babies don’t put on much weight. You’re just comparing her to Eleanor.” So on we struggled. Feeding and feeding. Using those damn shields. And screaming. And I cried, big heaving sobbing tears, every day.
We booked in to the breastfeeding support service offered at the hospital where Harriet was born. For so long I soldiered on convinced that I had fed Eleanor without a problem, I could surely do this again, I didn’t need help breastfeeding! Except Harriet needed help, a lot of help. So off we trotted to breastfeeding house. The lactation consultant observed us feeding, she concluded that Harriet did indeed take a long time to feed, that it was probably due to the shields, but our attachment and general feeding technique and my supply was fine. We were sent on our way and told to just keep feeding her, that eventually she would wean off the shields. Just keep trying. I am trying.
I tried several times to give Harriet a bottle as my MCHN had advised the fattier milk in the morning could help settle her of an evening when she was cluster feeding and screaming hungry. She simply would not take a bottle. Similar to how she struggled to attach to my nipple, she would just gum it again and again and struggle and then scream. Then one miraculous night she did attach to a bottle and sucked and sucked for half an hour. She drank 10mls. And screamed. She simply could not suck. She screamed some more.
The much anticipated appointment with the osteopath came, we saw lovely Tania at Warragul Osteopathic Clinic. She had four babies of her own I learned, one who was six months old…and who had a tongue tie. She asked if the lactation consultant I’d seen had checked for tongue ties. No, she hadn’t. My MCHN had, as had our GP, and I assumed at the hospital when she was born they checked, but wasn’t sure. All had dismissed the idea of ties.
Tania took one look at her lip and said definite upper lip tie, with possibility of a posterior tongue tie. She worked her magic hands on Harriet, agreed she was very tense and tight down one side, very compressed through her jaw and neck. She booked me in with a different lactation consultant to confirm the posterior tongue tie. I left the osteopath clinic and cried those big heaving tears again all the way home…and for once in the two months of Harriet’s life they were tears of relief. We were starting to get answers.
I went back to breastfeeding support and saw a different lactation consultant. She confirmed the upper lip tie and suspected a posterior tongue tie, although couldn’t be 100% certain as they are quite difficult to diagnose. She gave us a referral to a dental specialist in Melbourne who performs laser correction for tongue and lip ties, he would be able to confirm the tongue tie and if necessary laser correct both ties. I joined the tongue and lip tie support group on Facebook and connected with other Mothers in similar situations, ours was not an uncommon story. I breathed that sigh of relief again. We were getting closer.
The appointment with Dr Kerstenberg in Coburg, the leading dental specialist in Australia who performs laser surgery on babies who are lip, tongue or cheek tied, was booked…for six weeks time. I was relieved that perhaps we were getting answers, but at eight weeks old I couldn’t fathom another six weeks with Harriet as she was. That, and I was very concerned about my milk supply. I wasn’t sure I could last another six weeks with her poor feeding, and was extremely worried as she wouldn’t take a bottle. We were due to go away on a camping holiday for three weeks, a crazy idea but one we were pushing towards with the thought that ‘surely Harriet will be more settled by then’. I decided that something needed to be done before our trip though in order for it to happen at all. So on a whim I cold-called Dr Phillip Hand’s office in Airport West. He is the secondary preferred provider for laser dental surgery in Melbourne, and I had read great things about him in the ties Facebook support group. I explained our situation to the receptionist, through my big exhausted tears which were becoming all too common, and she said “There’s an appointment available next Tuesday, can you make it then?” I hung up and cried the tears of relief again, I remember it so vividly sitting on our bed, it was raining outside and Harriet was lying next to me in a rare moment of her not crying. Harriet would have her ties lasered by Dr Hand in just ten days time, not six weeks.
But still, I didn’t want to put all my eggs in that basket. I was apprehensive that the laser release of her ties may not improve things. It could all be too good to be true. What if that’s not the issue at all? What if I was putting Harriet through this all for nothing? I figured I had nothing to lose though.
In the following week Harriet miraculously took a bottle of my expressed milk. It was a Pigeon wide necked peristaltic bottle, recommended on the Facebook group which was now my bible. The feeling of feeding her and knowing that she was getting a full tummy, well that feeling was pure joy. That feeling of feeding my baby, no matter what form it took, I truly understood the ‘breast is not always best’ mantra formula mum’s preach. I got it. A fed baby is a healthy baby. I was still adamant that we could continue our breastfeeding journey, but at least now I knew that she could take a bottle. It was a huge weight off my shoulders.
On the day of Harriet’s laser procedure, we arrived at Dr Hand’s surgery with our baby girl…screaming. Always screaming. She screamed and screamed through the consultation with Dr Hand (who was lovely, I think he was well used to screaming babies!) I struggled to feed her as he explained to us what was going to happen. Harriet screamed and wouldn’t feed. She’d had a few instances of flat out breast refusal, something I’d never experienced with Eleanor and it scared the living daylights out of me to be honest. When all else failed, feed her…except when she refused to feed. Then I was at a loss, so Harriet would just scream, scream trying to attach and suck but she couldn’t.
That day in Dr Hand’s office was the lowest of low points, she screamed as usual and then they had to take her to do the laser procedure on her little mouth. I had envisaged her being contented when I had to hand her over, but instead she was already beside herself. I cried big, heaving, sobbing tears as I heard my baby girl next door screaming. I knew she was fine and well looked after, but the fact she was taken from me upset just completely broke me. Matt held me as I sobbed and sobbed. But, Harriet was brought straight back, literally a few minutes gone and I couldn’t visibly see any difference to her at first. I sat and fed her and she attached (with nipple shields, of course)…and it did feel different…looser. Perhaps this was the start of something new.
I had heard miracle success stories of latching perfectly and feeding straight after the laser procedure. A new baby straight away! I didn’t get my hopes up for this (but secretly prayed it would happen). This wasn’t to be our story though. In the next week Harriet continued to scream, continued to struggle to feed, continued to use the nipple shields (which I was sure were affecting my milk supply, or Harriet’s lack of sucking ability to effectively transfer milk was affecting it) and amongst it all we did the stretching exercises on her little lip and tongue to ensure the ties did not re-attach. Harriet honestly didn’t mind the stretches though! I’d heard horror stories of doing the stretches, and was not looking forward to upsetting an already very unsettled baby (isn’t there already enough screaming?!) But she even smiled through most of the stretches!
We packed up and hit the road for our three week long camping and driving holiday, to western Queensland and back no less. I figured Harriet was screaming at home, she may as well scream somewhere else, and at least I would have Matt to look after Eleanor and we’d all be together. We needed time just as a family after a very rough past three months. And Harriet did scream. She would scream herself to sleep in the car, we would stop often every two hours to feed her and it would take at least 45 minutes each time to feed her. And then she’d scream. In the night I would feed and feed and feed her in the camper by the light of a head torch for hours and hours next to a snoring Eleanor until Harriet was asleep. I was exhausted.
A few weeks on the road brought us to our friends on the south coast of NSW, and then one afternoon sitting on my friend Ange’s couch feeding Harriet…she attached without a nipple shield. And fed. And fed well. I had been trying to attach her without the shields since she had the laser correction, I’d offer the breast first without the shield, she couldn’t attach. So we’d start feeding and I’d try and take the shield away, she didn’t like that. So we fed with shields, as that’s the only way she could. Then slowly…very slowly…she started to change. It wasn’t like we went cold turkey without shields. Sometimes she would attach without them (with much gymnastics and concentration on both of our behalves!) but more often than not Harriet still needed the shields. I could see progress though. Happy tears again.
We returned home and I booked Harriet in to be weighed, whilst we were away she had turned 12 weeks old, that magical milestone where she was no longer a screaming newborn…except she still screamed. Harriet weighed in at 4.82kg and had plummeted to the 3rd percentile for weight. I was crushed. She was losing far too much weight, I was beside myself with worry, I needed to get rid of the nipple shields. I knew we could do it, and was still very worried about my milk supply, I knew feeding without the shields would be our saving grace. More concentration, more faith in Harriet that she could do it.
At night Harriet still screamed a lot, still needed feeding for hours and hours and hours, in the night I didn’t even bother to try and feed without shields as it took a lot of concentration on Harriet’s behalf so I didn’t want to wake her too much. One night I gave her a bottle of expressed milk, and she guzzled and guzzled it and fell asleep. I tried hand expressing some milk into her mouth and there was not a drop (I know this is very much not an indication of milk supply but try telling that to a mum in the middle of night with a desperately hungry baby plummeting down the weight charts!) I got Matt to come home the next day with a tin of formula. And I did more crying. Why couldn’t we do it?!
Harriet struggled on with her feeding, sometimes without shields, sometimes with, and then had some more flat out breast refusal where I was seriously worried that perhaps our time was up for breastfeeding at all. Sitting in her room feeding her for hours and hours and hours I literally stared down the tin of formula Matt had bought in case of emergency, taunting me from the top of Harriet’s wardrobe. I remember so vividly just staring at it and staring at it and then at my little girl trying to suck and suck. We sought out an IBCLC (International Board Certified Lactation Consultant) who was recommended on the Facebook ties support group as experienced with dealing with tied babies, especially post-revision. Cass Poynton came to our home to observe how Harriet was feeding. My biggest concern was that, although she had gone shield free often, overall her feeding and unsettledness was not improving. Every other time I’d seen a lactation consultant of course Harriet had fed reasonably well and we had been sent on our way and told to ‘keep trying’. Well, when Cass came Harriet screamed. And screamed. And flat out refused the breast at all. More screaming. More struggling to attach. She was incredibly uptight, distressed and Cass saw first hand just what we were dealing with – thank goodness! I wasn’t going insane, well I was, but: justified. Cass examined Harriet’s lip and tongue ties and was concerned that they may have reattached, or there was a lot of scar tissue there, my biggest fear. We had our follow up appointment with Dr Hand in a few days. He may need to re-laser, and we would start all over again…
Regular osteo was critical post-laser revision, I knew this, but we’d been away for three weeks (with little results!) so I hadn’t had a chance to re-visit the osteo. Since first seeing Tania at Warragul Ostepathy, we had then been seeing Jess Nichols, who is particularly specialised in treating wee babes. Jess is excellent. I can’t even begin to express just how excellent. She gets it. She welcomed my frazzled self with the crazy toddler and screaming baby into her rooms warmly and treated Harriet while she screamed, and sometime didn’t scream! Jess with the magic hands. So we went for our first session post-laser, on the same day as our follow up appointment with Dr Hand in Melbourne. Jess worked her magic hands again. Harriet didn’t even stir. She was relaxed and calm and smiled at Jess as she worked on her compressed neck and jaw, from months of struggling to feed and suck efficiently. We left the osteo with a little bit of hope…
At Dr Hand’s surgery I expressed my concerns that Harriet’s ties may have reattached…but to my absolute relief they hadn’t! No further laser needed. Dr Hand confirmed that her tongue and lip were loose and in full function, it was simply a matter of her re-learning how to suck now. More osteo, more work with a lactation consultant if we thought we needed it, but from a physiological point of view, Harriet should be able to feed better now. She had her ties lasered quite ‘late’ (at 10 weeks old), often the rule of thumb can be the same amount of time post-revision to have the ability to feed well. We were only five weeks post-revision. Deep breaths, but hope!
And then…after that osteo session with Jess on that same day, Harriet was a different baby. Truly. She was relaxed and floppy and loose and pretty much from that day forward fed solely without shields. I do believe it was a combination of the osteo and the confidence I found just from knowing that Harriet’s ties were corrected, she could do it, we just had to actually do it. And we did.
Feeding got easier and easier without shields. Man was I glad to kick those shields to the curb! Good riddance shields! Harriet fed and fed…but not like she used to. She fed more efficiently and got full. I could almost see day by day her face filling out, her legs chubbing up, she was growing. By this stage Harriet was about four and a half months old. We continued kicking goals feeding, and growing, and my milk supply grew as she fed. We never opened that tin of formula and I recently donated it to Olivia’s Place for another mum in need. That felt very, very good!
At Harriet’s six month MCHN check up she was weighed and I crossed all fingers and toes that we had made progress…I knew that we had, but I really wanted to see a massive improvement in her weight, given where we had come from and the worry I’d had when she had plummeted to the 3rd percentile.
She weighed in at 7.47kg – on the 57th percentile! I’ve never been so proud. We did it. We were doing it. She was doing it. We basically never looked back, Harriet fed easily and hungrily from then on. The corner had been turned – and whoosh she was off!
Looking back I can see clearly now how our path could have diverged, our story could have gone a multitude of different ways. I could have topped her up with formula, my milk supply would have been affected. I could have not had her ties laser corrected, I could have waited and persevered and wondered ‘what if it gets better’. Some people wonder whether the ‘correction’ of ties really does the ‘fixing’ or whether it is simply the baby’s growth and development that eventually changes things. In some cases, maybe. In our case, no – having Harriet’s ties corrected changed my baby. Without doubt. Even though it was not immediate and I didn’t miraculously have a new baby after walking away from Dr Hand’s surgery…eventually, I did. Patience. Determination. Optimism. Perseverance. More patience. And hope.
And Jess’s magic hands. More than anything, having a competent and supportive osteopath working alongside us with Harriet absolutely, hands down, 100% changed my baby from a screaming mess, plummeting down the weight charts, to the happy blooming baby she is today.
Tongue and lip ties are surrounded in lots of publicity, some good and some bad, at the moment – a lot are saying it is such a ‘fad’ thing to diagnose babies with, and I do tend to agree a bit, there is often an over diagnosis of ties, or people jump to that conclusion if they have a very unsettled, refluxy, colicy baby: must have a tie. But a Mother looking for answers often wants just that: an answer. A solution to her problem. The key I think is to be informed, get a few opinions, ask questions, do research. At first when I dipped my toe into tongue ties and what it all meant I was like “yes! This is it! That’s what’s ‘wrong’ with Harriet!” Thankfully I stopped, took a step back and reassessed, and looked down a few other avenues, before proceeding. I’d urge everyone on the same path as us to do the same. Sometimes there is another avenue to explore first.
Ultimately, my tongue tied baby is now my big (chubby!) eight month bouncing baby girl. This week she weighed in at her eight month MCHN check up as just over 9kg, on the 84th percentile. If you had told me that would be the case in those first four months of her life I would not have believed you.
She is a different baby. She is happy. So happy. Her smiles make the world smile, I dare you to not smile when Harriet smiles at you. She sleeps soundly for a few hours each morning and afternoon, still waking in the night once to feed, but my gosh I treasure those night time feeds. I am actually really dreading when she doesn’t feed overnight. In those long, long, long hours overnight feeding and feeding and feeding her, or trying to feed her, as a wee babe, with her screaming through those nipple shields, I vowed that I wouldn’t care how often she woke to feed, just as long as I could feed her properly would make me complete and so flipping relieved.
And now she feeds. Happily, hungrily and cheekily these days as she’s so distracted by her big wide world. She is a determined little thing and her rough start to the world will shape it to be her own, of that I’m sure. Harriet is my little girl with the fire in her belly.
What a blessing it is to feed my babies, after the struggles Harriet and I have gone through I truly do feel that blessing so much more. I am actually glad to have gone through the hardship we did, just to come out the other side all the more grateful and empowered in my own convictions as a Mother. We really do know best.
The Facebook Tongue Tie Babies Support Group can be found here. A wealth of knowledge and other Mothers who have shared similar experiences.
Warragul Osteopathy Clinic (and specifically Jess Nichols) I cannot recommend highly enough. Amazing, amazing, amazing.
Dr Phillip Hand is located in Airport West and is available for consultation with a referral from a lactation consultant, GP or pediatrician.