A little while ago, my friend encouraged me to write down our breastfeeding (or not!) story, and submit it to the LLL magazine, Breastfeeding Matters.

This is our story up until Ernest was 14 weeks:

Ernest was born 16th July 2010 at 37 weeks. Labour was induced early because a year earlier his sister Florence had died suddenly and unexpectedly shortly after birth, following a robustly healthy pregnancy and very normal home birth.

He nuzzled and licked the breast immediately after birth ,but didn't latch on immediately. I was not concerned however as all of my babies have taken an hour or two before latching on properly. (I have four older children too.)

As expected Ernest latched on a while later and fed constantly as anyone would expect. We struggled a little because he was so much smaller than all my other babies had been at only 7lbs 1oz, and his mouth was so very tiny, trying to latch on to my large nipples clearly wasn't easy for him.

We spent a day up on the ward after he was born and then went home. Bringing home our beautiful living child after the trauma of losing our precious daughter the previous year was something of a shock to both myself and my husband. We were in a highly emotional state, and looking back really just in shock, and so very relieved that Ernest was living that we failed to notice that things were already starting to go down hill.

Ernest developed jaundice, something I'd noticed while still in hospital and mentioned to the paediatrician, but didn't think too much of as my eldest four had also had jaundice which was simply treated with lots of breastfeeds.
By day five though,Ernest was glowing bright bright yellow, and to my horror had also lost 13% of his birth weight. Tests showed his bilirubin levels were extremely high and we were admitted back to the women's unit at our local hospital, the night before the anniversary of our daughter's death.

Ernest was treated with phototherapy and I was encouraged to express my milk after each feed, and that milk was cup fed to Ernest by an extremely patient midwife.

After two very stressful and tearful days in hospital Ernest's bilirubin levels came down to a safe level and he had gained 50g, so we were discharged home.

I was told there was no need to continue expressing my milk, that I clearly had a good supply, (in fact meeting a paediatrician a week later he referred to me as the lady with the good supply) and that feeding seemed fine. At this point it did look to the casual observer that Ernest was feeding well,I had no pain, and after all I'd done this before, I was an experienced breastfeeder.

Just a few days later though and Ernest was more yellow than ever and once again losing weight.(He now weighed only 5lbs 10oz) We were admitted to hospital again. This time to the children's ward. Ernest was extremely sleepy as we were admitted, and there was talk of tube feeding and drips. Once again he was treated with phototherapy ,but when the nurse came to fit his feeding tube he woke up enough to feed, and after observing his feeding, the nurse decided there was no need for the feeding tube.
I began expressing again after each feed, and trying to cup feed, but Ernest didn't seem to be able to lap up the milk, and I was basically pouring it into his mouth.
By morning Ernest's bilirubin levels were down to a safe level , and we were again discharged home.

Once at home , we were visited by our midwife, who weighed Ernest and found he'd lost more weight despite the cup feeds and the constant breastfeeding. His nappies were still green and rarely wet. He was by now only just getting enough calories to keep his organs functioning, and my breasts felt empty and not as I would expect them at only 11 days post partum.

I was starting to realise something was very very wrong.

My midwife sat very close to me and moving some of my breast tissue to one side (I have large breasts), we could both clearly see that Ernest's latch was extremely poor,and he would slip off the breast easily with very little suction at all, and she confirmed what I had been thinking, that she thought Ernest had a tongue tie.

The next day I went to see the hospital lactation consultant who confirmed a posterior tongue tie, and a high bubble palate. She arranged an appointment for Ernest's tongue tie to be snipped the following Monday, day 16, and explained that the high palate would fix itself as Ernest grew.

By now I was pumping every two hours day and night to increase my dwindling milk supply, and bottle feeding Ernest after each breast feed , as he simply couldn't latch to the breast enough to get more than a few drips of milk. I was also having to give small amounts of formula until my milk supply could catch up.

The tongue snipping went well, but our efforts to feed immediately afterwards were sabotaged by the jaundice nurse wanting to complete Ernest's blood tests before her shift ended. By the time I was “allowed” to feed him he was hysterical, and all I wanted to do was go home.

Ernest began to gain weight, and with the support of my local LLL leaders I researched as much as I could about tongue tie, and about increasing my supply.

Two weeks later, after obsessively watching Ernest's attempts to feed at the breast I once again visited the lactation consultant at my local hospital. I was convinced his tongue had either re healed or not been snipped enough, and I was also concerned about how tight his labial frenulum was, and how he seemed unable to open his mouth wide, preferring to pull the nipple (and the bottle teat) into his mouth like he was sucking up spaghetti.

I had by now managed to drop the formula, and increased my supply to meet Ernest's demands plus a little extra. Ernest was gaining weight and catching up fast, but he was refusing the breast,screaming and arching his back whenever I tried. He preferred the faster flow of bottle feeding, and because he refused to latch,we couldn't even try using the SNS I had bought when we first realised he needed supplementing.

The lactation consultant, assured me his tongue was now free, and dismissed my other concerns. She simply suggested I try using nipple shields to wean him from the bottle to the breast.

We had limited success with the nipple shields. Ernest would latch on (very poorly), drink the initial letdown, but seemed unable to actually milk the breast.

During this time we tried everything, finger feeding, biological nursing, bottle feeding next to a naked breast. We had weekend after weekend of nurse ins, and nothing seemed to be working, except the cranial osteopathy, that helped enormously in calming Ernest and in helping his high palate to spread.

Desperate I tried to get an appointment with an out of area lactation consultant, who refused to see me because we were out of area and Ernest was by then 12 weeks old.

All the while, I had fantastic support from friends,family and my local LLL leaders. Fiona, one of those leaders pushed for us to be seen by another out of area lactation consultant, and although she couldn't fit us in for an appointment for some time, she did talk to me over the telephone, and during that conversation mentioned a doctor she had heard of who had helped a mother and baby with similar problems.
After our conversation I googled this doctors name, and fired off an email to him,not expecting to hear anything back,but thinking that it was at least worth a try.

The very next day, the doctor's secretary telephoned me to say he would see us the following afternoon at the Royal Manchester Children's Hospital!
We went to see him, and he immediately diagnosed a tight posterior tongue tie that hadn't been snipped enough, and said Ernest's tight labial frenulum was obviously causing him pain and stopping him breastfeeding. (Ernest could not flange his top lip at all)
He admitted Ernest to the ward immediately for a general anaesthetic and surgery the following morning!

We were allowed home for the night, and after many tears and much agonising and telephone counselling from Souad and Helen, two more of my local LLL leaders, we decided to go ahead with the surgery the next morning.

Ernest was one day off 14 weeks when he had the procedure. He was under general anaesthetic for ten minutes and out of my arms for forty. As soon as he woke up I was astonished at how he could now open his mouth, and how much movement his tongue now had.
We tried to breastfeed immediately,but Ernest was too frantically hungry, as we'd had to starve him for four hours before the surgery. So he had his bottle of EBM, and I could see straight away how much easier he found feeding from a bottle, something he often struggled with too.

Ernest is now 16 weeks old, and unfortunately still refusing the breast. He has a classic case of nipple preference, but I'm still hopeful.

I offer the breast frequently, and usually he just grins at me and licks the nipple until milk drips, and then he catches those...little monkey!

We are doing tongue exercises, and we may try finger feeding again now that he is gaining more control of his tongue.

There are days when I am philosophical about our breastfeeding experience so far, and I'm prepared to pump milk for Ernest for as long as I'm able if he never gets the hang of breastfeeding, but I'm not putting a time limit on this. I have heard stories of babies choosing to latch at around the four/five month mark,and I'm really really hoping that given the opportunity Ernest will be one of those babies.

There are also dark days, when I cry and I ache to feed Ernest, as I did my older children. Breastfeeding is about so much more than milk,and I have to work harder to mother my baby this way.

I know though, that whatever the future holds I have the support of my local LLL group and leaders. They have mothered me when I've needed it, and offered practical help when I've needed that too. I'm very grateful to count them as friends.

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Since I wrote this piece, I think I've come to accept that Ernest will almost certainly never feed from the breast. That hasn't been an easy fact to face, and there have been some very very dark moments along the way.
We still enjoy plenty of skin to skin times, and I never say never,it's not completely unheard of for older babies to latch on.

Some time over Christmas I gave up the daily struggle of trying to latch Ernest to the breast. The mere thought of offering, however nonchalantly I tried to make that offer was enough to set my heart racing, my head spinning, and the tears spring instantly to my eyes. There was only so much rejection I could handle.

I wrote about it a little here, and discovering this post on another blog by a Mama with a similar story was such a relief, it made so much sense. I definitely needed to make my boobs a happy place.

Meanwhile though, pumping has become our way, we pump seven times a day, including the middle of the night. It's second nature now, Ernest stirs first,between 1-3am and while I would've pulled my other children in to my breast , I wake, sit up, pass Ernest to Woody, who feeds him a bottle of EBM, while I plug myself into the pump. By the time I'm done pumping, Ernest has snuggled back to sleep with Woody, I steal him back, and settle back down to sleep with him, until he wakes me again with his snufflings,, around 4-5am, and I sit up to feed him more EBM. It's a far cry from those lovely nights feeding the others, when by now, all I'd need to do is perhaps a bit of nipple guidance, then drift back off to sleep, but it's become our way, maybe one day I'll look back with some little fondness to our way...maybe?


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If you have somehow found this page because you too are having problems with tongue tie, posterior tongue tie, high palate, or lip tie, then here are some of the books and sites I found useful.

Books

I think I re read every breastfeeding book on my book shelves and every other breastfeeding book I could get my hands on in the early days, but the one book I found really helped point me in the right direction regarding a diagnosis, and also helped me to fine tune my understanding of how to increase and maintain my milk supply was "Making More Milk"
This book is easy to read, which is all important in those early sleep deprived and stressed out days, and it makes it a much simpler process to figure out just what might be going on with you and your baby. I owe a lot to this book.

Another book, actually came free with my pump, and at first I simply dismissed it,but actually it was very very helpful. "Exclusively Pumping Breastmilk" by Stephanie Casemore. The author is a pumping mother, and it's an excellent resource for any mothers who may find themselves exclusively pumping. The information I found within the pages of this book were far better than any advice I was given by my local lactation consultant, who told me when Ernest was only a few weeks old that I only need pump four times a day for ten minutes. Had I followed that advice, I highly doubt I'd still be pumping enough milk for Ernest at eight months old.


Websites

What would I have done without Kellymom? I'd spend hours going over and over page after page on this wonderful site. So much information.
A few pages I found helpful:

"Help, My Baby Wont Nurse!" (this page is one I read over and over again)

Pumping and Bottlefeeding (incl storage guidelines.)

Breastfeeding A Baby With Tongue Tie

Then, there is MOBI
I can honestly say that finding this site and the associated yahoo group was a turning point for me. The women who make up the yahoo group are inspiring, working damn hard to give their baby's as much breastmilk as they can, under sometimes very very demanding situations.
The women here pointed me in the direction of Dr Kotlow's website, and the work he does with tongue and lip ties.
It was seeing the articles on his site, and the photos of tongue and lip ties that convinced me I was on the right track with my instincts that something more was going on with Ernest than I was being led to believe. Ernest's lip tie was a class iv according to the photos on this leaflet.

I should say here that another Mama from MOBI has put together a great list of symptoms of PTT (and associated problems like lip tie) here, along with some stories from Mamas and babies that have been affected (including mine and Ernest's), and other useful resources.Well worth checking out.

Finally, I'm adding the link to the doctor who treated Ernest, Patrick Sheehan I'm so grateful to him for seeing us so promptly after I contacted him. I wish we had known about him sooner, and still don't understand why we were not referred to him by our lactation consultant much earlier, and why I had to keep plugging on looking for help, and finally an out of area lactation consultant had to tell me about a doctor that treats patients so close to where I live.
Maybe it wouldn't have made a difference, but I can't help thinking that had Ernest been treated when I suspected a problem, he may well be breastfeeding now. I guess we'll never know.
At the very least Dr Sheehan has enabled Ernest to feed more easily from a bottle, and to feed without pain...heck he couldn't even open his mouth properly until the lip tie was snipped!


And I'm going to leave it there for now,(unless I suddenly remember anything super important to add, which I might.
Please please leave a comment if you've been through a similar experience (or even if you haven't ) and would like to add anything useful, or just say hi, I'd love to hear from you.

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Resources and articles I've come across since writing this post:

The Funny Shaped Woman, Introducing the Maxillary Labial Frenulum
Maddie's Musings, The Kindest Cut
Analytical Armadillo, The Cause Of Your Baby's Reflux/Wind/Colic?

Milk Matters, The Hidden Cause Of Feeding Problems.
Frenectomy Today, Another Tongue Tie and Lip Tie Experience.


NOTE

If you are looking here for the tongue/sucking skills excercises I posted earlier, I have taken them down while I seek permission from the author to publish them here.
Thank you to Hannah who pointed me in the direction of the author, it seems I had the incorrect intial for her and was googling the wrong name!
The author is Catherine W Genna, her website is here her book Supporting Sucking Skills is available on amazon.

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Below are links to all the blog posts related to Ernest's tongue tie and exclusively pumping for him. I'm putting them here all in one place for my own reference and also for anyone interested in how we muddled along exclusively pumping for a little over two years.

Baby Boy is here!
So, stress anyone?
Good Morning
Falling behind
Falling in love
Nervous!
Visiting Florence
No time for tears
Goodbyes
My view
Carrot flowers
Snuggles
Day at the coast
Just chillin'
Exhausted
Just checking in
Note to self
No yoga today
A day in the life
Two posts in one day
Day twnty five
All done?
Still pumping
Being brave
Mummy milk rocks!
Constant companion
Looks like we are done pumping