I've had a letter from my doctor, written before she'd have received my letter. Written in fact on the same day of my appointment. It would appear she agrees with the counsellor, judging by this line:
"Obviously our counsellors are unable to see you beneficially while you have your baby with you..."
Hmm, I'm not sure how it's obvious?
This whole experience has left me drained, with a sick feeling in my guts that I can't shake.I actually feel worse now than when I first went to see my doctor.
I'm not sure what to do now, I can't face going back to that surgery, after only just starting to feel like I could again.
I know I couldn't face another counselling session with anyone else.
I think maybe I just need to keep Florence safe inside my heart and be much more careful with her in future.
Woody thinks I may still get an apology from my doctor, I'm not holding my breath.
EDIT
It would seem Woody's optimism of an apology was not so foolish. I've received another letter this morning, restoring some lost faith in my gp, though none whatsoever in the counselling on offer.
Apparently the counsellor's supervisor has advised that "...because of the nature of the counselling, a baby being present...wasn't appropriate."
"Obviously our counsellors are unable to see you beneficially while you have your baby with you..."
Hmm, I'm not sure how it's obvious?
This whole experience has left me drained, with a sick feeling in my guts that I can't shake.I actually feel worse now than when I first went to see my doctor.
I'm not sure what to do now, I can't face going back to that surgery, after only just starting to feel like I could again.
I know I couldn't face another counselling session with anyone else.
I think maybe I just need to keep Florence safe inside my heart and be much more careful with her in future.
Woody thinks I may still get an apology from my doctor, I'm not holding my breath.
EDIT
It would seem Woody's optimism of an apology was not so foolish. I've received another letter this morning, restoring some lost faith in my gp, though none whatsoever in the counselling on offer.
Apparently the counsellor's supervisor has advised that "...because of the nature of the counselling, a baby being present...wasn't appropriate."
Maybe sharing this letter here is not my wisest decision yet, frankly I'm so angry and upset right now, I don't care.
It's been a shitty day.
A letter to my gp:
Dear Dr T
I would like to thank you for your understanding when I came to the surgery a few weeks ago to discuss how difficult I was finding life after the sudden death of my daughter Florence in July 2009.
I'm sure you appreciate just how difficult it was for me to admit I was having problems coping emotionally.
I was relieved when you suggested counselling, and very much hoped being able to talk to someone outside of my family and close friends would be beneficial.
I remember at that appointment telling you I would only be able to attend daytime appointments if my youngest son (8 months old) would be welcome too. I honestly did not expect it to be a problem. He is still a babe in arms, safe in my sling,and feeding or sleeping. I am rarely without him, and after losing my daughter, I find even the thought of leaving him with anyone other than my husband, far too stressful.
My husband was able to take some time off work last week, and so for my first counselling session I was able to leave Ernest with him. When I explained to the counsellor that I would be bringing Ernest to future appointments, she did say it might be an issue, since the appointments were “about you”, but firmly believing that babies under one should be with their mothers as much as possible, I assured her it would not be a problem for me to have Ernest present.
I simply do not have anyone who could take care of Ernest anyway. My family lives in Birmingham, my mother in law in Wales, and my father in law is currently recovering from a hip replacement. The only friend available during the day who could take care of him, (because he knows her well.) lives a 20 minute car journey away and is currently taking pain medication which means she can't drive.
Today I came along to my second appointment, with Ernest happily snug in my sling. I was nervous, I hadn't particularly found the first session helpful, and had some small misgivings about the counsellor I was trying to not focus on.
After taking me upstairs to the counselling room, the counsellor began to explain to me that she couldn't see me with Ernest present, as it was “inadvisable”, and “against surgery rules”. (something I'm frankly baffled by, since over the years I've had several of my children present, as babies for various procedures including a cervical smear.)
I was confused, and I think my first reaction was to say that in that case I couldn't come. My perception was that the counsellor was quite confrontational. I'm not sure what reaction she expected from me, but I was feeling particularly vulnerable.
She suggested I go back on the waiting list for an evening appointment, but first asked me if I even wanted to continue with counselling.
I left the surgery in a hurry, with my head spinning, and trying very hard not to cry.
The counsellor said she had decided to wait to tell me she couldn't see me with Ernest present, rather than telephone me, which I find a curious choice, since it would've been far easier for me not to have to come to the surgery to hear her decision.
As I explained to you at my appointment, Ernest has had some feeding difficulties, and I am exclusively pumping breast milk for him. To accommodate a 12 o'clock appointment, I had to re arrange my pumping schedule, make sure Ernest was fed, and then walk for 20 minutes to get to the surgery. Incidentally I had that same 20 minute walk home, all the time trying not to sob in the street.
I'm left now with a feeling of deep disappointment, and a mistrust of counselling. I'm sorry I confided some of my story in this particular counsellor at my first session.
I'm proud of my daughter Florence, and will do whatever I can to protect her memory, and the tiny bit I have of her.
For this reason I'm now sorry I came to you for help, and I would like to cancel the appointment I had with you to follow up.
It's been a shitty day.
A letter to my gp:
Dear Dr T
I would like to thank you for your understanding when I came to the surgery a few weeks ago to discuss how difficult I was finding life after the sudden death of my daughter Florence in July 2009.
I'm sure you appreciate just how difficult it was for me to admit I was having problems coping emotionally.
I was relieved when you suggested counselling, and very much hoped being able to talk to someone outside of my family and close friends would be beneficial.
I remember at that appointment telling you I would only be able to attend daytime appointments if my youngest son (8 months old) would be welcome too. I honestly did not expect it to be a problem. He is still a babe in arms, safe in my sling,and feeding or sleeping. I am rarely without him, and after losing my daughter, I find even the thought of leaving him with anyone other than my husband, far too stressful.
My husband was able to take some time off work last week, and so for my first counselling session I was able to leave Ernest with him. When I explained to the counsellor that I would be bringing Ernest to future appointments, she did say it might be an issue, since the appointments were “about you”, but firmly believing that babies under one should be with their mothers as much as possible, I assured her it would not be a problem for me to have Ernest present.
I simply do not have anyone who could take care of Ernest anyway. My family lives in Birmingham, my mother in law in Wales, and my father in law is currently recovering from a hip replacement. The only friend available during the day who could take care of him, (because he knows her well.) lives a 20 minute car journey away and is currently taking pain medication which means she can't drive.
Today I came along to my second appointment, with Ernest happily snug in my sling. I was nervous, I hadn't particularly found the first session helpful, and had some small misgivings about the counsellor I was trying to not focus on.
After taking me upstairs to the counselling room, the counsellor began to explain to me that she couldn't see me with Ernest present, as it was “inadvisable”, and “against surgery rules”. (something I'm frankly baffled by, since over the years I've had several of my children present, as babies for various procedures including a cervical smear.)
I was confused, and I think my first reaction was to say that in that case I couldn't come. My perception was that the counsellor was quite confrontational. I'm not sure what reaction she expected from me, but I was feeling particularly vulnerable.
She suggested I go back on the waiting list for an evening appointment, but first asked me if I even wanted to continue with counselling.
I left the surgery in a hurry, with my head spinning, and trying very hard not to cry.
The counsellor said she had decided to wait to tell me she couldn't see me with Ernest present, rather than telephone me, which I find a curious choice, since it would've been far easier for me not to have to come to the surgery to hear her decision.
As I explained to you at my appointment, Ernest has had some feeding difficulties, and I am exclusively pumping breast milk for him. To accommodate a 12 o'clock appointment, I had to re arrange my pumping schedule, make sure Ernest was fed, and then walk for 20 minutes to get to the surgery. Incidentally I had that same 20 minute walk home, all the time trying not to sob in the street.
I'm left now with a feeling of deep disappointment, and a mistrust of counselling. I'm sorry I confided some of my story in this particular counsellor at my first session.
I'm proud of my daughter Florence, and will do whatever I can to protect her memory, and the tiny bit I have of her.
For this reason I'm now sorry I came to you for help, and I would like to cancel the appointment I had with you to follow up.
Take ten Ikea towels, (Nackten, 19p each), Two fat quarters of your fave fabrics, plus a swatch of co ordinating fabric. (I've used my Blue Dahlia fabrics.)
Cut each fat quarter into five equal strips to fit the short edge of each towel. Press under 5mm all the way around and stich to your towel using any stitch you fancy. Use the scraps left over, (and the swatch of co ordinating fabric) to make hanging loops, and decorative labels.
Quick, cheap, and now I have pretty kitchen towels all ready for the kitchen we ordered today. (so exciting!)
There is a little meadow on my route to school, and it's such a magical little place at this time of year. First filled with snowdrops, then crocus....
And then yellow daffodils.
These photos were taken yesterday for Merry, and for Freddie. x
Just a note to warn you, that yes I am about to blather on yet again about not being able to breastfeed Ernest if you are sick of hearing about it I wont be offended if you hit delete, hey I wont even know. I realise I'm something of a stuck record, but this is my blog and I can blather on endlessly if I want to so there!
Ernest was eight months old yesterday,he crawls commando style all around the floor, and today bashed two cups together for the first time. He's growing and doing, and just gorgeous.
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 month it's featured, and it's quite a relief to get the story out there.
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.
****
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?
****
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.
***
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.
insert bold tags insert italic tags
insert link
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.
Ernest was eight months old yesterday,he crawls commando style all around the floor, and today bashed two cups together for the first time. He's growing and doing, and just gorgeous.
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 month it's featured, and it's quite a relief to get the story out there.
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.
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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.
I remember the day this photo was taken, it was a warm summers day in 1973. I'd been shopping with my Mum and my brothers, and I remember being very proud of my lovely smock and shorts.
When we got home from shopping, my Dad had finished his shift as groundsman at the dog track we lived on, and was snoozing on our terribly 70's white plastic sofa with the orange cushions.
Mum had borrowed a camera from her brother and we dragged our poor sleepy Dad outside to the yard to take them. He hated having his photo taken, and sadly there are really only a small handfull of photos of him in existence, he was so good at avoiding the camera.
This photo is small, tatty, out of focus, but one of my treasures.
Love you Dad, twenty four years today since you left us. I'll see you in my dreams on the beach showing Florence the waves. x
Today is World Book Day dressing up at the bigger boys school.
I really wasn't in the mood for making complicated costumes, so we improvised with outfits we already had.
Sid is the prince from Sleeping Beauty. I bigged up the cutting down of thorny bushes and kept very quiet about the kissing of princesses, and so he was more than happy to wear his Knights costume we bought in Scotland last Summer.
Angus is a pirate from Treasure Island, with the help of some old pj trousers, stripey socks,a fat quarter of stripey cotton, Mummy's belt and some cardboard and aluminium foil. (This is his pirate face)
Oh, and in case anyone is wondering, thanks to to some gentle butt kicking from various people I kept my appointment with my doctor this morning. She was really quite lovely, and is organising some counselling for me. Of course there is a waiting list, but I do have (at least for mow) a small sense of relief having just taken the first step of talking to someone.
