Our breastfeeding journey with posterior tongue-tie

I think the big reason why I didn’t/haven’t resorted to formula or exclusive bottle-feeding through this whole thing with Z’s feeding is simply because we did not treat it as a viable option. It wasn’t, “either/or” with breastfeeding vs. formula, because that implies the two choices are equal… and they aren’t.
Starting this journey I’ve had two successful breastfeeding experiences (though each of those experiences were littered with problems). I have one fully functional breast, and one breast that has extensive nerve and tissue damage – and that equals two breasts capable of producing milk, and one that is capable of producing at or above normal rate. That’s more than enough to feed one baby, and if for some reason it isn’t I can use the help of galactagogues or other methods to increase my supply (fenugreek, domperidone, pumping, brewer’s yeast, blessed thistle, et al).

My personal order of feeding options goes like this:

    1. Breastfeeding exclusively
    2. Breastfeeding with the help of [ galactagogues ]
    3. Breastfeeding and [ SNS ] / Lact-Aid supplementation ] (with my own milk)
    4. Breastfeeding and [ finger ], [ cup ] or [ SoftFeeder ] supplementation (with my own milk)
    5. Breastfeeding and any/all of the aforementioned supplementation methods with donor milk
    6. If absolutely zero at-the-breast feeding is possible, bottle feeding exclusively with my milk.
    7. Bottle feeding with my milk and donor milk
    8. If absolutely no breastmilk production is possible, bottle feeding exclusively with donor milk.
    9. Bottle feeding with donor milk and formula
    10. And lastly, bottle feeding exclusively with formula.

Remember, this is just my list. My personal list. Yours might look different, and it probably does because my situation and my abilities are different from yours, or some woman I met in a park, or the lady who sits next to me at my LLL meeting. This is just the list that I work from when I start nursing my new baby. And when/if I run into serious problems that threaten to permanently alter or end my breastfeeding relationship, I would want to completely exhaust all of these options before resorting to exclusive formula feeding. If some of them are not possible (ie. no access to donor milk through a bank, friends, or screened mothers that were willing to donate) I would have to skip over those parts, but I’d still be checking into them.

I have a number of privileges and advantages that have given me the ability to have that list, and adhere to it. Things like:

    1. Experience successfully breastfeeding two other children until just before their third birthdays.
    2. Experience successfully breastfeeding through numerous challenges and difficulties.
    3. Support from my friends, family and access to breastfeeding information and support through the La Leche League, IBCLCs, lactation consultants, doulas and other trained breastfeeding educators.
    4. The ability to access a computer, and the internet, and knowledge of how to search for the things I need (breastfeeding support communities, problem solving information, etc).
    5. Free, prompt and accurate healthcare from lactation specialists when I need it… and the education to tell me the difference between a trained professional and one who attended a one hour course sponsored by Nestle. In Canada, visiting doctors and specialists is free, which is a HUGE advantage over places like the USA, where a low-income family without health insurance may not have the option of visiting an IBCLC even if they needed to.
    6. I said it before but it’s worth mentioning twice: support, support, support. Especially from my partner. I have a partner who is there for me, who is educated about breastfeeding and its benefits, and is willing to do whatever he can to improve and encourage my nursing success including staying home from work for 10-14 days after the baby’s birth, taking care of our older children as well as me.
    7. A strong personal desire to make it through, and the motivation to continue working toward a successful nursing relationship. It’s not a bad thing if you don’t have this – not everyone values breastfeeding the way I do – but it can certainly help you succeed.

That list puts me in a pretty privileged position over many other women who may have attempted breastfeeding and ended up switching to bottles, regardless of their desire to continue nursing. Access to education is a big one, maybe even the biggest one next to spousal support. Think of how vicious the insidious the formula industry has become, and how their “information” seeps into everything from the posters in your doctor’s office to the first (and often only) information you see about human lactation after your baby’s birth. Think of how even WIC and hospitals were advertising for the ‘lactation help line’ that was staffed by Nestle workers that gave half-assed information mostly designed to sabotage your breastfeeding relationship. If you’re a breastfeeding mother, think of where you might be with that if 100% of the information you’d received had come from a source like that. Would you still be nursing? Would you have made it through that nursing strike? Or those bouts of mastitis? Or colic, when your mom was standing next to you saying, “It’s because you don’t make any milk… just look at your breasts! The same thing happened to me. So I fed you formula and you’re just fine”?
My situation is unique, and these are my thoughts and my own standards for myself: they absolutely do not reflect my beliefs or expectations of every other mother/baby pair out there. So keep that in mind when I speak in absolutes about my struggle, or say that I feel formula feeding isn’t an option (at this point in time) for us… a lot of that is due to the privileges I have that others may not, and I am aware of that now, though I haven’t always been.

So anyway. With that giant disclaimer out of the way… I received a few more reports in the mail regarding Zephyra’s appointments and tests, so I wanted to summarize all the information we’ve had thus far, and go over where Z stands on her feeding issues right now.

It’s funny, both the paediatrician and my LLL Leader told me I should be writing down my experience breastfeeding Zephyra “on the internet” so that other moms may read it. At the last LLL meeting I attended about six medical students were present, and my leader immediately made me tell my story so they could hear it and write down the information in case they ever ran into it with their future clients. I didn’t mind, though I’m not usually one for pubic speaking, because I do want to make sure these women know that this shit exists and that it is a huge roadblock to successful nursing.
Anyway. Right now everything I’ve written about it is all filed under my [ breastfeeding ] tag, but I think I’m going to go back and retag all the relevant stuff “posterior tongue tie” and “Velopharyngeal Insufficiency” and “submucosal cleft palate”. While the last one has been ruled out and the middle one is iffy, they’re still things that come up when these symptoms and problems present, which means that other moms searching these terms in conjunction with breastfeeding or general feeding difficulties may still come across this blog and these entries and find something useful. At least, I hope so. I’ve read two or three stories that other moms blogged about that and, while kind of depressing, they were also incredibly helpful for me to know that I wasn’t alone or insane. Their babies didn’t die of starvation or end up on tubes for the rest of their lives (though, sometimes they were tubed for a little bit) and that’s extremely promising for me. On top of that, many of those moms worked damn hard – as hard, or harder than I’m working – and managed to keep their babies hydrated and adequately fed so they ran into similar “issues” about some professionals doubting that there was a problem at all since they were ‘making it through’ (as though spending 8 hours a day devoted to feeding a baby that still isn’t sated is normal and totally acceptable).

ANYWAY. This is a rough timeline of events, and I may come back and update this later as we go so I can keep a reference to how things have progressed over time.

 


 
Pregnancy
Was normal, but complicated with severe [ hyperemesis gravidarum ]. I took several pain medications throughout the pregnancy to treat a spinal disease, all were cleared with both my midwife and my pain specialist and I remained under careful observation by both. None of the medications I took for either my disability, or my hyperemesis, have any links with birth defects or other problems in the fetus/neonate; all were cleared for use during pregnancy even at much, much higher doses than I was taking; and they have been used to treat pregnant women for a variety of ailments for decades without issue.
Despite that, we exercised extra caution and baby was scored for NAS (withdrawal) at birth, and throughout her first ten days by trained care providers. As expected, she scored zero. All of this is to assure those who may have doubts and have blamed the medications I was taking for causing her problems: these medications are safe to take, and are not linked to the development of tongue tie. I feel kind of stupid having to say this, it’s embarrassing to think people actually believe that… but I have been asked. More than once. Tongue tie is extremely common and often runs in families. My mother had one clipped at two, and I also have one.

Birth
Was a normal, uncomplicated and drug-free SVD (spontaneous vaginal delivery, which means it was not induced or augmented in any way) which took place at home at just about 42 weeks. She’s my fourth child and my 2nd VBAC.
After birth, Zephyra didn’t immediately latch on and didn’t seem that interested in the breast. When she did latch, she didn’t suckle long enough to pull my breast into her mouth (literally no more than 2 or 3 seconds)… but she was alert and happy, so it was unlikely this was related. She was pretty content to just sit around staring at things and take in the world.
It took about 2-3 hours until she was interested in breastfeeding for the first time, and while something did feel a little off about the way she latched onto my breast, everything seemed to be in order. Her latch appeared to be normal, we could hear her swallow, see her ears wiggling… the only issue I could say I noticed was that she had trouble everting her lips, both top and bottom, and I had to flip them out whenever she latched.

First two weeks
Zephyra nursed around the clock and had no set schedule (she’d nurse 30 minutes, sleep for 10 minutes, nurse five minutes, be awake 15 minutes, nurse for 10 minutes, sleep for an hour, wake up and nurse for 12 minutes… etc), but all of my babies did this and it can be very normal. By itself, that is not a reason to worry as many babies nurse like this without issue.
By the time she was two days old I was aware that her latch was shallow and that she had restricted tongue movement. She clicked loudly while she nursed, and each time she broke suction I could hear her swallowing large gulps of air. click – GULP – click – unlatch to breathe – click – GULP.  She would pull off frequently, every few seconds, to take breaths or cry and then latch back on again to drink. It was as though she couldn’t do both at the same time (breathe and drink), which is odd considering that newborns are designed for that. I showed my friend (who has nursed two of her own) her odd nursing behaviour and she agreed it was weird – and obnoxious. I’ve never seen a baby do that.
It felt like her tongue was lapping at my breast rather than cupping it, and she couldn’t pull breast tissue deep into her mouth and throat like she should be. It felt like she was trying awfully hard, but the suction she built up was extremely poor. She also couldn’t suckle on my finger, or a pacifier (we tried many different types of nipples). Whenever I tried to peek under her bottom lip to see if her tongue was over her gum it would immediately break her latch. Eventually I realized this was because her tongue wasn’t covering her bottom gum; it couldn’t extend that far. Her tongue has a small, but visible crease down the middle and the tip was slightly heart-shaped due to this, although the tip itself seemed to have a normal range of motion she didn’t have the ability to move her whole tongue forward and backward, or side to side, nor could she “cup” with it. Her tongue felt and looked as though it was bunched up, puffy and adhered to the bottom of her mouth. She barely seemed to use it at all when nursing.
By this point my nipples were very sore, especially as she latched on and pulled off. They were frequently chapped, and bled often before I became accustomed to her style of suckling.

Initially she had normal-ish stools (seedy and mustard-coloured), but they quickly turned to green and mucousy all the time. She was very gassy, with lots of burps, lots of spitting up. She spit up multiple times after every feed, between feeds, and even in her sleep. She also spit up pretty large amounts and it was often projectile. She never really seemed sated after a ‘meal’, possibly because she didn’t seem to have any difference between ‘meal’ and ‘snack’ (once again, this can be totally normal nursing behaviour for a brand new baby, when the behavior is not accompanied by multiple symptoms of feeding difficulty) but my milk supply was good. I had very little engorgement and got over it quickly. She was cluster feeding all the time, especially at night. She seemed to do better at night, or when she was really sleepy for some reason. I’m still not sure exactly why.

She had to sleep swaddled, slightly propped and slightly on her side due to constant spitting up/vomiting and choking. When she choked and vomited it often came up through her nose and as a result she always sounded like her nose was rattly and snuffly.

I thought we were doing okay up until she was weighed at two weeks and we found that she’d lost almost two pounds from her birthweight, despite always being well hydrated and nursing constantly (hearing swallows and everything). I immediately started pumping several times a day and was manually expressing milk into her mouth during feedings. We also topped her up once a day through a tube, and tried all sorts of different bottles and nipples when that didn’t work well. She never really seemed to get the hang of the bottles or the finger, but with the manual expression into her mouth (gravity feeding) I didn’t end up needing to depend on those.
This was a lot of work, but it paid off really well and she gained 19oz the next week.


(Zephyra being finger-fed pumped milk with a tube around 10 days old)

3-5 weeks
The above method worked fine for a while, but as she grew past the point of newbornhood where the ‘always nursing’ phase starts to fade… we ran into more problems. She never outgrew that phase, in fact it seemed to get worse, and while she would ‘snack’ nurse all day long she’d only have a few really good meals a day. She wouldn’t nurse outside the home for more than a moment or two, she choked constantly (often to the point of turning colours and vomiting) and even choked in her sleep when there was nothing to choke on. Multiple times I was up in the middle of the night clearing mucous or drool out of her airway. She drooled a lot.
Every single feed since birth had been full of that behaviour: choking, gasping, crying, fussing, pulling off to breathe… etc. Although up to this point we had a pretty good rhythm down and she honestly didn’t seem too bothered by this even though it was very hard work. She never really screamed, she wasn’t colicky, and she slept pretty well.
At about five weeks, right around the time your supply evens out after that crazy leaky newborn phase, my supply completely tanked. Her wet diapers went down to 3 per day and she briefly showed signs of slight dehydration. I had cut back on my pumping, so I upped it again and started taking fenugreek, got my sister in law’s extra domperidone (20mg, 3-4x daily) and immediately saw results. At first it didn’t make any sense why my supply would suddenly drop like that, but it didn’t take long to figure out it was because I wasn’t getting the proper stimulation through her mouth. With her latch so poor (and seemingly unfixable) and her tongue stimulation almost non-existent, my breasts were not getting the amount of stimulation they required to maintain a good supply. I had to supplement that stimulation with galactagogues and pumping. This also helped me develop an oversupply, which helped her stay well fed. She had a lot of trouble extracting milk from my breasts unless it was right there and flowing fast, so by nurturing an oversupply I allowed her to have a lot of milk readily available at every feed, and frequent letdowns during each feed.

Her routine of small snacks with 3 ‘big meals’ that took 1.5 hours maintained, and we seemed to be doing alright even though it was incredibly hard work to keep that up.

During this entire mess we were also trying different bottles out on her for supplement purposes. She couldn’t draw a bottle nipple into her mouth, nor could she suckle on it. We spent about $100 on various bottles, teats, including bottle types that couldn’t be purchased in Canada. As with all the soother types, not a single one worked.

2.5-3 months
Once she hit this stage and got her three month growth spurt, everything went to hell. All of a sudden her caloric needs increased to a point where she simply couldn’t get what she needed out of my breasts. Not because the milk wasn’t there (it was), but because she couldn’t physically get it out. She could get lots of foremilk, but very little fatty milk. Even when she stayed on the breast hours her suck wasn’t strong enough, she’d get tired and impatient, still hungry, and we’d both end up frustrated. She couldn’t take supplements by bottle, finger, or cup no matter how hard we tried and though she was always hydrated her weight gain was starting to drop off her curve. I was starting to get kind of worried. Expressing into her mouth had worked up to this point, but now it’s like her demand was simply too high for manual expression/gravity feeding to meet. I thought we were doing okay, and this was kind of devastating. I was exhausted.

I relayed all this to my LLL Leader, who referred me to a family practice doctor who was also a lapsed IBCLC. I called and made an appointment, and upon hearing who I was referred to she saw me the next morning. I gave the doctor a summary of all our issues up to this point, and my concerns. She listened intently and was very nice to us. Best of all, she believed me and validated my concerns. That above all else was really what I needed then.
The doctor used her finger to feel around Zephyra’s mouth and noted how extremely sensitive her gag reflex was. Nothing could get past her gums without her choking until she vomited. She had me attempt to nurse her, and about five minutes into the session full of chokes, gags, fusses and vomits the doctor asked, “Is this normal for her?” – which was reassuring in a weird way. At least I knew I wasn’t crazy; this really was difficult.

She spent an hour doing various exams and asking questions and came to a few conclusions.
– She has a high ridged palate.
– She has a tight nasal airway.
– She was a very small jaw and slightly receding chin (no physical malformations, this is due to improper suckling in the womb).
– She has extremely limited-to-no mobility in her tongue.
– She appeared to have an ‘air leak’.
The latter means that for one reason or another she cannot properly create suction because there is air leaking through somewhere (hence: breaking the suction she creates, or limiting her ability to suck properly), which is why she can’t use bottles, pacifiers and why she’s having such difficulty breastfeeding. The doctor had two possible causes, either there’s a hole in her palate somewhere that she can’t immediately see or feel (also called submucosal cleft palate), or her muscles don’t come together properly or work in sync velopharyngeal insufficiency. This is on top of the diagnosis of posterior tongue tie, which she showed all the symptoms of.

I was referred to the cleft team, which is a team of six or seven experts that gather together at a health centre for one day and see parents of children with lip, palate, mouth or other swallowing difficulties. The parents and children rotate between each doctor for brief, 20 minute sessions where the children are examined and the professionals each write up a summary and/or diagnostics, order tests or make recommendations. At the end of it all you should have much more information, or at least have ruled things out.
We were also set up for a swallow study, and an immediate visit with a speech pathologist visit so we could get set up with some special needs feeding tools to help keep her out of the hospital.

The family practice/IBCLC wanted to see us again the following morning so she could watch Zephyra attempt to suckle different bottles and see how it goes.
The next day we arrived at her office bright and early with a bottle of expressed breast milk and three or four different bottles and nipples, as well as a selection of pacifiers. Another hour went by with the doctor trying to encourage Zephyra to feed and she noted the same thing I did: she didn’t suck, she just chomped on the nipple and tried to drink the small amount of milk that came out. She couldn’t create suction, and couldn’t pull the teats into her mouth no matter how hard she tried… and it was clear she wanted to try.
At the end of the appointment the doctor told me we were doing amazingly well, and that other babies that she sees with these difficulties are generally in the hospital by two months, exclusively tube fed. It really felt nice to have some recognition for the work we’d put in, even though I knew there was still a chance Zephyra may need an NG tube before this was over. If we couldn’t get supplemental feeds in her soon, she’d have no choice.

3-4 months
We saw the speech pathologist right away, who talked to us about special needs feeding options and had us try out the Haberman feeder (also known as the [ Medela SpecialNeeds Feeder ] ) as well as the [ Mead-Johnson cleft palate nurser ]. She tried to have us introduce both feeders to Zephyra at the office, and both of them she couldn’t get the hang of. She fought, choked, gagged and cried. The speech pathologist told us that since she wasn’t gaining well, if she didn’t catch onto one of these soon we’d have to start an NG tube. She’d still be breastfed, but would require ‘top up feeds’ by tube after each nursing session to ensure she was getting enough calories. It’s extremely frustrating knowing that the milk is there. It’s right. Fucking. There. But for one reason or another she can’t get it.
She sent us home with the bottles (we had two of the mini-Haberman feeders, one normal size, and three of the Mead Johnson nursers) as well as a list of exercises to do with Zephyra’s mouth and jaw to encourage her to use her tongue and mouth properly.

The cleft nurser had a very long nipple and it choked her every time I tried to put it in her mouth, so we quickly abandoned it. The mini-Haberman she was a little bit more wiling to play with, so I worked with that one. Every single day I spent time trying to feed her with it. I would sit her up at an angle and give little tiny squirts into her mouth, running the nipple along her mouth and gums, trying to get her mouth and tongue used to the feel of it, trying to help her learn that it would give her yummy milk. Sometimes she’d get a little bit of milk in, but most of it just ended up all over her. Still… we made up 3-4 small bottles (about 1-2oz) per day and spent almost an hour each time trying to train her onto it. I’d have to time these trials so she wasn’t starving, but also wasn’t totally full either.

The speech pathologist set up an appointment for us to see an ENT (ear, nose and throat doctor) because he was normally one of the people at the cleft team meeting, but he wouldn’t be there that time due to going on vacation, so she wanted us to see him early to ensure he got a peek at her.
Unfortunately, the ENT was absolutely no help at all, and it ended up being a wholly useless appointment. The first thing he said to me was that posterior tongue tie “Didn’t exist” while also noting that her tongue movement was extremely poor. He treated me like I was a huge idiot for even suggesting that other types of tongue tie existed, despite mounting evidence to the contrary and numerous professionals that treat or even specialize in the diagnosis and therapy for type 3 and 4 tie cases. At the same time, he couldn’t tell us why she had no suck, and suggested that perhaps she was doing it on purpose… as though she simply “didn’t want to suck”.
We left his office feeling embarrassed and frustrated.

The cleft team meeting was next, which took place when she was 3.5 months old. That week our hard work with the Haberman feeder paid off and she’d just started to get the hang of it while pulse feeding (pulse feeding means we squeeze the teat to the rhythm of her attempts to suck and swallow, mimicking the flow that she would get out of a breast or bottle if she was able to suck normally), so we had good news to bring with us.
The cleft team meeting day was exhausting. The entire thing took four hours and we were bumped around constantly. I must have repeated the same story to every doctor there, and they all asked the same questions. I felt like I should have just had a script prepared, and if I could do it again I would have prepared one the night before. It would have saved so much time.
Each doctor did much of the same tests (choking her, gagging her, asking to see her feed, etc) and not one told me something I didn’t know. The only good part about that was pretty much ruling out submucousal cleft and getting some good tips on how to help her learn to suckle more effectively. Everything else was just exhausting.

I actually didn’t get to hear their final thoughts until earlier this week when I finally received the team report from the entire cleft group. It’s a big stack of papers, with several pages devoted to the findings from each individual doctor we saw there. The summaries are unintentionally hilarious, as it makes it sound as though they never so much as cross paths let alone come together to make diagnostic decisions.
The statements read like this:
“I have no idea what is wrong, but here’s a huge list of slight physical malformations of her mouth”
“No posterior tie, maybe cleft?”
“No cleft, definitely posterior tie”
“No such thing as posterior tie, query cleft?”
“No cleft or tie. I’m at a loss”
“No such thing as posterior tie, but the tongue’s forward/backward movement seems … restricted for some reason”
“Nice baby. Come back in six months”.

So, you know, that’s helpful.

The speech pathologist was a help, at least, and she not only gave us tools to help Zephyra improve but also believed us. When she admitted she hadn’t heard of posterior tie in her profession she immediately started doing research. She got back to me the following day with scads of information and studies that confirmed every suspicion I had, and added more relevant information. For instance, she found that reflux was connected with posterior tie and that Zephyra showed all the signs of a reflux baby. She had me referred to another paediatrician for the purpose of checking out the reflux idea, because even though she didn’t seem too bothered by it (if that was indeed something she had) it’s still better to do a medication trial as we want her food to stay IN HER STOMACH as much as possible for obvious reasons.

She did a home visit the following week and brought with her a number of little toys, toothbrushes and oral stimulators to help us work on Zephyra’s mouth. She explained to us that due to her tongue tie and inability to bring breast tissue back into her mouth, she’d never dulled her gag reflex, making it oversensitive and problematic. It has now grown to a point where it’s preventing normal oral health and development due to how protective she has become of her airway: she chomps down on anything that’s put anywhere near her mouth to prevent it from going back any further.
We were instructed to do two main exercises with her; the first using an index finger to push deeply into the centre of her tongue, tapping at it firmly (but gently) to help her learn to curl the sides of her tongue around it. The second was the same motion, but drawn forward toward the tip of her tongue to help her learn to move it forward and back. We were also to use the different textures, shapes and sizes of various toys to rub around her mouth and tongue, encouraging her to bite down and chew on them so she learns how different things feel all around her mouth and it becomes easier for her to use it without gagging and choking so easily.
On top of this, we were to continue our supplemental feedings and try to use the pigeon nipple (a tiny nubbin of a nipple, made by Gerber) on a “normal” bottle every so often to encourage her to get used to that feel in her mouth. The idea was that as she progresses with the suck training and OT, she’ll eventually be able to wean off the special needs feeder onto the tiny Gerber bottles and teats.

She showed improvement very quickly, and within two weeks we started seeing her curl her tongue, and begin to stick it out a little more. This didn’t translate to learning to suck at all, but it’s a really big deal in terms of the prognosis of this issue.


Habermann feeder, 3.5 months.

The swallow study took place shortly after. We were taken up to the large hospital to the medical imaging department and instructed to bring a small feeder of breast milk. When I got there, they mixed about an ounce of barium liquid into it and warmed it up. I was given a lead apron, plus a lead collar to cover my thyroid gland and baby was given a little lead g-string to cover her ovaries and uterus. She was strapped in a giant red chair-like thing that looked like the foam carseats they have attached to shopping carts at big box stores, and that was placed in my lap. I was seated in a chair, which was placed on top of a large wooden box and all together we were moved into position between two x-ray cameras. I was to feed her in a very specific way, with her face pointed at a very specific angle, while the cameras took pictures of how she swallowed and moved liquid from the front of her mouth to the back.
The whole thing was over in less than 15 minutes.
Initially the speech pathologist brought me out into the waiting room and told me nothing appeared wrong, which I was dreading hearing because it meant more questions rather than answers. However, when I got home she called me to let me know that after reviewing the footage some more she’d seen more details and realized that everything I’d told her about Zephyra’s feeding showed up on the results. Her tongue was bunched up at the back, wasn’t being used to get fluid out, wasn’t cupping or moving… she was drinking rather than nursing: waiting until her mouth filled with fluid and then swallowing.
Her ability to swallow had improved tenfold since we’d begun the suck training and OT, so she was no longer choking and turning blue at every turn (yay!) but she still was far from perfect. At least we were seeing definite progress though.

4-5 Months
By 4 and a half months old she and I got a good flow going with the Habermann, which resulted in her taking 3-4 feeder supplements per day to the tune of 3.5-5oz each time.

She guzzles them down like she’s starving, but rather than a reflection of her hunger levels I think this is more a reflection of her being trained to believe that she gets very little milk that flows easily… so when it comes readily she guzzles it.
This was fantastic news, as it meant we could finally stop worrying about tubes AND she’s being well fed, in fact she’s gained almost two pounds since she finally got the hang of the Haberman and jumped from the 35th/40th percentile to the 75th right away. She’s hitting all her milestones on time and her stools have improved; while they’re still greenish most of the time they’re far less mucousy than they used to be. Because of all this, she also doesn’t need to spend 1-2 exhausting and frustrating hours at the breast several times a day in order to fill her tummy.
However, this is also not so great news as it means that she’s not spending 1-2 exhausting and frustrating hours at the breast several times a day… which translates to less stimulation for my breasts, which translates to a dip in supply unless I’m very careful.
Through a rigorous pumping schedule and domperidone (currently I’m taking 20mg 3-4x daily plus 3500mg of Fenugreek per day), I’m maintaining a good flow and a moderate oversupply – which is suiting us nicely. I put away an average of 12oz of milk per day, and on good days I can get upward of 16-17oz in the freezer. Since she’s taking a maximum of 15oz per day by supplement, that means I’m doing pretty well. I’m using a Medela Pump in Style double electric pump for the times I can sit down and devote the time to emptying both breasts, and I use a manual Medela Symphony for tandem pumping the rest of the time (tandem pumping means I pump one side while Zephyra nurses from the other: it helps stimulate letdown and faster flow, and I get WAY more when I do it this way).

She’s eaten a meal from the Haberman through nothing but her own suckling power (which means no pulse feeding) for the last three days (as of October 24th, 2011) which is TOTALLY FUCKING AMAZING. The Haberman provides a lot of payoff for very little work, so this is not the same as suckling from a normal bottle, but it’s still really great news. We’ve tried to get her to take a ‘regular’ nipple a number of times as well… but it has not worked, she still can’t figure it out.

That said, this afternoon I tried her with the [ Tommee Tippee ] bottle with a cross cut [ “VariFlow” ] teat (which is designed for babies with poor suck) and over the course of 45 minutes, with a lot of effort, she successfully took a small feed from it using nothing but her own suction. That is the first time she’s ever successfully used nothing but her own suction to get milk out of a teat, and that’s incredible. It tired her out and it was tough work – definitely not something we could do every day with her at this point – but she did it.
We ordered a [ ComoTomo ] bottle from Amazon in celebration of this. It looks like a Tommee Tippee and has a similar nipple, but it’s squeezable which means I can pulse feed her while she learns how to take a wide-neck bottle. The SP is set on me weaning her to the tiny nipples as her suck improves, but I’m hesitant to do this as I think it will make her more likely o reject the breast and encourage bad nursing habits. She needs to work her mouth and jaw as much as possible, particularly since due to all these problems she hasn’t had the advantage that other breastfed babies have of months of jaw and mouth stimulation with a proper latch… which puts her at a higher risk for malocclusion and ‘baby bottle mouth’ (as well as the other oral and tooth development problems that often go with bottle feeding due to the patterns of suction and airflow it creates). As she improves with the suck training and OT, I plan on introducing the wide-neck bottles instead. I’m also interested in the Medela’s new [ Calma ] bottle, which may end up being a good training tool for her as she learns to control her suck.

Zephyra was also diagnosed with severe reflux, and was given domperidone which she takes through a syringe. She’s on .5 to 1mg three times per day. She threw up the first few days of doses, but now she seems to be getting used to it. I haven’t seen it make much of a difference so far, but I have noticed she doesn’t spit up nearly as easily as she did before, nor quite as much (she generally averages as much as 1/4cup). Plus, her sour breath has gone away. Reflux affects gut motility, which are both in turn affected by a posterior tongue tie… so it’s all connected.

We’re supposed to see the paediatrician one more time on the 31st, and have another home visit from the speech pathologist next week to check up on her. The team is going to continue to stay up to date on her case and she’s going to have regular appointments to monitor her growth and ensure she keeps improving. As long as she continues at this rate, we’ll be okay, but if she backslides or she has a nursing strike or whatever… we’ll probably end up going straight to NG tube rather than put her through any more misery.

So that’s where we are now with breastfeeding. On a scale from one to ten – ten being a perfect suck and a perfect nursing relationship (or as perfect as can be expected) and one being the worst possible outcome – we’re managing as much as a 6 or 7 when we were previously doing a solid 2 most days. Feeding her is still taking up huge chunks of my day, but at least now it’s going somewhere.

*Update for October 26th
We had the speech pathologist come for another home visit and confirm that her progress is amazing. She also brought over the video of her swallow study and showed me several things about it that confirmed our original reports with the trouble we were having. I’ve put it all together and uploaded it to YouTube in hopes it might help someone else.

*Update for January of 2012
Zephyra has made amazing progress with OT and suck training, and following some incredibly positive follow-up appointments we (the speech pathologist, pediatrician and us) decided to cancel her second swallow study and play the rest of the year by ear. As of age 7.5 months she’s now feeding exclusively at the breast for the first time since birth. I’ve been able to stop taking domperidone, and she’s now capable of stimulating a full breast milk supply and is getting more than adequate food and nourishment (as well as comfort: which is equally important) at the breast. Her improvement has been remarkable and honestly rather unexpected given the problems we had up to this point. It’s been about a month since she’s needed mandatory supplementary feedings, and about 3 weeks since I’ve needed domperidone or compressions to ensure my supply stays high enough for her. I haven’t even used my pump in two weeks! Her tongue usage is incredible by comparison to how it was before, and she’s hitting all her verbal milestones.

At 7 and a half months she’s not interested in solids yet, though they have been offered. She’s content to taste and lick, but has no real need to eat yet and is perfectly sated with breastmilk. 🙂 And I’m happy to continue to feed her exclusively at the breast if that’s what she needs!

She has regular check-ups to ensure her health and weight stay stable (the only one of our children to ever have regular doctor appointments, actually… in Canada we don’t do “well baby checks” like you guys in the states!) and everyone is amazed by her progress. We’ve also received a lot of communication from the local specialists that has been very positive about posterior tongue tie, or tongue tie in general, and how much they’ve learned from her case and how much more they will continue to learn even long after we’re out of their care. In spite of the intense struggle we endured, I’m glad that we pushed so hard not just for our case but for future families who may have similar challenges… now they may get more answers, and better treatment, then we were able to have at that time. 🙂
I want to thank everyone who was supportive, kind and understanding to us during this time. The most helpful advice and support we received from both strangers and friends alike that recognized the hard work we’d put in, and didn’t put us down for what we “could have” or “might have” done if we’d been in a higher income bracket, did not have disability, or other social barriers that others may have the privilege to live without. It’s extremely unfortunate that this post also attracted some less-than-supportive mothers, laymans and even so-called “professionals” who were more concerned with building a fanbase on Facebook than with supporting the efforts of all breastfeeding mothers. If anyone takes anything away from this post, and our experiences, I hope it is that ALL MOTHERS WHO BREASTFEED should be congratulated, supported and loved. Regardless of “how much” or “how little”, by your personal standards. Breastfeeding can be difficult, and challenges can be unexpected and draining. Every mother/baby dyad works with a unique set of challenges and tools… and we cannot judge another’s success by our own personal standards, as we more than likely have privileges that others do not. We all do what we can, and if given the opportunity and privilege of correct information, education and support: we’re granted the right (and, more often than not, the luxury) of informed choice. If we really care about women, and breastfeeding, then do your part to ensure all women have access to accurate information, and then support their choices – no matter what they may choose – so we help create an atmosphere where women of all walks of life can acknowledge breastfeeding is normal without derision or shaming when freely choosing another option. Ideally we’ll end up with mothers who can choose to stop if that situation is right for them, while also acknowledging the risks and benefits of all feeding (or treatment, in the case of medical barriers like ours) options. Thanks all, and feel free to share this post and any information/videos/links contained therein. Please credit when credit is due. 🙂

One further edit: I received a massive influx of flames and harsh criticism from Dr. Jennifer Tow and her army of random passers-by, largely sent in by her personal fanpage on Facebook entitled, “Holistic Lactation”, iirc. All of whom proceeded to leave assuming, rude, and privileged commentary in spite of repeated explanations and gentle (and eventually not so gentle) requests not to. Once she realized her comments were not as super awesome as she believed them to be, she deleted everything she’d written in hopes that it would not expose her, but the rest of the threads are still in tact as are all the comments that were emailed to me.
Since then I’ve been contacted by (as of this writing) two other people stating their experiences with Doctor Jennifer Tow, IBCLC were equally unhelpful, and she came off just as privileged and ridiculous in person as she did in the comments she deleted below. With this in mind, I cannot in good faith recommend her as a good practitioner to deal with in cases such as this one.

Please remember that above all: mothers individual situations, choices and limitations must be taken into account and respected.  If you are not doing this, YOU ARE NOT SUPPORTING WOMEN AND MOTHERS. My love to all mothers who are currently dealing with feeding problems, and my endless respect for those of you who have chosen to go about it a different way. You define your own success, and please do not listen to practitioners like this one who would shame you for your limitations, particularly those beyond your ability to change. <3

More info is below…


(Barium swallow study for posterior tongue tie, done when Z was about 4.5 months old. This clearly shows her tongue restriction and how the drinking/nursing behavior differs in a baby with a tie).
Also on YouTube, Dr. Kotlow (who is an authority on tongue ties, including posterior) has posted a video teaching people how to identify posterior tie. It is [ posted here ].

She agreed that at this time there was no indication that lasering her tie would be of substantial help given the improvements she’s making with other, non-invasive therapies. Particularly since, while she functionally presents as a baby with a tongue restriction, her tongue movement when it improves is that of a normal baby.

For those interested, here is what the cleft report said (abridged) :
ENT (secondary) :
Noted a cleft in the uvula and suspected that there was a slight to moderate VPI based on symptoms. He “cannot convince himself” there is a submucousal cleft.

Plastic surgeon:
Gag is significant, bifud uvula, suspects submucous cleft. Oral cavity and head are otherwise normal. She wants to follow up with an endoscopy.

Dental Specialist:
Saw nothing wrong with a visual examination, and is “at a loss” to explain why she’s having these issues.

Orthodontic Specialist:
See above. Notes she is happy and good looking and wants to see us again in six months.

Speech pathologist:
Results of a TEOAE (hearing) test showed near normal-to-normal results, though there was some slight interference on one side due to an attempt to feed and the fact that she was extremely noisy. No concerns about her hearing but she wants a follow-up in six months to make sure.
She noted several malformations in her mouth or jaw :

    • Bifid uvula
    • Small jaw and retracted tongue
    • Extremely strong gag reflex
    • Extreme difficulty with suction at breast and bottle
    • Nasal regurgitation and choking observed during feedings
    • Tongue tie or some other restriction in forward-backward tongue movement

Her report also says that breastfeeding is being accomplished solely due to manual expression into baby’s mouth, positioning and ‘more recently some success with the mini Haberman feeder’. There are no concerns regarding development. She also suggests we come back in six months.

Comments

comments

145 Comments

  • mikachubelle says:

    I am coming out of lurking land because you have always been so wonderful in the past. We are TTC baby number 3. You were so kind to me after we lost the first baby when people were being so horrid. I came home butchered from unwanted not needed surgery and somehow it was my fault.

    However, I digress… my milk didn’t come in with my son. It sort of did but from their best guess it was from being dehydrated. I tried fenugreek and pumping every 2 hours. I could only get at the most 1 oz from one breast and not even half of that from the other. I was just wondering if maybe you had an idea on how I could make sure there was milk production when this baby is made? Besides, staying hydrated even though I was well hydrated the last time. I really don’t want to go the formula route again. I even had multiple sessions with a lactation consultant who just got fed up because “I” just wasn’t doing anything right and there was something wrong with me. You were the first person I thought to ask.

    I ordered a picture of yours awhile back and just wanted to let you know it gets complimented all the time and its so beautiful.

    • admin says:

      First of all: congrats on your upcoming baby. 😉 Also, be proud of yourself for continuing to persevere, and for working so hard. That lactation consultant had no right to treat you that way, and say those things to you. It was wrong, and insulting. You were clearly working hard, as you’re here right now trying to get more information for yourself… and you should be proud of that.

      Secondly, in the event that there is something physical impeding your ability to produce a full supply, you need to redefine what success is. Success in breastfeeding doesn’t have to be a 100% supply with 100% feeding at the breast. It can be any feeding at the breast. It can be 50/50 formula and breastmilk. It could be an SNS or Lact-Aid at the breast with your milk and donor milk. It can be trying within your personal boundaries and limitations for three months and then putting it behind you. Success is whatever you want it to be. YOU – not someone else. You don’t need to choose guilt when you’re doing what your can within the confines of your unique situation. You don’t have to choose guilt when you’re making informed choices about your limitations, and everything else is just buzzing in your ear. Take in what you want (“Wow, you’re working so hard! Good for you!”, leave what you don’t (“You suck, you should have tried harder!”).

      Okay, sorry for the digression… I just wanted to make sure you’d heard that from someone just in case you hadn’t yet. 🙂 Especially in light of the shitty LC!

      Hydration can make a small difference but not making or breaking your supply. If Fenugreek didn’t work for you, you may have a problem with mammary tissue (fenugreeks in combination with receptors, and if those receptors are missing or incomplete you will not produce any more. Also, if you’re not having full at the breast feedings you’re not getting the stimulation that fenugreek requires to work). Domperidone is a better choice for this, as it can raise prolactin levels without either of those things. You may have much more success with a script for domperidone. That’s what I’m taking as well. You want to start with two pills 3x a day as a minimum dose, and gradually work up from there with pumping and breastfeeding and find what your ‘ideal’ is.
      When you’re entering your last 10 weeks of pregnancy you can eat foods and take supplements that have been known to help milk come in. Make sure your vitamin levels are good, stay well hydrated and eat well if you can. Relax.
      Because of your history, you may want to have ready to go formula on hand and sterile bottles, but try to avoid running to them in the first 3-5 days of life. A newborn’s stomach is the size of a cherry and can contain only a teaspoon of liquid: they do not need to drink a bottle of formula in those days… they just want colostrum. Teeny, tiny amounts at your breast in frequent intervals. It’s normal for them to be on your breast “all the time” and nursing and falling asleep. Keep a close eye on your baby and your milk supply: you’ll see baby starting to have normal bowel movements and fill more diapers in the coming days(generally they say one wet diaper for each day of life: 1 on day 1, 2 on day 2, etc… until it gets up to the normal 5-8). Signs of dehydration are rather obvious, and colic isn’t generally one of them. When your milk comes in it may not be the abrupt ‘blow up’ that you’re expecting: it may come in gradually and you won’t experience painful engorgement. That’s okay too. 🙂
      You can try tandem pumping while nursing (that significantly helps output, I have to do it otherwise I get barely 2oz out) with a manual or electric pump every 2-3 hours during the day, and I’m willing to bet your output WILL go up.

      IF you can, and if it’s available to you, find some better support! Ditch that dumb LC, you deserve better. Are there any LLL groups in your area? Ask around, find one that works for you and speak to accredited leaders about who they’d recommend too.

      Good luck!

      • mikachubelle says:

        I’m quite nervous because I know my husband just got back November 1st but I have this strong feeling that I am pregnant. I had it with the first baby and already had a name. The same thing with this one and I know she’s a girl. I just KNOW it. Even the dreams are as intense and real. I think I missed it with Gabe because I was still so traumatized.

        Plus, even a sip of my favorite wine is making me violently ill and I got a faint line when I took a test. On top of that, I HATE coleslaw with a passion and the other night I had to leave to go get some, happens everytime. My period was extremely short and very light and gone in 2 days. My best friend believes it might have been implantation bleeding.

        Thank you for the advice. Gabe had trouble latching and it took a night nurse who took the time and noticed because she cared and went and grabbed one of the nipple shields. He was finally able to get ahold of my nipple and did very well but my supply just would not build. I tried everything I could think of and that woman was just horrid. It took a long time to make me realize that it wasn’t something to feel guilty over. I gave him everything I could for as long as I could and I should be proud of that.

        I’ll look around for an LLL in the area. I live in Norfolk, VA so I’m sure there is one.

        Thank you once again for being so kind and the advice.

  • Waaay behind in my blog reading, but just wanted to say:

    YAY for some more good news/successful feeding methods!

    Also, the video is simultaneously really cool and a little creepy.

  • conchispa says:

    Coming in a litte late on this post but I want to thank you profusely for all of this information and the video. I passed it on to my fellow LLL leaders, a few of them also IBCLCs who happen to specialize in TT. One of them in particular was so thrilled and passed it on to more people.

    You are made of awesome. Seriously.

    And I am so happy to hear that things are finally getting better.

  • thehobbit says:

    I wanted to pop back over to this post and say thank you. Sincerely. I know I’ve posted here and there, briefly, about my own difficulties with my birth/breastfeeding/pumping etc, but this post made me feel better not because, “Oh, your difficulties are so much greater than mine!” but because after reading your feeding list I realize I do not have the capabilities and privileges that you do (local donor milk, producing enough to EP) and now I can finally begin to forgive myself, just a little, for giving these kids any formula. I had tried so hard and cried even harder when I made those first bottles of formula, but I’m glad to know that I haven’t succumbed to exclusive formula feeding and that we have the nursing relationship that we do. And that I have, very much, done it on my own through determination and good friends on the internet. So thank you. Forever.

    • admin says:

      🙂 I’m really glad to read this.

      I wish that you feel more peace with your decision. You obviously did what you could within your abilities; we all do. It’s been shown time and again that the vast majority of mothers come into motherhood legitimately WANTING to breastfeed exclusively, or have a normal birth, and all that… and end up feeling as though they’ve failed without quite knowing why. It sounds so obvious to say it out loud, like, “of course they fucking do!” but you’d be surprised how many medical establishments try to claim it’s entirely women’s fault that there is so many problems with breastfeeding and cesarean rates.

      What you’re doing is the BEST for your situation. Feel proud of yourself for that: you deserve it.

  • That video is incredible, thank you for posting it! You’re doing an amazing job. 🙂

  • Anonymous says:

    WOW…some people need to learn to mind their own damn business.

    You really have been through a lot. You have every right to be proud of the progress you and Zephyra have made! Your story is really inspiring.

    I breastfed my son for six weeks when he was born. I was too overwhelmed, uneducated, and did not have a good support system. So when I got pregnant with my daughter, I made sure that I got all of the information I could. After she was born, I struggled with breastfeeding so much (a bout with PPD didn’t make it any easier) that I was actually standing in the formula aisle at Target contemplating quitting (my two girlfriends talked me out of it). We had latch issues but no tongue tie, just sore and cracked nipples that made me howl in pain every time she tried to latch on. I cringe now just thinking about it! I was reading your blog at the time and your passion for breastfeeding really inspired me. I also found a lot of information via your links and your stories. It helped me stay strong and work through the pain and the difficulty that we had in the beginning. We just celebrated her first birthday and we are still nursing! This success is due in part to the education I received from reading your blog and I truly appreciate you for that. I am so grateful that you are willing to post about all of your experiences and knowledge because they do help other people!

    So thank you so much for sharing everything you’re going through. I am so glad that things are getting better with Zephyra and I truly admire you for your perseverance! You are a fantastic mom!

    Bethany

  • crunchynurse says:

    Video

    Thanks for posting the video. I am personally skeptical that feeding problems like Z has, associated with a posterior tongue tie, can be resolved to an adequate degree with therapy alone, although I agree that with a skilled provider it can bring about significant improvements. The physical restriction will remain, as her tongue will still be adhered to the floor of her mouth. I am very interested in seeing the video of the updated swallow study along with the SLP’s impression of it. Certainly there is much to be learned from this. I hope the team that is working with your daughter has some professionals that are willing to learn.

  • chem_nerd says:

    Okay, that video is fascinating. Thanks for uploading it!

  • chem_nerd says:

    Re: still not feeding well after clipping part 2

    You are being presumptuous and condescending. You are still assuming that this decision was made out of ignorance and fear, when there is nothing at all to indicate that this is the case. She didn’t say that chiro was horrible, or painful, or ought to be banned – only that she was not considering it for her particular children. For all the benefits it may have, I wouldn’t consider chiro for myself, simply because I am autistic, and extremely uncomfortable with being touched by anyone outside my immediate family. The comments you claim to be challenging were never made. You are arguing with a straw man.

    As for whether or not ‘s son experienced pain after having his tie clipped, I am going to make the radical assumption that his mother who, you know, lives with him is in a better position to judge this than you are.

  • chem_nerd says:

    Re: still not feeding well after clipping-part1

    You still make the incredibly presumptuous and condescending assumption the fear is the only reason to decline a particular therapy. I’m not afraid of hormonal birth control, to use my earlier example – there are simply too many potential interactions with other conditions I have (which are my business and no one else’s) for me to consider it a viable option for me personally. On the other hand, I fully support removing the various bullshit obstacles which prevent women from having reliable access to it in the US, because for many, it is the safest and most reliable method, and they deserve the right to make that informed decision just as I do. I could benefit from physical therapy – I don’t get it because my insurance doesn’t fully cover it, and right now, I simply cannot afford it – end of story. That decision is solely for me and my husband to make, and no one else has the right to insist that I do this when I cannot afford it and am getting by reasonably well with exercise and avoiding dress shoes like the plague. Again, it’s not fear, and it’s not ‘not trying hard enough’ – it’s making an informed decision based on my circumstances at this time. I have a condition which normally would benefit from medications like ritalin, concerta, or adderall. I do not and will not take any of these medications. Whether I choose to share the reason for this – ie, I have tried them, and have a potentially dangerous reaction to them – is my business and no one else’s. If I choose not to share my medical history with the great white whale of the internet and simply say that I will not take those, I expect not to be lectured on how they are miracle drugs and will completely resolve my ADD if I will just give them a chance; I have nothing to be afraid of – I have tried them, they did not resolve my ADD, they had other serious unwanted side effects, and while I do have reason to fear them, fear has nothing to do with it. Indeed, my doctor would not write me an adderall prescription if I asked her to. said simply that she had ruled out chiropractic therapy, nowhere did she say why. Your presuming to know the reason is condescending and rude. No one is obligated to share their complete medical history with you in order to convince you that they have valid reasons for not acting as you would in a given circumstances.

  • chem_nerd says:

    Re: still not feeding well after clipping

    Disagreeing with something you agree with is not the same thing as misinformation. There are any number of reasons why someone might decline a particular therapy. For instance, I categorically refuse to have anything to do with hormonal birth control. I’m not misinformed about it – I know that it’s safe. I know that it often helps PMS symptoms, which I get pretty damn badly. But for a variety of reasons, I am not comfortable using it, particularly when there are other highly effective forms of contraception until my husband and I are ready to start a family, and the SSRI I already take for other reasons does wonders for the PMS. I know the risks, I know the benefits, and in my particular situation, the risks outweigh the benefits. Simple as that. Similarly, I know psychiatrists can be pretty helpful folks. But I had a bad experience with one when I was in high school, and I thus want nothing to do with them unless it is absolutely essential. I know that they aren’t all like that one guy, but I’m still not comfortable seeing one unless I have no other choice. It’s not misinformation, it’s making decisions based on personal experience – decisions which I can reevaluate if the need arises later. is, as I understand it, opposed to routine vaccination in many circumstances. (I’m not sure if ‘opposed’ is exactly the word I’m looking for there, but you get the idea…) I am all in favor of routine vaccination in most circumstances. That doesn’t make either of us misinformed – that means we have searched out the information, weighed the risks and benefits, and decided that for our particular family, one outweighs the other. That isn’t misinformation – that’s informed decision making.

  • jenrose1 says:

    Re: TT-part one

    Do understand we’re talking about “up the chain” being the progression of specialists both of us have taking our kids to for different reasons. The regional metabolic specialist, for example, was a complete hack where my daughter was concerned. I’m sure he’s great at the things he sees all the time, but first he shrugged, was impressed I’d talked to a famous researcher, and then proceeded to do a skin biopsy without adequate pain relief, thus making my kid phobic of doctors for years. Then there were the craniofacial specialists who barely looked at her or touched her then tried to charge us almost $300 for a report that said she was developmentally normal (she isn’t), hitting milestones (she doesn’t) and not in pain (she was.)

    And yeah, those docs were ignorant and insulting. The feeding specialists we saw WERE OTs and developmental pediatricians, not lactation consultants. At the time, I could not afford a LC (insurance wouldn’t cover a LC, and the one independent LC I know of in town doesn’t take insurance even now), and with my background, was able to get my kid through with many of the same techniques that Babs is currently using.

    In our case, every difficulty is blamed on my daughter’s chromosome issue, and I have to fight to get them to treat it, rather than just shrug and say that’s the way it is. And at this point, we don’t GO to specialists anymore unless there is a dang good chance they’ll be able to do us some good, because thus far, not one of them has really done anything to change our outcome–the things that HAVE helped are simply her school and the supplements I’ve found through my own research.

  • chem_nerd says:

    I’m glad Zephyra is happy, healthy, and getting the hang of things:-)

    And I think you may have answered a couple of questions that have been hanging around for nearly 28 years. I have an incredibly hyperactive gag reflex – no tongue tie, as far as I know; I suspect it’s likely an odd quirk of my sensory integration disorder, right up there with the fact that my husband has yet to find anywhere I’m not ridiculously ticklish. But I think I may finally know why, whenever anything triggers my gag reflex, my automatic response is to bite. Hard. I pretty much have to give dentists fair warning, my doc has a standing policy of not putting a tongue depressor anywhere near me unless it is ABSOLUTELY essential, and the hubby french kisses me at his own peril. Whether or not I can even eat lollipops or chew gum varies on a day to day basis. But given that I also have somewhat narrow and often congested airways, that might well explain why I tend to bite whenever I gag.

    Which, in turn, might explain why my parents could never get me to take a pacifier or a bottle as a baby – didn’t matter that the bottle contained Mom’s milk, and not formula; I would have nothing to do with it, and Mom couldn’t leave me with anyone, not even my Dad, for more than an hour or so until I got the hang of sippy cups at six months old. As sensitive as I am to anything being in my mouth, I have to wonder if it may have been triggering my gag reflex.

  • Anonymous says:

    Tongue tie

    Wow what a journey, sounds very difficult all round. It frustrates me so much that senior health professionals cannot diagnose a less than obvious tie, even when every single symptom hits the checklist. That parents are left with difficult feeding regimes, stress, orally aversive babies, reflux, gut issues and countless medications instead of a two second procedure that could have saved you all so much. Hugs x

  • admin says:

    Re: TT-part 2

    … is this real life? Good god.

    I UNDERSTAND that you’re all different people, but you all have the same thing: privilege. And yes, I know this for sure, because you’re all using it. Even you, just now. No one from your group who has come in has taken the time to be understanding and sympathetic, nor has anyone even taken a single moment to reflect what I’ve said or even take it to heart. You’re on a crusade, I get that, but as a professional you really need to sit down and listen to what moms are saying… otherwise you risk come off as someone that no one wants to be anywhere near.
    Right now you’re working hard to change the context of my answers to mean, “I don’t wanna”, and that’s insulting. Even on your page, which I’ve been linked many times, you guys are saying things like, “I hope she changes her mind” as if it’s sheer bull-headedness that is preventing me from “seeing it your way”. That’s offensive. That’s rude. That’s ignorant, and that’s not likely to make me go into unaffordable debt, risk my husband’s job, sell my possessions and travel when I can’t. At this point there’s been so much effort poured into, “we’re right and you’re just not SEEING what we’re saying” that you’ve failed to realize you’re actually losing an audience by being insensitive and classist (not to mention ablist, not everyone has your abilities).

    Let me try and put my answer another way:
    “I would love to, that sounds awesome! I understand how beneficial that would be, and it would be amazing if it would make better and faster improvements over what we’re doing now. It’s really too bad there’s nothing here, because I am not in a situation where I am capable of leaving, even if I had the money to. I really wish things were different”.

    Does that make it clearer? This isn’t “A choice”, this isn’t “I’ve decided not to”, this isn’t “I made up my mind”. I urge you to consider that people in this world have different situations and abilities than you and your friends do.
    Also for the record, despite the fact that you’re pushy, insensitive and I frankly don’t like you (I cannot BELIEVE you, as a professional, told another person down there, “I’m sorry you’re so misinformed”!!!), I took the time to make videos of Z using her tongue that I’m happy to send along to you. BECAUSE AS MUCH AS THIS IS IMPOSSIBLE FOR YOU TO UNDERSTAND, I DO WANT TO HELP HER, I WORK HARD TO GET HER TO THIS POINT, BUT SOMETIMES TRAVELING ACROSS THE COUNTRY ISN’T FEASIBLE NO MATTER HOW MUCH YOU WOULD LIKE IT.

    I’d also love a new car, or to fix my own, which needs over 4k in work. That also isn’t an issue of simply, “not wanting it enough”.

    • Anonymous says:

      Re: TT-part 2

      Maybe everyone would do better by getting Kotlow or whoever to fly up to BC and treat Z in your town. Ha! He’d probably love the vacation.

      • admin says:

        Re: TT-part 2

        I’ll be sure to ask him to do that. 😉

        • Anonymous says:

          Re: TT-part 2

          You could actually call him and talk with him. I did and he was very accommodating.. we did fly to NY to get my girls clipped ( we saved for a few months and i researched a ton about everything..we are below the poverty line, but we were lucky enough to make it work.. I know not all mamas are.. so I try my best to direct them to the nearest person that may help them and I also help them research. I know Dr. Kotlow has traveled many times to lecture etc. You may be able to get in contact with a Dr. who has a laser and is willing to be taught how to do the procedure as well. I have nursed two babies with TT’s and both were on different ends of the spectrum of symptoms. my oldest was 3 when she was clipped and even then we saw HUGE improvements. The Ties will grow at the same rate at which the rest of the mouth grows, but they do not stretch. So, yes over time it may seem to improve, but really the symptoms are just changing and the cycle is not stopped, so gut damage is still being done.. yes even with older children no longer nursing, they do not masticate properly and a lot of food will come out undigested and whole.. Toddlers who are nursing will use their teeth to compensate for their poor latch. I have pictures of the teeth imprint in my nipple. :/ I hope you don’t have to struggle so much one day. And respect any decision you make .. I was adamantly against clipping at one time, but that is no longer the case.
          One thing regarding circ’ing re:TT… a foreskin is a normal part of the anatomy that does not need to be removed. A tongue tie is a midline defect. There is a difference…. My husband, myself and my girls all have maxillary frenulums ad posterior submucosal tongue ties. We all have midline defects.I also just found that my oldest has a minor case of spina bifida.. this was also missed by many practitioners, as was her pectus excavatum.

  • admin says:

    Re: TT revision

    That would be fantastic. I’m not sure how he would go about finding someone, though.

  • admin says:

    Re: TT-part 2

    For the record, I am also a breastfeeding educator. I’m an LLL leader and working toward becoming an IBCLC.

    I understand what you are trying to say, and I appreciate it. However, you’re missing the point: I don’t have the money, I don’t have the ability. Period. I can’t “put it on a credit card”. I can’t “scrimp and save”. I can’t “just find the time”.
    If you (or other moms) can, that’s great, I’m happy for you. But right now when I balance the weeks or months it would take to work that out, the fundraising I would have to do (if it was even successful), the strain on my family, plus the long term effects financially or physically to travel across or to another country for a 10 minute procedure… when she’s making improvements right now with therapies done locally, it’s simply not an equal choice.

    And yes, Amber and the other noters that came from your breastfeeding group are being extremely rude. The fact that you continue to excuse it is kind of awful, and it makes me NOT want to have anything to do with any of you because you clearly aren’t the kind of people who wish to be aware of the different situations that other families may be in. You guys have all come in here with the idea that everyone is like you, has your abilities, and if they don’t they have “Screwed up priorities”. That’s not exactly the best way to get someone to see your point, is it?
    If wishes were fishes… but unfortunately it doesn’t work like that.

    If I had the time and money and ability today, things might be different, but it still seems like a lot of things to do for an idea that may not even be applicable to her case and may not help any more or less than what is happening now.
    She has better range of motion in her tongue than she used to.
    She has a better ability to feed than she used to.
    She latches better than she used to.
    She is capable of using suction better than she used to.
    Isn’t that the goal?…

    If you want to get your point across and if you think you can make a difference, it might help to be a little more understanding and open to different situations. That’s not speaking specifically to you, but everyone you sent over here from your group.

  • Anonymous says:

    green poop and oversupply

    You probably already know this, Heather, but I was just rereading your great (!! great!!!) post on Z’s nursing issues when I remembered something from nursing my first. I had a terrible oversupply problem; she had green poop. Once I resolved the oversupply the color of her stool returned to normal. I think her bowel needed all the fat content that is not present in foremilk.

    I think you’re doing an awesome job and I hope that the future lactation consultants, med students, etc. take very important lessons from this record.

    • admin says:

      Re: green poop and oversupply

      Yep ,that’s exactly why she has green frothy poops. Her poor suction makes it difficult to pull fatty milk out of the breast. 🙂

      Thanks!

      • Anonymous says:

        Re: green poop and oversupply

        Actually the frothy poops are from gut damage caused by the baby swallowing air, clipping the TT fixes this and prevents further damage to the gut.. We have had green mucusy poo since birth with my youngest DD. it has taken a few months of healing since the clipping and she is FINALLY stooling better 🙂 I wish practitioners stressed the complications of a leaving a TT, but most don’t seem to really understand how greatly they impact feeding.

        • admin says:

          Re: green poop and oversupply

          Yes, I know that: both air and an imbalance of foremilk to hindmilk that causes the gut damage, in turn prompting it to produce mucous to protect itself which causes the snotty, green poops. I’ve talked about it in my blog previously, but gave a simplified answer in the comments.

          • Anonymous says:

            Re: green poop and oversupply

            I think the hindmilk/ foremilk imbalance has actually been debunked in the new literature.. They finally did some research on it!lol.. it is actually TT’s which cause poor latch, then causing gas, gut damage, and green snotty poops. It can be healed though, takes a lot of time and effort, but possible! 🙂

  • Anonymous says:

    Holy Cow!

    I cannot BELIEVE some of them comments you’ve gotten–I mean, what the hell? You are a HORRIBLE, horrible mother for not dropping everything and rushing off to have your baby lasered! Geez 😉 (I’m going to add a sarcasm warning just in case because I know it doesn’t always come across on the internet). For God’s sake, people. She has a happy, thriving baby who is overcoming some crummy odds. Give her a break!

    We had a lactation consultant actually send an ENT into my hospital room to clip Rowan’s tongue tie–without asking us. When I firmly refused (we hadn’t even talked to a pediatrician about it yet), the LC actually said “well it’s no worse than having your son circumcised!” I shouted that I wouldn’t have done that either! And she nursed 13 months with that tie, and did just fine, thankyouverymuch. If you can deal with a problem without fixing it, why go WAY out of your way to fix it just because you can?

    You’ve been much more polite than I ever would’ve been to some of these people. You go right on doing what you’re doing 🙂 If at some point it does become necessary to have it fixed, I’ll totally donate something to the cause. But honestly, I think you have it well in hand at this point.

    • admin says:

      Re: Holy Cow!

      It’s amazing to consider that if you’re having success with a less invasive, less painful, inexpensive and local treatment that you wouldn’t want to take the risks (financially and otherwise) to travel across or to another country. 😛 That’s even assuming that I could – which I can’t. That option is not available to me at all, even with “saving”. I’m not entirely sure where people get this idea that everyone is middle class and makes thousands per month, or can just “put it on the credit card”. Like… what?

      Anyway, thanks. 🙂

      • Anonymous says:

        Re: Holy Cow!

        But credit cards are TOTALLY the way to go! All the cool kids do it. Why not borrow thousands you can never pay back for something you don’t really need?

        Also, my husband brings home about $2400 a month (give or take a hundred or so for overtime), and I couldn’t afford something like this either. I can’t even afford to quit my $1-above-minimum-wage part-time miserable job because, you know…that’s how we buy food. People don’t quite understand what it’s like to not have any financial leeway whatsoever. Debt sucks, lol.

        • admin says:

          Re: Holy Cow!

          Yep. We’d probably be able to put away a bit and do it in 4-6 months down the line, if it was just me, but by that point I’m not sure it would be relevant anymore. 😛

          • Anonymous says:

            Re: Holy Cow!

            Just wanted to share a link written by a friend who initially decided against clipping her son’s tie, but then inevitably issues came up down the road and she wound up getting it done at 1 year. Still found it totally worth it. http://www.stateoftheheart.net/?p=667

            That’s not to say you’ll decide to do the same, but since you said above that you might be able to manage in 4-6 months but weren’t sure whether it would be worth it, I thought I’d share. It so totally CAN still be beneficial even a year down the line. So never say never!

  • bluealoe says:

    I have nothing constructive to add, but thank you for writing this. If I ever have challenges breastfeeding a (hypothetical) child, you’re going to be my first resource.

    The list of notes from doctors made me roll my eyes. I thought they were supposed to be a TEAM? It sounds like they’re living on different planets.

    I’m also impressed that you took the time to write out your list of privileges that help you in your breastfeeding journey. Most people are not that self-aware…one more way that you’re awesome. 🙂 I mean, how can someone look at a sentence like My situation is unique, and these are my thoughts and my own standards for myself: they absolutely do not reflect my beliefs or expectations of every other mother/baby pair out there and think that you’re imposing your standards on others or judging them? If they do, I can’t even call that lack of reading comprehension; that’s downright willfully misinterpreting.

    Sidenote: The trolls on this entry are just…wow. *shakes head* What they fail to grasp that no matter what they think, it’s not THEIR decision. It’s yours and Curtis’s decision. Sheesh.

  • I liked being able to read the whole gist of Z’s story in one beautifully written post. Seriously, so well written. And your disclaimer section will help me a lot as I work with breastfeeding mothers in the future. I’m going to share the kellymom link on my FB. So proud of you!

    I heart you, Babyslime.

  • _delphiki_ says:

    Re: still not feeding well after clipping

    Chiropractic care isn’t something I am willing to allow for my children but thanks for the advice anyway 🙂

    Also, the clip was excruciating. My son will not have it done again unless it’s under full anesthetic and he is prescribed proper pain medication afterward. My first son was circumcised without my permission and he was in far less pain that my son who had his tongue clipped.

    • admin says:

      Re: still not feeding well after clipping

      I can’t believe she talked to you like that. I am so sorry.

    • crunchynurse says:

      Re: Chiropractic care for children

      I’m curious as to the reason you would not consider chiropractic care for your children. Not every chiropractor would be suitable but there are board certified pediatric chiropractors that provide gentle, safe, and effective adjustments for babies and children. The technique is not the same as what you may be familiar with for adults. You can find more information on pediatric chiropractic care here, including a search tool for finding a board certified provider. http://icpa4kids.org/

    • admin says:

      Re: still not feeding well after clipping

      I’m going to freeze this portion of the thread so you don’t get any more pushy bullshit in your inbox after setting a very clear boundary. Again, I’m really sorry about that.

  • tomsmum says:

    You are a seriously amazing Mum, well done to you and your baby and good luck for the months ahead. As a Mother, trainee breastfeeding counsellor and former Speech Pathologist i have found your story so interesting and informative. Thanks for sharing it

  • uneko says:

    Hi!

    You’re a beautiful person who’s done a wonderful thing in posting this! remember that for every grumpy commenter, there are 50 people who appreciate in silence <3

    Hang in there and KEEP GOING~!

  • admin says:

    Re: Tongue tie

    That original response wasn’t in response to you, it was supposed to be for someone else downthread. I’ve been trying to sort out a number of comments, inquiries, questions and some bizarre flames (see downthread) and am getting mixed up. My apologies. Today has been an extremely busy and rather painful day.
    However the basic point does stand. I very much appreciate your information and it’s all being written down and considered, and I was aware there were some across the country who did the procedures, and others in the USA. The closest to me is in Seattle which is accessible by a very long boat ride and several hours of driving (plus hotel, etc).
    Unfortunately, not many people seem to understand or be willing to understand that not every family has the same abilities or financial situation and may not be able to travel as easily… and that it has nothing to do with motivation.

    This post has been reposted to several locations now, most without context, and while I appreciate the circulation and exposure in hopes it will help other mothers… it’s also brought in some very privileged and frankly offensive viewpoints on my family’s finances, the way we spend money, my body’s abilities, location and just about everything else. All from reading one post, and seemingly skimming over the section that says she’s making improvements. Such is the life of posting things on the internet, but still.. it’s a little bizarre to have several threads worth of people complimenting my determination in one breath, while insulting my improper priorities in another.

    Anyway, thank you: I appreciate your information and suggestions.

  • admin says:

    Re: Tongue tie

    Yes, it’s true: I cannot logistically access a skilled provider at this time (and place) for quite a few reasons. Aside, I’m not sure at this point that she needs the procedure as I said she’s making very good improvements.

  • admin says:

    Re: Tongue tie

    Procedure yes, travel and time, no.

  • lululily says:

    Such a wonderful post; thank you so much for writing it all out. I’ve been following Zephyra’s breastfeeding story all along, and I’ve been so amazed by how far you’re willing to go to feed her your milk, and so thankful that you’ve been sharing your story. I’m a doula and CBE (and longtime breastfeeder of my own kids)and have come across a few situations where I’ve queried posterior tongue tie, but no one over here seems to be talking about it (I’m sort of suburban Vancouver).

    Thank you again, for sharing. This will prove to be such a wonderful resource for struggling mothers and us “lower end” breastfeeding support workers (we don’t have much power, but we want to help and we just need more avenues to explore!).

    • admin says:

      Thank you. 🙂

      PS. I hope you know that the term ‘lower end’ isn’t meant as an insult… I am one of those people! But rather a reflection of what others consider breastfeeding counselors, LLL and lactation consultants to be on a spectrum of care providers.

      • jenrose1 says:

        The most useful breastfeeding advice I ever received personally came from a lay midwife who didn’t have a high school diploma even. That was for K.

        For Shiny, most of the specialists we went to had NO CLUE WHATSOEVER.

        By the time we did a feeding clinic, she was eating solids, and doing fine with them, and they were like “So what’s the problem.”

        I was all, “She bites every feed at random.”

        They had no clue. NONE. So I got bit for 2 years.

      • lululily says:

        No no, no insult was taken. It’s one of those things I see time and time again – I’m on the front line of support for new moms (mainly my own clients), and yet everything I suggest towards correcting (run-of-the-mill) breastfeeding issues is pooh-poohed by doctors and (sometimes even) midwives (and I love me midwives so this isn’t an attack in any way). It’s even harder for the people who attend my CBE classes, because I often don’t see them again until 6-8 weeks after the birth (we have a reunion class) and by that point breastfeeding has either succeeded or failed. And it’s not that I have all THAT much to offer (I did take breastfeeding counsellor training many moons ago) but I am really good at the SUPPORT SUPPORT SUPPORT side of things and even that (seemingly simple thing to do) is sadly lacking out in the community. And yet it’s the main reason why I was able to persevere breastfeeding my first (and thus why I could so confidently go on to breastfeed my other two).

        Anyway, I really could go on and on, but I’ll wrap it up and just say that I still love this post! I’m so glad to see all the comments and attention it is getting. You’re a fabulous mother and a fabulous advocate. Thank you so much for speaking up!

        • admin says:

          That is frustrating. I wish there was far more access to accurate breastfeeding support right from birth… and more respect from it from professionals and the community overall.
          I’m not one for victim-blaming: mothers have all sorts of problems and pressures already, and it isn’t their fault if they don’t have access to that information nor the ability to execute more advanced problem-solving… I blame a system that couldn’t care less about improving breastfeeding rates or investing in babies and mothers. 🙁

          Thanks for the support! And yes, it is getting attention. It’s definitely not all positive (you should feel GREAT for being a kind, sensitive breastfeeding educator willing to sympathize with individual needs and abilities… because man, not everyone is as compassionate as shown by these threads), but at least it’s getting out there for other moms to see. 🙂

          • lululily says:

            Amen! I can’t stop reading comments and I’m pretty astounded by some of the threads. I probably would have shut down comments and walked away from blogging forever, so, again, good for you. It must start to feel like battling the borg though.

            It honestly breaks my heart how undervalued breastfeeding really is out there. Man, are we ever brainwashed as a society. And for all the continuing education I’ve done in breastfeeding, you know I’ve never known a doctor to attend? Lots of doulas and CBEs, a fair amount of nurses, midwives attending in proportion to their population over here but never any doctors. Whenever people approach me about their “failure” to breastfeed, and the guilt they carry around, I just wish I could tell them that it’s not their fault. The system has failed them.

            • admin says:

              *nods*
              It’s terrible. Everything is set up to blame mothers. Even the c-section epidemic is being spun to be a mom’s fault. I’ve read countless responses from doctors, hospitals and major medical establishments that claim mothers are all “requesting” these surgeries and they’re just simply doing what they’re asked. When that was debunked with surveys and research showing that the vast, vast majority of mothers WANTED a vaginal birth and would have one if they thought they could… they blamed it on mothers being “too fat”, or “too old” or “too stupid”. Everything is their fault, their failure, their problem with absolutely no one taking responsibility as a care provider for, you know, PROVIDING CARE TO THEIR PATIENTS!

              While I may not personally understand or sympathize with the desire to formula feed from birth (when all options are available), or choose cesarean sections (when normal birth is available and safe in their situation), if someone is given all the correct information and has been able to weigh the risks vs. benefits and makes an informed choice… THAT’S the goal. No one can (or should) argue with informed choice, because you begin to infringe on someone’s personal freedoms and basic rights… the problem is we don’t usually have informed choice at all, or even get the option to have it. 🙁

              As you saw in the threads below, it devastatingly similar with breastfeeding. Victim-blaming to the point of total insanity. I don’t get willful ignorance, and it gets under my skin sometimes, but at least I keep it to myself because I get that it’s rude… you know? Some of the commentary down there was blatantly classist, ableist and when it was argued they were being insensitive and inconsiderate, they came back with insults, sockpuppeting as extra commentors (I have IP logging turned on), attempts to police the poor and eventually suggesting that I would rather buy things than care for my daughter. Is it really so important to victim blame that they’ll resort to contextomy, straw man arguments, quote mining and eventually flat out making things up?… I expect it from random trolls, but it’s a bit of a shock to see it come from so-called professional breastfeeding educators. Did you see that woman tell one of my noters she’s, “sorry you’re so misinformed” after she’d politely explained that chiropractic care wasn’t something she was comfortable with? I sincerely hope she doesn’t speak that way to her clients, but I doubt it seeing as she’s apparently “Reaching out” to “Educate” with her “passion” on these threads. 🙁
              I’m a big girl and don’t carry around any guilt about how hard we’ve worked, but many other mothers aren’t as fortunate and it’s really shitty to be told it’s all your fault on top of it all… rather than have someone reach out to work with your personal circumstances to meet your goals.

              Anyway, thanks for the note. 🙂

  • jenrose1 says:

    She explained to us that due to her tongue tie and inability to bring breast tissue back into her mouth, she’d never dulled her gag reflex, making it oversensitive and problematic. It has now grown to a point where it’s preventing normal oral health and development due to how protective she has become of her airway: she chomps down on anything that’s put anywhere near her mouth to prevent it from going back any further.

    I cried when I saw that. It explains SO FUCKING MUCH about Shiny. We had a hyperactive gag reflex diagnosis very, very early, to the point where I actually blogged with joy the first time she coughed to clear her airways rather than just gagging. Her gag reflex didn’t settle down until she was eating solids, like, a lot. And I wonder if it explains a lot of her enunciation issues.

    And yeah, 2 1/2 months is exactly the point at which she stopped tolerating bottles and we had to resort to gravity feeding. 5 months was the point where she actually started sucking… and A’s dad died and life went to hell and then she didn’t gain for 2 months until we started solids AND got her on high fat solids like coconut milk fat.

    • admin says:

      🙁

      It seems like so many people who had these feeding difficulties (each due to a variety of different issues, so it would seem) had the SAME MAJOR OBSTACLES at the exact same times. It’s like stops on a map: 3-4 weeks, two to-two-and-a-half months, 5 months…. crazy.

      I’m so glad you and Shiny got through that.

      • jenrose1 says:

        And playing the specialist circus. The fucking truth of it is that not one goddamned one of them knows what they’re doing when it comes to breastfeeding and newborns. I could say, “She doesn’t do better with a bottle” and it was like the words simply didn’t mean anything to them at all, no significance. We got sent to an ENT who just said “all looks anatomically normal, she’s got paradoxical breathing (breathing when the vocal chords are closed) and a hyperactive gag reflex.”

        And then everyone just shrugged and said “Must be the syndrome. Have you tried formula?”

        *headdesk*

        • admin says:

          lolz. Except not. Ugh.

          I’m glad Zeph is improving though, she’s making such good progress right now. 🙂

          Oh hey, need a late night laugh? Check some of the crazy privileged responses after yours, or on the big thread. There’s a really fun one I’ll know you’ll especially enjoy.

          • jenrose1 says:

            I’m afraid if I laugh too much I’ll pee my pants. 31 weeks and all. 😉

            • admin says:

              It might also raise your blood pressure, depending on how you want to look at it. Apparently if I really loved my baby I’d just hire a nanny for my kids and fly to New York, and my inability to do so is evidence of my fucked up priorities. I mean, I just got a Macbook 3 weeks ago on a payment plan with a backed tax refund, and a client paid for my travel last year so that’s totally the same thing.

              It’s like YouTube, only with privilege instead of trolololing.

              • jenrose1 says:

                Yeah, and if I really cared about Shiny, I’d have taken her to Ohio to one of the children’s hospitals there, or to England to see the one fucking specialist in the world who has actually studied her condition in depth… except we have contact by email and he’s got no treatment expertise beyond what we’re doing, all he does is analyse, and I’m more cutting edge than he is anyway.

                Honestly, with the number of specialists you’ve seen… I just don’t understand why the fuck if it’s a 10 minute procedure there aren’t more people figuring out how to do it? I’d rather insist our local pediatric dentist figure it the fuck out already (I know he’s competent) than travel all that way for a 10 minute procedure that might need revising.

                  • jenrose1 says:

                    I have no idea if he knows how to do it, but Shiny’s dentist has been so fucking fantastic with her in every way (AND LISTENS TO ME ABOUT HER OH MY GOD) that if this next baby has issues I actually probably would ask him to figure it out. Whether or not that would work… but god.

                    TEN MINUTES. NO ONE SHOULD HAVE TO TRAVEL ACROSS THE FUCKING CONTINENT FOR A TEN MINUTE PROCEDURE THAT YOU DON’T EVEN HAVE TO BE AN MD TO PERFORM!

                    But yeah. It blows my mind how her dentist and my PT are all “Sure, show me more information, I’d love to learn” and her doctor is all, “The kreb’s cycle makes my head spin, talk to the metabolic specialist about that.”

                    • admin says:

                      Technically the procedure they’re suggesting is done under general anesthetic, and involves lasering, so you do need to be a professional. There’s just a lot of other issues involved, outside of the fact that she’s improving and there’s probably not a need for that at this point? Anyway. I know, it drives me nuts to run into the professionals who are so fucking dismissive. The ENT was especially bad. SO BAD.

                    • jenrose1 says:

                      For ear tubes, and an abscess near Shiny’s ear, and adenoids, our ENT was great. Anything beyond that? Hah. No.

                    • Anonymous says:

                      The laser procedure involves no anesthesia .. which is a big reason it is preferred.. there is less bleeding, a very quick recovery, not stitches, and takes about 10- 15 min.. you can look up the procedures online.. both my girls were TT’d// I just got through nursing my first on my wits.. NO one here diagnosed it until my DD1 was 3 yrs old. and my baby was 6 mo old.. I researched the procedure, providers, etc for about 3 mo before we committed to the procedure.. it literally solved ALL of the issues. Part of why I delayed so long was b/c I thought that things would just keep on improving as she got older..we had come SUCH a long way, but in reality it all simply cycles.. she would get “better” .. but then things would start spiraling downward again.. Dr. Kotlow is who I saw.. and we also traveled, he was great. He answered all my questions when I called his office, and he will not clip ALL ties if they are not causing harm. Actually my oldest daughter’s TT was so minor he was surprised at all of the issues we had had.. he clipped it and immediately her lisp resolved.. he clipped my baby and her tongue became an inch longer, my milk regulated in 24 hours, and so many other things improved.. I definitely recommend a TT procedure done with a YAG laser.

                    • admin says:

                      Laser procedures that do not involve anesthesia are done to fix anterior ties, not posterior.

                      I’ll say this again: We are having success and dramatic improvement with a non-invasive, inexpensive (free) local therapy. Even if I had all the time, money and ability in the world to travel, what is the motivation to do it if we’re having success already?

                    • crunchynurse says:

                      TT revision

                      Here is some information about how the procedure is done using laser, just for reference. It does not always require general anesthesia. http://www.kiddsteeth.com/articles/tt_laser.htm

                    • admin says:

                      Re: TT revision

                      All of those images and information apply to an anterior tie, which she does not have.

                    • crunchynurse says:

                      Re: TT revision

                      Yes, I understand that. It is difficult to find images with the type of tie that Z has, probably because it is more difficult to photograph. But it can be treated with a laser, and treatment with the laser is less likely to require general anesthesia, although that may depend on the provider.

                    • crunchynurse says:

                      Re: TT revision

                      This link has some images of posterior tongue ties, if anyone is wondering how a posterior tie can be assessed. http://www.cwgenna.com/qhcontent.html

                    • admin says:

                      Re: TT revision

                      All of this is beside the point. I feel like you guys are rewording what I’m saying as, “I don’t wanna” rather than “regardless of want to, I am unable.”.

                    • crunchynurse says:

                      Re: TT revision

                      I mainly posted Catherine Genna’s info for the benefit of any other moms that are having difficulties breastfeeding an infant with a posterior tongue tie. I would hope that, regardless of your situation, you would encourage other moms that are having similar difficulties to seek a skilled provider if at all possible.

                    • admin says:

                      Re: TT revision

                      I think that’s kind of obvious from this entry?… more snarky disrespect.

                      Look, I’ve been pretty clear: I appreciate everything that’s been said. I even thanked the chicks who were straight out disgustingly rude about it.
                      What is pissing me off is the people who are acting like I have limitations because I simply don’t try hard enough, don’t love my baby enough, or whatever else privileged bullshit is being said down there. It’s gross, dude. And not one person has done anything but defend it.

                    • Anonymous says:

                      Re: TT revision

                      No, I never said or implied any of that, and I’m sorry you are getting that impression. You have stated that you are a LLL leader and a breastfeeding educator. You said that you wrote the entry as a resource to others. It would seem appropriate to add some additional references for the stated goal of helping other mothers. I would suggest Dr. Kotlow’s list of articles, Catherine Genna’s, and the IATP website. I just don’t want anyone going away with the impression that posterior tongue ties can’t be treated, even though I recognize that there are significant barriers based on geographic location and other factors.

                    • crunchynurse says:

                      Re: TT revision

                      Whoops, posted my comment anonymously by accident. No disrespect intended, I’m just suggesting you add a few references to the info you are providing. See my other comment.

                    • admin says:

                      Re: TT revision

                      Will do. If your intentions were not snarky than I apologize for misreading them. There has been a lot of BS coming from that holistic lactation group.

                    • jenrose1 says:

                      The main doc they’re referring people to is a dentist, is all.

                    • admin says:

                      The Kotlow guy? I didn’t realize he was a dentist. Everything I’ve read around the internet talks about posterior ties being properly treated via a short, easy procedure that should be done under general anesthetic to ensure the baby doesn’t move and that the procedure is accurate and completely… while everyone here says that’s not true. Either way, it’s still not something that’s open to me at this time regardless of my desire to do so.
                      And still beside that point… she’s improving dramatically with less invasive procedures being done locally. Which is apparently impossible. But who knew.

                      Seriously, these chicks are really getting under my skin with their dismissive, privileged attitudes.

                    • jenrose1 says:

                      Yeah, him. That’s why I was saying I’d rather browbeat our fantastic local pediatric dentist (he’s seriously the best at what he does of any of the caregivers we’ve seen for Shiny, bar none) to learn the procedure than travel for it if faced with that specific issue.

                      Have a virtual glass of wine… we can toast to our impossible kids. 🙂

                    • admin says:

                      And our apparent lack of love and willingness to work hard for them! As is clear by all the hard work we’ve put into solving their problems…. Cheers!

                    • crunchynurse says:

                      Working with a local dentist

                      This is what Jennifer Tow was suggesting, and I think perhaps it was misconstrued. It is something worth making some calls. As she said, Dr. Kotlow is offering training for professionals on November 19th. I don’t know how often he offers this but with some research it could be determined who has the type of laser that Dr. Kotlow uses. On his site it is named as DELight Erbium Yag laser. The manufacturer’s information is in the upper right hand corner of the page here: Including address and telephone. http://www.kiddsteeth.com/articles/tt_laser.htm

                      Dr. Kotlow could be contacted for more information, perhaps he will even send you something you can share locally with a dentist that has the laser. Who knows, if someone in the area has the laser they might be interested in taking the training. And then if any setbacks arise with Z, it would make the surgery more accessible. Not to mention being a resource to other moms and babies in similar situations.

                    • Anonymous says:

                      Re: Working with a local dentist

                      It seems like the moment has passed, but I just wanted to re-mention this. It’s no guarantee, but it sure might be worth it to mention this training (what timing!) to a couple of locals, maybe even someone you’ve seen. Nothing to lose just by suggesting, right? I mean, they could say no, but there’s a chance, even a slim one, that they might say yes! I think that’s all that was being suggested. Put it out there,see what might happen?

                    • gen_here says:

                      I realize I’m late to the party. But I have to…

                      Seriously, Heather. Can’t you just put your painful fusions in a box, harvest your money tree, and hop on your private jet with Z, use your completely free passports and jump over to New York for a few days? The nanny won’t mind. Anything less is just insane… it’s for the baybee!!!!

                    • admin says:

                      I’m such a selfish bitch, don’t you realize I have a camera that I can sell since I don’t use it?!

                    • gen_here says:

                      That was my experience, too. The ENT waltzed in an hour late and then looked for 30 seconds and said, “well, surgery won’t work – she’s fine.”

                      Bitch.

  • jenrose1 says:

    Re: Tongue tie

    She’s said repeatedly that this is not a typical “clip” tongue tie, and that the kind of surgery that may have to be done isn’t offered until much later (age 2, IIRC.)

    • Anonymous says:

      Re: Tongue tie

      My son had the same. A posterior submucosal tie and a lip tie. It can be revised with laser. It’s offered from birth (by those who care enough about breastfeeding dyads to offer it). Dr. Kotlow in Albany is probably the best known. People come to him from all over the world. There are also apparently 2 dentists in Ottawa who offer it as well. Dr. Mitnick in Montreal is also familiar with posterior ties.

  • admin says:

    Re: Tongue tie

    Yes. I’m glad that you are fortunate enough to be privileged with the wealth, ability to take time off work, and the able body that allows you to be able to pick up and go across the country for a medical procedure… but not everyone is as blessed.

    • Anonymous says:

      Re: Tongue tie

      Hi, empathizing greatly with the breadth of your challenges. My daughter had a posterior & lip tie, too, along with some other challenges. It took us a full 5 months to get Lily transitioned onto the breast.

      I’m so angry on your behalf with the sorely lacking pros you’ve seen. I know your circumstances are prohibitive, but if you decide to look in the Pacific NW for someone who actually knows what they’re doing with TT, I can help. I know Toronto and Montreal are far from you; I think Jennifer was just trying to find a way for your insurance to cover it. (And believe me when I say I’m not coming from a place of privilege, in any way, but especially financially. I won’t derail your thread with my financial woes, but really, trust me.) I’m in the lactation program at Birthingway in Portland, working towards my IBCLC certification, and we can find good connections both here and Seattle.

      Here’s our story if you feel like it. http://dou-la-la.blogspot.com/2009/08/our-nursing-saga.html Pretty exhausting if you’re in the midst of your own struggle, of course, so I wouldn’t take offense if you didn’t!

      Whatever path you choose to take, I wish you luck.

      • admin says:

        Re: Tongue tie

        Thank you for being respectful with your suggestions, and respectful of those with different situations and abilities than your own (not everyone has been as… compassionate, we’ll say).
        There is also one in Seattle, apparently, which is very close to me though I can 100% guarantee you I would not get my “insurance” to cover the procedure.

        That said, the bigger issue is one I’ve already addressed: I’m not sure it’s necessary at this point in time. If the procedure was local and the cost not prohibitive it would be a different story, but we’re a family that has to weigh our risks and benefits of situations like this, including my baby’s needs. A month ago we would have been in a place where going to see her may have outweighed the damage (to pocketbook and family routine, as well as my body. My disability makes it very difficult to travel well without a lot of pain and difficulty, as well as planning time). At this point?… she’s actually doing really well. She’s made fantastic progress, has now managed to take a normal, wide-necked bottle on nothing but her own suction, her tongue length and mobility are improving dramatically and she’s even beginning to nurse better. These are all very positive steps, and they show that she’s making amazing progress toward normal feeding. At this point we’re doing okay. It’s not perfect, and it’s still a challenge, but she’s very happy and thriving… which is the best I’ve been able to say for a long time. 🙂 The therapies are working very well, and we’re not in a position where we need to be thinking about tubes and formula supplements anymore.

        Like I said, a month ago the situation was very different, but right now we’re doing a lot better, so the risk vs. benefit argument of flying across the country and/or the extensive planning, pain and cost that comes with traveling anywhere (let alone the problems of paying for a procedure out of the country, attempting fundraising of hundreds or thousands, finding someone able to take care of my children to meet their unique needs and disabilities and risking upsetting my elder daughter’s schedule during a time when she’s backsliding, etc)… all that has to be taken into account, and the balance has changed.

        If things took a turn we’d have to revisit it, but for right now she’s making really amazing improvements. 🙂

        Thanks for all your information, and respectful comments. I appreciate them!

      • admin says:

        Re: Tongue tie

        Oh hey, I just realized who you are! I know you from The Unnecessarean comments! 😉

  • greenmama says:

    Thanks so much for writing this! Its all extremely interesting. You’re so in tune with your daughter. Mostly I just hope your nursing relationship becomes one you are fully satisfied with, and that you and Z get some good answers soon. I’m happy to read you have the support of your husband, family, and your local LLL. Support really can make or break you.

  • admin says:

    Re: Tongue tie

    There is no one here who offers treatment in the way you are describing, and while there are several practitioners in the USA who do… we are not in a position where we can afford to travel to another country and pay for the procedure, financially or otherwise.

    At this time she’s making progress, and responding extremely well to the therapies.

    • Anonymous says:

      Re: Tongue tie

      You and your baby girl have been through so much. I know, because I was there too. Your story sounds so much like mine, especially the first couple of months. By 6 weeks I realized we were dealing with a lip tie issue and I suspected a possible posterior tongue tie as well. Good luck trying to find a health care provider here (St. John’s, NL) who even know what either of those are. Over the next 6 weeks I went through 4 IBCLCs, 4 GPs (all very good GPs, who teach at the university here), a plastic surgeon, and a dentist. At best, their responses were, “there’s definitely something not right, I just don’t know what it is.” At worst, “Your baby is perfectly healthy. Just bottle feed. It doesn’t matter in the end anyways.” (It didn’t seem to matter that he couldn’t suck on a bottle either.) I had all of this milk. I could have fed twins. He just couldn’t get it. And by 3 months he was refusing to nurse during the daytime at all. (It was so stressful for him because he would aspirate my milk every time he fed.) It was only at night I could get him to nurse, sidelying, with most of the milk flowing out of his mouth and onto a bunch of receiving blankets I had to lay under us. At 3 months, he had begun losing weight and was the weight he was at 2 months. At that point, I said “fuck it” and sent out an SOS to a birth/lactation activist on my FB friends list. She put me in touch with Jennifer Tow. Jennifer diagnosed posterior TT and LT and really pushed us to see Dr. Kotlow in Albany.

      I know you said travelling to the US isn’t an option. Really, it wasn’t one I thought I could entertain either. But I was able to work it so that the trip, procedure included, cost us $1000. The works of it went on VISA. We ended up getting $270 back from insurance (the procedure was $450) and some of my doula friends held a bake sale at the local farmers market and made over $400. You might even be able to get your provincial health care system to foot the bill, if there aren’t any tongue tie professionals in your province. Especially if you apply before you go. (And if you go to someone in Canada – Toronto, Ottawa, Montreal have some of the best! – then you just bring yours and the baby’s provincial health care cards and the procedure will be covered anyways.)

      Anyways, long story short (ok, well, not so short) is that Dr. Kotlow was amazing. He validated everything I’d been experiencing. He examined Quinn the way he *should* have been examined. He took Quinn and lasered the TT and LT and brought him back to me less than 10 minutes later. Quinn latched on and nursed and for the first time it felt *right*. I cannot describe to you the relief I felt. My thrush, vasospasms, and blocked ducts went away. Quinn started nursing again in the daytime. No more noise, mess, clicking, gagging, aspirating, projectile vomiting, fighting, splayed hands, crying when he saw my breasts. He started WANTING to nurse. He started gaining weight! 1.5 lbs in the first 2 weeks! We’re now 4 months out from the TT and LT revision, and you wouldn’t know there had ever been an issue. And best of all, I get to enjoy my baby. I hadn’t realized just how much energy and effort all of that had been….just trying to feed him, trying to find someone to take me seriously, trying to find someone who knew what was going on. It had been so all-consuming for weeks and weeks.

      If you want to talk, just let me know. And talk to Jennifer. She’s amazing. She *is* a tongue tie professional! She helps mamas and babies with tongue ties on a daily basis. And she’s offering her help. And so far, it sounds like its the best you’ve got. Right now you’re making progress by treating the symptoms. But the root problem is still there. And it’s not going to get better on its own. It can also lead to problems down the road – continued GI issues, speech issues, and even problems with her teeth when they come. After all you’ve been through, you’ve got to be hesitant when someone is offering a solution…you’ve been looking for a solution for a long time! But what have you got to lose?

      • admin says:

        Re: Tongue tie

        I’m very happy for you that you were able to get it looked at and seen. I’m also happy that you had so much support, ability and interest in your community (as well as personal, financial and work freedoms) that ended up granting you the ability to travel and get the procedure done. However, not everyone is as fortunate and not everyone is blessed with the same privileges and abilities. While we would love to be able to do the same, it is not feasible.

        A thousand dollars is a lot of money. Far, far more than we have when we’re seeing a lot of positive progress at this time. Not to mention the ability to take time off work, or the physical ability to pick up out of nowhere and travel with people who have physical disabilities, and a child who is autistic.

        Once again, thank you for the suggestions and the information. It’s appreciated, and it has been on the table since this journey started. In a perfect world we would all have the same abilities, financial and work freedom and able bodies… but unfortunately it doesn’t often work that way. 🙂 Thanks for your understanding, and respectful discourse.

        • Anonymous says:

          Re: Tongue tie

          OK, so I’m going to be blunt, since that seems to be how you roll. Don’t bother responding, since I won’t be back to read it. I don’t like being responded to rudely when I’m honest to God trying to help. (If, after this, you want to talk, I’d be happy to. You can message me on Facebook.)

          You have an option here. You have the option of a very low risk procedure that could very well enable your baby to nurse. Exclusively. No Haberman feeders, no reflux meds (since reflux is caused by TT), no going back and forth to HCPs who have no idea what a posterior tongue tie is, let alone how to treat it. Does it suck that the option isn’t available in your province? Fuck yeah. It does. I know it. Does that mean you can’t still avail of it? No. There are obstacles. I do realize that. I also have an autistic child. I also have a disability. I didn’t just up and jet off to NY with my infant. It took some planning. I had to make arrangements. I had to scour the internet for the cheapest flight I could find. I’m not rich either. I’ve spent a good part of my life living well below the poverty line. You have options. You have a health care plan that will cover much (if not all) of the cost of the procedure, and very likely travel/accommodation as well. You could even fundraise to cover expenses if you wanted to. With the following you now have, you could set up a paypal account to accept donations. You wouldn’t believe how people (perfect strangers, even) are willing to help. I know I would. And you need 2 days. Two. Fly out one morning, fly back the next. It’s not impossible, and I’m telling you, as I sit here looking at my healthy, sleeping (former FTT baby), it is worth it. So worth it. I know flying half way across the country sounds difficult, daunting, and impossible. I thought the same. I even told a friend on the phone when I was talking to her, “I couldn’t fly to ALBANY!” “Why can’t you?” she said. I came up with a list of reasons why it was impossible. No passport, no money, what about childcare for Jesse while I’m gone? One by one we talked through them. It took planning. A lot of planning. But it wasn’t impossible.

          And if I seem pushy (no kidding, right?) it’s because I’ve been there and I know what a difference the procedure makes. And time is not your friend. The procedure is optimally done in the first month. Should really be done by 3 months (Quinn was 3 months 3 days). The longer you wait, the less likely you are to get the baby nursing well. Dr. Kotlow told me he’d successfully treated an 8 month old who’d managed to get back to the breast. So while this option is on the table now, it’s not going to stay there….at least not in terms of helping the baby breastfeed.

          I really do wish you and your family the best. Whatever you choose to do.

          • admin says:

            Re: Tongue tie

            I’m not entirely sure how you thought my response was rude, but I’m sorry if it offended you. That wasn’t my intention. I was merely trying to let you know that your situation is, and remains, very different from ours.
            Your rather intense accusations and assumptions about my abilities and motivations are not welcome, and I don’t appreciate it. I’m a little confused how you could read all of that, compliment my ability to work hard, and then turn around and insinuate that I’m actually not working hard and not willing to make sacrifices because I don’t have the option of picking up and flying to New York like you did… I’m glad you made it work, really, but you have to understand that not everyone on the planet has the same avenues open to them. Sometimes it’s harder for some people. Sometimes their bodies, their situations, their finances, and everything else in their life is different. And it would do you well to respect that when you’re making suggestions (or demands) on someone’s time and abilities.

            The whole point of this entry was to show that we’ve had some insane struggles but she’s making fantastic progress and is now stabilizing. As I type I’m laying in bed… breastfeeding her.

            Thanks for your thoughts.

        • Anonymous says:

          Re: Tongue tie

          You probably won’t publish this, but didn’t you just buy a brand new macbook pro? Last time I checked they cost well over $1000. And didn’t you travel much further to the US last year (before your kids were both in school full time) for a photoshoot? Look at that, we’ve covered the money issue and the ability to travel issue.

          What else is there? You turned down an offer of childcare recently and I’m sure there’s more where that came from. If worse comes to worse, there’s these magnificent inventions called babysitters, seeing as your kids are in school they’d only need watching in the morning and until your husband gets home in the evening. But that costs money, right? You have thousands of followers on here and many connections to midwives, doulas… Hm, I think I spy a tongue tie expert linked to a helpful organization that you dismissed rudely up there, and other mothers who I’m sure would be happy to make donations to cover the cost of childcare for two days (even I would be willing to help you in that area even though I’m obviously an awful mean troll). If your issue then is trusting a stranger with your children, you’ve got severely jacked up priorities. I shouldn’t have to say this, but if it’s Tempest’s autism, many nannies are trained to work with autistic children and if you’re worried about screwing up her schedule/stability, I’d say again, priorities.

          This procedure could fix every almost every problem you’ve painstakingly described above, drastically improving not only your infant daughter’s quality of life but yours and I’m sure your husband’s and other children too. I would understand if you were hesitant since obviously it’s a big deal, but speaking in an outright condescending, rude manner to experts and people with lived experiences who are going out of their way to help you with this is just ridiculous. It doesn’t even matter if you try to figure out if you can do this and discover it’s actually not possible, but not trying at all and acting like you’ve been insulted when someone says you should is really, really wrong.

          • admin says:

            Re: Tongue tie

            The Macbook was purchased with a backed tax refund, on a payment plan, so that we could also devote money to paying bills and debt.
            Travel photography is paid for in full by clients. Including lodging and local transportation.
            Policing the poor isn’t cool, yo.

            Turning down an offer for afternoon childcare on a day that it didn’t work out is not the same as demanding my friends come over to my house and stay here, miss work and care for my kids and my home for several days. Demanding that people pay me thousands is also problematic. She has tongue tie, not cancer. Aside from all of that, I described in the entry, she’s making improvements now and may not need that procedure.

            I wasn’t rude: that was incredibly restrained. This is what I said, since you seem to have forgotten:

            “There is no one here who offers treatment in the way you are describing, and while there are several practitioners in the USA who do… we are not in a position where we can afford to travel to another country and pay for the procedure, financially or otherwise.

            At this time she’s making progress, and responding extremely well to the therapies.”

            Please tell me how that was so horrible.

            I can tell you what’s rude: suggesting that someone is not working hard enough and doesn’t have proper priorities because they aren’t physically or financially able to drop everything, risk losing work and increasing hardship both on their family members and their physical ability over a procedure that she may not even need at this point is incredibly rude… especially by doing so after complimenting someone’s hard work in the same breath. It’s bizarre.
            My infant daughter went through hell with me and at this time is making improvements, is gaining well, is not in pain or at risk of intubation and continues to improve. Did you read the last part of the story at all?…
            A month ago I would have had a different answer, because she wasn’t making improvements. A month from now if it all goes to hell for some reason I may have another answer. But as I’m sure most people can fathom, every family has different limitations and situations and regardless of personal desire sometimes it’s simply not feasible.
            Last night I was told by someone that I could travel to Japan and Shanghai if I “wanted to do it enough”, because she herself and visited dozens of countries in her youth. It’s a lovely sentiment, but an extremely privileged thing to say. As is this.

            I’ve sincerely thanked everyone who has given advice and information, and have taken it all to heart. I greatly appreciate everyone who stopped by to give tips, share stories and heartache, give props and advice – but what I don’t appreciate is those who absorb just enough of the story to make relevant comments but not enough to know what the line is between helpful and hurtful.
            If this doctor was in my city I’d make an appointment tonight, regardless, but unfortunately there’s more to consider than simply “I don’t wanna because it’s tough” – clearly we’ve done a fuck of a lot in spite of it being “tough” – and redesigning the context of my responses so they play into the straw man you’ve built does very little to help the actual situation.

            You feel very passionately about this, as do I, and it isn’t off the table – it’s just more complicated than you have implied, or are willing to take into consideration. Thank you.

    • jenrose1 says:

      Re: Tongue tie

      Question… If this Dr. Kotlow could help, would you be open to a fundraiser to help you get there?

      • admin says:

        Re: Tongue tie

        Totally. Provided I could find the time and ability to get there, if all by myself (with Z, naturally) was feasible I would do it… but I have no one to watch my children while Curtis works, and it’s unlikely he’d get the time off work as he’s now one of the sole managers.

  • Anonymous says:

    I second, third, fourth AND fifth how important support is in breastfeeding. I’ve been following your journey with Zephyra and comparing it to something going on in my own life.

    At the end of August a very dear friend of mine had her first child. Right away they discovered that Baby couldn’t latch well–the LC’s at the hospital told her that she had a “short tongue”. Their solution was pumping to bottle feed–which of course produced NOTHING in the first two days, so they talked her into formula because Baby was “losing too much weight”–and a nipple shield. When they got home, it went downhill. Baby refused to nurse without the nipple shield, but couldn’t get enough fast enough with it and would freak out until given a bottle. Bottles made her choke and sputter until we found the Breastflow bottles. Even now when she drinks from a bottle she clicks constantly. For a while it got better, she was off the formula completely for a few days. Then it got worse. The local WIC office gave her a SNS to use, and that worked for a few days–until Baby got frustrated with the still-slow flow. Then she started pumping and bottle-feeding with breastmilk, while very rarely attempting to latch. Baby is now about 8 weeks and almost 100% formula fed. I tell you what, that stuff smells DISGUSTING. If I was a baby I wouldn’t touch it!

    It frustrates ME to no end. I had problems nursing at first too (my daughter has a classic tongue tie and it took my mother and my husband and their endless patience–plus my refusal to give her formula–to make it work. She did take bottles sometimes, because I work part time, but it was all my milk). I could SEE why Baby wasn’t nursing well (wouldn’t open her mouth to get a good latch), and I could understand what needed to be done–but I couldn’t be there to help. She’s a single mother, and while she lives with her parents, her mom works full time and her stepfather is no help. She needed somebody with her EVERY TIME she nursed to make it work and I felt so terrible that I couldn’t be there for her. It was so sad to realize that she gave up on something she wanted to do for lack of support.

    You have done an amazing job with Zephyra, not to mention you’ve been taking care of a 4-year-old and a difficult 8-year-old at the same time. You are wonder woman!

    ~Colleen

  • imperfectme says:

    Every time you post, I’m blown away by how similar our situations are, and yet how different at the same time. It’s fantastic that you at least got to explore a bunch of possibilities with different specialists. After a few tests ordered by our regular pediatrician came back normal, my daughter’s case was basically chalked up to being “behavioral” and simply “refusal to eat”. Because, you know, a healthy baby will just starve herself. It took until two weeks before her first birthday to even get a swallow study done. We did see a speech pathologist early on, but only twice in three months, and she was very nice but completely useless.

    That three month point was where everything went to hell for us too. But the lack of any medical professional with a clue, combined with my having to return to work and my extreme inability to respond decently to pumping was more than I could overcome. I’m glad that you guys are making it through. I know all too well how hard of a fight it is, and you’re doing amazingly.

  • Anonymous says:

    Fantastic that you got all this together in one spot for yours and other’s reference. As I suspected, your unfortunate situation has helped my bf ‘failures’ feelings to heal more. Although my DS problems aren’t as numerous as Z’s, I am realizing and accepting three huge booby traps for us were a) uneducated bf professionals in my small city b) first baby learning curve c) lazy baby – he’d [sort of] latch and then just clamp on and fall asleep. He still just lets go of his bottle and blisses out during his feeds (at 20 months)! Thank you for sharing your challenges and best of luck. Now I’m going to look up this layering lip ties idea… -wiggly widget

  • Anonymous says:

    Fantastic that you got all this together in one spot for yours and other’s reference. As I suspected, your unfortunate situation has helped my bf ‘failures’ feelings to heal more. Although my DS problems aren’t as numerous as Z’s, I am realizing and accepting three huge booby traps for us were a) uneducated bf professionals in my small city b) first baby learning curve c) lazy baby – he’d [sort of] latch and then just clamp on and fall asleep. He still just lets go of his bottle and blisses out during his feeds (at 20 months)! Thank you for sharing your challenges and best of luck. Now I’m going to look up this layering lip ties idea…

  • Anonymous says:

    Wow

    Other than the massive amounts of tests and specialists, I have been dealing with a bad latch and poor growth, along with a food allergy and reflux. Where do you live? My daughter is 6 months now. I kept thinking the latch would get better, and with a nipple shield it wasn’t AS painful for me. All of a sudden a few weeks ago she refused the nipple shield, and we’re back to killing my nipples. I have moved and like I said, dealing with food allergies, new job, daycare, PPD, that I have just been “dealing” with the horrible latch. Everyone around me says to just give formula. I have no judgement towards women who do, but God bless America, I can’t make the switch. Thankfully, she will take a bottle. Hope you get some answers soon!

  • bicrim says:

    As much as I’m sorry you have to deal with all of this, I am so happy to see a mother overcome incredible obstacles in order to keep a baby nursing. I went through a great deal in order to nurse my kids, and I will admit that learning not to be incredibly bitter at people who quit for bullshit reasons has been very, very hard. Coming from that place, it was interesting to read your “giant disclaimer”. I could relate to much of it, and it is true, but I wish it was not necessary for you to make it.

    This is a tough subject for me. I would love to be able to have this conversation with you and other like minded people in a private forum–there is a lot to work through, both emotionally and intellectually, and I don’t want to do that where the anon trolls are, honestly.

    You are doing so well.

    • admin says:

      I understand, and I feel the same way. It’s extremely hard, and I’m trying to see it from a different angle.

    • jenrose1 says:

      Likewise. After nursing Shiny for as long as I did, and as hard as it was, it makes it harder for me to be patient with, “I have to give him supplemental bottles because otherwise he doesn’t sleep longer than 2-3 hours.”

    • admin says:

      I gotta say, I appreciate you being a tolerant and sensitive IBCLB even more after meeting the one downthread!!

      • bicrim says:

        those ladies were out of control. Oh, I never asked you, did you get the Haberman Feeders I had sent to you?

        • admin says:

          Oh, yes! Thank you SO MUCH! I’ve had some amazing outreach from mamas on here. Another mama sent me 575 Lansinoh breastmilk storage bags, enough to last me until she’s at least one!

          The Haberman feeders you gave me with the normal teat actually ended up working BETTER than the mini teats she was using before, likely because with the suck training her gag reflex has lessoned significantly and she can now take it further into her mouth. It’s helped a lot. Thank you so much.

  • jemjabella says:

    You are amazing. I thought I was stubborn in my breastfeeding journey, but you top me by miles.

  • gardenmama says:

    Holy shit. I knew you were having problems feeding her. But seeing it all gathered in one place like that makes it really seem overwhelming. I’m glad you haven’t let her issues overwhelm you and you are getting help that actually seems to be helping her.

  • altarflame says:

    I understood that the nurses in the NICU were really freaked out that Jake (in his first 3 weeks of life) seemed to NEED and thrive on 6 ounces every 3 hours….but I didn’t understand how enormous that amount must really be. I was looking at ounces and feedings for Zephyra thinking “HOW IS SHE ALIVE” but then I thought back to the continuous state of shock in the nurses, and the doctorS who said “this can’t be right” when they looked at his chart… (it was gradually increased over and over from their baseline start point…he never spit up or anything like that)

    • jenrose1 says:

      Shiny’s feeds at 8 1/2 pounds were 2-3 ounces, every 2-3 hours (weighed before and after nursing, then pumped enough to get us to “goal”)

      6 ounces every 3 hours is HUGE.

      • altarflame says:

        Since I never measured ounces for a baby before him, as they just sucked at the breast, I really didn’t know anything about what was or was not an appropriate amount!

        • jenrose1 says:

          I’m not saying it’s inappropriate… I’m just saying that compared to what was necessary to put between half an ounce and an ounce of day of weight on my slow gainer, it’s a lot. Her big sister was 24 pounds at 6 months, so god only knows how much she was getting per feed…

  • Anonymous says:

    Tongue tie, et al

    I hope you can get someone to seriously look at the tongue tie. Can you only see that one ENT for it? Here in Ontario a variety of professionals deal with this, from pediatricians, oral surgeons, children’s dentists, and ENTs. I was told that a local oral surgeon who specializes in cleft palate babies also does tonge ties (probably because they are more likely to accompany a cleft?). There is some suspicion that tongue tie can cause reflux, as well as swallowing difficulties, btw. See Catherine Watson Genna’s information, articles, etc. I’ll bet if you emailed her, she would respond. She is an IBCLC, and very knowlegeable about tongue tie.

  • Anonymous says:

    I’ve never heard the word “galactagogues”. I like your list of how you would proceed with breastfeeding issues, and mine would probably be the same, except I think I would have forgotten about the option of galactagogues. So thank you for posting about this because it makes me more aware of all the options available.

    Do you know how these issues will affect Zephyra as she grows? Will she need OT and speech therapy? Will she have trouble eating solids too?

  • _delphiki_ says:

    I kept Lenny fed with a finger feeder. It had a tube connected to an open top- like an SNS but a little different.

    http://www.affordable-breastfeeding-supplies.com/medhazfin.html

    When he was younger and just couldn’t get anything I would hold the feeder over his head and gently blow into it so it would drip into his mouth. This made him want to suck on my finger to get milk and he didn’t need to work very hard because he had a very weak suck too. I agree, I didn’t treat formula as an option for a long time. It wasn’t until he was losing weight on breastmilk, even donor milk, that I resorted to formula. He isn’t even on regular formula- he’s on Alimentum Ready to Feed, which is the only type he can tolerate. He quickly gained weight on that.

    • admin says:

      Tube feeding was not an option due to her inability to suck. I have a tube feeder already and we were trying from her first week or two onward.

      • _delphiki_ says:

        He didn’t have a suck at that point either, thus the blowing it into his mouth gently on the top of the feeder. When he’d try to suck, then I’d blow on it so he learned that even trying to suck got him milk.

        He has a severe tongue tie too along with weak mouth muscles. Even clipping it didn’t take care of most of the issues- it just gave him enough mobility to get over his bottom gums. It’s just been now at 9 months he can take a bottle properly since we’ve been doing mouth exercises the whole time too. He prefers to eat because it’s faster for him.

        I probably could have breastfed him the way you’re breastfeeding Z if he didn’t have all the allergies too.

        • admin says:

          That’s how we did it too! The only other way I got fluid into her when she was wee was to modify a Playtex nurser with a cross-cut nipple (cutting into it myself) and using a spoon to push the milk out.

          Unfortunately that didn’t work out well, as her forward-backward movement was so poor the milk would simply fall out or she’d badly choke.

  • sandokai says:

    Interesting. I didn’t even know those types of experts or tests even existed.

    While you’re putting 16-17 ounces of milk in the freezer, how many ounces is she also drinking?

    It is crazy how the hospitals are so contradictory. Like the one where I gave birth giving people boxes of formula labeled “For the breastfeeding mother.” WTF?

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