Tuesday, March 9, 2010

The perfect storm of breastfeeding problems, Anne's story

This is the second in my series of breastfeeding victory stories.  I share these in hopes of inspiring others, and questioning the all too common "I just couldn't breastfeed" mantra spewed by the masses.  Like I said in the first post, Jennifer's Story, these womens' stories are the exceptions, not the rules as to how breastfeeding "normally" goes, but they are very important nonetheless.  I hope that you can walk away from this feeling like "Hey, if she can do it, I can do it".  Parenting is tough by nature.  If our child had trouble walking, reading, talking, or any other natural thing, we wouldn't give up on them.  We wouldn't say "Oh, I just couldn't figure out how to get her to walk".  Mothers like Jennifer, Anne, and the others I will share with you in the future didn't just sit back and say "Oh I couldn't breastfeed".  Read on, and enjoy.

I share this in the interest of demonstrating that what might look like an impossible situation CAN be overcome. Without the right support and information, I most definitely would have been one of the moms who "couldn't".  If I can give even a glimmer of hope to any mom out there who is struggling like I was, it is all worthwhile.  I tried to condense it somewhat, but in order to really tell the whole story I had to, well, tell the whole story. Buckle your seatbelt and bear with me.

So this is the tale. I’ll start at the end: Lily will be 16 months old as of August 14th, and we have been fully and purely on the breast for just about 11 months now. It took a long time after finally succeeding for it to seem real. It’s a dream come true, and something I’ve worked for harder than I ever worked at anything in my life, hands-down.

Lily had what amounts to a Perfect Storm of elements stacked against her. They were:
  • A posterior tongue tie. This was probably the most significant hindrance to her nursing. For those who don’t know, a tongue tie is a condition where the frenulum underneath the tongue is too restrictive for the baby to latch on properly. There are 4 different grades of tongue ties, too. Some care providers may mean well but are not familiar with anything but the most obvious tie – the anterior one that’s right up at the front & very obvious and stringy. Hers was much further back, and the tongue itself appeared to be 'bunched' in the back of her mouth. Some babies are able to nurse with some kinds of tongue tie (though it’s often with the cost of pain to the mom), but this one was totally non-functional.
  • Extreme molding to her skull from birth. All babies born vaginally have some degree of molding – the fontanels are designed to work that way – but this was really dramatic, and it didn't normalize after birth the way most babies' heads do (normal nursing actually helps this process along). This resulted in two things: first, there were some structural problems with her jaw function (think about how interconnected everything in that area is), making it a bit recessed; she simply could not open her mouth wide enough to latch. Second, the molding may have contributed to a couple of neurological delays (nerves essential to coordination can be impinged due to molding and also the associated swelling). When her suckle was checked by various care providers, they all noted the lack of organization.
  • Being an early arrival. She was born at between 36 and 37 weeks – she qualified as full-term according to her newborn exam, but was just an early bird. According to a lot of practitioners, the early ones can just have a harder time getting started sometimes. This caused some concern in the first few days even BEFORE we started to figure out that the two issues above were going to cause serious problems. She had no rooting reflex at first, and for the first 2 days would barely suck – whenever an expert finger was inserted to assess what was going on, rather than sucking the way normal babies do, she would mostly just clamp down on it. I had to squeeze colostrum into her mouth, and out of concern that my milk wouldn’t come in without her actively, regularly suckling, I started pumping right away – and thank GOD I did (more on that later).
  • My nipples being small and kinda flat. If there were no other issues, a normal baby would probably have done okay with me, but Lily’s challenges made this an added factor.
  • And if the above weren’t enough, her tongue, even after being clipped, is a small one, and her palate is very high (this is common with tongue-tied babies) – making it very difficult for her to get my nipple in her mouth far enough to pump it against the roof of her mouth, the way an efficient nurser can.

Are you exhausted yet?

So. Man, I’m not sure where to begin with explaining what our approach was. The first few weeks were so terrifying, which made way for a prolonged period of stressed-out, anxious grief, and then settled into just months upon months of hard, hard work. All day, every day, every feeding, and with all the work that surrounded every feeding, including pumping every 3 hours around the clock, after every feeding, no matter what. This included setting the alarm clock for 3 am and 6 am, even if Lily was asleep - I couldn't risk going more than 4 hours without pumping, as prolactin levels will then drop, and supply is compromised.

I should also note that due to a complicated if temporary long-distance situation, her father, Aaron, was only with us about ¼ of the time, so the rest of the time I was also doing this as, essentially, a single mom, living in a pretty isolated area, with one good friend who was willing to come by about once a week. Aaron was a supportive as he could be under the circumstances, but I was still just plain alone the majority of the time. The Food Network was my most significant adult contact on a day-to-day basis.

I think I can best illustrate it with a list, in order, of the techniques and treatments we used.

Finger-feeding with a syringe. The story of our first two weeks is really a saga in itself, and as this is already verging on epic, I won’t recount the entire thing. Here’s a thread I started at MDC when she was two weeks old describing the situation at that point, if you want the details. Suffice it to say that it became clear that she simply was not latching on. Syringe feeding was recommended by the first lactation consultant that helped us, and it did the trick to get food into her (always priority one) while avoiding nipple confusion, which is extremely important, but it also did nothing to help her learn to latch on. I kept trying to offer the breast at every feeding, but had no real skills or game plan – and I think we had come to the end of this LC’s ability to help us. This went on for a ridiculous 5 weeks.

2. During this time, I started taking her to get
craniosacral/chiropractic work, starting at about 3 weeks. This was to help with her jaw function, to get her to be able to open her mouth wide enough to latch, and also to encourage the tongue to come forward. This would also help with some neurological disorganization (the coordination required for nursing, and taken for granted with most babies, was simply not there). She has gotten regular work done ever since, though decreasing in frequency after the first 4 months. This was very important, despite our financial hardship, and helped tremendously in ways that extend even beyond breastfeeding, but during that first 5 weeks, I was hoping that the combination of finger feeding and craniosacral would cause her to magically be able to open wide and latch on all of a sudden. This was not to be – there was no way this could happen without . . .

Getting her tongue clipped. Her tongue tie was finally identified by the second lactation consultant we went to, Jennifer, an absolutely brilliant IBCLC that came highly recommended by several different people who had had difficulties similar to ours. There are 4 different grades of tongue tie, actually, and hers was a posterior one, probably the hardest to identify to a non-expert. Here’s a great list of resources about tongue tie, including an article written by Dr. Elizabeth Coryllos, the pediatric surgeon who performed Lily’s clipping.

4. My mom was visiting from out of town when I went to get this clipping at 5 weeks, requiring a drive to Long Island with our 5 week old babe. After that was taken care of, Jennifer had us switch to
 finger feeding without the syringe – simply putting one end of the tube into a container and requiring Lily to much more actively suck it out. This didn’t last long, as it was taking her about an hour and a half to finish a feeding of about 2 ounces, giving me only an hour or so relief in between each feeding, in which time I had to pump* on top of doing everything else involved with caring for a baby, as well as, ya know, eat and pee and maybe even sleep occasionally.

*NOTE: Speaking of pumping, this was, despite the work and time involved, an extremely lucky break. Attempting to mimic my baby’s feeding pattern, I pumped for 15 minutes after every feeding of hers (so on top of at least a total of four hours of that combined per day, there was the associated cleaning of equipment and maintenance of the milk). I was blessed (though it’s a mixed blessing) with an oversupply, and by the time I went to see Jennifer, my freezer was overflowing and I was producing enough milk for three babies. Fortunately, she had a few clients who needed donor milk, so I was able to make use of my oversupply and help other moms and babies – this felt really good. I’m grateful beyond words for this, as it meant that despite our extreme challenges, Lily has only ever had my milk. Not only did she never have to take any formula, preserving her 
virgin gut, but she never even had to take the next best thing to my own milk, donor milk (though I would never hesitate to use donor milk or cross-nurse if necessary). This is not something to take for granted - as I learned through Jen’s weekly support group, there were plenty of moms struggling with very similar situations who also had to deal with low supply on top of everything else.

5. As I was saying, that new method of finger feeding was totally nonfunctional, she just was not strong enough to do this yet, and we dropped it after less than a week. Finger feeding really is not meant to be anything more than a temporary means of feeding (which avoids nipple confusion, which is the advantage), anyway, and by 6 weeks it was getting ridiculous. So at that point it became appropriate to switch to a 
very specific upright bottle-feeding technique, sometimes known as “paced” feeding. It’s true that introducing bottles carelessly can result in nipple confusion, but Jen explained that nipple confusion is really more accurately described as flow confusion. If you hold a baby at a reclined angle and basically dump the bottle into his mouth, the difference in flow between that and breastfeeding is the difference between drawing liquid out of a straw and doing a beer bong (which is a big part of why bottlefed babies can so easily be overfed, but I digress). In paced feeding, the baby is held upright in a seated position, and the bottle is at a 90 degree angle, so the baby really has to actively draw milk out. I also used a type of bottle called Breastflow to do this, which is designed to encourage babies to use similar action to that of breastfeeding (though it's never really going to be the same).

6. But as you can imagine, just doing this alone wasn’t going to get her back on the breast. I did this for several weeks just to try and get her strength and weight up (she was doing okay, but just felt she needed the extra safety net), but knew Jen would have me trying something different soon. So, we tried using 
the SNS with a nipple shield. The Supplemental Nursing System uses the same kind of tube used for finger feeding, connected to a tube of milk you attach to your clothes, and you tape the tube next to your nipple (lots of adoptive moms have used this to induce lactation, training their babies to nurse without even having to pump). Because of my flat-ish nipples, we also had to thread the tube through a nipple shield, since she was nowhere near able to latch on to my naked nipple.

This was an utter nightmare, honestly. Every feeding became a wretched ordeal, trying to thread the tube and get the shield on while she cried, then either one turn of her head knocked the shield out of place or one flail of her hand yanked the tube out, and we had to start it all over again. After a few days of this bullshit, I decided that we HAD to try something else or I would soon be giving up & EPing for her with bottles.

7. So I basically went 
back to paced bottlefeeding for a while, and then we decided to try and work with the nipple shield before and after each feeding, getting her to latch on before switching over to the bottle. (It took a while for her to even be able to get onto the shield itself – I eventually coaxed her into it by putting it on my finger for her to suck – she was used to sucking my finger for comfort – and this helped her get used to the feeling and to open her mouth progressively wider. I then was able to get her to latch on to the shield at my breast, however ineffectively at first.) Because it was a big interruption to her to sit her back up each time, I figured out a way to hold the bottle so she could lay on her side close to my body, like in a standard nursing 'cradle hold', while still keeping the bottle horizontal & at a 90 degree angle to her. She got better and better at this switcheroo, especially as her mouth and tongue were getting bigger (Jen and her craniosacral therapist both agreed that a lot of this was just a matter of time, letting her grow, and finding a way to keep her active at the breast in the meantime, until she was able to get entire feedings that way). Her suckling action started to induce letdowns and she would actually nurse through the shield for a few minutes before I switched her over to the bottle.

This actually led to one of my sort of premature breakthroughs (which happened about three times – I’d get my hopes up and think we were further along than we were, and then have to take a step back a few days later). At about three months, she was doing so well with the shield that I tried, for about 2 days, to go off the bottles entirely – hoping to just nurse with the shield until she could latch on without it – but it was too much too soon.
Digression: There was a point at about 3 ½ months when I was so close to giving up. SO close. I was so wrung out and demoralized and tired of struggling through every moment. I felt like an absolute failure, and had never wanted anything so badly in my life, or worked as hard for anything. I bargained, I begged, I prayed (and I’m not usually the praying kind), I sobbed – it’s no exaggeration to say that I cried more than she did. At that crucial point I really feared that it was just not going to happen. This didn’t just make me feel like a bad mother, it made me feel like I was simply not really her mother at all. It’s hard to describe this kind of hell to someone who hasn’t been there. Not being able to feed your own baby, it is utter despair.

The real breakthrough moment was a sign of hope for the future that came about almost impulsively. I had been working with the shield at the beginning and end of each feeding, as described in step 8, and in between feeds I also tried to occasionally offer the breast, with shield, for comfort, to try and get her associating the breast with comfort as well as food (she couldn’t physically take a pacifier, which was fine by me in principle anyway).

One night in about mid-June, we were lying in bed and she was almost out for the night, but started to fuss a bit. I had been in the habit of offering her my pinky occasionally when this happened, but I wanted to try comfort nursing her. Alas, the shield was all the way in the other room, and I didn’t want to get out of bed if I could help it. So almost impulsively, I positioned her and moved my breast in the direction of her mouth. It wasn’t even all that precise, as I was doing it in the dark – but she latched on. SHE LATCHED ON. And “nursed” (not really swallowing, just comfort-sucking) herself to sleep. I lay there in shock, my mouth wide open, afraid to move or even breathe, wanting this moment to go on forever, with tears of joy streaming down my face. It felt like nothing short of a miracle.

So that proved it – there was hope. The next day things we were right where we had been, but still, there was proof that it was possible. I had to continue, but it was still a brutal struggle. I started to wonder how I could try to find some peace with it – I knew of a few incredibly devoted mothers who had exclusively pumped for their babies for a year or more. That way, even though she would be “bottle-fed” technically, she would still be getting breast milk (as far as I’m concerned, as long as I was able to lactate, this was the absolute minimum I could do; formula would never be an option as long as I had the ability to produce milk). And that would be the most important thing, of course. But by that point she had given me a glimmer of hope in her occasional bareback comfort nursing. She was nowhere near efficient enough in her latch to get a full feeding that way, but she WAS getting on to the breast in her own way.

So I was torn – pump and bottle-feed for nourishment and also get the bonding of comfort nursing. Could we be satisfied with that? It “wouldn’t be the end of the world”, as some pointed out, trying to be supportive. And they were right. But the thing that nagged at me, as I tried to see if I could accept this, was that she had come so far JUST to get onto the breast for moments at a time. How could I give up now? It would be unfair to her – it wouldn’t just be giving up, it would be giving up ON her. Her progress had been slow, agonizingly so, but she was progressing. Baby steps, two forward, 1.5 back, true, but it was still progress.

I decided that if I was going to give up, I had to make absolutely sure that I had done absolutely everything that I possibly could. And there was one more thing, the thing that I had been so reluctant to try because my first experience with a similar device (the SNS) was such a nightmare. 
The Lact-Aid.

Jennifer insisted that this really would improve her latch and train her to be at the breast for entire feedings, and that it wouldn’t be as bad as the SNS, since the device itself is more user-friendly (utilizing a bag that is worn around the neck instead of a tube clipped to the clothes, for example), and since I would not have to use a shield at the same time anymore. I was reluctant, and put it off for a few weeks, because my experience with that SNS was just so godawful.

But finally, after treading water for awhile with the shield-n-switch, I decided that if I wasn’t going to ‘make it' with Lily, if we truly were unable to nurse and I had to EP for her, I could live with and make peace that – but only if I had really tried everything. Including this. If I gave up before I tried the Lact-Aid, I’d always wonder if THAT would have been what helped us finally succeed, and I’d never, ever forgive myself for not being willing to try.
8. So, of course, this is what I eventually did. I went for the Lact-Aid. I had my doubts, but my last one evaporated when I was having trouble coming up with the $65 for the device –and we found out within a day that another mom in our nursing support group just happened to have an extra one (missing one minor part, hence the replacement that she got). So I threw myself into it.

This was a LOT of work, setting up the apparatus each time, cleaning after, plus I was still pumping 8-9 times a day right after each feeding, and the feeds could be grueling. So often she’d have a decent latch but the tube wasn’t all the way in her mouth, or the tube would be good but she’d barely have the tip of my nipple, so I’d have to start over. Then of course there were the times that she’d catch the tube with her hand or turn her head, and again I’d have to reconnect everything. I also had my doubts about how this would improve her latch mechanics. But I decided to just throw myself into it and actually 
trust the process and try not to overthink everything too much.

Well, it took over a full month of working with the Lact-Aid, but slowly and surely . . . it did the trick. We started out using the tube throughout each feeding, and after a while, it started to seem like she was getting overwhelmed with milk – because she was getting so much from my nipple AND the tube. At that point I would begin some feeds with the tube pinched off, and then release the supplemental milk only when she started to slow down. Long LONG story slightly shorter, this paved the way to start doing some feeds only at the breast, and after about 2 weeks of her only getting about 1 to 1.5 oounces from the Lact-Aid total each day, we decided it was time to go all out.

From there, I continued to pump after feedings for another month, even though it was no longer to create milk for supplementing, it was to make sure my supply didn’t drop too quickly. If you’re too abrupt, you can end up with plugged ducts, mastitis, or even risk your supply dropping TOO much despite having had an oversupply (if your breasts are suddenly never being emptied, this can happen). I gradually started to eliminate pumpings, dropping one about every 4 to 5 days. It took another two months to eliminate all but one daily pumping - which I continued for a while longer to make sure I have reserves, and just to be on the safe side (though if you saw the motherload in the freezer you’d laugh at my concern about the reserves).


So there you have it. She did it. It took five months, but she did it. And frankly, I plan to let her go just as long as she likes – my goal is for a minimum of two years. If she really wants to wean after that, I’ll follow her lead, but no way I’m kicking her off myself.

If you made it through all that, I’m impressed, and also grateful. It’s been good for me to write it out – I haven’t been able to get it all out before now, both because I literally didn’t have the time, and also because I didn’t want to start talking about it unless – or until - we ‘made it’. There are still times when I fear that it’s all going to fall apart, every time we have a crappy feed, especially since we’re just getting started at an age when they’re extremely distractible (nursing in public is almost impossible). But I have a bit more faith every day. NEVER take it for granted if you are able to nurse, and thank your lucky stars even further if it comes relatively easy to you. There are women out there who would give anything – everything - to be able to do what you’re doing.

I give thanks every day for what we’ve been able to do, and for the many helpers we’ve had along the way, from the fundraiser some friends helped me organize to pay for Jennifer & her craniosacral therapists, to the woman who gave me her Lact-Aid, to the phone calls that came in when I needed to be talked off the ledge but was feeling too down to even ask for help. and especially for Jennifer herself, without whom we never could have done it. They are all answered prayers – and that’s also a surprising thing; this experience has (don’t laugh) restored my faith in some form of God. I’m not exactly sure what form this will take, but it’s there.

So there you have it. The crazy thing is, believe it or not, I could write more, so intense and intricate was the whole experience. If you actually made it to all the way through this, I'm sure that sounds ludicrous, but it's true.

The end . . . though it's really just the beginning.

(Epilogue follows in the next post: 
Three Lessons.)


Lisette said...

what a wonderful story. Thank you!

LivandLex said...

What a wonderful success for this mom. Unfortunately I was drawn in by the lead in comment about not being able to breastfeed being "spewed" by the masses. While I agree that lack of information and support is a HUGE problem and a big reason why many would say this I am still incredibly offened. As a mom who found the information and support just a little too late and still TRIED and failed it is so frustrating to see comments like that. I nursed using an SNS for over 4 months to find the amount of supplement in the supplementer increasing day by day, not decreasing as you would expect with an increased milk supply building. Around this time my starving baby began arching and outright refusing to breastfeed. I feel fairly confident saying that together, and with professional support my baby and I did all we could to initiate and continue breastfeeding and still we could not. Seeing comments such as your sweeping generalization bring back all those feelings of loss and mama guilt. What we need is better education and REAL support. Not sweeping generalizations and trying to guilt people into breastfeeding their babies.

Anonymous said...

Wow. Thank you so much for sharing your story. What an excruciating experience that must have been for you. I had trouble nursing with my first as well due to a) drugs given during labor made my daughter lethargic b) nearly flat nipples. By two weeks or so we were on track, so it was nothing like what you went through. My other children (I have 4) were birthed at home with no interventions and nursing went well for us. I know I am very fortunate.
What a wonderful gift you are giving your daughter. Many blessings!

sharon said...

AWESOME!!!!! I only have the teeniest of inklings of experience with about 6 weeks of my son (with 4 other children to care for) having week/immature muscles for efficient sucking. My accidental breakthrough was when he had the flu and knowing that he wouldn't keep much down and esp with the faster paced bottle (didn't know about paced feedings) that his inefficient nursing would be perfect through his illness was when i realized he had matured. So I can at least imagine the emotional hell and absolute determination you experienced. I do not even know if I could have been as determined as you with 4 other kids to care for at the same time for sure. BRAVO!!!!

Anonymous said...

I am so glad your story has a happy ending. I faced many breastfeeding challenges with my first child, too. It took a little over 3 months for us to overcome all of our issues (and then we had some MAJOR biting issues when he was 10-12 months). I am happy to say that breastfeeding my second child has been incredibly easy by comparison.

Anonymous said...

Amazing story. I myselfhad nursing issues and complications but nothing like Anne's I commend her commitment and hard work and I am sure your daughter does too. Kudo's to this mama!!

Meesh said...

Amazing story - thanks for sharing! Breastfeeding is the most beautiful and wonderful thing, but it can also be the hardest. It's so worth it though, every second, day, week, month and hopefully year, I cherish breastfeeding my daughter.

The Pure Mom said...

Great story! My baby had a posterior tongue tie as well - and we also had Dr. Coryllos clip the tongue tie. It was a bit scary in the hours after the clipping (bleeding), but it was worth it in the end. Dr. Coryllos is very sweet and caring woman. She called quite frequently to make sure my baby was doing okay :)

Brenna G said...

I bow down to your breastfeeding commitment to your daughter. You are an inspiration and you should forward your story to Leaven.

megan said...

Wow! Way to hang in there. My daughter(third baby) was also tongue tied but we didn't realize it till she was three months old. Everyone kept asking me if it hurt when she was nursing because she was "chomping", but it didn't. She had incredible suction and was sucking through let down but that was it. She was born at 7 lbs and at 3 month when she had her surgery she was 9lbs3oz. The ENT was amazed at the fact that she could nurse and said that with her tongue formation she absolutely should not have been able to nurse. Nursing got harder for her as she got bigger because I was having a hard time getting my nipple in her mouth far enough, which started to lead to decreased milk supply. The week before her surgery I EP (and bottle fed so she didn't lose any weight)with a handpump, one side at a time, it was a really really long week. She actually had "lights out" surgery at a Children's Hospital, her tongue was so depressed that the veins under her tongue were clearly visible. After her surgery she nurse like a champ, we were able to get my supply back up with nursing supplements and she nursed till almost two. It was totally worth all the extra work.

Deborah said...

wow. Beautiful mama! I am SO happy for you and your babe!

I've been there too. I feel like I could have so much more to breastfeed my daughter,but support was lacking.

I even had help from the food stamp people from the gov to breast feed,but I think they are really stupid. They had a place to breast feed,but they were always closed.

Anyway..I breast fed for about a month. I bought two pumps,that weird tube thing and hired a LC. My daughters doctor said that we had to use formula if she didn't start gaining weight. She said she lost too much. (?) That might be a common thing to say...dunno

I felt that the LC I hired wasn't very helpful. She saw me through one feeding,gave her advice and then I could get in contact with her through the phone. I never saw her again. She was the only woman I knew at the time who maybe felt the same way I did.

I would have anything to feed my own child and I am thankful you found your inner strength. I wish there were more breast feeding stories like this for women to read. For my next baby I will not give up! Thank you for sharing!


Anonymous said...

Wow! I have been known to say "If I can do it, anyone can!" - I have inverted nipples and both of my jaundiced babies took three weeks to get the hang of it. I had the random good luck of having a Nurse Practitioner LC from the County pay me a visit, and she was wonderful. Patience was what I needed, and everything turned out just fine. Now I know how easy, relatively speaking, I had it! Congratulations to all the moms out there doing their very best to make the right choice for their babies!

Anonymous said...

Incredible story. You have my full and utmost respect! And I thought I had a hard time breastfeeding! You are a wonderful, beautiful mother.

Jacque Williams said...

First off- I love you! Don't know you, yeah it's creepy, but after reading your story I really do. I so admire your dedication. I know that struggle. It is hard just convincing yourself to go the next step in your 8000 process system that day, let alone keep it up so long. I know what it's like to not even feel like her mother. My oldest was a most critical level nicu baby. Nutrition was a major obstacle. I cried and cried when I read the part about that first comfort latch. I know that joy. When your heart just LEAPS. I felt like I couldve moved mountains. Mine was 5 weeks old and the week before was the first time I'd ever even been able to hold her. I felt like her Mom again.

I am just in awe of you. What dedication. Raw endurance. Thank you so much for sharing your story. You will be such a resource to your community. Not to mention a fantastic parent. God bless you, what a woman.

-Jacque Williams

mystic_eye_cda said...

More on clampdown reflex:

Clampdown Bite Reflex

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