Sunday, February 21, 2010

Carnival of Breastfeeding: How You Overcame Challenges
A Rough Start

Welcome Carnival of Breastfeeding readers!

This month's theme is "How You Overcame Challenges."

Please visit the other carnival participants, listed below.

(More entries will be added through the end of the day on February 22, 2010, as they are posted - check back!)





This post was written to submit to the carnival back in May, when the theme was "Share a Story," but I missed the deadline.

At the time, I said I'd resubmit it if another appropriate theme came along, like maybe "Overcoming Breastfeeding Challenges."

Well, it has, and so I am, after making a few little changes, to bring the story up to date.






For as long as I can remember, I have wanted to be a mother.

When I became pregnant at the age of thirty-nine, by in vitro fertilization using my partner Shrike’s eggs and anonymous donor sperm, one of the things I looked forward to most was breastfeeding.

It was something I've always found fascinating, so I’d done a good bit of reading and I had also learned a lot about it from my older sister, LadyKay, whose children were breastfeeding when I was in my late teens and early twenties, so I went into it thinking I knew pretty much all I needed to know, and expecting that we would have no problems.

Boy, was I wrong.

Our daughter, Peeper, was born four weeks early. I delivered her vaginally, with no pain medication. Shortly after her birth, we were told that she weighed five pounds, four ounces, and that she was doing very well, especially considering her size and age.

I gave her an opportunity to nurse fairly soon after birth, with the help of my doula and La Leche League leader, DoulaK.

She latched a bit, and DoulaK said that her technique looked good, and her suck looked strong, but she wasn't especially interested. DoulaK told me not to worry, because she had twenty-four hours before the doctors really expected her to do much nursing.

That night, and the next day, I gave her several opportunities to nurse, often with the help of one of the midwives or labor and delivery nurses. She had a couple of pretty good sessions, but was still very sleepy and not especially motivated.

Her mouth was so tiny that it was difficult to get around my nipple, let alone to get the good, deep latch that she really needed.

Another problem she was having with latching was that my areolas were swollen, making the nipples stand out less, so there wasn't much for her to grab on to. One of the nurses commented that, "Oh there's often some swelling after delivery, that will go away."

I learned later that the swelling was probably exacerbated by the IV fluids I'd received during labor, and a couple of days later, from engorgement as my milk came in, but that a simple reverse pressure technique would have temporarily relieved it, and made my nipples more accessible to her.

One of the lactation consultants stopped by to see us the morning after she was born, but Peeper had just finished nursing, so we didn't put her to the breast for the LC to observe.

One of the first things she told me when she walked into the room was that, "Most of our preemies need to be supplemented. I recommend a breast pump and a nipple shield and she may need some formula."

A while later, both devices were delivered to my room, with little or no explanation of how to use them.

When Peeper was about twenty-four hours old, she was weighed again, and was now four pounds, four ounces.

The pediatrician who saw her that night said that he didn't believe she had really lost almost 20% of her birth weight, because she “looked too good.”

I also later read that babies whose mothers have received IV fluids during labor are often born retaining quite a bit of fluid, and can easily lose 20% with no ill effects because they started out ahead of the game.

The doctor told us that he suspected Peeper's birth weight wasn't accurate, but that we'd have to assume she had lost a full pound, and go from there.

I agree that the birth weight wasn't accurate - or, possibly, was elevated because of the fluids. I'd had very frequent ultrasounds during my pregnancy, and we'd known since 17 weeks that she was small, about 2 - 3 weeks behind her gestational age.

Based on the 10% of birth weight that babies are "allowed" to lose, combined with extrapolating from my ultrasounds, we suspect that she actually weighed about 4 lb 12 oz. That's the weight that we put on the birth announcements, and it's what I tended to strangers in the grocery store.



(We got asked about her birth weight a lot when she was younger, because she was so small for her age.)

But, assuming she had lost 20% of her birth weight, the doctor said that we would have to start supplementing her, with breast milk if possible, or formula if "necessary."

I was adamant that she not get any artificial nipples, so we were told we could finger feed her using a supplemental nursing system, and could also try using the SNS at the breast, when she was willing to latch.

I was also adamant that she not have any formula, but the pediatrician insisted that she must take in X amount of food (the amount per feeding increased over the next few days) and if I couldn't pump enough, we would have to give her formula as well.

I had received essentially no instruction on how to use the pump, so I just stuck it on me and turned it on for about ten minutes.

The insides of the bottles were foggy when I finished, but not even a drop of colostrum could be collected to give to her from that first session. It was incredibly disheartening.

I knew that I was producing some, because I was able to express a few drops when trying to get her to latch, but there wasn't enough to pump yet.

I don't remember the exact amounts, but the next time I pumped, I think I got about five or six milliliters, and the doctor wanted Peeper to have fifteen, so we mixed it with about ten milliliters of formula.

I was crushed.

By the next feeding, I was able to pump enough to match the amount that she was required to take, so we didn't have to add any formula, but the pressure to produce enough for her was unbelievable.

Each time I pumped I could see that what I was producing was slowly changing over from colostrum to true milk, and I was getting a bit more each time, but the amounts were still tiny, and I was absolutely obsessive about capturing every tiny bit.

I wasn't at all confident that I could make as much as she needed, but I knew that I wanted her to get every drop that I made, and if we had to "top her off" with formula after that, I could live with it.

That is a lie.

I actually hated the idea of her getting any formula at all, but I told myself I could live with it, because I was being told that Peeper couldn't live without it, so I felt I had no choice.

Peeper was born on a Monday afternoon, and on Wednesday afternoon, I was discharged and she was transferred to the Pediatric ward, where Shrike and I were able to room in with her.

The routine at that point was that, every three hours, I would put her to the breast and attempt to get her to latch, usually using the SNS.

She sometimes nursed a tiny bit, but more often, she refused. She would sometimes fall asleep at the breast; other times, she actively fought it.

These attempts usually involved at least three people - in addition to Peeper. I would hold her body with one arm and support my breast with the other hand, a nurse would grab her head and shove it onto my breast (very counterproductive, in retrospect) and Shrike would try to thread the SNS tube into her mouth at just the right moment.

She absolutely hated the SNS tube, and it would fall out or she'd let go or she wouldn't latch at all.

This would go on for about fifteen minutes - later, I was actually given a time limit for how long we were allowed to work on getting her to latch before supplementing (no pressure, there!) - and then we would give up, and Shrike would finger feed her expressed breast milk while I would pump for the next feeding.

This process generally took about an hour. Then we'd rest or, if we were lucky, sleep for a couple of hours until it was time to do it all again.

At some point on Wednesday, it was determined that Peeper was jaundiced (as is to be expected with a 36-weeker) and she was put under bililights, which meant that she had to stay in her bassinet, and we could only hold her during feedings.

That evening, the doctors were worried that she was "working too hard" to eat, and expending more calories than she could afford.

They checked her blood sugar and it was a low. After being fed some breast milk, it had not come up enough so they gave her some glucose water (also finger fed with the SNS) and it came right up, but they were now more concerned and started testing her blood sugar at the beginning of each feeding routine (three hours after the last meal).

This continued through the night, and in the morning, Shrike's mother called to check in on us. I don't remember her exact words, but she essentially told me to not be "so hung up about the breastfeeding" and that "it's just important that she eats, and at least she's getting the milk," but "if it doesn't work, it's not the end of the world."

I know that she was speaking out of concern for Peeper, and I'm sure that she genuinely thought that she was being reassuring and comforting to me about “not being able to breastfeed,” (which I’m sure she assumed was going to be the case) but the effect was the exact opposite.

What I heard was that I was putting Peeper’s health at risk by depriving her of the food she needed, in order to satisfy my own whims; that it really didn't matter whether she breastfed, and I was being silly to be so upset about it; and that I should just stop this ridiculousness and do what was best for Peeper.

But I knew damn well that what was best for Peeper was to breastfeed, and I knew that to me, it would be the end of the world if she weren't able to, and I'd be damned if I was going to give up on her – and myself - this soon.

All day Thursday, I asked for a visit from the lactation consultant, but she was tied up on the labor and delivery floor, so it was evening before she made it over, and she'd not been there very long when the pediatrician came in to talk to us.

At this point, Peeper had been having trouble keeping her temperature up, while laying under the bililights in just a diaper, so the heat in the room had been turned up to about eighty degrees. I was sitting on a chair in the corner of the room, right under the ceiling heat lamp, Peeper was in her bassinet, and Shrike was somewhere on the other side of the room. In the tiny room with us were the lactation consultant, the pediatrician, Shrike's mother and sister, and one or two nurses.

I will forever think of this conversation as "The Nipple Intervention."

The pediatrician started by saying that "I know that breastfeeding is important to you, and it is the best thing for Peeper, so we definitely want her to do it, but . . . ."

But.

Buts, both breastfeeding and finger feeding were too much work for Peeper, and she still wasn't keeping her blood sugar up like she should, and we had to get milk into her more quickly, so we were going to have to give her bottles.

I think I asked if there were any other options, but I was told that no, she must take bottles, or she was not going to be able to get enough food.

I probably express a concern about using artificial nipples, because the lactation consultant said that we could use Nuk nipples which "are much less likely to cause nipple confusion."

I'm not at all certain, though, what I actually asked about or what concerns I expressed, because I did not feel as though I was in a position to do or say much of anything other than agreeing with the pediatrician's plan.

What I believe I said was, "Of course, I want to do whatever she needs. It’s not ideal, because I was hoping to avoid bottles, but I have no problem with them if that's what she needs at this point. If we can use the Nuks, that's fine with me. But of course, we'll do whatever you think is best for her."

What I know I was feeling was that I was being completely ganged up on and intimidated and bullied into doing what the doctor wanted.

I felt very much like I was being told that it was time to stop my silliness and selfishness, and listen to the grown ups, and get serious about actually taking care of my child.

I felt like I was being judged by everyone in the room for my hesitance to agree to bottles before that point.

I felt like I had to agree, without any argument, in order to convince them all that I really did care about Peeper and I really did want her to be okay.

I felt like all of this was about them – the doctors, my in laws, even the lactation consultant – telling me what we were going to do.

And I felt like Shrike was neither being consulted by them, nor was I even allowed to consult with her about it, because she was on the opposite side of the room the whole time.

I also felt, very strongly, that this was not the right thing to do, for me or especially for Peeper.

I made myself be okay with it at the time, because I had no choice, but I knew there had to be another answer.

I knew there had to be other, better ways to get the milk in her without introducing artificial nipples.

I knew I hated everything about the idea of giving her bottles, and I was terrified that they were going to be the beginning of the end of any hope I had of her ever breastfeeding.

After the doctor left, Shrike and I went down the hall with the lactation consultant, and talked with her about it, away from the crowd, out of the heat, just the three of us. She made me feel somewhat better about the decision, but I still was very uncomfortable with it.

DoulaK stopped by that evening to visit, and we talked with her for a long time. She was very reassuring, but also suggested some other possible feeding options, which the lactation consultant dismissed as not being appropriate in our situation.

While DoulaK was there, Peeper nursed for quite a while - probably the best session we'd had since the first day.

Over the next day, Peeper's blood sugar stabilized, and her weight continued to go up, and we were discharged on Saturday.

The bottles had done the trick, I suppose, in getting the milk into her more quickly and easily, but they'd also done their damage, and she was almost completely refusing the breast by that point.

For weeks, I pumped and Shrike bottle fed Peeper, and we slept in two and three hour bits in between.

My nipples got incredibly sore, and I was in constant pain, not only when I was pumping.

I'd started with pump flanges that were too small, and used too high a suction setting on the pump (because of a lack of training) and that started the damage, which just got progressively worse.

Feeding wasn't Peeper's only health concern. She was born with a congenital heart defect (two holes in her heart, which were surgically repaired when she was twenty weeks old) and she had some questionable results on her metabolic tests, so there were weekly trips to the cardiologist an hour away, and a train trip to a Children's Hospital four hours away.

For every trip, we took the breast pump along, and I pumped in the hospital lactation room, and parking lots, and in the back seat of the car, while riding down the interstate.

When we were at home, I still offered the breast at almost every feeding, but it became harder and harder to deal with her refusal to latch.

It was impossible to not take it personally, to not feel like she was rejecting me.

The worst part was that not only would she not latch, but she would fight against it, and would wrap her tiny little hand around my very sore nipple and push it away, saying what sounded all the world like, "Uh-uh! Uh-uh!"

I don't know how many times I handed her to Shrike for a bottle, crying, and asking, over and over, "Why won't she do this? Why doesn't she like me?"

I can't even begin to count the number of times I talked to DoulaK on the phone during that time, and she always had a recommendation for something I could try to ease my nipple pain, or to encourage Peeper to latch, or just to help us to bond, in the absence of an actual breastfeeding relationship.

Most importantly, she always listened to my concerns and my feelings and validated them, she always encouraged me to keep trying and she always assured me that Peeper would eventually get it.

She reminded me that Peeper still wasn't even supposed to be outside of me yet, so of course, she was having trouble. Many full term babies take a couple of weeks to learn to nurse well; I just had to be patient and give her time to mature.

She also told me, over and over, that she had faith in Peeper and that it might take a while, but that she knew she would be breastfeeding eventually.

Her confidence in our ability to work through this was invaluable at a time when I had none of my own.

I also can't tell you how many hours I spent on the Internet, researching nipple confusion, and breast refusal, and nipple pain, and everything else I could find.

In my research, I found very little information on how to solve nipple confusion, only information about how to prevent it - warning after warning to avoid introducing artificial nipples.

That's when I learned that syringe feeding or cup feeding would have been viable options for us, had our doctors and our hospital been willing to do either.

Both techniques are used in NICUs with babies much younger, much smaller and much sicker than Peeper, and I am still very angry that neither was made available to us.

We were very lucky that Shrike was able to take a month off work when Peeper was born, because as hard as things were those first few weeks, at least she was there the whole time, doing all of the bottle feedings, and most of the diaper changes, and a lot more of the hands-on baby care than I was.

I felt at times like actually parenting Peeper was Shrike's responsibility, and my job was to pump and hand them milk.

Shrike was incredibly supportive through it all, and never once suggested that I give up on trying to get Peeper to breastfeed.

In fact, there were many, many feedings when I just wanted to have Shrike give her the bottle and get it over with, but she encouraged me to "give her a try" first.

I know that, even though she usually turned me down, if I'd ever let myself get away from offering Peeper frequent opportunities to nurse, we'd have had no hope of getting her back to it.

And, as much as I was missing the opportunity to feed Peeper, and as much as I was not bonding with her in the way that I'd hoped, she and Shrike were able to bond in a way that would not have been possible if she had been breastfeeding from the beginning.

That, I suppose, was the silver lining in the very dark cloud that I was living in at the time.

It doesn’t make sense, but as jealous as I was of their relationship at the time, there was also nothing that made me happier than to see them together, and to see Shrike holding her, and talking to her and caring for her.



(If only I could blot that damn bottle out of the picture.)

When Shrike returned to work, though, things got much more difficult for me. Now, for ten hours of the day, I had to do it all myself.

When I'd try to put Peeper down long enough to pump, she would cry. Then I could cry, telling her, "I am doing this for you!"

Several times, I pumped while holding the bottles to both breasts with one hand and elbow, as she lay on my lap, taking a bottle from my other hand.

"You know," I'd tell her, "There's really a much simpler way to do this. How about we cut just out the middle man, huh, Kiddo?"

I was using a Medela Pump In Style, and anyone who's used one will tell you that it "talks." The noises that it makes are incredibly voice-like and when you add in a dollop of hormones and a heaping helping of sleep deprivation, it becomes something of an auditory Rorschach test.

I'd heard the pump say all kinds of crazy things, from "Loser McCain, Loser McCain," in the days following after the presidential election, to “We're losing control, we're losing control," after failing for a third time to catch a urine sample for some metabolic testing that Peeper needed, but now, the bastard really turned on me.

On the first or second day that I was home alone with Peeper all day, I was pumping while she lay in her bassinet and we both cried, and the pump was saying, "It's such a pain, it's such a pain."

Well, yes, I couldn't argue with that.

Then it changed to, "It doesn't pay, it doesn't pay."

And, for a moment, I started to believe it, and that is the closest that I ever came to giving up.

I knew I needed help to get past that, so I picked up the phone and called DoulaK, and told her, through my tears that, "We're having really rough day, here. Do you have a minute?"

We talked for hours, and she told me that I sounded much like every mother of a newborn that she talked to.

Not necessarily a mother of a one-month old, mind you, but a newborn, because that's what Peeper really was at that point.

She was just starting to "wake up" and realize that she was no longer a fetus but an actual baby.

She'd learned how to cry. She wanted to eat all the time. I was pumping as often as I could, and barely staying ahead of her.

I was exhausted, I was discouraged and I was devastated.

All my life, I’d looked forward to having a baby, and now that I had one, nothing was going the way that it should.

My baby was early, she was tiny, she had a hole in her heart, she might have a metabolic disorder (she doesn’t) and I couldn’t even feed her.

For four weeks, I'd been holding on to the lactation consultant’s prediction that Peeper would pull it together and learn to nurse by her due date. Now that date had come and gone and she was no closer than she was at a week old.

Yes, she'd had a few days here and there when she'd suddenly decided to latch, and a couple of times she'd even nursed several times in a day.

But each time I thought she'd turned a corner, the next day, we'd be right back where we'd started.

That was almost worse than if she'd never latched, because I would get my hopes up repeatedly, only to be disappointed time and again.

But, I did have that glimmer of hope that she was not completely refusing the breast, she did still know how to latch, and she was still willing to do it on occasion.

In the hospital, I'd been given a couple of different nipple shields, but Peeper wasn't able to latch with either of them, because they were so much bigger than her mouth was at the time.

LadyKay had told me that a nipple shield had done the trick in getting her son over his nipple confusion (after having been given bottles in the hospital, when he was jaundiced), and suggested I might think about giving one a try.

I was hesitant, though, because it hadn’t worked before, and I also knew that they can often cause more problems than they solve, so DoulaK had been hesitant to recommend that I use one just yet.

This day, though, she suggested that I consider it.

The main concerns with a nipple shield are nipple confusion - a moot point, since we were already there, and nursing with a shield was better than no nursing at all, and that the nipple doesn't receive as much stimulation as it would if the baby were latched directly, so it can cause a reduction in milk supply. However, my supply was well-established at this point, and I would still be pumping, so I wasn't too concerned about that.


I thought about it for a few days, and when Peeper was just over five weeks old, I tried the nipple shield.

She latched immediately.

And nursed.

I was very careful not to get my hopes up, because she'd tricked me before, but I kept offering the breast, with the shield, and she kept taking it.

I believe it was a Wednesday that we first used the shield, and from Thursday afternoon through the day Friday, she did nothing but nurse, nap, poop, and nurse the other side.

For about thirty-six hours straight, minus a longer sleep at night.

Her tummy was full enough that she didn’t fuss for a bottle, and my breasts were empty enough that I felt no need to pump.

I called DoulaK on Friday and said, "You told me to call you with some good new for a change, so I am!"

This time, we really had turned the corner.

We gave her a couple of supplemental bottles over the weekend, mostly because I was freaking out each morning that "She's not eaten in five hours! If she won't wake up and nurse, make her take a bottle!"

In retrospect, I can see that of course she was sleeping longer, she'd been cluster feeding like crazy, and if I'd waited just a little longer, she'd have been awake and asking to nurse again, I'm sure.

On Sunday, Shrike's parents watched her for an hour or so while we went out to get a Christmas tree, and gave her a bottle while we were gone.

She turned six weeks old the next day, and (with the exception of the day after her surgery, before we were allowed to pick her up) she's not had a bottle since.

Within two or three weeks, I had weaned her off of the nipple shield, and we were home free.

It's hard to believe, as I sit here typing, while Peeper naps and nurses in my lap, that this is the same kid who refused to latch for six weeks.

Now, she refuses to unlatch!

She is still small for her age, but all her doctors have been thrilled with her growth - especially considering her heart defect, which often causes babies to grow slowly - and after her surgery, she really took off.

Her growth has been a huge thing for me.

In the early days, I was so worried that if Peeper wasn't growing as fast as her doctors wanted her to on breast milk, they would insist that we give her formula.

Even now, every single time I put her on a scale, I hold my breath, as I wait for its verdict, as I wait to see whether it will say that I am doing my job, that I am a fit mother for her.

In those first days and weeks, all we were asking of her - all they were asking of me - was that she eat and that she grow.

If she couldn't do that - I couldn't do that - I felt like I would be failing her.

As it turns out, she could. And I could. And we have.

She's not just grown, she has thrived.

With the exception of about two ounces of formula in her first eight days (the 10 cc I mentioned above, and a couple of times that I was away from her briefly and she ran out of the pumped milk available) she was exclusively breastfed until she was six months, six days old.

At that point, we started offering her finger foods, taking a baby-led approach to the introduction of solids.

At almost sixteen months old, she loves her "chewin' food," and is now starting to experiment with utensils, but she's still breastfeeding on demand and, to be honest, I've really not seen much change in how often she nurses.

I know that she could start cutting back at any time, and our nursing relationship will be changing significantly over the next several months, and will continue to evolve as she matures, but I'm looking forward to breastfeeding as long as Peeper wants and needs to.

Peeper and I got off to an incredibly rough start with nursing. We were dealt some bad cards, and, I now realize, we were given some bad advice from the pediatricians and some other people at the hospital.

I also now realize that we encountered some people who claimed to be, or perhaps even truly thought they were being supportive of our efforts, but were, in reality, sabotaging us.

I am still very angry about that, and am still very, for lack of a better word, traumatized, by the whole situation, especially the "nipple intervention."

But, more importantly, we also had some very, very good advice and support and encouragement all along the way.

We got great technical advice from DoulaK, LadyKay, a midwife friend (who missed delivering Peeper by one shift!) and our other La Leche League leader, plus incredible emotional support from all of those people, as well as Shrike, of course, and my mother, and our therapist (a nursing mom, herself) and many friends.

Without their help, we never would have made it through those first six weeks, and I would have been absolutely devastated if Peeper had not learned to breastfeed.

I went into it probably knowing a lot more about breastfeeding than most people who've never done it, I was absolutely committed to making it work, and I had a great support system.

And I still doubted, everyday, whether we would be able to do it.

I totally understand, now, why women give up on breastfeeding, especially if they are not lucky enough to have that kind of support.

But there is no excuse for them not having that support. There's no excuse for hospitals pushing formula when a baby doesn't need it. There's no excuse for them not offering alternative feeding methods to avoid the introduction of artificial nipples and there's no excuse for women not being told where they can turn for help.

Shrike tells me that Peeper wouldn't be nursing today if I weren't so damn hard-headed, and I like to think she’s right.

I've done a lot of things in my forty-one years, some of which I'm pretty proud of, but there is nothing that I'm prouder of than sticking it out and having enough faith in Peeper, and in myself, to give her the time to mature and trying one thing after another until we finally hit on the answer, and doing what it took to get us through those first six weeks to bring us to the point where we are today.

As awful as those early weeks were, and as hard as some of the other things we've been through with Peeper have been, from worries during my pregnancy about a possible neural tube defect, to her open-heart surgery, I think that I am a stronger person for it, and I am a better mother for it, and Peeper, Shrike and I are a stronger family for it.

I spend a good portion of my day (and night) with Peeper at my breast, and sometimes I get tired, and sometimes I need a break, but I never, ever take it for granted.

And I never will.



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4 comments:

  1. Woohoo! Your story had me cheering toward the end. I felt so many of the same things- we had a lot of the same issues with breast refusal and having to supplement. Amen to the importance of a strong source of support for breastfeeding. I'm glad you made it!

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  2. I didn't know that breast pumps "talked." I can relate though as I've heard other appliances "talk" to me when I've been feeling a certain way.
    I'm really glad to know your story. Moms like you who keep on and keep on when babies aren't latching always amaze me. That kind of determination and commitment is rare, I think. Good for you!!

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  3. Wow! Your story always brings tears to my eyes. It's so heartbreaking that you didn't receive all the information and support you needed from the professionals who were supposed to be looking out for you. I'm sorry you had to go through all that but impressed you kept at it through all the tears and rough times.

    I know our white noise machine talks to me. The only setting that doesn't is Ocean Waves, but lately Mikko's vetoed that one, so I'm trying to tune out the voices on the other settings. :) They haven't been saying anything mean, fortunately.

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  4. Hi :) I found you through the Carnival, and read this back in February, but I have thought about it many times since then, so I thought it was time to say thank you. Thank you for sharing everything you went through. Knowing that it took you time to overcome your breastfeeding challenge has made me feel better about all the time it took me to increase my milk supply. It was weeks and weeks and weeks of work, and there were times I felt completely inadequate. I wish I had known then that sometimes it does take time, and that there really is a light at the end of the tunnel. Thank you for the encouragement your post brought to me, and congrats on your well-earned success. And my breast pump talks to me, too :)

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