Tuesday, September 29, 2009

Breastfeeding babies with special needs

My sister, new mommy to Margo, is doing the breastfeeding thing. She's in a little pain, and my boobs are practically aching in sympathy.

I couldn't wait to nurse Max. Make that, I couldn't wait to get my hands on him and just hold him when he was a prisoner of the incubator. I pumped for the two weeks he was in the NICU, and once he was breathing on his own I was able to bottle-feed that milk to him at the hospital. At home, I had a hell of a time breastfeeding. Max never latched on quite right and a feeding could take as long as an hour; sometimes I thought my nipples were going to fall off, they hurt so bad. It got to be a joke between me and Dave: He'd leave for work in the morning, and I'd be sitting on the couch nursing Max; he'd come home from work at night, and I'd be sitting in the same spot, nursing Max, as if I'd never moved. Sometimes, Dave would feed me dinner as I fed Max; breastfeeding got so consuming that I wasn't eating as well as I needed to.

I'm not one of those breastfeeding diehards; I don't believe it's the right choice for every woman. I also think there's some pretty good formula out there these days. But I was determined to do anything and everything I could for Max, and so I kept nursing.

The feedings continued to drag out. I got someone from the La Leche League to come to the house for a consultation, I developed an addiction to Soothies (those gel pads), I tried different positions using the Boppy. Breastfeeding got a little better, but it never felt easy. I thought maybe it was me, or maybe I had weird nipples or something, but in retrospect I know that Max had coordination issues with sucking and head positioning issues because of his tight muscle tone. He had a far easier time gulping milk down from a bottle, and so I became a pro pumper. Cows had nothing over me, I pumped so well.

I made it through ten months. I breastfed Sabrina for about six, and didn't have nearly as much trouble. I'm glad I did it for both my kids, and I'm glad my nipples never fell off.

Did you guys breastfeed?

Photo by Linda G.


  1. I wanted to breastfeed but baby #1 was a preemie, and even with hours of effort and high end trained help, we never were great because the bottle was so much easier. She nursed a few times a day for nine months but mostly took pumped milk, and I pumped full time for fifteen months. My CP baby was also a hospital baby and came home on bottles of pumped milk, and never got good at it and quit at four months. I sobbed and kept pumping and do still at thirteen months. I am horriblhy sick of it but want to keep going through 'flu season. Having bad BF memories is one of my biggest regrets of parenting. I so envy the moms for whom it worked, I really feel so much jealousy over that. I wish your sister better BF karma!!

  2. You're not the only one who found pumping and delivery via bottle an easier option, for a variety of reasons (not the least being a slow feeder, pain, and time management/work issues). It also allowed papa to get into the act, which is always good for the bonding and pictures and the memories.

    GingerB is a champ--she lasted longer than I did, and there's nothing wrong with pumping. The whole idea is to feed the baby, and the "how" of it doesn't matter so long as your child gets lotsa love.

    I don't go for a diehard attitude about this subject, either. People who get up on their high horse and decide to lecture others about what they "should" do and how they should or MUST manage this issue need to worry about their own business and stop with the preaching--and oh, yeah, these folks are out there in force!

    Every so often, we get one who will come into the restaurant where I work and want to plop poor little Bebe on the COUNTER amongst the plates and silverware, haul out the boob and feed 'em--with some pretty crusty truck drivers looking on and leering like childish asses...and there's always the angry militant or the "what's the problem?" surprised types who give us attitude when we direct them to a way-more-comfy "designated" back booth that's away from the heavy traffic in the place in the corner,(we also have a ladies' lounge that looks like something out of the forties--very posh, with a fainting couch (!), separate from the toilets if mothers prefer a "women only" environment) for quiet and privacy--some of these mothers don't get that it really is not so much an aesthetic matter (and that is the complaint they give us when we tell them they can't put the kid on the counter, that my boss is "anti" breastfeeding, and he's not), it is a genuine safety issue-- in a truck stop diner, that HOT HOT HOT coffee pot is up and down that counter constantly--all we'd need is a McDonald's lawsuit for burning little Bebe with the pot! Of course, there's the HYGIENE issue as well, and the potential for babyshit on the counter where people are eating too, and I'll point that out if they give me noise). Also, if I had to guess, I'd wager a few of our customers have done time as guests of the government behind bars for assorted offenses, some of them likely landing them on the sex offender rolls, which is not a great environment for militant public breastfeeding...but still, we sometimes get "attitude" from the "I can feed my kid ANYWHERE I WANT" club--even with the baby plopped on the counter, sandwiched between two obese and smirking truckers eating massive plates of the house special with hot plates and coffee flying everywhere!

    Sometimes I think people oughta have to pass a test to have kids...!

    Sure, breast is best, if possible, but sometimes a combination approach just works better. Also, some women just aren't good in the milk production department. If you're not living in that person's shoes, you just don't know. Criticizing a person for not breastfeeding is something I would never do, though I have heard it from a one or two "perfect mothers" who like to tell others how to raise their kids.

    I had a friend who just didn't have any milk worth a damn; another friend who was a little Bossie the cow (they delivered within days of each other) did the ultimate in friendship and supplied both babies for over six months, thanks to the trusty pump--now that is a friend.

    I have to say, I love your photo-illustration for this topic!!! Great choice!

  3. I breastfed my 1st daughter Emily for 19 months, which now looking back I think was a bit too long.

    I breastfed Violet for 11 months. Which was very difficult in the beginning being in NICU, having latching issues, soreness from not being able to feed her when you normally would be able to and having to express due to this aswell.

    Even though it was hard ….I just wanted to be able to give her the best start in life considering all the other health conditions she had to deal with I thought I just had to keep on with it.

    It kind of makes me annoyed when some mums give up so easy and I think I could have easily given breastfeeding up this time as everything was working against me continuing with it, but I am glad I persisted, she needed it more than ever.

  4. I haven't seen your blog before - I have a nearly 9 year old with CP. She couldn't feed, though I didn't at the time know why. I did pumping but my breasts got tired of that before I did and just gave up producing.

    Littlest fed no problem - it was painful at first, but well worth it for not having to carry bottles full of warm water wherever I went.

    Nice to see you, anyway!

  5. I am another great pumper! Found that I had a skill there once I started ;-). Hand pumped for 3 weeks while BC was in hospital and was thrilled to bring him home fully breastfed. Was SO thrilled that he didn't have any issues at all latching on or feeding once he got the hang of it, that I actually breastfed him until he was THREE (even through my second pregnancy and then cofeeding with his little bro).

    I am also no breastfeeding nazi, but I just felt so incredibly blessed that he was able to feed, that I felt I owed it to him to feed him as long as possible. I breastfed DS2 until he was 2 - giving up because it really began to hurt during this 3rd pregnancy.

  6. I'm another pumping pro. I pumped for 12 months for my prem twins - but had to supplement with formula as well as I couldn't feed the two of them. In hindsight I have no idea how I managed to pumped every day for a year while looking after newborn twins (one very sick) and a 2 year old. I think I've blocked it all out!

  7. I nursed T for about 4 months. He too was in the NICU, on seizure meds and didn't do very well and with me being a new mother, I didn't know how to breastfeed either! But I tried to stick with it because it was important to me. But he also had coordination and low-tone issues, so he wasn't very successful. I did my best, but stopped and I was so much happier when I did because it was frustrating at times. He never seemed to get enough so I always supplemented with formula from the beginning.
    With my JD, it was like second nature to both of us. I exclusively breastfed for 7 months, it was hard to wean him because he didn't like bottles. very different from his brother. I also think nursing isn't for everyone. I did it for the health benefits and the bonding that it gave me and my boys.

  8. Did you think I could pass this post up?

    I have been either pregnant or breastfeeding for almost 8 years. Yes, 8 years. Both boys were in the NICU, so I too had to start off with the pump...yuck! Jonathan latched right on when he finally got a chance, and we had a long blissful 2 year nursing relationship. Unfortunately I weaned him before he was ready...Tony thought it interfered with his relationship with Jonathan after he came home from Iraq. Jacob started off with a pacifier, so when I went to latch him on he had a bit of confusion. But we too had a blissful 2 year nursing relationship. And I got to nurse Victoria right away...finally a baby that didn't need the NICU, and at 15 months she still loves her milk and shows no signs of wanting to give it up anytime soon.

    I think it is sad when women don't even try to nurse. It is an amazing experience, and is far superior to anything you can buy in a can. I don't want to start a formula debate, and I know that not every woman can breastfeed, but I think they should all try!


  9. I've got 4 kids, nursed them all and feel very fortunate that I was able to. I'm not a Nazi about it but I do wish it wasn't the issue that it is. I never got why nursing in public was that big of a deal. Nobody thinks twice about bottlefeeding in public and it's not like I just strip my top off and whip them out. And I always thought a nursing baby was far less intrusive than a screaming baby who wanted to nurse. But, that's just me.

    I'm happy to read all these posts about how moms of special needs kids were usually able to at least pump and feed. Don't get me wrong, I'm not criticizing anyone who didn't have success or even was just too overwhelmed to try because I totally get that. I just wanted to say that it's such a great thing to hear how many women strive to do any and every thing they can to help their kids. You read in the news about all the crappy things that people do, but then I read something nice like this, some simple act of goodness like moms taking care of their kids, and it warms the heart.

  10. Graham could never feed... I pumped for 10 weeks and he got the milk through his tube. I felt fully ripped off. I got paid back when Dottie refused to take ANY bottle (I spent a fortune on bottles and she hated them all).. I nursed her exclusively for 5 months... she stopped nursing at around 18 months... it was the coolest thing ever.

  11. My special needs guy, Brayden, is my third boy. I made it until 9 months with my older two.
    I nursed Brayden for 13 months, for an hour, 7 times a day. It was the most exhausting thing I have ever done. He was not the best nurser, it was the ONLY place he could find comfort, he could/would not take a bottle nor spoon feed after many months of feeding therapy. Finally the breastmilk did not offer him enough calories or nutrition so he had to get the feeding tube.

    As much as I disliked nursing him SOOOO much, in retrospect, I actually see it more as a miracle...because he nursed he came home from the hospital shortly after he was born, he did gain weight for the first 9 months of his life, I had a great chance to bond with a child who wasn't quite capable yet of other bonding experiences, I felt like I could help him in some small way as we where tossed in to a crazy world of doctors and hospitals, and we put off the feeding tube until we were much better prepared.

    I breastfed him for 13 months, no other food, for 7 hours everyday...how did I get anything else done?!

  12. I breast fed Daniel until he was almost 16 months old. Extended breast feeding became especially important to me after he was diagnosed (he was nearly 11 months old by that time), but he self - weaned at 16 months. We were lucky that he didn't have feeding difficulties, or else I doubt I would have breast fed for very long. Yes, we all know that breast is best - except when the baby has feeding difficulties. In that case, I'm all for the form of nutrition that will keep the baby well fed, which is usually formula. I really commend you for trying as hard as you did to breast feed, but Max clearly thrived just fine with formula.
    I also have to add that I agree with Karen. Breasts aren't a sexual organ. If a mother wants to feed her baby via bottle in front of me, I'm certainly not going to be offended. I wasn't the type who intentionally breast fed in public to make a statement, but if Daniel was hungry, I fed him. No need to shove us off into a corner, which is illegal here anyway. But to each her own, right?
    By the way, NO pump worked for me! I tried several ones, but I absolutely could not do it. If Daniel had had feeding difficulties and/or I had returned to work, there is no way I could have breast fed him at all.

  13. I pumped for my preemie twins two months while they were in the NICU and then continued pumping for seven months. Breast fed a little but mostly they got the breast milk via bottle. I never propped a bottle either! For some reason I am proud of that fact? I always felt WE ALL deserve special credit for what we all went thru in different ways to do the best for our sick babies! Ok, now I watch my sons guzzle down a big glass of milk and sometimes wonder! I remember a point they were getting like 2 cc's.

  14. First of all, where do u find all those funny pictures?!!?

    I'm scared of the whole breastfeeding scene but I'm going to give it a shot. Glad to know you're a pro pumper! I'll call u if I have trouble! I sure hope Judy's nipples don't fall off!

    Call u tonight!

  15. I nursed for 4 years!! I kid you not. My son nursed every hour for 45 minutes at a time until he was 2 years old. After that we slowed waaaayyyy down until it was 5 minutes before bed at night. It was exhausting. He has autism, and I can see now that it was comfort for him from all the sensory input. When he nursed, he could focus on just one thing, and it was quiet, and peaceful. No wonder he did it so often. But, I didn't miss it much when he stopped. I was glad to have my body back. He's still a huge cuddler though. Some things NEVER change. :-)

  16. I had planned to breastfeed all my kiddso from the start but for various reasons it has not worked out. Evan had feeding issues, it was hard to even get him to take a bottle so I pumped for 14 months for him. For my sanity I did not pump for any other kids, I figure that they are not facing surgeries ect so it is not a huge of a deal for them as it was for Evan.

  17. breastfeeding was such a solace with my SN dd, it was the only time where everything felt normal, no one was poking and prodding her to determine what was wrong, for a few moments in that scary first year, everything felt right with the world

  18. I never did, though I did develop man boobs as I got older.

  19. I tried...and pumped like a fool. I was feeding every other hour, pumping every other hour. After about 6 weeks of torture to myself, and from doctors (yes doctors!) saying that I just may not ever "get" breastfeeding, my father in law said something that helped more than anything else.

    I was so down on myself, and felt like such a failure for not being able to do the most human of tasks. He said, there are babies all over the world who are fed formula to save their lives. There are women all over the world that, for one reason or another, can not feed their child by breastfeeding. And those children have all survived.

    It was some of the best advice I got for Max in those early days before diagnosis. He was losing weight daily, and when we got him on formula, we started to see he wasn't eating hardly at all. Which is what led to diagnosis.

  20. When I was pregnant I really wanted to breastfeed. When my daughter was born and spent the first 6 weeks in the NICU, things didn't exactly go the way I had planned. I tried to pump for about the first 2 weeks, but really never got much more than drops each time. I talked to professionals and tried multiple things and just never got anywhere.

    It was so hard for me! I was an emotional wreck! I was hormonal, stressed, in a state of shock that the baby I had been waiting for suddenly had "issues" and I was SO sore! My doc even gave me some medicine that was supposed to help with milk production. I took it for 2 days and I was like a zombie. That was what helped me to decide that I needed to stop. It was more important for me to be fully present for my daughter then it was to give her breast milk.

  21. I pumped for three weeks while Elijah was in the NICU and was so proud that we were able to bf exclusively by about a month. Was it easy? Nope. I wanted to quit about a million and one times. But, we made it to 17 months when little dude decided he was no longer interested in nursing (amazing if you ask me!)

    I get frustrated when women don't try to nurse at all (especially since it was so hard for me to get it established), but at the same time I know that it's simply not possible for every woman. I know quite a few women who weren't able to nurse - all for legit (and different) reasons. When I see a mommy bottle-feeding a baby, I'm more understanding than I used to be (life'll do that to you, won't it?!). Perhaps it's breastmilk in that bottle. Maybe she didn't have enough milk. Maybe her spouse thought nursing is gross and discouraged her. Maybe her child was sick (like a lot of our kids were - or are). Or maybe she just wasn't able to establish breastfeeding. And that's okay.

    Kudos to all you pumping mamas! I disliked pumping so much and I'm always so proud of mommies who do it for an extended period of time. :)

  22. Yes! I breastfed my son for 8 months, and Kendall for 14 and worked full time. It wasn't easy but I made it work. For us, Kendall's feeding ability was one of the only things she was developmentally on target with. Eventually I had to stop because of the Ketogenic Diet...it was a sad time for me but she couldn't have cared less. I was very blessed both of my babies were great nursers. But now my boobs resemble deflated baloons...TMI I'm sure.

  23. I nursed all my kids for about a year, but my autistic son stuck around for 15 months. He never took a bottle or a sippy cup. We had to hold a regular cup and give him bit by bit. I eventually forced him off cold turkey, and he was fine- we did lots of cuddling. I, on the other hand,had gone from five feedings a day to zero.


  24. Oh Ellen, One of my favorite topics! We had almost an identical experience with Faith. She just never got the hang of things like she should have. She couldn't coordinate all the muscles and when she did, she got so tired she would just fall asleep. And Ellen, I AM one of those DIEHARD BF fans. I was determined, we had La Leche, a BF consultant, and finally a BF coach from the health dept. who managed to get Faith latched on. I nursed/pumped for 16 months. She did nurse but never adequately or enought to gain weight. The lady who did get her to latch is now one of my dearest friends. I carried my industrial strength breast pump everywhere we went. That too, is one of the most heartbreaking things for me about what happened to Faith, b/c I wanted that so much and we never had what I had hoped for. But I do believe that my milk did provide her with protections and added benifits that she would not have had w/o it. My dear friend who devoted so much time to me, coming out every week, sometimes twice, was such a comfort to me. I still ache that things did not go as planned. But I know that I did my best...

  25. This is a sore topic for me, Ellen. I spent 3 weeks in the hospital with preterm contractions when I was pregnant with my twins. During my hospital stay, there was an endless amount of bf nazi's who would stop by and sing the praises of breastfeeding. They assured me LOTS of twin moms have enough milk for two babies. They assured me it was the BEST way to bond with your babies. It was the MOST nutritious food for your babies..etc... So, when my babies were born at 33 wks I started to pump, with hopes of switching to breastfeeding when they were ready. After 2 days in the NICU we discovered my daughter had PKU, a rare metabolic disease in which her body can not break down protein. So, breastmilk was toxic for her. If she were to have protein it would build up in her brain and cause irreversable brain damage. Now what's a girl to do? I couldn't breastfeed my son, who didn't have PKU, because then I would bond with him and not my daughter. Or at least that's what I thought in my post pregnancy fog. So instead I pumped for him. And I got a trickle at a time. 30 minutes of pumping would get me less than an ounce. I kept at it for 10 weeks, until I had to go back into the hospital for surgery. Prior to being put in this position, I was very pro breastfeeding. I was looking forward to it, it was my first step on the path to being a good mom. When I failed at doing this very basic thing, I doubted my abilities at doing all other mom things. It's taken a long time to shake off that bad start on the path to motherhood.

    PS- It's me- Ella's mom. Haven't noticed anything miraculous since the stem cells, but there are a few subtle improvements with range of motion.

  26. These comments are so moving. I, too, found it miraculous that I was able to nurse at all. But clearly, there is a whole lot of guilt attached to breastfeeding, exactly what you DON'T need when you're already overly hormonal, and dealing with a baby who has challenges. The pendulum has totally swung the opposite way since my mother had me; it wasn't fashionable to breastfeed back then. Now, it's become this badge of motherhood. No mom should feel guilty if nursing doesn't work out, let alone the mother of a child with challenges. It's a message that nurses, doctors and lactation experts should spread.

  27. I nursed Elizabeth until she was over a year. We did give her bottles of breastmilk at about 6mths to supplement. As she was in the hospital for almost 4mths I pumped every 3 hrs religously until she came home. I had a very hard time separating from the pump but we had a deep freezer of milk to keep us going. A crying baby never made my boobs leak but the whirring sound of a pump was for sure going to leave me with a soggy shirt (I learned about breast pads fast).

  28. I nursed my first son, now 5, for about a year. Our second child, who had a stroke, may have gotten 3 months tops! I did everything the same, but I truly think our bodies know when to say when.

    (I am also a Registered Nurse in the NICU so I can say that with authority - hehehe!)

    Seriously... I work with moms who want to breastfeed, even when it is HARD, but I would never push it on someone. NICU stays are hard and painful and we do whatever we have to do to get by!

  29. Breast feeding Charlie=torture. At this point I'm squeamish about the whole thing although I do plan to attempt nursing if I have other children.

    I pumped and pumped and almost never got anything. Charlie was too exausted to breastfeed and had a feeding tube, so my life revolved around pumping, cleaning the pump, and then tube feeding and then cleaning the tube stuff. Horror. I was glad to do it at the time, but looking back, it was, in no way, good for my stress levels.

  30. I was a 'pumper' too for 10 months and could have fed most of the country as well as my own wee one. I used to get 'let down' from machinery sounds - it was a nightmare walking past road works etc - I would get soaked. I drank fennel tea all the time and used to pump every 3hrs from 6am till 9pm then sleep through the night. Often i would double pump and be done in 10mins.

  31. I pumped for the time my daughter was in the NICU (length has been forgotten, but it was less than 2 weeks) and was absolutely determined to only breast feed after that. I visited a lactation consultant who helped with latch on, and away we went. Full-on Dr. Sears attachment parenting, on-demand nursing for 6 months, until she got her first solids. At 9 months old, she got a feeding tube due to other medical complications (not bf) and I pumped and tube fed for awhile. She nursed for 2 years, when she self-weaned., which was heart-breaking for me! When I wasn't pumping, tube feeding or nursing, I was cooking home-made organic food and then pureeing it so she could still have decent nutrition. I basically dedicated four years of my life to my daughter's nutritional health. I am gratified that now, she is 7, there have been no major illnesses and that she remains very strong and healthy in spite of having a severe form of cp. The years of personal sacrifice have made a very big difference to my Girl and I am glad I persevered. I want to urge all other moms to do the same, because where there is a will, there is a way!

  32. I'm still breastfeeding. Sebastian is almost 17 months. I pumped for the first three months and a week before we moved to Egypt he decided to nurse. It was a miracle. It was certainly a rough road at the beginning but now he refuses a bottle and is a great nurser. I'm not sure how long I will do it, maybe til he's two? I'm so thankful he decided to and could breastfeed. I wrote about it here http://karamelissa.wordpress.com/2008/06/24/breast-is-best/ Way to go you for pumping so long! I know how hard it is!

  33. I just read through some of the other comments. Really amazing women. All of you. Thanks for sharing your stories. Wish I could have read them when I was pumping in the middle of the night for three months.

  34. I breastfed my son for 17 months! It was not easy in the beginning. He was in the NICU For 3 days and had some confusion due to starting out on a bottle of EBM. We made it through all the tough times though. I finally stopped at 17 months when he was cutting a tooth and started biting me! I found out he wasn't getting much at that time and he was on table food anyway. I wanted to BF so badly and I am so glad I got to experience it, the good and bad! I do think it's a shame some women never even try, like my SIL with both of her kids didn't even try. She went straight to formula. She was off her ADD meds for 9 months while preggo but couldn't be off them for even a day after giving birth, sad really.


Thanks for sharing!

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