Tuesday, May 26, 2009

Nursing Tips

Nursing can be a frustrating experience for both baby and mother when it doesn’t go smoothly. For some newborns there are obstacles that must be overcome or mitigated before they can successfully breastfeed. It is important to have realistic expectations in order to not become discouraged and give up. It can take up to 4 or 5 months before some babies reach the turning point and are able to nurse without special support or guidance. The key to achieving a breastfeeding relationship is patience and persistence.

For a mother who wants to breastfeed, there are few things more emotionally difficult than not being able to get it to work. The ideas I am going to share with you come from some of my own painful experiences. My daughter was born with significant cardiac issues and spent the first four months of her life in the hospital. She was both bottle fed and fed through a nasogastric (ng) tube that went up her nose, down into her stomach. Later she was fed through a g-tube that was surgically placed in her stomach. Three times during her hospital stay she was not allowed milk via mouth or tube for days and lived on nothing but an I.V. bag for nutrition. But, despite all that, she learned to nurse, never quite perfectly, but well enough.

Feeding Snags
Lots of things can interfere with a baby’s ability to nurse. Perhaps your baby has a lack of strength and stamina due to a cardiac issue, or maybe her low tone is making it hard for her to get the hang of latching on and swallowing. If your baby is in the NICU and you have been discharged from the hospital, it is even more difficult to establish a nursing relationship.

For whatever reason, if your baby can not breastfeed from the start, you will have to accept an alternate method of feeding as a backup. In most cases this will be the bottle, but for some it means an ng tube or a g-tube. Don’t stress that the secondary feeding method will ruin your baby’s ability to nurse. You’ll just have to work around it.

Mother’s Little Helpers
There are several things you can try to facilitate nursing. Me, I was so desperate that I tried them all. Some were very successful and others not so much for me and my baby, but that doesn’t mean they won’t work for you.

A Lactation Consult—As soon as you see that your baby is having trouble latching or swallowing, request a consult with the hospital’s lactation support person. Having a pro help you with positioning and such may be all you need to get things going.

Oral Stimulation—Give your baby some oral stimulation prior to trying to breastfeed. Make sure your hands and nails are scrubbed clean before touching your baby’s mouth. Stroke your baby from her mouth upward to her cheeks. Use a gentle downward stroke on the outside of your baby’s throat to encourage the swallowing reflex. Rub your baby’s gums, top and bottom, starting from the center and moving to the side and then back to the center. Stroke the corners of your baby’s mouth, once per side, in an arc starting from the top center and working down to the bottom center. Just before presenting your nipple, put your finger pad on your baby’s tongue and gently push it down from the roof of her mouth. When you feel her begin to cup her tongue to suck, quickly remove your finger and insert your nipple. This is easier said than done (trust me on this one) but it is worth a try.

The Dancer Hold—Whether breast or bottle feeding, you can use the Dancer Hold to support your baby’s cheeks and encourage latching and sucking. The Dancer Hold is a special hand placement that is complicated to describe but a lactation consultant can show you exactly what to do.

Positioning—A baby with low tone needs to feel fully supported while she is trying to eat. You can do this by swaddling your baby although this might put her to sleep. You could also try different nursing positions as long as you are supporting your baby’s body from head to toe. My favorite position to accomplish this is side-to-side (though this is probably not something you can do in the NICU). I place my baby on her side on a slightly inclined pillow and lie next to her. This way she is fully supported and does not have the weight of the breast on her. She can also control the flow of milk easier from this position and I have free hands to help her if necessary.

Nipple Shield—A nipple shield is a temporary solution designed to help train a baby with latch difficulties. You can use the shield over your nipple to make it sturdier, thus helping keep your baby’s tongue in position. Your baby will not lose the nipple if she is unable to secure or maintain a latch. These are not one size fits all and sizing is based on your baby’s mouth size not your nipple size.

SNS Feeder—The Supplemental Nursing System made by Medela can be used to teach your baby that milk comes from your breast if she is unable to get a good enough latch to cause you to let down. It is also helpful if your baby just doesn’t seem to know what to do at the breast. The hospital can provide you with the kit and show you how to use it. Basically you fill the bottle up with milk and then hang it upsidedown taped to your shirt or skin above your breast. There is a tiny tube that the milk flows through that goes into your baby’s mouth (along with your nipple). When your baby makes any attempt to suck (or even if she doesn’t) you can allow milk to flow into her mouth. The flow rate is adjustable and if your baby gets your milk to kick in, the feeder will let off on its flow accordingly. When I used this with my daughter she spat out my nipple and sucked the milk through the little tube like it was a straw.

Pumping—Sometimes the timing is all off when you go to nurse. Maybe you are so ready that you are leaking and your baby is overwhelmed by the flow. Maybe the milk isn’t there and your baby’s latch and suck is too weak or uncoordinated to get it going. In either case you can try pumping prior to nursing to resolve the problem. You can pump until the flood subsides or pump until you get a let down and then offer your baby the breast.

Ambience—There are a couple environmental things you can do to make nursing easier. First off, make sure you are comfortable because nursing a baby with low stamina or low tone can take a while. Have your boppy and a bunch of pillows handy, and a bottle of water for you. Turn the lights down but not off. Bright lighting will make your baby close her eyes and then it’s zzzz for her. The same thing will happen if it’s too dark. If your baby is too sleepy to eat you can try changing her diaper or massaging her to wake her back up. Also be careful to position your baby with her head up a little bit so that the milk will not back-flow into her ear canals. Make sure you burp your baby often since babies with eating difficulties tend to take in more air which can make your baby feel prematurely full and uncomfortable.

Protecting the Nursing Relationship
It is important to keep your baby aware of breastfeeding, or in other words, to protect the nursing relationship when you must use a secondary method of feeding. This means that you must make your baby associate filling her tummy with the smell, taste, and feel of the breast.

Bottle Feeding—Attempt to breastfeed your baby prior to bottle feeding her. Allow 5-10 minutes of practicing latching and swallowing. If your baby can’t get a good latch or a few good swigs after 5-10 minutes, you should try the bottle. You don’t want to frustrate your hungry baby or have your sleepyhead drift off again. Until your baby makes the connection between you and nursing, you should have someone else offer the bottle, if possible.

Tube Feeding—If your baby will be having a tube feed, position her as if she were breastfeeding with her face against the skin of your breast. This way she can practice nursing while her stomach is filling up. She will learn to associate feeling full with the breast. You can even do this if your baby is fluid-restricted and not allowed to feed directly from the breast. Just be ready to take her off if she does manage to get a good latch and starts drinking. (I know that seems mean, but remember her belly is filling up and she is learning how to use her mouth, so it isn’t as bad as it sounds!)

Continuous Tube Feed/I.V. Bag—If your baby is on a continuous tube feed or an I.V. bag, ask the doctor if every so often you can simulate the nursing experience by holding your baby in the nursing position, skin to skin, while offering her a pacifier dipped in breast milk, water, or even a couple drops of sucrose. This exercise will train your baby to continue to accept oral stimulation and to associate it with you/your breast.

PumpingThe big thing you have to do to protect the nursing relationship is keep your milk supply up. Not so easy when nursing isn’t consistent. You and the pump might be spending a lot of time together. Most hospitals have super pumps but if you will be pumping at home you may want to consider buying or renting a really good electric pump. (Many insurance companies, including some medicaid plans, cover part of the pump rental fee if your baby is in the NICU.) There are two things you can do to make pumping easier. You can take pictures of your baby nursing (or pretending to nurse ;-) and put them in a little photo book that you can look at while you pump. This visual stimulation of seeing your baby nursing on you will encourage let downs while you are alone in the pumping room. Also, pumping right after you have practiced or simulated nursing with your baby will help you to get a good let down. Pumping on one side while you are nursing on the other is even better yet, but might be a bit tricky in a NICU or without someone’s help.

NICU Nursing
Trying to breastfeed your baby in the NICU can be tough. Make sure you let the doctors and nurses know that you want to breastfeed your baby and don’t let them discourage you. While the NICU staff will agree that breast milk is optimal they may seem like they prefer it coming from a bottle. They may be concerned about your baby’s efforts (energy expended) to nurse if she has a cardiac issue or they may just not be that experienced with breastfeeding babies with Down syndrome. They may insist that they need to keep track of the exact amount of milk your baby is ingesting. If this is the case, suggest that they weigh your baby before and after you breastfeed to determine the amount of milk your baby received. Do not be thwarted. Discuss a nursing plan with the doctors that will be medically safe for your baby.

When It Just Won’t Work
If you are unable to establish a breastfeeding relationship with your baby, remember that almost all the same benefits can be had by pumping your milk and feeding it to your baby via a bottle or tube. The bonding that occurs with breastfeeding can be developed by creating a special routine that is just between you and your baby. You could do baby massage, kangaroo care time (where you have your baby lie against you skin to skin), or a lullaby and snuggle time each day. The oral motor tone that is developed by breastfeeding can be worked on with oral stimulation techniques that your baby’s speech therapist can teach you.

Your Turn
If breastfeeding did not come easy for your baby, would you share your experience on what worked for you and how long it took your baby to get the hang of it?


  1. I think what helped us most was determination, patience, and confidence. I remember getting frustrated when our girl was a week old and we had to give her a few bottles because she just wasn't latching on. She was also very very sleepy for her first 4-6 weeks or so. Now she's eating like a champ! She's 11 weeks old and it's hard to remember how long it took for her to really get the hang of it. Improvement came gradually and sometimes it seemed like two steps forward, one step back. Tools I found really helpful were: a nipple sheild, a boppy, and one of those cover ups that let me look at the baby so I could get her latched on in public. I saw a lactation consult in the hospital and she gave me a helpful booklet called "Nursing Your Baby with Down Syndrome." I also found "The Breastfeeding Book" by William and Martha Sears, and "The Womanly Art of Breastfeeding" at our library. They were great for general tips and each did have a section on Down syndrome/heart defects.

  2. Just not giving up, being determined. I would not let the nurses give Tawni a bottle, I really wanted to breastfeed her. I had a great nurse that really worked with us and we ended up using a nipple shield for about a month til Tawni learn to latch on good. I breastfed her for 17 months til the little stinker decided to wean herself.

  3. The SNS was a life saver for me! Morgan had a good latch but tired out really easily from her congestive heart failure. She began to lose weight and it was an easy way to add calories to the supplemented milk in the SNS feeder. I used this system for the entire year of breastfeeding. It definitely was NOT convenient but I know that it is the only reason we were successful with breastfeeding. She would absolutely NOT take a bottle so it was the SNS or NG tube. It wasn't a hard decision--a tube on my breast was much easier than a tube down my baby's nose into her stomach. When I didn't use the SNS, Morgan would not empty my breast but for some reason with just 1-2 oz. of pumped milk in the SNS she didn't seem to wear out as easily and was able to successfully nurse and empty all the milk out of the breast.

  4. Great post, lots of great information. Thanks for posting this Sandra.

    Our experience was like this: Finn had gastric surgery the day after he was born (correction of duodenal atresia) and subsequently couldn't take anything by mouth for a week, so that put off our establishing a nursing relationship. In the NICU I tried to nurse him, and did get lots of support, but it was difficult and stressful and never went very well. When I was able to take him home at 2 weeks of age, he was latching on with the help of nipple shields. It wasn't long before I was able to get him to latch on and nurse without the nipple shields, but he wasn't gaining weight. Our pediatrician, unfortunately, assumed he'd never nurse well because he has Ds, so recommended putting him on formula. I was devastated, as I had nursed all 5 of my previous children. Instead of going to formula, I met with a wonderful lactation consultant who worked very hard to help Finn and I overcome the hurdles we had (mainly, a poor latch which resulted in my milk supply decreasing dramatically, and thus his poor weight gain). I pumped to get my milk supply up and we used a SNS for a while, but eventually he started gaining well, we ditched the SNS, and he's now 10+ months old and nursing is still going strong and he's a big strong boy now :)

  5. Love the idea of taking a picture of your baby to stimulate letdown! Another thing that worked for me was using a hand's free pumping bra. I have the Easy Expression one (www.easyexpressionproducts.com). It was great! I could touch my baby, stroking her, holding her tiny hand, while I pumped b/c the bra held my pump in place and freed up my hands.

  6. You offer a lot of good information, but I think under "when it just won't work" you could also mention that formula remains an option. Pumping is a huge commitment of time and effort, and it's not always feasible.

    Breastfeeding can be really tricky emotional territory for moms, and it's important to cut everyone some slack.

  7. Cate,

    You are absolutely right! I have a post coming up soon on baby formulas. I eventually used formula with each of my kids (and they're all doing fine ;-)

  8. I agree with pp about "cutting everyone some slack". I am 44 years old,and just had my 10th. Gus has Ds. He was in the NICU for almost 4 weeks with feeding issues. I fed and pumped around the clock. I finally gave in just so he could come home. I continued to pump for about a month, but it was just too hard. BTW I breasfed all 9 of the others. It was devastating at first, but in the end, I've made the best decision for myself, Gus, and the rest of my family. Thanks for sharing this blog with us!

  9. Wow, Anonymous, I can barely keep track of three kids. You have earned as much slack as you want or need. Do you have a blog or other web presence? I would love to read about your family. I bet we could learn a lot from you.

  10. This is an excellent post. You do a good job dealing with the emotionalaspect of the struggle to make breastfeeding work.

    I have an article on my site, a compilation of posts on the ES email list about feeding and nursing an infant with DS.

    Of particular interest in that article would be the sections on the danger of soy formula to the thyroid, and the information from Sara Rosenfeld-Johnson about positioning. I've also compiled posts from moms whose kids are fighting to gain weight prior to heart surgery.

  11. You have an absolutely fantastic blog! It's easy to read and has tons of great information! I have been breastfeeding my baby for 8 months and you taught me things I never knew. Thank you, thank you, thank you!

  12. Breastfeeding my son with Ds took about 3 1/2 - 4 weeks to get going and not much longer after that to be "established". Initially, he would latch but he would not wait for letdown (he would only suck 2 or 3 times and give up). This can be a problem for typical kids also I think. So I pumped and kept trying. I went from the hospital bottle to the Adiri Natural Nurser which is shaped more like a breast, then from that we went to the nipple shield and then from that to the breast. Leo is 10 months now and still a very good nurser.

  13. I just want to point out that sometimes nursing is not possible because of swallowing issues. Eon nursed for 3 weeks before a swallow study showed he was aspirating. He's been on thickened breast milk for over 3 months now.

    Exclusively pumping is not as horrible as I imagined it to be. It allows me specific times throughout the day to check in with my favorite blogs (like this one!)while I pump. Initially, I had high hopes that we would one day establish a good nursing relationship. That hope is waning as time goes on, but I've made peace with it. After successfully nursing five kids, it was a disappointing turn of events to bottle feed this one, but the reality is not so bad. My husband and other kids love the opportunity to feed him!

    If he is ever cleared for thin liquids, we will definitely attempt to nurse. I nurse him after pumping about once a week and he seems to have no problem latching on, so we'll see.

  14. When my first son Andrew was born, I had the *hardest* time breastfeeding him. I've often said that nursing him was akin to wrestling an alligator. I tried many things and stuck it out for 9 1/2 months. I was never so happy as the last day I nursed him. (He couldn't have cared less and was happy to have the bottle.) My stress over all of it really tainted my first few months as a mom, and looking back, I wish I had quit earlier.

    When I found out I was pregnant again, the main thing that I prayed for was for this baby to be a good breastfeeder. When Benjamin was born and we found out an hour later that he has Down syndrome, my LC came to see me (she and I are close friends after all I went through with Andrew!). She told me that many babies with DS have difficulty nursing. Oh, my heart just sank, especially b/c Benjamin had three heart defects. But God was faithful and Benjamin was a WONDERFUL nurser. It was seriously my silver lining. Through the next several week and months of dealing with the diagnosis, mourning the loss of the child we thought we were going to have, and preparing for open-heart surgery, I was so, so blessed that I didn't have to struggle to breastfeed. And now, as a 13-month old, he is a terrific eater as well! He eats more foods and better textures than super-picky-three-year-old Andrew. Yay, Benjamin! Thank the Lord. :)

  15. I'm so happy to have found your blog and all the resources. I'm a work outside of the home, pumping and tandem nursing mother of a 2 1/2 yr old and an almost 4 month old who has Ds. I continue to struggle with getting my 4 month old w/ Ds to nurse. I'm fortunate that my older daughter continues to nurse and between her and my PISA I have a good supply of milk for my wee one. I'm still hopeful that someday we'll have a godd nursing relationship but I am starting to feel at a loss for who to turn to for ideas. She does have a moderate sized VSD that our ped card informed us that as long as she continues to gain weight as she is through 9 mos and nothing new pops up she most likely will not need heart surgery. B/C of that I'm hesitant to stress her too much over eating. We have struggled through feeding her with a syringe and SNS the first weeks when it was taking an hour and a 1/2 to get an oz in her- and often she would throw it back up (or part of it). Then through trying out different bottles b/c she also struggled with Dr. Brown's bottles which I had used when I returned to work after my older daughter. Now she does well with a soothie and can take in 5 oz in about 15-20 minutes and is good at pacing herself when she gets worn out. Sometimes she still throws some of it up other times she doesn't. With all of this I have been seeing a SLP who specializes in feeding- even with the bottle she leaks some milk out the side. But they are hesitant to change anything b/c of the VSD. I tried going to the BF support group where she was born- I love the LCs there and they offered a nipple shield to try. We did a feed and weigh there and she was only taking 1/2 oz w/out the shield after 15 minutes and an oz with the shield after 15 minutes. This was not due to lack of supply. Most of what she got was from my compressing the milk into her mouth. Afterwards I could pump about 6-8 oz from each side- so I know the milk was there as well. She was sick last week with a fever and cold and we were needing to use a nebulizer to make her breathing easier- so last week I didn't push nursing at all and that may have been a mistake- now that she is feeling better I went back to trying to nurse and she outride refused me w/ the shield for the first time. We tried again later when she was calmer and not so very hungry and didn't have much luck either. The other difficulty I have is that my toddlers latch has become problematic and she is grazing the nipple and causing bleeding- and the poor latch with my wee one has caused bleeding as well- so I'm trying to balance getting enough of a break to heal the breasts (I've had light pink to red blood fill up a bottle when pumping at its worst)and enough pumping and nursing to not lose my supply. We've tried different holds/position as well. Any suggestions anyone can offer would be greatly appreciated.

    Nicole- Mom to Maddie and Abby

  16. Nicole,
    Will she still take the nipple without the shield? Does she sweat when she eats? Is she on any heart meds? Have you tried a z-vibe or other vibrating tool for oral stim prior to nursing?

    My favorite non-cardiac-stressful nursing trick was to do nap time nursing. For some reason my daughter seemed to know what to do instinctively while she was falling asleep. I would lie next to her with a book and read while she napped and "nursed". This type of pacifying sucking eventually helped her to nurse better at mealtimes. I know, this is hard to do when you work and have another baby to chase around!

  17. My son was in the NICU, but I was determined to nurse. He was born via unplanned C-section, so I asked for a pump so I could send milk to the NICU. When it came to attempts to nurse, my son didn't latch. A nurse handed me a nipple shield, & that helped a bit. I used a combo of the shield & bottle feeding pumped breast milk. We used pump & store containers & nipples that fit on them.
    The lactation consultant (LC) attempted to help me in the hospital, & it was a bit overwhelming but post-hostpital follow-ups helped. One tip she gave me was to pump after feedings using the shield. She said it would ensure continued supply since shields could cause 2 issues: less direct breast stimulation and incomplete breast emptying.
    Once I went home, I kept using the nipple shield, & based on guidance from the LC and cues from my son, I used the shield, & after 15 minutes nursing, if he wasn't exhausted or full, I'd offer him my nipple. In the beginning, it rarely worked, but I didn't want to give up. Then I noticed that he preferred bottles over breast, so switched to slow-flow nipples on playtex nurser bottles. The flow was slower on those than slow-flow nipples for pump & store bottles.
    Because of the shield, I think, my nipples didn't stand out well, & that presented additional challenges. Therashells helped after only a few uses. After a short while, my son started nursing without the shield for a minute or two. After a couple of weeks of this routine, we were able to go entire feedings without a shield. NOTE: morning feedings were still a challenge. He slept through the night early, and when my breasts were really full, he couldn't latch without the shield. We used the shield for the first 5 minutes of morning feedings for about an additional week, then we were able to discontinue use of the shield.
    My son was born November 8, and by Christmas, we were able to go completely without the shield.
    My husband and I spent a fortune on gadgets. We bought nipple shields...believe me, you'll want more than one if you use them...you will feel absolutely paralyzed if you misplace them (and you will, because they're clear, and if it happens to fall somewhere, you really have to look to find them). We bought a supplemental nursing system because we thought it might help (which we really didn't end up using). We bought therashells. We also bought extra sets of pump parts...when you're pumping after every feeding (and they're every 2 hours), it's nice to have an extra set of shields and parts for the breast pump. We bought wipes to clean the parts, which I'd only recommend for cleaning during long car trips when you have to pump in the car. We also bought a lot of the 80-mL pump and store bottles. We invested in slow-flow nipples for the bottles we chose and the drop-in bottle bags. We also invested in a small 3-drawer unit to house everything from bottles, nipples, lids, and bottle bags to breastmilk storage containers.
    If I had to do it all over again, I'd invest in everything that I bought with the exception of the supplemental nursing system. I'm not saying they're bad, but for our baby, it didn't turn out to be necessary. It's all trial and error, and a lot depends on the baby's abilities, mom's persistence, and support from family and lactation consultants.

  18. The Brestfriend is really great for supporting baby head to toe. My midwife loaned me one in the beginning, and I finally got my own. I cart it everywhere (even 10 months into this) because my sweet daughter just doesn't have the tone to nurse without the support. And my neck and back can't take anymore bending and twisting :)

  19. The Brestfriend is really great for supporting baby head to toe. My midwife loaned me one in the beginning, and I finally got my own. I cart it everywhere (even 10 months into this) because my sweet daughter just doesn't have the tone to nurse without the support. And my neck and back can't take anymore bending and twisting :)

  20. This comment has been removed by a blog administrator.

  21. I just had a baby with DS. He is 1 month. I am pumping right now...I try to nurse him about 2 times a day. He latches on fine at times. He isn't very consistent and he won't do it long enough to be full. I always follow up with a bottle. How will I know when he is ready to nurse only? I nursed my other 3 and it's difficult to know once you know exactly how much milk they are used to getting. He is too sleepy the rest of the time to even try and I have to make sure I'm super "full" so he won't have to work hard to get it flowing. Am I on the right track?

    1. Congratulations, your son is adorable! Sounds like you are off to a good start. You could try a couple things... 1. you could pump a minute or so to get things going before you have him latch on (so he has instant reward for his efforts) 2. Is it possible for you to try to nurse him a couple more times a day? If he nursed even a little bit before he gets each bottle he will begin to really connect nursing with eating, and will eventually nurse more and longer. It can take a couple months to fully get to nursing only, and he may or may not but keep at it.

      If you want to email me, we can talk more in detail about what he is doing and things to try :-) ds.mama at yahoo dot com

  22. Just stumbled onto your blog - it's wonderful. Thanks for all the information! I have a 10 month old son with DS. He latched really well right from birth, despite having an emergency CS with general anesthetic and the resulting sleepiness on both our parts. However, when my milk came in he stopped nursing, outright refusing the bottle. Nipple shields, lactation consultant, etc. didn't help at all. He would sometimes latch and suck a few times, but always come off as soon as I let down. He was in the NICU for the first 10 days and on oxygen for the first month of his life. I had nursed my daughter, so knew latch and everything was right, but he would just completely refuse. Finally, the day he turned 4 weeks old, he was off oxygen and immediately latched and nursed an entire feeding! I never had to pump & feed again. It turns out he couldn't manage breathe-suck-swallow with the constant oxygen pressure plus the amount of milk in my let-down. So any other mamas out there in my situation - don't give up until your baby is off oxygen. It might make all the difference!


Please share your experience and opinions, or ask a question. I won't even mind if you correct me on something.

ds.mama will delete any comments that are simply product advertising.