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LET’S TALK ABOUT PUMPING

Julia’s Way surveyed mothers of babies with Down Syndrome (DS) and discovered that almost 70% of these mothers have to pump at some point during their baby’s breastfeeding journey for reasons other than returning to work (for example: until baby is strong enough to nurse; while waiting for heart surgery; or while baby is recovering from surgery). Pumping can be tiring and it may be challenging to establish your breast milk supply if your baby cannot nurse directly, but it can be done! 

We’ve written this blog post with the input of professionals and moms who have “been there, done that” to help you have the most success. If your goal is to eventually get baby to breastfeed exclusively, you should know it is possible and that the moms who have contributed to this article have babies who breastfed successfully for a year and beyond. If you plan to exclusively pump for your baby we are cheering you on and we admire your dedication to your baby! Please remember, a lot of the tips below are “ideals.” This is what experts and best practice recommend. However, we all know that real life is often not ideal. We want you to be aware of what to do to have the best chance of being successful but we know plenty of moms who haven’t been able to follow these instructions perfectly and were able to provide milk to their babies anyway. The last thing we want to do is add more stress to what may already be a stressful time. 

ESTABLISHING YOUR SUPPLY WHEN YOUR BABY CAN’T NURSE

Establishing a breast milk supply if your baby is not able to suck for whatever reason can be a challenge but it CAN be done! If your baby is not able to latch right away, ideally you will need to start pumping within six hours. 

  • There is some debate about how long it takes to fully establish a breast milk supply but there is research that shows that milk levels at two weeks may be a good indicator of what future milk production will be. Pumping 8-10 times a day for those few weeks will help to ensure a full supply. Aim to pump every 2-3 hours around the clock, with some variation built in. For example, taking a 5-hour pumping break overnight to get some rest is beneficial for most moms. If you were not able to follow these guidelines perfectly at the start, take heart! It may be possible to increase your supply as late as 3-4 months postpartum by diligently pumping.
  • Research indicates that milk production is the highest in the morning and starts to fall throughout the day so it is very helpful to pump first thing in the morning if you are trying to build a “stash” of milk for your baby.
  • A hospital grade pump can help establish your supply in the first few weeks.
  • Looking at a picture, watching a video, or having a piece of clothing that smells like your baby while you pump can all encourage letdown.
  • Hand expression can be more effective at removing colostrum/milk in the first 24-48 hours. This Stanford video can help you learn how. Some women are more responsive to hand expression, in general,  so experiment to see what works for your body.

GETTING THE MOST OUT OF YOUR PUMPING SESSIONS

  • Relaxing music has been shown to have a positive effect on milk supply. You can read the study here and a good synopsis here. Consider listening to something soothing while you pump.
  •  To establish your supply, more frequent pumping is often more important than longer pumping sessions.
  • Massaging your breast for a few minutes before you start pumping can encourage letdown and increase output. This article has good tips on how to do this well.
  • It may seem counterintuitive (and may take longer) but research suggests that you may actually get more milk if you massage your breasts while pumping. This will sometimes mean you will need to pump one breast at a time. Read more.
  • Try the “milkshake”! Lean forward and let your breasts hang down and gently shake them back and forth. This is thought to stimulate the breasts and release the milk droplets from the walls of the milk ducts.
  • Stay hydrated and try to maintain a healthy diet (not always easy when you are eating out of a hospital cafeteria). Protein-dense foods are important for good milk supply.
  • It may be helpful to watch this video on maximizing your milk supply, from Stanford University.

MOM TIP I always tried to have a large glass of water or something else to drink within arm's reach when I sat down to pump. A straw helped me to drink more water more quickly.

  • As long as it does not cause you pain, consider turning up the vacuum pressure during the two-minute letdown cycle. This may help your milk start flowing. After the letdown cycle is over, you can turn down the pressure as needed.
  • Some moms find it helpful to cycle through the letdown phase twice during a pumping session. If you can elicit a second letdown, you can increase your output and supply. On most pumps, the initial letdown cycle lasts two minutes. Pump for 6-7 minutes after that and then push the button to go through the letdown cycle again and pump for another 6-7 minutes.
  • Check your flange size. Sometimes going up/down a size will stimulate the nerve systems behind your areola more efficiently, thereby allowing for a better and more productive letdown, which leads to more milk. This article can help you determine your flange size but it may also help to be assessed by a lactation consultant.
  • If you are having a difficult time with your milk output, try “power pumping” (pump for 20 minutes, rest for 10 minutes, and pump for 20 minutes. Repeat this cycle for an hour). This simulates “cluster feeding” and can help increase your output.

MOM TIP I was so hesitant to call a lactation consultant because I felt that pumping wasn’t really nursing. When my OB told me “pumping IS breastfeeding” I felt so empowered. Little did I know how much a lactation consultant could help me to increase my supply and maximize my pumping sessions. I was also concerned that any lactation consultant might be discouraging of my efforts because my daughter had Down syndrome. If you have this concern too, it might be helpful to ask your local DS community who they’ve used who has been supportive. 

SAVING YOUR SANITY

We know that pumping can be challenging and exhausting, especially for those with the demands of older children, work, and/or medically complex babies. We hope these tips can help you save you some time, and maybe even some sanity, too.

  • Consider purchasing two pumping kits to cut down on washing parts as frequently. Make sure to read the CDC's guidelines for keeping your pumping parts clean.
  • We know it’s not always possible, but if it is, try to make pumping time “me time.” Use that time to unwind: bring a book, a favorite TV show, catch up on social media, or, meditate to the rhythmic sound of the pump. 
  • Most instructions suggest pumping 20 minutes at a time but that’s not always necessary. As we’ve stated, more frequent pumping is often more important than longer pumping sessions. So, take note of how much milk you have pumped after 10 minutes and then how much you’ve pumped after 15 minutes. If it is not a significant amount, you may want to shorten your sessions and concentrate on hand expression for a few minutes after pumping.
  • Especially if your baby is very young (thus not yet into everything) it can be helpful to pump while you are feeding your baby from the bottle.
  • Store pumping parts in a ziplock bag or other sealed container in the refrigerator between pumping sessions so you don’t need to wash as frequently.

MOM TIP I had a pumping station set up upstairs and downstairs (and in the car!). I used to pack a little cooler to take upstairs overnight. It contained all of my pumping parts and bottles to store the milk in. That way I didn’t have to leave my bed to pump. I washed everything in the morning.  

  • If you have it in the budget, consider these items that may make pumping a little easier:
    • a hands-free pumping bra
    • freemie cups, which allow you to pump discretely anywhere, even while driving
    • an AC adapter to allow you to pump in the car (helpful when driving to work or doctors appointments, which you may be doing frequently in the first few weeks)
    • a second set of pumping parts, so you don’t have to wash so often
    • lanolin or nipple butter that is safe for baby to decrease chaffing, which can cause discomfort in the beginning. Breast pads that you can freeze or heat up in the microwave can be helpful, too. Cold helps if your breasts are painful from pumping at the beginning and heat can help if you have a clogged duct.

SOME GREAT THINGS ABOUT PUMPING

  • If you have to go out with your baby, pump right before you leave and just carry your milk with you. It’s good for 6-8 hours at room temperature. See the CDC website for full guidelines.
  • Many moms have such a good supply when pumping that they actually donate milk to other babies who may need it. It is extremely rewarding to know that your milk has not only benefited your baby but other babies as well.
  • If you pump and give your baby breast milk through a bottle it means that other family members can help you with feeding time.

MOM TIP If you can’t nurse your baby and have to pump, this is the perfect time to recruit your partner or family member to help. Two nights a week my husband would take the night shift. I would pump right before bed, deliver a fresh bottle of milk to the bedside, and head off for my uninterrupted five hours of sleep. He would feed our daughter my expressed breast milk while I slept. I was bummed that I couldn’t nurse my daughter for the first several weeks of her life but I was really happy to have that sleep!

 A NOTE ABOUT GALACTAGOGUES

A galactagogue is something that you eat or drink that is thought to increase your milk supply. Many cultures have special food or drink that is traditional for new mothers to consume immediately after birth and research is beginning to show that those traditional foods frequently have a positive impact on milk supply! Galactagogues can be very helpful in improving milk supply but it’s important to remember that they do not work on their own. They have to be coupled with increased demand for maximum effectiveness. They can help your body to make more milk. There are several different galactagogues available. Kelly Mom has a good article on the pros and cons of using herbs to help your milk supply. This is not an endorsement of any supplement or herb for this purpose and it is suggested that you consult your doctor or lactation consultant before using any herbal supplement, tea, etc., to increase your supply. It is important to note that different galactagogues respond to different hormones so if you do have a low milk supply it may take some experimentation to see what your body responds to.


MOM TIP I ate a ton of oatmeal, drank plenty of water, and recruited my sister to make me “lactation cookies.” They were DELICIOUS! I can’t say if I definitely noticed an increase in my supply but I seemed to notice a bump in supply when I had them around. Bonus: If you are lots of family around wanting to do something helpful, ask them to make lactation cookies! They'll be doing something useful and you'll get the benefit of a boost in milk supply!

We hope these tips will help you prepare in case you need to pump for your baby and will help you maximize your pumping sessions. Pumping is hard work! You should make it worth your efforts. Whether you need to pump for a week or a year or more, we are here to support and encourage you.

 

We are so thankful to Dana Paris Mahoney, BA, IBCLC, RLC of The Robin's Nest Lactation Services, Jill Rabin, M.S. CCC-SLP/L IBCLC and Sruthi Muralidharan of No BS about DS for their help on this piece. 

 

PREPARING TO BREASTFEED YOUR BABY WITH DOWN SYNDROME: A GUIDE TO TAKING YOUR BABY HOME

BY JILL RABIN

This is the last in a three-part series on preparing to breastfeed your baby with Down syndrome, written specifically for women with a prenatal diagnosis by Jill Rabin, an International Board Certified Lactation Consultant and Pediatric Speech Pathologist. Read the first part and the second part. 

Congratulations, it’s time to take your baby home. What an exciting time for your new family! If breastfeeding did not work out quite as planned in the hospital, you may need continued lactation support at home. Many International Board Certified Lactation Consultants (IBCLC) can make home visits to assist your baby in transferring to the breast. Your hospital’s lactation consultant or moms in your local Down syndrome (DS) community can often recommend someone experienced in working with babies with special feeding needs. 

If milk intake and weight gain were the primary concerns while your baby was in the hospital, you might be feeling nervous about breastfeeding, worrying that your child is not getting enough to eat. Frequent weight checks are sometimes recommended in the first few days and weeks after discharge to confirm that your baby is receiving enough milk to gain weight and thrive. There are a variety of reasons that babies with Down syndrome may need to be supplemented with a bottle (with fortified breast milk or formula depending on his or her needs) after breastfeeding. Weighted feedings, when a baby is weighed before and after a nursing session, can help you and your lactation consultant determine if this is necessary for your baby. Weighted feeds are also a great way to see the progress that your baby is making from week to week and can prevent you from over-supplementing. You can also do weighted breastfeeding at home, by buying or renting your own scale. In addition to the scale, there are many breastfeeding smartphone apps, which track your baby’s feedings, as well as the number of wet and dirty diapers. These records will reassure you and your baby’s medical team that your baby is indeed taking in enough breast milk. We understand that doing weighted feeds at home may seem overwhelming to you. If so, that’s okay! Tracking the number of wet and dirty diapers should be enough for most babies.

Use of feeding equipment, such as a nipple shield or a supplemental nursing system (SNS) may be recommended by your lactation consultant to help get your baby to the breast. A nipple shield is a circular piece of silicone that goes over your nipple and may make latching to the nipple and sustaining a sucking pattern easier. A SNS is a thin plastic tubing system. One end is taped to your breast and the other is attached to a bottle of your pumped milk. The SNS allows your baby’s sucking efforts, which may initially be weak or ineffective, to be rewarded with milk. The SNS also helps your baby establish appropriate suckling motions and encourages bonding. It has the added benefit of forming an association between being at the breast and having a full belly. Use of both the nipple shield and the SNS is often short term but can be vital in making the transition to breastfeeding exclusively. Even if your baby has a nasogastric tube or a G-tube in place, they can practice suckling at the breast. Skin-to-skin contact or “kangaroo” care, paired with suckling at the breast with or without the SNS may increase your milk supply and “set the stage” for breastfeeding until your baby becomes strong enough to start transferring milk effectively. “Babywearing” is an easy way to have skin-to-skin contact. Several types of carriers allow you to hold baby snugly against your bare skin while having your hands free. Babies usually love being carried close to their mother’s bodies and it can be a simple and easy way to soothe and snuggle your baby. Baby Wearing International is an excellent resource and they have meetings in several locations worldwide. They even have scholarships to encourage mothers of children with special needs to wear their babies. 

Babies with Down syndrome usually have low muscle tone and have to work harder to maintain their bodies in position to breastfeed. A good chair and a supportive pillow or a baby carrier to help position your baby will reduce the work your baby has to do to feed and will free up energy for oral motor muscles to engage in latching and suckling. Correct positioning helps the baby to latch onto the breast better and encourages optimal milk transfer. Many mothers find side-lying nursing to be a very helpful position for nursing their babies with DS. Also, if your child has torticollis or lip or tongue ties he or she might not be able to compensate as effectively for them as other children due to the low muscle tone. It is essential that any ties are reversed and torticollis resolved to allow your baby to breastfeed. This is where you, again, may have to advocate for your baby. Some medical professionals still believe that babies with DS cannot breastfeed and will not do a thorough assessment to verify that all reversible issues are discovered and corrected. If your baby is having a difficult time nursing and no one on your medical team mentions assessing your baby for these issues, please ask them to do so.

While working to transition your baby to the breast, you will have to pump to establish and maintain your milk supply. This issue will be addressed more fully in a future article but you can also find valuable information in our 2nd article in this series and in our brochure, Nursing Down Syndrome: A Short Guide to Breastfeeding Your Baby. It can be a challenge to establish your supply when your baby is not able to directly nurse or with a baby with a weak or ineffective suck. If needed, you can talk to your lactation consultant about dietary and natural ways to enhance milk production. It is important to remember that these methods do not work in isolation and still require frequent and consistent pumping with an electric breast pump. It may be useful to ask your local DS organization or medical program if there are moms in your area who would be willing to support you through this process. There are also many social media sites that can also provide support and encouragement, although it’s good to remember that every feeding case is different and these are often moms and not medical professionals giving advice.

You may require ongoing support from the lactation consultant and speech pathologist, but with time and patience most babies with Down syndrome can successfully transition to breastfeeding. In addition to working with these feeding specialists, it is important to work on “tummy time” with your baby. Often when mothers have feeding difficulties with their babies, they have less time to practice placing their babies in a prone position or on their tummy. However, frequent tummy time exposure is critical and will help improve their trunk and shoulder strength, which in turn, results in improved jaw and tongue function for feeding. You can even practice skin-to-skin contact and tummy time at the same time by lying on your back and having the baby on your belly or chest. Hold onto your baby securely and talk or sing to him or her. Often babies will lift their heads to see their mommy’s face, helping them develop head control, and making them stronger, as described above.

It is important to contact your local early intervention (EI) program as soon as you return home. Your pediatrician can make a referral if one wasn’t made while your baby was in the hospital. You should arrange a developmental assessment with an early intervention team as early as possible. This team should include, but is not limited to, a developmental therapist, speech pathologist, and physical therapist. Occupational therapists and dieticians may be needed as well. It is important to have these evaluations take place right away to assist your baby in developing to his or her full potential and to provide you with ideas for positioning, playing, and feeding. They will instruct you on how to do “tummy Time” with your baby as this will have a positive impact on your baby’s development and feeding skills, as previously mentioned.

Possible medical complications, such as heart and respiratory issues, prematurity, low tone, and excessive sleepiness, can make the initiation of breastfeeding difficult. It is possible that you may need to pump for an extended period of time until your baby can successfully transition to the breast or if, for some reason, your baby is not discharged from the hospital at the same time as you. Sometimes babies with DS are not fully able to breastfeed exclusively until they are three to four months of age. Maintaining your milk supply is the key to ensuring that transition to breastfeeding is possible when your baby is ready. This is often best done by pumping frequently with a hospital-grade breast pump. You may need to continue pumping eight to twelve times a day if you are exclusively pumping. Pumping after each nursing session is important if your baby is still not strong enough to fully empty your breasts. Your baby may initially have difficulty transferring sufficient milk from the breast due to fatigue, low tone, or weak sucking reflex. For these reasons, in addition to medical complications, babies with DS often require bottle feedings of expressed breast milk to receive the necessary daily calories, at least until they get strong enough to nurse efficiently. One thing that may reassure you is that babies with Down syndrome don’t appear to have as much difficulty transitioning to the breast after receiving bottle feedings as other children. There also doesn’t seem to be a “magic window” for children with Down syndrome to learn to breastfeed and most tend to “get it” within the first few months.

The key to breastfeeding your baby with Down syndrome is being prepared and understanding the obstacles that you may encounter. You may need to strongly advocate for your baby as there are still health care professionals who are unaware that most babies with DS can successfully breastfeed. Surrounding yourself with knowledgeable health care professionals and a strong support network will generate positive results for you and your baby. Breastfeeding is not only possible for your baby with Down syndrome but is an important and therapeutic starting point for them. With the countless benefits of breast milk for your baby, in addition to the oral structural changes that can result from the act of breastfeeding, you are getting your baby off to a great start. While it may take them a little longer to transition to exclusive breastfeeding, and possibly require a little more intervention from professionals, it is definitely an attainable goal!

Read the rest of the series!

PREPARING TO BREASTFEED YOUR BABY WITH DOWN SYNDROME: A PRENATAL GUIDE

BY JILL RABIN

This is the first in a three part series on preparing to breastfeed your baby with Down syndrome, written specifically for women with a prenatal diagnosis by Jill Rabin, an International Board Certified Lactation Consultant and Pediatric Speech Pathologist. 

So you know in your pregnancy that the baby you’re carrying may have Down syndrome (DS). You had every intention of breastfeeding this baby, especially if you have other children that you have breastfed previously. You may be asking yourself, can this baby breastfeed as well? Will having a diagnosis of Down syndrome mean my baby won’t be able to breastfeed?

Like everything in life, being prepared is essential. This is true whether you are training for a marathon, traveling to another country, or having a baby. While there have been many positive changes in respect to medical professionals and their understanding of the capabilities of little ones with Down syndrome, there is still a lot of misinformation about whether they can successfully breastfeed. I am here to tell you that they absolutely can, and in some instances they will transition to the breast just like any other baby.

There may however, be little bumps in the road that can complicate breastfeeding or delay its onset and smooth transition. If your baby is born prematurely, or has a heart or other medical condition at birth, this can prolong his or her discharge from the hospital and interrupt the feeding process. Also, a combination of low muscle tone, poor endurance, weak suck, and excessive sleepiness, often associated with newborns with Down syndrome, can further impact the feeding process. Some babies with Down syndrome may initially require nasogastric tube feedings and even bottle feedings. However, over time, with the right guidance from a lactation consultant, most babies can transition to exclusive breastfeeding. Being informed on what you need to do and how to do it is essential in making breastfeeding work. Your advocacy for your baby will start right at his or her birth, and sometimes even before. Educating others about what babies with Down syndrome can do may be part of the process. Not only is breast milk the best and healthiest food option for your baby with Down syndrome, but the process of breastfeeding itself can result in oral structural changes in your baby that can positively impact their breathing, palatal development, and future speech capabilities.

How do I prepare to breastfeed my baby with Down syndrome?

To best prepare for breastfeeding your baby with Down syndrome, it is helpful you to take a breastfeeding class and understand how breastfeeding works. As the frequency of breastfeeding is different from formula feeding and you don’t have a bottle to look at as an indicator of how much your baby consumed, it’s essential to know how many feedings your baby needs in 24 hours and how to determine appropriate output. You also want to check prior to delivery if your insurance will cover the cost of a breast pump. If for any reason your baby needs to be separated from you after birth, or you need to express breast milk long-term, it is essential for you to have a hospital-grade electric breast pump. A hospital-grade electric pump is the strongest pump available and will ensure you can maintain your milk supply over an extended period of time. Establishing and maintaining your milk supply is key, until you can be assured that the baby is transferring milk adequately. You also might want to contact the hospital where you are delivering and speak to their lactation consultants prior to your delivery. Let them know you may require some extra assistance as your baby has Down syndrome. Just because your baby has this diagnosis does not necessarily mean that he or she will have feeding issues, but if breastfeeding is a priority then it is best to be prepared.

In addition to ensuring there are lactation services available at the hospital where you are delivering, you want to secure lactation follow-up for when you get home, for ongoing support and assistance, if required. When looking for a lactation consultant, you want to seek out someone who is an International Board Certified Lactation Consultant or IBCLC. Ask them if they have experience with working with babies with Down syndrome, as they have to understand how low muscle tone and possible accompanying medical issues can impact the feeding process. Experience with management of feeding a baby with Down syndrome is key. This may involve extended time, follow-up and use of various feeding equipment, such as a digital scale, nipple shield, and supplemental nursing system. While some babies with Down syndrome may have no difficulty with transitioning to the breast, others may require more assistance. It is not unusual for some babies with Down syndrome to take up to 3 or 4 months to transition to exclusive breastfeeding. It is important to remember that there does not seem to be a “window” that closes for babies with Down syndrome and many frequently get the hang of breastfeeding as they get older and stronger.

This is also a great time to establish a support network. There are many organizations that can assist new parents who are having a baby with Down syndrome, as well as social media sites where you can communicate with other families. Establishing that support network early on can assist you in finding local resources, where other families can advise you on doctors, therapists and lactation consultants they have used with their own children. Facebook groups such as Down Syndrome Diagnosis Network have pages for expectant moms and a page dedicated to breastfeeding/pumping for babies with DS. Julia’s Way, Breastfeeding Children with Down Syndrome and/or Special Needs, and Down Syndrome Babysteps, all have Facebook pages which allow for networking and support for breastfeeding. Remember that while these social media sites can provide great information and resources for you and your baby, you always want to contact a qualified professional, such as an IBCLC, if you encounter breastfeeding difficulties. Many moms on these sites are simply reporting their own personal experiences and every situation is different, so if you are having serious issues with feeding you always seek a professional opinion from an IBCLC.

The key to breastfeeding your baby with Down syndrome is being prepared and knowing about the obstacles you may encounter. We often need to strongly advocate for babies with Down syndrome as there are still health care professionals who are unaware of their ability to successfully breastfeed. Surrounding yourself with knowledgeable health care professionals and a strong support network will yield positive results for you and your baby. Breastfeeding is not only possible for your baby with Down syndrome but an essential and therapeutic starting point for them. While it may take them a little longer to transition to exclusive breastfeeding, and possibly require a little more intervention from professionals, it is almost always an attainable goal! Good luck and remember, you are not alone!

Read the rest of the series!