Breastfeeding Your Baby with Down Syndrome - Part Two

Last week guest blogger Lisa Morguess from Life As I Know It shared her personal story of overcoming several obstacles to develop a breastfeeding relationship with her son Finnian. This week she shares with us some of the tips and resources she found helpful.

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Tips and Tricks
~ First and foremost, if anyone tells you that breastfeeding your baby will not work because she has Down syndrome and you have your heart set on breastfeeding, walk away. Believe it can be done; plenty of moms have successfully nursed their babies with Down syndrome.

~ Find a good lactation consultant, preferably one who has some knowledge about Down syndrome and the unique challenges that can be associated.

~ Experiment with different nursing positions. There is no one position that works for all moms or all babies. I had the most success when Finn was a newborn with the cradle hold, the cross-cradle hold, and the football hold. I found the football hold especially useful when using a SNS/LA, and the cross-cradle hold when using breast compression.

~ Breast compression is an effective way to increase your milk production and increase baby's intake. It works by manually compressing the breast as baby is nursing, slowly and repeatedly, thereby stimulating milk production and encouraging a baby who may have a weak suck to take in as much milk as possible.

Useful Contraptions and Accoutrements
~ A good breastfeeding pillow is a must. A Boppy probably won't cut it, as the low muscle tone associated with Down syndrome necessitates a very firm foundation on which to support your baby. I highly recommend the My Brest Friend pillow.



~ Some babies with Down syndrome do better with the sensory input of the more rigid shape of nipple shields. Using the shields is usually only short-term, while a newborn is learning to efficiently latch and suck.



~ Sometimes it is necessary to use a supplemental nursing system (SNS), also known as a lactation aid. If your baby is having an especially difficult time with latch and/or suck, and because of this she isn't gaining weight appropriately and your milk production is diminishing, an SNS might help. The SNS allows baby to receive supplemental milk while at the breast, and this in turn stimulates milk production. If you need to use an SNS, try making your own instead of buying one. The ready-made systems are difficult to use and they're not cheap. A homemade one is inexpensive, easy to make, and easier to use.

A breast pump is a must for any breastfeeding mom, for those times when you are separated from your baby (for a variety of reasons), and need to keep your milk production “on schedule.” If your baby has any medical issues that require a separation from you, it will be extremely important to establish milk production as soon as possible by pumping your breasts at regular intervals (or if the separation is later, for instance due to heart surgery, it will be important to keep your milk production going). A breast pump is also extremely helpful in establishing and maintaining your milk production while a baby who has any feeding/latch/suck difficulties works out the kinks. Though I won't recommend a particular brand, I do encourage getting an electric double pump, as they are far more efficient and effective than manual breast pumps. You can rent a hospital grade pump from almost any hospital for a nominal cost, or you can buy one new from a variety of websites and baby stores, and you can even buy a used one at a discount on eBay or Craig's List. When you buy a used pump, you're basically buying the motor; you will need to buy your own new, sterile tubing, collection bottles, and breast shields.

Supplements to Increase Milk Production
A well-balanced diet and ample fluid intake are necessary for sufficient mild production. If you find, that your milk production is lacking (which often happens when a baby has feeding difficulties), herbal supplements can help, including fenugreek and blessed thistle taken together. These herbal supplements are available in capsule and tincture form from any health food or whole foods retailer.

If herbal remedies don't do the trick, there is Domperidone (Motilium), a prescription drug whose intended use is treating certain gastrointestinal issues. It has an off-label use of increasing milk production in lactating women. (The FDA issued a warning at some point against using it for this purpose, and I'm not going to go into the ins and outs of that particular issue except to say that it has been used safely by a great many women who may not have been able to successfully nurse their babies otherwise. I used it for over two years and never suffered a single side effect.) If your doctor does not want prescribe it for you to increase milk production, it is available without a prescription from various international pharmacies online. Be assured that this is perfectly legal. The pharmacy I used to obtain Domperidone was inhousepharmacy.biz.

Some Wonderful Resources
International Breastfeeding Centre
Breastfeeding Inc.
Breastfeeding Online
Kelly Mom
La Leche League

Breastfeeding Your Baby - Part One

In part one of this two post series on breastfeeding a baby with Down syndrome, guest blogger Lisa Morguess from Life As I Know It shares her personal challenges and triumphs nursing her son Finnian. Next week in part two, she gives practical advice on how to establish and maintain a successful breastfeeding relationship with your newborn.
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One of the many widely-held misconceptions about Down syndrome is that babies with Down syndrome won't be able to breastfeed. Though breastfeeding a baby with Ds can be challenging, I would like to offer some encouragement to expectant and new moms of babies with Down syndrome who would like to breastfeed.

I'm not a medical professional or a trained lactation expert… but rather just a mom who, before my own son was born with Down syndrome, successfully nursed five babies for the long haul, and was determined to breastfeed my sixth baby, Down syndrome or not.

Not every baby with Down syndrome is faced with difficulties in breastfeeding but for those who are, the two main things that hinder breastfeeding are low muscle tone, and immediate and prolonged separation of mom and baby due to issues the baby might have that require a stay in the NICU. Finnian and I were challenged with the latter issue.

Finn was born at home, where he stayed for roughly half a day before we had to rush him to the ER because he was spitting up blood. In the first few hours after his birth, he was so sleepy that he never really woke up enough to latch on well and nurse. In the ER he was hooked up to all kinds of tubes, wires, and monitors and by that evening, he was diagnosed with a duodenal atresia. He was admitted to the NICU and had corrective surgery the following morning.

For several days, while his intestines healed from this major gastric surgery, he was fed intravenously and I was not allowed to attempt nursing. My milk came in during that time, and I began pumping at regular intervals around the clock and storing my milk for him. I was told that he'd most likely have to start with bottle feeding, and it became clear to me pretty quickly that we had some major challenges ahead of us.

I was heartbroken at the prospect of not being able to nurse Finn. For me, breastfeeding is a huge part of how I mother my babies, and I could hardly fathom not being able to share that with Finn.

When Finn was cleared to tolerate oral feeds about a week after his surgery, the nurses in the NICU were supportive of my desire to breastfeed; however, it was frustrating because everything in the NICU had to occur by the clock and by the numbers. He had to be fed on the schedule the nursing staff set down for him, and if I couldn't make it to the hospital in time, he was given a bottle (of my breast milk). If I was there to nurse him, he had to latch on within a certain number of minutes or I was made to call it quits and give him a bottle. The same went if he didn't take the prescribed number of ounces in the time allotted. It was all very stressful, and I spent a lot of time crying. The stress and the pressure didn't go very far in helping us get a good breastfeeding relationship established. There were lactation consultants on hand, and they were helpful, but all in all, it was a frustrating, discouraging situation.

Convinced that Finn would do better at home where I could nurse him around the clock without the constant supervision and vigilance of the nursing staff, I couldn't wait to get him out of the hospital. By the time he was discharged twelve days after he had been admitted, we were nursing, but it was hit or miss. I was using nipple shields because he seemed to do better with the rigid shape of the shields, which were similar to the bottle nipples he was already becoming used to. I would nurse him and then my husband would follow up with a bottle of expressed breast milk to make sure he was getting enough.

As I suspected, he did seem to do better once we got home, and within a couple of days I was able to ditch the nipple shields. He was latching on well (it seemed), and nursing well (it seemed). It wasn't long before we stopped supplementing with bottles of breast milk, and I was exclusively nursing him.



It soon became clear that he wasn't gaining weight. He had weighed 6 pounds at birth, lost the typical several ounces that babies lose directly after birth, then lost more after his surgery. I think in the NICU he went as low as around 5 pounds. By the time he was discharged, he was back up to his birth weight, but after a week at home, he was still at 6 pounds. Then after another week or so, he had only gained another ounce or two.

I'll never forget our pediatrician - whom I love for the most part - sending me home with several cans of formula and telling me that Finn most likely just wasn't going to ever be able to nurse well because of his Down syndrome. I was devastated. None of my babies had ever received formula, and I felt like a failure.

Fortunately, my midwife insisted that: (a) if I was going to supplement, it should be with the breast milk I had stored while Finn was in the NICU, and (b) I needed to find a really good lactation consultant. I did both. I found a lactation consultant who refused to believe that Finn couldn't nurse simply because he has Down syndrome. Yes, it was going to be a challenge, but it could be done, she insisted.

The LC set me up with a supplemental nursing system (SNS) and spent oodles of time with me and Finn over the course of several appointments, observing us and giving me tips on positioning, etc. With her help, Finnian and I were able to overcome the hurdles that were in place.

Despite my perception that Finn had learned how to latch and nurse well, it apparently wasn't the case, and because he actually wasn't latching properly and his suck wasn't great, my milk production went down, so he wasn't getting enough, and the cycle was set in motion. Even after Finn’s latch improved, my milk production did not recover and I began taking herbal supplements to increase yield. Supplements helped to a degree for a time, but eventually I turned to Domperidone which helped immensely, and was the final missing puzzle piece for us.

Finn nursed until he was thirty-three months old when he self-weaned, which was bittersweet for me because he was going to be our last baby (he is not though... you never know what life is going to throw at you!). Getting breastfeeding going was definitely an uphill battle for us, but through perseverance and good support, we were able to make it work, and it was completely worth it to me.
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Tune in next week to get the specifics you’ll need to overcome complications and breastfeed your baby with Ds.

Stand Up

As a new parent to a baby with Down syndrome you learn fairly quickly that the world isn’t always the kindest place to raise kids. There are lots of things out there that hurt our feelings, and our children’s sense of worth.

This brings out the mama and papa bears in us and we become advocates and educators. We want the whole world to see our precious children through our loving eyes. That is why so many of us blog and make use of other social media.

And right now we are big news. We are working hard to eradicate painful insults by letting people know that it hurts and that it is unacceptable, and immature. The culture around us is rumbling with fallout from Rahm Emanuel’s highly publicized indiscretion. It is the right time to stand up and be heard.

Please head over to Oz Squad and sign the letter written to educate Sarah Palin on the best way to fight for our children. She has the speaking platform we need and we have the voices she can use.

Heart Scar

One of the most frightening things parents may ever face is surgery on their baby. It is said that approximately 45% of babies with Down syndrome are born with a congenital heart defect. Many of these defects require corrective surgery. Before you read anything else, know that heart surgery today has a 95-99% survival rate. I can’t minimize the fear and risks involved but it is important to know that these are very common surgeries performed by excellent, experienced pediatric heart surgeons.

The most common defect is a hole in the heart between the two upper and/or lower chambers which allows oxygenated blood to mix with blood that is returning into the heart. These types of defects are called AV Canal (endocardial cushion defect), VSD, and the less common ASD.

The hole in the heart types of defects usually lead to open heart surgery when the baby has gained some weight and grown a bit. The timing of surgery is often decided by balancing weight gain versus the slide toward congestive heart failure (CHF). CHF is the medical term for saying that the heart cannot continue to do its job without the support of medication (lasix, digoxin, etc.) and perhaps oxygen.

While I am talking about such scary stuff, I will also mention there are more rare heart defects that require surgery before a baby can leave the NICU. A coarctation of the aorta is one such defect.

A baby with a congenital heart defect will be followed by a pediatric cardiologist. She will get echocardiograms (a fancy heart ultrasound) and heart x-rays. She might also get an ECG (the test where they stick the wires on her chest and measure the heart’s electrical activity), or even perhaps a heart MRI. All of this information is shared with a pediatric heart surgeon and he will use it to determine the appropriate surgical fix.

When I first heard (at 30 weeks gestation) that my baby would need heart surgery for an AV Canal defect, I was terrified. The sick-to-my-stomach kind of scared. And I had visions of an angry red zipper scar running from the bottom of her neck to her abdomen. When at three weeks old they told me she had a coarctation of the aorta that required immediate surgery, you could have knocked me over with a single breath.

So yeah, I won’t minimize it. Heart surgery is scary for us parents. The first look at recovery is daunting. There are multiple wires and tubes attached, each serving a unique purpose. But, your baby is feeling no pain and she is being cared for by two or more cardiac nurses specially trained to aid in her recovery. You however may need a stiff drink.

The recovery period for a baby is amazingly quick. In most cases, you will be home within two weeks of surgery. Six weeks later, you will stare at your strong happy baby and wonder if it ever really happened. And there it will be, a thin line a few inches long drawn down her chest, the heart scar. The badge of courage and strength, that if kept out of the sun, will nearly fade away over the next few years.



Your Turn
If your baby has a congenital heart defect that requires surgical repair, you may want to take some time to visit the blogs listed under the Sweethearts & Fighters blogroll in the left column. The path is well worn and you may find encouragement and peace as you read through the stories of those who have walked before you.

Somewhere in Kazakhstan...

There is a little girl named Jasmina who is waiting to be adopted. She is a beautiful child who has Down syndrome, and she is the only child with Ds available for adoption through Reece’s Rainbow in Kazakhstan. More than anything I would like to be able to give this child her forever family for Christmas. But I am not God or Santa and I cannot grant her wish with just my will.

I can donate to her adoption grant and I can ask all of you to consider this gift as well. If you have anything left in your charity budget this year, please give to Reece’s Rainbow on behalf of Jasmina or any of the angels that are hoping to be saved from life in an institution.

Reece’s Rainbow accepts PayPal but prefers checks to save on processing fees. If you are going to send Jasmina a Christmas gift for her fund, please make the check out to Reece’s Rainbow and put Jasmina’s name in the memo. Mail the check to: Reece’s Rainbow, PO Box 4024, Gaithersburg, MD 20885. Thank you.

May you and yours be blessed during this wonderful holiday season.

Everybody Should Do It

Imagine that you are a stay-at-home parent to three children and your spouse just had open heart surgery. There’s no short-term disability, no vacation hours to use up. There will be no paychecks during your spouse’s six to eight week recovery period. What a nightmare. Aren’t you glad this isn’t happening to you?

Well, the Flege family is going through that nightmare right now and we have the opportunity to help them out. CJ over at The T21 Traveling Afghan is holding an online raffle to benefit this family. Throw a few bucks into one or more of the raffle pots for the items you’d like to win (you can do this by clicking the donate button associated with the item you want and then use PayPal to transfer the money.) The winners will be chosen randomly after the raffle ends.

Go on over there and check it out. There are some really nice items up for raffle (ahem, some of which I made by hand.) Let’s show our support and help a family in our community who needs us right now :-)

Do You Live in Michigan?

And do you have Priority Health insurance? So far so good.... Did your baby have heart surgery at MOTTS Children's Hospital at the University of Michigan? Did you get PH to cover it?

PH is denying Kaitlyn’s upcoming surgery if it is performed at MOTTS. Kaitlyn’s mommy needs to find at least one of the families who got the surgery approved there. If you answered yes to all these questions, can you please go visit Jenee and tell her?

That Rowdy Tongue

The rumors are true... some of our children are well-endowed with super-dee-duper tongues that come in quite handy for long distance frosting frolicking. The tongue, being a muscle, is susceptible to hypotonia and thus may be a bit difficult for your baby to keep under control.

Don’t stress about it because there are lots of things you can do to teach your little one how to manage her tongue. In the early years you will need to do the work of training this muscle for her. The payoff is greater oral motor control which means an easier time eating and speaking, as well as keeping her mouth closed when in a resting state.

The best exercise you can do is called tongue-walking. Every time your baby’s tongue is hanging out you can walk it back in by using your finger (keep gloves or antibacterial hand sanitizer on hand) to gently tap tap tap from the end of it up the center of it until you have reached the middle portion of it. Your baby’s tongue will instinctively retract and tighten in response to your touch. Do this exercise a few times in a row several times a day and anytime you spot her tongue being lax.

Other exercises include various versions of “kissing”. Put your face up close to your baby’s face and make a rounded kiss shape with your lips. Then make the kissy sound. Your baby will try to imitate you thus pulling in her tongue and strengthening her lips and cheeks. You can also do this using the “m” sound positioning of your lips. Make the sound “ma ma ma” and then put your mouth in the closed “m” position right on your baby’s mouth and hum the “m” sound so she can feel the vibrations on her lips. This also encourages her to imitate you and helps her to feel what that closed mouth “m” sound is like.

When your baby is ready to move on from the nursing or bottle stage, you can offer a cup that has a straw. Mr Juice bear or the NUK straw cup (available online at beyondplay.com and in-store at Walmart, respectively) are great options. Teaching your baby to drink from a straw rather than a sippy cup will stimulate good lip closure and keep her tongue in. (Sippy cups allow her tongue to slide out under the spout enabling bad habits.)

As your child gets older you will be able to add gentle touch mouth cueing to get her to pull her tongue in and close her mouth. There may always be times when she is tired, excited, or concentrating hard that her tongue will try to make an escape but by working with her from a young age you will minimize this and help her to gain control over that rowdy tongue.

A Dozen Tips for Navigating NICU/PICU

Neonatal and pediatric intensive care units can be intimidating places. Unless you are in the field of pediatric medicine, you are way out of your element and it can feel like they all know more about your baby than you do. I am going to share twelve tips that can make ICU time easier on you and your baby.

1. Understand your baby’s condition. Go ahead and google reputable sources. In the two hospitals we did time in, I got the clear impression that the doctors did not want parents reading up on the internet. They felt that it filled their heads with unwarranted hope and misinformation. I disagreed. Reading about cutting edge technologies or other children’s miracles and successes helped me to formulate questions that needed to be asked and to stay encouraged. It also helped me to stand up against doctors’ suggested procedures and care orders that I was uncomfortable with and not convinced about.

2. Try to be at your baby’s bedside for rounds (when the doctors change shifts they walk around the floor and share information about each child’s current status.) Every change or happening from the night before or planned for that day will be discussed amongst the doctors and nurses. This is your chance to be apprised of every detail concerning your baby. Some NICUs and PICUs do not welcome parent eavesdropping or participation during rounds, but don’t be deterred. Ask for a clear explanation of why you should not be there to hear the details of your child’s day. You are your baby’s primary advocate. It is imperative that you are able to hear and understand what decisions are being made and why.

3. If you do not already have a blog, set up a Caring Bridge type of website (easy and free) to communicate your baby’s updates to family and friends. Using social media to broadcast messages means you only have to say (or rather, type) the information once and everyone can read the news. It also provides a wonderful way for those who care about you and your baby to let you know they are thinking of you.

4. Ask the neonatologist or attending physicians for verbal notification of all written changes to your baby’s medication orders and care orders. Make sure you understand why the change is being made. Some hospital units are very open and will not mind you reading your child’s daily sheets which include all doctors’ orders. Other hospitals, or even other units, may not allow you to view your child’s paperwork without an attending physician present. It can be difficult to get a “date” with the attending physician to read up on changes. So, to avoid confusion about care and meds, I found it easier to ask to be notified of changes. If you find your request is not being honored, go higher up the chain. It is your right to know every detail of your baby’s care.

5. If your baby will be camping out at the hospital for a couple of weeks or longer, ask that physical therapy be provided to the extent that your baby’s condition permits. If your baby will not be fed by mouth for any period of time, request therapy to maintain oral abilities and interest. It may seem odd to focus on things like this when your baby is very sick, but it is important.

6. Bring your baby’s favorite music cds, a sound machine, crib mobile, hanging toys—whatever you can—to his hospital room. This is tough to do at first because it feels like admitting that your baby is not just zipping through. Once you get over that, you’ll be glad you did it. Your baby will appreciate hearing music instead of just the monitor alarms. Any positive stimulation is a good thing.

7. Be aware that you have choices concerning your baby’s feedings. You can breastfeed your baby if you want to. If you are told that you cannot feed because your baby is fluid restricted or must have all of his fluid measured, ask for your child to be weighed before and after breastfeeding to determine the amount of milk ingested. If your baby needs a higher calorie milk, you can use whatever formula you prefer including Organic Similac (which the hospital most likely has) or Baby’s Only Organic. If you are told your baby will be getting corn oil added to his diet, you can insist that a healthier oil be used. We agreed to organic olive oil. I would recommend requiring that no new “foods” be added to your child’s diet without your notification and approval.

8. Get to know your baby’s primary nurse. She will know everything that goes on with your baby and it is important to be comfortable with her. If you cannot build a good rapport with her, ask for a different primary to be assigned to your baby. A good primary nurse can make a huge difference in the care your baby receives. If the unit your baby is in does use not the primary nurse model, make daily notes of the nurses who care for your baby. You can refuse specific nurses if you feel uncomfortable with any of the care provided to your baby.

9. Purchase some front-snap/closure onsies and sleepers for your baby to wear in the hospital. These are the easiest to put on over and around wires and tubes and the easiest for nurses to break into for vitals checks. Seeing your baby dressed can actually help you to feel better and your baby needs to soak up those good vibes.

10. Ask about support resources. Is there a Ronald MacDonald house or family room (or the equivalent) nearby, are free long-term parking passes available, can breastfeeding moms get free food trays, what religious services are available, can long-term patient parents get cafeteria discounts, can hand/foot printing or casting be done?

11. Don’t hold your baby down to help with a procedure. In fact, if your baby is a newborn, do not be involved in anything that will be uncomfortable for him. Do not be in his sight or let him hear your voice during any procedures. Your baby does not have a built up sense of comfort by your presence like a toddler would. You do not want your baby to associate any discomfort or fearful feelings with you.

12. Keep a journal. Write down names of nurses, doctors, medications, and procedures. Write down your feelings, your questions, your hopes, and your sorrows. Things blur together in the hospital and it might matter at some point that you remember things accurately.

Your Turn
Do you have some good advice for parents whose children are in NICU or PICU? Please share in a comment or let me know if you have posted on this topic and I will link to you.

Lisa, over at Finnian’s Journey, shared these sage words in a comment on the NICU Tour post,

“I would just add that new parents shouldn't be afraid to advocate for their baby in the NICU. When you're surrounded by so many authority figures in white coats, plus dealing with post-birth hormones and fatigue and perhaps a surprise diagnosis of Ds, it's easy to forget that you're actually this child's parent and that you have rights. Do your homework. Not every procedure is absolutely necessary, and some aren't even necessarily in your baby's best interests.”

Cori's post: Begging to Bring Joey Home
Lisa's posts: Advocacy Starts Early
                 Hospital Stay/Learning to Eat
Sasha's post: Our Heart Journey: Things I've Learned

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.

Pumping—The 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?

The Welcoming Committee

No matter when you get the news that your baby has Down syndrome, there is that time period of shattered expectations, of fear and worry. Maybe it happened when your baby was born and you were taken completely by surprise. Or, perhaps it wasn’t a total surprise after all, but the certainty of the diagnosis in the delivery room displaced any hope of a mistaken marker.

For some, those who knew for sure and those who were blissfully unaware until later, that tough time period takes place in private, and the news is shared at the comfort level of the parents. But for those who find out in the hospital, oh the grief is so public, and there is not much time to absorb the shock before the news must be shared with family and friends.

I was one of those "not quite surprised" but not quite ready for reality either. So I had the good fortune of not bursting into tears in front of the strangers on my delivery team and yet I had a long way to go before I could even say it without choking up, "She has, tissue please, Down, sniff, syn, sniff, drome."

I know a young man with Down syndrome and I had seen some children with it here and there, but I had never seen a real live baby who had it. She looked so.... regular... so much like... a... baby. She cried, peed, pooped, rooted, burped, and generally looked cute. But there were those signs, those tiny differences that meant her life would be harder because all the world might not accept her with open arms.

And so for days, I second guessed every decision of importance I had ever made in my life leading up to her conception. Then I worried for her, right through her whole life, in my imagination. I cried for every slight and hardship, and loss she might endure. I wanted to kick the next person who told me a story about someone’s kid with Down syndrome who did something normal... "So-and-so’s kid even graduated from highschool..." or anyone who fed me the platitudes, "They are so joyful...God chose you because you are such a good mom."

It was rough, I admit it. Probably more so because we were stuck in the NICU with no exit in sight. And then it happened... a friend stopped by with a gift bag. In it were little toys for my daughter and a book for me. It was Roadmap to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome by Jennifer Graf Groneberg.



Eight weeks earlier, our fetal cardiologist had given me a packet on Down syndrome and buried in it was the poem, "Welcome to Holland" by Emily Perl Kingsley. I didn’t like it. I had been to Italy, twice, and if I was going to Holland, I wasn’t going to piss and moan for the rest of my life about not getting back to Italy, nor would I be jealous of other people’s children. The Dutch are probably a little annoyed at being compared to the loss of a dream, and for some odd reason I was annoyed too. Please don’t write me a bunch of comments deconstructing and explaining the poem. It just didn’t do it for me (or for Jill over at Rivers of Joy.)

But Roadmap to Holland did. I felt like she was walking in my shoes. I cried and laughed with her. And I was thankful to my friend for bringing me the first thing that helped me to put my head back on straight. Before I left that hospital, I gave the book away, passed it forward, to a couple who had just been delivered a surprise.

When I went out to Amazon.com to replace my copy of the book, I found myself ordering three more copies. I knew then that I must continue to pass it on because every parent who gives birth to a baby with Down syndrome, whether surprised or not, should have an experienced mother come welcome them into this new world. I can’t go in person, as that would require a breech of HIPAA, but I can leave gift bags with the nursery staff with instructions to give them to new parents of babies with Down syndrome.

Your Turn
Maybe gift bags aren’t your style or in your budget, but a handwritten card or letter is just as precious to the new parent who is encouraged by it. Or perhaps you have some other creative way to welcome new parents that you can share with us. Would you consider being the welcoming committee for your local hospital?

NICU Tour

Many a baby with Down syndrome will tour the Neonatal Intensive Care Unit (NICU), even if only for evaluation and observation. That means you will get to spend some time there too.

What Your Baby Might Look Like in the NICU

Evaluating your baby might call for a series of tests and monitoring that will require wires and tubes that are attached in various ways to your infant. It can be pretty daunting to see your baby this way, and your post-delivery hormones won’t help. Here is a picture of what my daughter looked like the first time I saw her there. (Click on it for a large view.) I burst into tears. I will explain below what all the attachments are.




Some newborns have difficulty maintaining body temperature, so the NICU staff may place the baby in an open metal and Plexiglas bassinet that has a heater above it. To properly monitor body temperature, the baby is naked save for a diaper, and a tiny thermometer is stuck to the baby’s chest or stomach area. That is the gold circle on my daughter’s tummy.

Oxygen (O2) support is provided for a baby who is not maintaining the correct O2 saturation. There are several types of O2 support but in this picture you see a high-flow O2 nose cannula. To continuously monitor oxygen saturation levels, a tiny monitor inside a band-aid type material is placed against the infant’s foot or hand. It is then wrapped again in stronger material which you can see on my daughter’s left foot.

Our hospital’s better-safe-than-sorry practices required that our baby receive intravenous antibiotics until a blood test confirmed that no bacterial infection was present. This is what you see wrapped in tape on her right hand.

This is a good time to mention that general hospital staff are very quick to react to neonatologists’ and NICU nurses’ requests, so test results and specialists appear in record time. (Not always so in PICU, but that is another post.)

It is important to monitor the baby’s heart rate and this is done by sticking small monitors on the baby’s chest area. These are the little white and blue stickers on either side of my baby’s chest.

What you do not see pictured here is a nasogastric (NG) feeding tube that may be placed in your baby’s nose and the bili (spa) lights that might be placed around your child if his bilirubin levels are too high (the cause of jaundice.)

With numerous monitors attached to your baby, you can expect to hear them sound off every now and then, usually for no bad reason. If the O2 saturation monitor isn’t tight against your baby’s hand or foot, it will sound an alarm. If your baby wriggles around and loses a heart monitor sticker, you will hear an alarm. If you are holding your baby away from the bassinet, the temperature monitor might complain loudly. You will get used to these bells and eventually stop the mini panic attacks every time you hear them.

While all of this looks scary and overwhelming, none of it is painful (ok, except that initial IV prick) and none of it indicates that there is anything wrong with your baby.

Who You Will and May Meet in the NICU

Neonatologist - This doctor is specially trained to evaluate and treat newborns’ medical needs. In addition, neonatologists are experts in using the equipment that is designed specifically for the tiniest patients. There will be a neonatologist in or nearby the NICU at all times. (Again, not true with the PICU equivalent, but that’s another post.)

NICU Nurses - These nurses are specially trained to provide excellent medical care to newborns. They will provide general care to your baby, administer any necessary medication, and monitor vital signs. Along with caring for your baby, they will provide care, support and education to you as necessary. If your baby will be in the NICU for more than a couple of days, a primary nurse may be assigned to him. This nurse will make it her business to know everything that goes on with your baby. She can tell you how much he ate, peed, and slept today, as well as any changes in medications or other medical updates. A good primary nurse will get to know your child’s rhythms and can spot trouble before anyone else does.

Your Pediatrician - Your baby’s pediatrician will likely do rounds at the hospital and will check in to see how your baby is progressing. While your baby is in the NICU, the pediatrician does not call the shots but she can make suggestions or provide you with explanations of (read "decode") what the neonatologist may have already told you.

Respiratory Therapists - NICU respiratory therapists will handle all aspects of your baby’s O2 support to ensure the doctors orders are carried out to specification. They will drop by every few hours to check the equipment and your baby’s breathing.

Specialists - Any number of specialized physicians may stop in to check over your baby. We were visited by cardiologists, pediatric surgeons, our daughter’s heart surgeon, a gastrointestinal (GI) doctor, and many more.

Social Worker - A hospital social worker will stop by to see you in your recovery room or in the NICU to give you information about local Down syndrome groups, Medicaid, SSI, and many more things you will probably not be ready to hear (not because the information is bad but because things are already mind-boggling, and remember, those hormones aren’t helping.)

PCAs - Personal Care Assistants - otherwise known as "baby rockers" are sometimes called in by a busy nurse to soothe a crying baby whose mother isn’t readily available. PCAs provide only non-medical care in the NICU and you can request that they not be placed with your baby, if for any reason you prefer that.

NICU Pros and Cons

Most hospitals pride themselves on their well-staffed, state-of-the-art NICUs, so you can be assured that your baby is receiving the best care the hospital has to offer. The staff can be very knowledgeable and encouraging, and you may find it helpful to have this much support as you figure out your newborn.

Some hard parts about having your baby in the NICU would be that there is very little privacy in the NICU due to the setup (which is designed so that the nurses can see every baby at all times.) It can be frustrating and difficult to breastfeed your baby there even with a privacy screen that a nurse will set up for you. If a baby nearby yours is having a procedure, you may be asked to leave the NICU for a while. Visitors are limited and in some NICUs, children under a certain age are not allowed in at all. Once your baby enters the NICU, he may have to prove he can eat a designated amount of milk or formula every three hours before he can be discharged. Not being able to hold and snuggle your baby without a bunch of stuff attached just plain sucks. And my personal worst thing about NICU was being discharged from the hospital before my baby and having to go home without her. The separation was painful and I felt as though I had no say over my own newborn child.

Doing time in the NICU can be tough, but remember it is not forever. You are strong, and you and your baby will get through it.