This month is supposed to be all about feeding and nutrition. Originally, I was going to blog about formula and bottles separately, but there are so many things I want to talk about, that I’ve decided to just add that to this post.
BREASTFEEDING: CHALLENGING BUT NOT IMPOSSIBLE
As I mentioned, I didn’t have much success breastfeeding Luke in the hospital. Luke would latch but wouldn’t stay latched. Honestly, I had the same problem with my older son, so I think it has something to do with a strong letdown. I pumped for almost 2.5 years for my older son, and have been pumping almost a year now for Luke. But our speech therapist says breastfeeding directly is the best way to feed a baby with down syndrome, not only for nutritional value or to help boost immunity, but it helps strengthen the muscles needed for speech. Our son also has a high (or domed) palette, which means he has a deep recess on the top of his mouth, and breastfeeding can help flatten the palette. But for us, the reflux issue was more important so we eventually had to stop breastfeeding. However, I do think that thickening the milk or formula has helped work some of the same muscles so it’s not that easy to just suckle at the bottle and get your fill. But that’s not why we do it. We do it to keep the nutritious breastmilk down in the belly.
I do think that breastmilk has tons of benefits for the baby. If you’re able to breastfeed directly (which many infants with down syndrome do), then you also get the benefit of cuddling with your baby and not having to deal with so many bottles, flanges, etc. I personally like pumping because I completely drain the breasts and store what isn’t used. I still pumped at least once a day even when Luke was breastfeeding directly, which sounds like overkill but I wanted to store it for future use. I believe breastmilk helps provide not only the nutrition the baby needs, but antibodies to help protect him as well. Our family has been plagued by colds and flus since late October. My older son has missed school for a total of more than 2 weeks and has had the flu 4 times. I myself was sick with the flu 3 times and sick with multiple colds. My husband had milder versions of illness. But Luke has suffered mainly from nasal congestion and a little cough from maybe 2-3 colds, one in late October that lasted 1-2 weeks. The others were even milder. I believe that the breastmilk was helping boost his immunity as I have no other explanation. My older son has benefited from the same results, except for ear infections. For that, we had tubes put in his ears at around 2 years of age. But Luke has not had an ear infection either. Knock on wood. I don’t want to jinx myself…
Back to breastfeeding at the breast. Our speech therapist tried to get Luke back on the breast when he was 5-6 months old. She suggested using a nipple shield as Luke was refusing to latch and had gotten used to the bottle. He would also just clamp down, knowing that I would cry out in pain and give him the bottle he wanted. Or he was clamping down because of the strong letdown – not entirely sure. What I am sure about is that the nipple shields helped diminish the pain of Luke clamping down. Plus, he was latching and suckling again. So I consider that a huge success! I wish I had known about the nipple shield at the hospital. Perhaps then I would be primarily breastfeeding Luke than pumping.
The brands that worked best for me were the Ameda brand, followed by the Medela. I like the Ameda one because it fit me better as I needed something wider to accommodate the size of the nipple. So you will have to determine which brand fits you best. I think the Ameda has a wider base than the Medela so that is why I preferred it more. Once your baby has latched and gotten used to the shield, you can try to breastfeed by removing the shield after a couple weeks. Within 2-3 weeks, I found I didn’t even need the shield anymore. So maybe it wasn’t the strong letdown.
If you do have a strong letdown, you can also manually express milk into a bottle until the stream is weaker. This may help prevent your baby from gagging at the breast as well as help make it easier for your baby to feed as this will start the milk flowing. If you are engorged, you can place washcloths that have been soaked in hot water and wrung out over your breast to help soften the breast. You can also try frozen cabbage leaves for some relief. Once the breast is softened, you can either pump or express the excess milk if you want to maintain your supply. If you want to decrease your supply, you can try drinking small amounts of peppermint tea, but be careful of this because drinking too much may affect your supply too much.
As your baby grows older, you may notice that he feeds less and takes in less volume or perhaps the same volume. The nature of breastmilk changes as the baby gets older, so 5 oz. of milk when your baby is 9 months may have more calories in it than 5 oz. of milk when your baby is 4 months old. Also, keep in mind that you want your baby to feed at the same breast long enough to get to the hindmilk, which is rich in nutrients and needed fat and calories. So keep your baby on one breast until your baby is done and the breast is drained before switching to the other breast. Then start breastfeeding your baby on the other breast at the next feeding session.
BACK TO PUMPING AND THICKENING BREASTMILK IN BOTTLE TO STOP REFLUX
So why did we stop breastfeeding directly? Well, because Luke’s reflux got much worse (we breastfed directly for 2-3 months) and I was worried that with all his spitting up, I wasn’t going to be able to keep up my breast milk supply. I did run out and had to supplement for a very little while (more on that later). Plus, Luke had a lot of discomfort with the reflux. We took him to a GI specialist and they did a swallow study. It came back pretty normal, except that fluid would lag a little in his throat due to low tone. So Luke was on Prevacid, but he really disliked the taste and would end up spitting most of it out, obviously defeating the purpose of the medication. So the doctor switched to Axid and that seemed to go down easier. Prevacid has a strong taste to mask, which we tried to do at the pharmacy. Axid has a much milder taste to it and easier for babies to swallow.
Luke did not sleep well as a baby, and some nights, I would sleep sitting up with him in a carrier (I was paranoid I would drop him otherwise), probably due to the reflux. At times, I walked him all night while he was in the carrier. It seemed to get better when the reflux got better, so that is a large part of why I stopped breastfeeding directly. We kept him upright in the Rock and Play sleeper (which keeps him at an incline) and walk him in the ergo carrier (the only way I could sooth him to sleep – that and the Nuroo only seemed to work). Luke has always been a light sleeper, and a horrible sleeper when he suffered from GERD. So fixing the reflux problem not only helped eliminate the need to supplement with formula, it also helped Luke sleep better. So the decision was easy to make for us.
So I talked to the doctor about thickening his breastmilk with cereal, which would mean going back to the bottle. If you want to thicken breastmilk, do not use rice cereal. Rice cereal breaks down in breastmilk and it will not thicken it. If you go the cereal route, you have to use oatmeal (or another grain) to thicken breastmilk. We use a little bit of Earth’s Best organic oatmeal cereal along with a thickener to fortify Luke’s diet with iron.
His speech therapist also didn’t like the idea of adding cereal to his breastmilk due to the extra calories and it being refined. People with down syndrome typically have a lower metabolism and more prone to weight issues and refined cereals are more linked to obesity, which is another good reason to do baby led weaning so that the child learns to moderate his appetite. So I went online and found a site that had recommended using Xantham gum to thicken breastmilk (or formula) for babies with reflux. This worked perfectly for us. Click here for the recipe.
For pumps, I first went with the Ameda, which I found to be a horrible pump (at least for me). So after a few months, I got another Rx and went with the Hygeia, which is also one of the pumps our insurance covered in full. For those who have insurance, many of them cover a breastpump usually up to $150 in value. Call your insurance company (state programs usually will cover a pump as well) for more details. Also, many state programs give free medical coverage for pregnancy, delivery and post-delivery care for you and your baby, which also includes providing a breast pump and WIC also covers items like formula. I’m not sure which breastpump models they cover, but you can inquire in your own state.
The Ameda worked horribly for me and the reason why I think my supply went down so much, especially compared to my supply with my first son and when I was at the hospital. After using the Ameda pump at home, I noticed my supply going down quickly. Granted, I had too much in the beginning, but I would rather have a freezer full of breastmilk than have to supplement later with formula. After being discharged from the hospital, I had to bring 2 bags full of milk home and pretty much filled their little fridge full of those little Ameda bottles. I used a hospital grade Ameda pump there, so I thought the Ameda pump I had at home would suffice. Not even close. The diaphragms would continually collapse so it was essentially useless. It is a known problem and I don’t know why anyone would still use this brand. It’s possible I have a dud, but I don’t think so since it doesn’t have to do with the motor. I think this model is not a good fit for those with a strong letdown, like in my case.
So why do I like the Hygeia? Because it is a hospital grade motor and it is a closed system, which means that you can pass the pump for future use to another mom – they just have to buy a new set of tubing, flanges, bottles, etc. The company also has a recycling program in case you don’t know what to do with it once you are done pumping. The pump also accepts Medela and Medela-compatible flanges and parts, which makes it easy and cheaper to get replacement parts and extra flanges. So I use a combination of Medela compatible flanges and parts with the Ameda bottles. Amazon has Maymom which is cheaper than the Medela brand and have worked fine for me. Just make sure you get the right type and you should be set. The speed and the suction strength are all customizable so it’s easy to adjust and use. It is also quite durable. I pump at the desk and it dropped on the wooden floor a couple of times. Works just as new. I have never used the Medela pump, however, it is not a closed system and I read bad reviews about mildew growing inside the pump because it is an open system. So I’m glad I went with the Hygeia.
YOUR BREASTMILK SUPPLY: TIPS ON WHAT TO DO IF YOU NEED MORE
The key to pumping milk and maximize supply is to increase the quantity of pumping sessions. I used to pump 5-6 times a day (and once during the night) so I know it’s a lot of work, especially in the beginning. But since it’s a supply and demand thing, the more times you pump, it signals your body to make more. I now pump 3 times a day and yield around 15-20oz a day. I also use a hands free pumping bra and a “pumping” pillow (an old small throw pillow), which helps support the bottles while I am pumping. This one is great and fits most pump flanges: PumpEase pumping bra (click to see on Amazon). This way, I can be on the computer and pump at the same time (as I’m doing right now). I also drain the breast by expressing milk after every pump session by squeezing the breast and manually expressing into the flange after each session to get every last drop.
Be very mindful of what you eat, drink and take as medications while pumping or breastfeeding. There are many things that can cause a dip in your supply. For example, peppermint can reduce your supply if taken in large enough doses. So popping Altoids frequently can diminish your supply, as well as drinking lots of peppermint tea. I drank peppermint tea left over from when I drank it when nauseous during pregnancy and didn’t realize until much later that drinking too much of it could hurt my supply.
Another thing is birth control pills. I decided to go back on the pill months ago. I took it for 2 days and it cut my supply down in half! I did a bunch of research since I didn’t think it was the pill since the doctor who prescribed it knew I was pumping and assured me it would be fine. I should have researched it first online since it obviously didn’t work well for me. The pill I was on was microgestin (also known as errin and other names). So be careful with this and any kind of medication. Check online first and see if it is safe in breastfeeding, as well as not known to decrease supply. And if you notice a dip, stop taking it and see if you notice any difference. For me, when I stopped taking it, my supply increased a few days later.
For me, what has worked best is Motherlove More Milk Plus. I buy the pill form and you are supposed to take it 4 times a day. I don’t need as much now, so I just take a pill if I need a quick boost if I only pump twice that day or if Luke is drinking more milk during a growth spurt. You can find it at amazon, drugstore.com and some drug stores. I get mine from drugstore.com and save with the subscription. Click here to view it. I also drink Mother’s Milk tea as well. Fenugreek and other herbs are supposed to be good for increasing supply, but I find that all of that is in the Motherlove More Milk Plus and I can just take the 1 pill versus multiple. Some moms take 2-3 capsules of Fenugreek and 2-3 capsules of Blessed thistle 3 times a day, but I prefer the 1 pill of Motherslove. Herbs don’t work for all mothers, so see if they work for you first before making a big commitment. Drinking lots of fluid, eating a nutrient rich diet (and supplementing with vitamins if needed), reducing stress and getting rest will help along with pump frequency. It’s hard to get rest though, especially if you’re pumping or breastfeeding at night, so do what you can.
If you are one of the lucky who can provide enough milk for your child and have leftovers, then you can freeze them for up to 3 months, 6 months in a deep freezer. I currently have about 2-3 weeks of supply in our freezer since Luke has been drinking less milk since eating more table foods with baby led weaning. That reminds me, I need to use up some frozen milk and re-freeze current supply to turnover inventory. So don’t forget to periodically turn over your frozen supply, but try to do it gradually by using one bottle of frozen milk a day so that the baby still gets some of the antibodies in your current supply, especially during the cold and flu season. And when you reheat the milk, don’t overheat it as this can kill off some of the useful antibodies in the milk. Also, keep in mind that if you are using older frozen breastmilk, the fat and calorie content of this milk can be different than newer milk, which is another reason why I wouldn’t feed the baby strictly from frozen breastmilk for days and weeks if possible. If you are leaving your baby with a caretaker for a while, try to leave them a combination of “newer” and “older” milk if there is a large time period between the two. I’m sure it won’t make a ton of difference, especially if it’s only for a few days or a week, so I wouldn’t worry too much about it.
SUPPLEMENTING WITH VITAMINS AND FORMULA
Many doctors recommend supplementing breastfeeding with a multi-vitamin, which I think is a good idea, especially after 6 months when the iron reserves from the birth cord tend to run out. Formulas are already fortified with iron, as well as most baby cereals. I also read that you can ask to have the birth cord attached to your child for several additional minutes before the cord is cut so that your baby gets some additional iron reserves. I found a multivitamin I liked that also included DHA, which you can click here if you would like. I am not a doctor so please consult your pediatrician for more guidance. A mom posted a guideline to children’s vitamins (not necessarily for infants so this is for older children) on facebook, so I thought it would be useful to share. Click here to view it.
Should you need to supplement, try and choose a formula that does not constipate. Some children with down syndrome have slow digestion. We had to supplement for a little while when Luke’s reflux was at its worst. After I started thickening his breastmilk through bottle feeding, the reflux got immediately better. So I was able to build up supply again.
FORMULA FEEDING AND CHOOSING THE RIGHT FORMULA FOR YOUR BABY
Also, I know not every mom can or will breastfeed or pump. I know I have talked about how beneficial breast milk is for babies, especially for babies with DS. But each mom has to do what is best for her and her family, and that may not include breastfeeding or pumping. Or they may have to supplement with formula if their supply isn’t sufficient. So choosing the right formula is incredibly important, especially if it is going to be your baby’s primary source for nutrition for the first year of his life.
When Luke’s reflux was bad, I ran out of any backup supply and I had to find a formula that he would eat as he was very picky. Babies who are used to breastmilk will sometimes refuse formula as they are used to the taste as well as they can get bored of the same formula since the flavors of breastmilk will change based on the mother’s diet. So Luke refused good start, similac, etc. (we tried maybe a half dozen) and would only accept enfamil gentlease of US brands that were readily available. If you have a picky baby as well, then I suggest asking your pediatrician for samples. You can also sign up for coupons online at enfamil’s and websites, and they usually send you a sample size in the mail. That way, you can have an assortment on hand just in case you have a finicky baby.
When I told my speech therapist I was needing to supplement with formula, she suggested I research the different brands as many include additives that are not healthy for your baby. This article explains common ingredients found in formula (it focuses on organic but it is informational about what ingredients to keep an eye out for) and what those ingredients can do to your baby (click here to see it). Also, formula may constipate your baby and some brands are known to do so more than others. We decided to go with Hipp Organic formula that is organic, contains less additives than most US brands and does not constipate the baby’s sensitive digestive systems. In fact, many moms have noted their babies poop is similar to those who breastfeed. Unfortunately, it is not available through retailers in the US. If you are in the US and want to buy it, I suggest going to Amazon. But it can take up to 3 weeks for it to arrive. You may be able to find a U.S. Supplier, however, I found that the prices were significantly higher.
Regardless of what formula you choose, keep an eye out for constipation and discuss it with your doctor. You can use prunes (if your baby is old enough to be eating purees or solids) to help with the constipation.
CHOOSING A BOTTLE
Luke was very particular about his bottles as well. He refused any wide neck bottle nipples. The only one he would accept is Dr. Brown standard bottles. I think it is because he got used to the nipples at the hospital. So the Born Free, Avent, Tommee Tippee bottles did not work for us. Luke did have some difficulty with staying latched, so having a smaller nipple may have helped. If you can get free samples (sometimes Babies R Us will have coupon for a free Dr. Brown bottle during major holidays but they run out quick and I always missed out) or hand me downs on bottles, that may help you get an assortment on hand in case you find your baby is picky about drinking from a bottle. The nipples they gave us at the hospital will fit the ameda bottles if you want to save some money on buying nipples, and Amazon does sell the Enfamil faster flow type nipples as well as the slow flow in case you find those work best for you.
If your baby has latch issues or poor tone in the mouth, then you may want to stay with the smaller nipples and also poke additional holes in the slow flow nipple so that it is easier for them to feed. If your baby has bad gas, reflux or is colicky, you also may want to try bottles like Dr. Brown’s or Born Free that have a valve system to reduce the amount of air that the baby swallows. With the Dr. Brown bottles, we found that Luke was less gassy. Also, if you are thickening your breastmilk or formula with either the xanthum gum thickener or cereal (remember that rice cereal will not thicken breastmilk), you should look into a much faster flow type nipple. Our breastmilk is pretty thickened to help with Luke’s reflux, so we use the Y cut Dr. Brown nipples. If you thicken less, a level 3 will probably work just fine.
If you find that your baby has difficulty with the bottle and/or breastfeeding and you are concerned about his intake, you can take a medicine dropper or syringe (like those given with medications) and use that to give your baby either expressed milk or formula. This method also helps avoid nipple confusion, especially if your child is less than a few weeks old. If you are working on breastfeeding as well, continue putting your baby to the breast and feed your baby by medicine dropper/syringe after he or she is done at the breast. If you don’t think he or she is getting enough milk at the breast due to fatigue or poor sucking, then alternate using the dropper and pumping and breastfeeding directly. Hopefully, once your baby gets stronger, you can breastfed directly or use bottles.
I am not a lactation consultant or a medical professional, but I tend to research quit a bit and have had great access to resources to help me with my 2 children, both of whom had their issues with feeding. If you have any concerns medically or otherwise, I would contact your doctor and you can also contact your local la leche league (click here to view their site). In any case, I hope you find this helpful. If you have any questions, please leave a comment and I will try to answer to the best of my ability as soon as I can.