Meet Annie & the Wobble Penguin Winners

Thank you to everyone who entered in the drawings and shared them on FB with friends.



The winner of the Meet Annie book was Twilson9608 and Stacy and Mike won the Go Baby Go! Bat and Wobble Penguin. If you will email dsmama your contact information, we will get your gifts out in the mail ASAP.

Book Review and Giveaway—"Meet Annie"

Lisa Morguess who blogs over at Life as I Know It also has another blog titled, Turn the Page where she exclusively writes book reviews. She is an excellent and fair reviewer so I was pleased that she agreed to write a review of Meet Annie by Heather J. Scharlau-Hollis.

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In this short and sweet book aimed at young children, we meet Annie who is just like you and me in all the ways that count to little kids: she likes to play with her toys, she likes to splash around in her swimming pool, and she sometimes gets in trouble. But Annie is also a little bit different - she has Down syndrome. Although the book doesn't explain what Down syndrome is, it touches on the fact that Annie looks a little bit different and learns a little bit differently, and that everyone is a little bit different in their own way, and those differences make us who we are. My favorite aspect of the book is how the author invites and encourages its audience to identity with Annie by asking a question at the end of each page:

"Sometimes my zipper doesn't zip right. I ask Dad for help. Do you ever need help?"

"Sometimes I cry when I get scared. Do you ever get scared?"

Encouraging empathy and compassion without resorting to condescension or stereotypes, this is a wonderful book that should have a place on everyone's bookshelf who is touched by a child with Down syndrome.

Giveaway
The author of Meet Annie, Heather J. Scharlau-Hollis, will send a signed copy of the book to one lucky winner. To enter the drawing simply leave a comment below by Wednesday April 18th. Good luck!

Adorable Charlotte

Lisa and Ian are proud to announce the birth of their daughter Charlotte... born on World Down Syndrome day! Charlotte has three big brothers and a big sister who all love her dearly. No blog yet but you can leave words of joy here or visit with Lisa in the FB group, “Our Adventures with Down Syndrome.”





If you would like our community to know about the arrival of a child with Down syndrome, please send an email to ds.mama with the baby's info and an email address or blog/website address of the baby's mom or dad.

Tech Baby Loves the iPad

Don’t all babies just love electronic gadgets? T.V. remotes, cellphones, Wii consoles... how many times have you had to pry one of these no-nos from your little one’s grip? And it’s a well-known fact among the diapered crowd that toy versions of grown-up stuff really don’t cut it.



Consider getting your baby an Apple iPad. The iPad is a perfect toy for your baby because as she is playing with it, she is learning from it. And as she grows, it can grow with her into a diverse learning and communication tool.

Five Favorite Apps for Baby

Sound Shaker by Tickle Tap Apps 1.99 - touted as the 21st century rattle, Sound Shaker lets children create and play with chime, whistle, drum, barnyard animal and mystery sounds by simply tapping and tilting. Repeated taps generate new sounds, while longer taps grow sounds and trigger surprise animations. Tilting makes sounds spin and collide in whimsical combinations.

Itsy Bitsy Spider by Duck Duck Moose 1.99 - A musical book based on the popular song, with fully interactive, original illustrations. Follow the spider through the captivating, inter-connected scenes as he goes up the water spout, comes down with the rain, and watches the sun dry up all the rain.


Sound Touch by Sound Touch 3.99 - Sound Touch has 6 categories, which are shown at the bottom of the screen as pictures – animals, wild animals, wild birds, vehicles, musical-instruments and household. Each page has 12 items displayed with bright, cute cartoon items. Tap a picture, and a real life photo of the item pops open, accompanied by the sound it makes. Tap the picture anywhere, and it disappears. There is a sound option in settings that makes it so that the app says the name of the item prior to making the sound.

Peekaboo Barn By Night & Day Studios, Inc. 1.99 - This cute app features barnyard animals and the sounds they make. Babies can open the barn doors to find a new animal animation by touching the screen. They’ll learn about cause and effect and become familiar with animal names and sounds. As a bonus, you can record your own voice saying the animal name.

Talking Tom Cat By Out Fit 7 Ltd. Free- Baby’s first pet :-) Tom the cat responds to your touch and repeats everything you say or babble with a funny voice. When you pet him, he purrs.








Ok, stop. Yes, I know an iPad is a really expensive toy for a one-year-old, but consider it an investment. New iPads start at $500, and first generation iPads can be found on auction sites and lists for about $200-ish. Here are some ideas on how you might afford an iPad for your baby with Down syndrome.

Chip-in birthday gift: Perhaps for your baby’s first birthday you could create a chip-in fund and let family and friends know that you are trying to raise enough for an iPad for your little one.

Medicaid Coordinator Alternative Funding: If your child has Medicaid or the Medicaid Waiver, your coordinator may be able to find you grant funding for your baby’s iPad.

Win one: iPads are a popular draw for online fundraisers. Keep your eye out for the chance to win one. Usually you can get a drawing entry by donating a small amount or even just by posting the fundraiser on your FB, blog, or Twitter account. Right now through March 31st, Patti over at A Perfect Lily is giving away a beautiful brand new iPad 3 as part of a very special adoption fundraiser, so be sure to head over there and get an entry to win.

Update: Two more chances to win an iPad... (valid to 4/6/12) over at Our Chinese Butterfly and (valid to 4/8/12) over at The Stars Aligned.

Babyproofing the iPad
If you do get an iPad for your little sweetie, be sure to babyproof it with a back shelland a screen protector. You will be glad you did.

Your Turn
Do you already have an iPad for your child with Ds? What are your favorite apps?

Birth Announcement & Giveaway

For those of you who got all excited thinking I was going to announce the birth of a darling baby and then give him away on my blog, awww sorry ;-)

Lisa and Mark are proud to announce the birth of their son Connor. As you can see, he is one heck of a cutie. Lisa blogs at Life with Connor - Perfect with a Little Extra, so be sure to visit her there and watch this darling grow.





Now for the giveaway...



The Fisher-Price Go Baby Go! Bat and Wobble Penguin looks like it might be fun for our little ones to practice gross motor (leg-extension) kicking and (arm-extension) pushing skills. I have a brand new one, but no baby to try it out with. So if you would like to win this toy, leave a comment telling Lisa how lucky she is to have such a scrumptious little boy and mention that you would like to be in the drawing. I’ll draw a random entry in mid-April.

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.

Breastfeeding Polls

Next week begins a two-part series on breastfeeding a baby with Down syndrome. To get ready there are a couple polls on nursing over in the left column. Please take a moment to share your experience in the polls.

Because breastfeeding can be complicated there are several ways to answer the question: did you breastfeed? For the purpose of this poll, the question is did your baby end up nursing from your breast? Even if you used nipple shields or an SNS feeder, please still select one of the options indicating that you were able to breastfeed.

We would love to hear your thoughts on your breastfeeding experience, so please leave them in the comments section.