Saturday, May 30, 2009

What's In Your Baby's Bottle?

There are lots of good reasons why you might be buying formula for your baby. Some babies need extra calories added to breast milk, some babies have swallowing difficulties and need thicker food, others may be drinking more than you are able to produce. Maybe you’ve gone back to work or maybe pumping just wasn’t working out too well. No matter the reason, choosing a formula can be confusing.

Beyond deciding between the brands there are the questions... soy or dairy? Organic or conventional? Iron or DHA fortified or neither? And let’s not forget that formula is expensive, so the choice must be something we can afford.

No, I am not going to compare and rate baby formulas. In fact this post is going to be completely biased but when I am done, I hope you’ll understand why.

Five years ago when it was time to go back to work after my first baby, it was my turn to wander the baby food aisles of my local markets in search of the best formula I could find. Back then (seems like the dark ages) there was not one organic style of formula on the shelf. So I chose the brand they had given me samples of in the hospital. My son never ended up getting any of it because after taste testing it, I threw it out (in a fit of tears, which I am sure was a combo of hormones and going-back -to-work blues.)

What do you do when you don’t know what to do? Google the internet. Online I found an organic baby formula fortified with iron called Baby’s Only and developed by Nature’s One. I researched their nutritional information and found it to be comparable to the brands I had seen in the grocery store. It looked good but I still had questions... It said right on the can that it was a toddler formula and my son was just a 5 month old infant. And, what if after I spent the money on a can and shipping, I found out that it tasted as bad as the others? What if it caused the constipation I had been warned about?

I contacted the company and spoke with their nutritionist. She explained that the formula is labeled “toddler formula” because the company promotes breastfeeding for the first year of life. She told me it was perfectly safe to use the formula for my infant but to take the nutritional information to my pediatrician for his blessing. I asked for a sample and within days, a can of dairy-based powered formula appeared on my doorstep. I mixed some up and took a swig. Dare I say it was yummy? It was pretty good, with no metallic aftertaste. Our pediatrician approved it and so, I used Baby’s Only with my first two children.

Then along came baby #3 complete with Down syndrome and a broken heart. From birth she was fluid restricted to ease the work load on her heart. Within weeks the neonatologists were talking about fortifying her milk to add calories. I took it hard. I was obsessed with giving her only the best. I explained that I was concerned about using conventional formula, so they offered me Similac Organic.

But I was unsure. I knew that a lot of the food giants had jumped on the organic train in the past few years but that didn’t guarantee their product was as good as Baby’s Only. I brought an unopened can into the NICU and pled my case to the hospital’s nutritionist. She lifted it skeptically from my hands and agreed to research it. She said she would let me know within a few days whether or not their highly-respected children’s teaching hospital would approve this formula.

Slight digression here... You may be wondering what was happening in the meantime with my daughter’s need for more calories. I had found a tip in a breastfeeding book for naturally adding calories to your bottled breast milk. It said to pump hind milk and let it cool in the refrigerator. The cream will rise to the top. Scoop (or syringe) the creamy upper layers and mix it into 2 ounces of regular breast milk. The nurses jokingly called it “high-test’. I wasn’t allowed to do this as a longterm solution because there was no way to know how many calories I was actually adding and in the NICU things have to be exact.

Guess what? The nutritionist approved the formula and we started adding it to my baby’s milk. As with my other children, there was no constipation, no refluxing, no refusals to drink it. Now when she doesn’t nurse, she gets straight Baby’s Only dairy formula. (I always start my babies on a half breast milk, half formula bottle and then over a few days move to just formula.)

So it’s a great organic formula, so what... ? It is a great company, too, because they believe children with Down syndrome should have the best in life. To this end, they have a Medical Hardship program that provides you with a 30% discount on their products for children with Down syndrome (or any other medical hardship diagnosis). All you do to enroll in the discount program is fill out the form and have your baby’s doctor sign it, and send it in to them. You can order your formula from their online store.

The discount price of around 6.95 per can for the dairy formula (with free shipping on case orders) puts the cost at about .09 cents per prepared ounce. Similac Sensitive is about .13, Similac Organic is about .14, Earth’s Best Organic is about .14, and Enfamil Lipil is about .145 cents per prepared ounce. All I can say is “Wow, thanks Nature’s One!”

Um, ok, I can also say they give out free samples and they ship product super fast (ahem, for those of us who forget we’re on the last can.) Go get your sample and see what your baby thinks.

Tuesday, May 26, 2009

Nursing Tips

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, May 25, 2009

Birth Announcement

Make sure you visit Adrienne at Our Unexpected Journey and congratulate her on Bennett's arrival.

Friday, May 22, 2009

Breastfeeding Basics

You’ve decided to nurse your new baby. Well that’s good news because there are many benefits for you and your baby that come along with breastfeeding. Breast milk is filled with antibodies that will help protect your baby from illnesses, is easy for your baby to digest, and is priced right. Breastfed babies develop fewer allergies, have improved oral motor tone, and may even benefit with a boost in cognitive development.

Feeding Styles
There are two schools of thought when it comes to feeding your new baby... on demand or on a schedule. I am a proponent of combining the two methods. I fed my babies when they wanted it and woke ‘em up if they slept through a feeding time (evident by the leak tracks on my shirt.)

On-demand feeding is offering your baby the breast whenever he shows signs that he is hungry. Consider that anytime your baby is indicating that he would like to eat, he is communicating with you and it is important to validate that communication with a response.

If you spend any time in the NICU, you’ll learn all about scheduled feedings... you might even think you’ve signed up for baby bootcamp. The nurses will feed your baby (or have you feed him) according to a strict schedule that they will determine for you. Because it takes a little longer to feed a baby with low tone, you may find the NICU schedule hard to keep. At home, it might be easier to let your baby determine when he should be fed, unless of course, he would be content to sleep through feedings. If you find that your baby is sleeping for more than two hours during the day or three hours at night since his last feeding, you should rouse him and feed him.

Baby Math 101
How much milk is enough? A newborn baby should eat approximately 90-100 calories per kilogram of body weight per day. There are 20 calories in one ounce of breast milk, which means your baby should drink 4 1/2 to 5 ounces of milk per kilogram per day. For a 7 pound baby this equals about 14 1/2 to 16 ounces of breast milk per day. Take heart, that’s only 2 oz. (or 60 ml.) per feed (every three hours)!

Huh? How do you figure that out? Take your baby’s weight in pounds, convert it to kilos, multiply it by 100 (or 90, your choice) and then divide it by 20. That number is the total ounces of milk your baby needs per day at his current weight.

You will know that your baby is getting enough to eat by:

  • the number of wet diapers he produces. Your baby should have between 5-6 wet diapers per day (after your milk comes in). You can also weigh your baby’s diapers on a small scale. By subtracting the diaper’s dry weight (say 22 grams for a Pamper’s Swaddler #2) from the weight of the wet diaper, you will get an indication of how much your baby is taking in. For liquid volume, one gram is equal to one milliliter (ml) and 30 ml is equal to one ounce of milk.

  • the number of poopy diapers he produces. In the first few days there are usually only a couple tar-like (meconium) poops per day, however, by the end of the first week he should be pooping 3 or 4 times per day. Some babies poop after every feed!

  • the weight he gains. For the first three months of life, a new baby will gain just about an ounce a day, adding up to about 6-7 oz. per week. This can be difficult to measure at home so if you are really concerned with weight gain, you may want to rent a baby scale. Some insurance companies will cover part of the rental fee if your pediatrician writes a script for this. Another option is to get a script for a visiting nurse who can come weekly to weigh your baby (and do vitals and other routine checks). Remember, as your baby gains weight, his caloric needs go up accordingly.

Keeping Track
For some of us (and we all know who we are) keeping track of exactly how long the baby nursed, on which breast, and at what time can become a bit of an obsession. Print off a couple copies of this handy chart to facilitate your record keeping. You may find that your baby has a preference for one breast over the other, or has certain nursing patterns.

Dang, This Just Isn’t Working
Not all babies take to nursing right away. Check out my post, Nursing Tips, in which I share some ideas that might make a difference for your baby.

Sunday, May 17, 2009

Memory Development

Memory is the storage system for all information and new learning. Researchers have observed and suggested that the long-term memory function (skills learned and events recalled) for children with Down syndrome is good. Therefore we will focus on the short-term memory abilities and how to improve them.

The short-term memory can be compared to a computer CPU (central processing unit) that has two distinct hard drives, one for verbal/auditory information (called the phonological loop) and one for visual information (called the visuo-spatial scratchpad). More good news; the visuo-spatial short-term memory spans for our children is comparable to those of typically developing children of similar non-verbal mental age (mental age as determined through non-verbal skills).

However, verbal short-term memory spans, which play a critical role in learning to talk, are specifically impaired. There are several contributing factors to this phenomenon and studies continue to explore how and why these factors influence the phonological loop function.

The first thing to remember is that brain functions usually show dynamic development, meaning they are positively influenced by input and activity. Over time, with consistent intervention, a child with Down syndrome can improve his phonological loop function, thereby increasing his working memory function. This is important for many thinking skills but especially for the development of expressive language (speaking).

Keys to Increasing the Phonological Loop Functionality
After studying the factors that influence the development of the phonological loop, researchers have found several ways parents can help their babies, starting in infancy.

Good Hearing
It is imperative that your child be able to accurately hear words in order to differentiate between them. You can maintain good hearing ability by vigilantly protecting your child’s ears. Your baby should have a hearing test at birth, 3 months, 1 year old, and every year thereafter, and at any other time you think your baby is showing signs of hearing loss. Ear infections are the main contributor to hearing loss in children with Down syndrome.

To avoid ear infections as much as possible:

  • Do not nurse or bottle feed your baby when he is lying down, as the milk can flow into his ear canals from that position and cause infections.

  • Wash your hands, and make everybody else in the house do it too, often. Get some Purell, or another anti-bacterial hand sanitizer and use it prior to touching your baby. Clean your baby’s hands with Purell and then a baby wipe anytime he has been out in public touching stuff other people/children have touched. Be a germaphobe, it’s ok.

  • Do not expose your baby to any second hand smoke. This includes smoke residue on someone’s clothes, hands, face, and in their hair. Someone smoking outside and then coming in and holding your child is still second hand smoke exposure, according to the pediatric cardiologist that attended the babies in the PICU we were in. I heard him give the "talk" to many parents (he had a nose for cigarette smoke!)

  • Stay up on your baby’s vaccinations. Don’t let the controversy over some vaccines keep you from protecting your baby. You can ask for the flu shot that does not contain thiomersal (which has mercury in it) and you can hold off on the MMR until your baby is 2 or even 3 years old. (The MMR is the vaccine that has been questioned for its possible link to autism.) But do consider getting the pneumococcal conjugate vaccine and the influenza vaccine (the flu shot), since they protect against illnesses that are known to bring on ear infections. (Read the comments for this post to hear other parents' thoughts on vaccines.)

Instill a Love of Reading

Research has shown that children who are better readers show bigger gains in short-term memory ability. Daily reading instruction has a huge influence on the capacity of the phonological loop. In preparation for a preschool reading program, it is important for your child to be motivated by picture and story books. Reading picture books to your baby also provides visual support for learning language. Remember that your baby’s visual hard drive is one of his strengths and can be used to aid the development of the verbal hard drive. So go ahead and read to your infant for at least a few minutes everyday. Make it a special time that is comfortable and enjoyable.

Exposure to a Good Spoken Language Environment
Speak often and very clearly to your baby using child-directed speech. If you are not sure what to talk about with a newborn, you can describe what you are doing to her, or describe the things in her view. Do not use baby talk when speaking to your baby, as it is very important that she hear correctly spoken words from the beginning.

Also, try to include children’s songs that have sequencing in your repertoire of songs you sing to your baby (i.e. One, Two, Buckle My Shoe and There Was An Old Lady Who Swallowed a Fly) This helps to lay the groundwork for learning activities associated with phonological loop development that will become important in primary school.

This also means inclusion for your baby right from birth. If you have to make choices about your new baby’s environment (daycare or other programs) consider that a natural speaking environment is more stimulating and will provide more accurate language feedback for your baby than an environment where there are many children with delayed or impaired speech.

Play Babble Games
It is important to play babble games with your baby to encourage speech sound discrimination. Babble (i.e. ma, ma, ma or bla bla bla, etc.) to your baby and then give her a chance to babble back to you. Make sure you give your baby some extra time to reply since it often takes a baby with Down syndrome a little longer to process and organize responses. In the first months of her life you won’t get a babble response but starting as early as the 7th or 8th month, you will start to hear your baby babble back to you. (For us it was around 9 months old and only after she started eating puffs, which got her mouth moving in a new way.)

Evidence has shown that it is important to begin speech work in the first year of a baby’s life. There is a speech sound program, in book form, by Swedish speech and language therapist, Irene Johansson, that details how to provide specific ranges of speech sounds and combinations for your baby. The book follows a week to week format and is aimed at children with Down syndrome and/or autism. (If the expense of keeping up with all the latest books on Down syndrome is overwhelming, consider asking your local Down syndrome support group if they have a library and if they would include this book in it. Then go borrow it!)

Play Auditory Discrimination Games
To build on speech sound recognition you will want to move up to word recognition when your baby is ready. As soon as your baby is able to point and has comprehension for 50-100 words you can begin playing word discrimination games using pairs of picture cards or objects whose names rhyme or sound similar (i.e dog and frog, chair and bear.) You can ask your child "Which one is the chair, the dog, etc.? Then have your child point to the object.

Keep It Up
The activities I have mentioned are specific to improving your baby’s short-term memory function, attention span, and memory’s processing capacity. Research has found that these gains will not last over time if training and support for memory skills are not continued. Improving the short-term memory and all that comes along with it is a life-long endeavor, but the proven benefits are well worth the effort.

Straight From the Source
If you are interested in understanding the details of short-term memory or in reading the research I used (um, even somewhat plagiarized for your edification), you can read the publication Memory Development for Individuals with Down Syndrome by Sue Buckley and Gillian Bird online. The publication details strategies for increasing memory function for children up through the teenage years, so for those of you with toddlers and older children, it might be worth reading for the information I did not cover here.

Picture Credit
Lily from A Walk in Lily's Garden

Friday, May 15, 2009

What If?

by guest blogger ch

Our daughter, LC, is adopted. My husband and I stood in the delivery room and watched her birth. We were left speechless by the honor of becoming her parents in a way that felt as if we had been tangibly touched by the hand of God.

(What if adoption didn’t ask a birth mother to say, "Take this from me" but, instead whispered, "Share this child with me"?)

The truth is, we adopted a baby that didn’t need a mom. LC has a mother. And, believe me, she has earned the title. When she learned of her unborn baby’s diagnosis of Down syndrome and multiple heart defects early in her pregnancy, she did her research and attended numerous appointments with a variety of specialists to ensure this child would have every possible chance at a healthy birth.

For over 200 mornings she was kicked awake by little feet that would one day run through someone else's home. Month after month, she saw doctors and endured procedures to care for a baby’s heart she would entrust to someone else's keeping. For so many weeks, she sacrificed relationships, social acceptance, and convenience to shelter a tiny body. Night after night, she prayed for her child, and for the strength she would need to say good bye.

(What if adoption wasn’t about breaking ties but about building teams?)

People immediately become uneasy when I acknowledge LC’s birth mother. They rush to assure me that I am LC's if the two were mutually exclusive. I am, indeed, LC's mom and quite proud to be so! I am equally honored to have been invited to assume that role by a woman whose humor, courage, and faith both humble and astound me.

Because of this woman’s choice, LC was blessed with life. She will never feel that she was baby with an undesirable diagnosis —abandoned and found by new parents. LC will know she was unceasingly loved by a multitude of people from the moment each one learned of her impending arrival. She will know that the love she deserves required more than a single person could provide. She will also know that love didn’t require a relationship to be broken, just expanded. We were chosen as a gift to LC by someone who loved her, and continues to do so.

(What if the arms reaching out to adopt a child ensured a bestowing mother would never have to let go?)

God didn’t bring LC to us. Instead, He brought us to LC’s mother. He didn’t send us because we were equipped with amazing faith or infallible parenting skills, nor because we needed a baby. He sent us because He had heard the sound of a mother’s heart breaking.

We didn’t go to create a new family, but to join an existing one. A baby was coming who would need the prayers and ferocious love of more than a few to bring her through the trials she would face in this world. Our reaching arms weren’t fixed to take away. God intended them to hold something together and LC’s mother was brave enough to open her own, and invite us in.

(What if adoption was less about abandonment and more about abundance?)

Our near-daily chats with LC’s mother don’t lessen LC’s recognition of my husband and I as her parents. The presence of a Kellymom in LC’s life does not rob me of my own Momma title. The acknowledgment of our shared parenting role doesn’t compromise the impact my husband and I have on LC’s life, or call into question to whom she belongs. LC belongs to a God who proves it every day through the miracles He works in and through her.

She has been entrusted to us for now and we have been called to continue a good work begun in her long before she reached our hearts or arms. She is both the result of a promise kept to us by God and a reminder of the promise we have vowed to keep.

Inside LC’s baby book, beside a picture of her mother, are lines from the poem, "A Valediction: Forbidding Mourning" by John Donne.

Our two souls therefore, which are one,
Though I must go, endure not yet
A breach, but an expansion,
Like gold to aery thinness beat

(What if adoption was about creating a blended family to celebrate and share life?)

LC is not the claimed fragment of a mother’s broken heart tossed aside. She is the unifying rhythm of a group of people who have unexpectedly found themselves sharing a single heartbeat. We are a family made possible by a mother’s courageous faith and the grace of an infinitely loving God. We are a family held together by a love like spun gold, wrapping us up and increasing our value to more than we would have ever been alone. There is no question that agonizing sacrifices have been asked of each of us along the way, but also no doubt that they have added to the luster and shine of the treasure we now find ourselves sharing.

-- ch

How to Share the Love

If you are pregnant with a baby that has been diagnosed with Down syndrome and would like to know more about sharing this gift of a child with another family, please contact Adoption STAR. They can assist you with finding a waiting family with whom to share your precious child.

Tuesday, May 12, 2009

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 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?

Saturday, May 9, 2009

Got Tone?

Babies with Down syndrome have low muscle tone, or hypotonia. When I first heard this, I thought it had something to do with the muscles themselves and that once strengthened everything would be fine. I harbored secret fantasies of mommy/baby strength training with a cute twenty-something trainer. In my imagination, she and I both ended up with hard bodies.

I soon found out that the strength of a muscle is not related to its tone, although low tone can contribute to lower muscle strength. Muscle tone has to do with the amount of resistance to movement in a muscle. This means that the muscle is less stiff than usual and more easily stretched, making it more difficult for the muscle to maintain stability. It also has to do with the speed of the muscles’ responses. It is considered to be a central nervous system disorder and can be thought of as sketchy communication between the brain and the muscles.

You probably don’t need me to describe the clinical characteristics of low muscle tone. You see it everyday. I do too. But just in case you not sure what types of situations are caused by it, I’ll share a few examples. My daughter has difficulty with muscle control (evident when she tries to eat a puff but misses her mouth), slowness of muscle responses to her brain’s commands (the delay between when I jiggle her abs and when she rolls over), and slower reflexes (it takes just that little bit longer for her to cry when she gets a boo-boo.)

However, she can eat a puff, roll over, and cry when she hurts. Low muscle tone doesn’t mean your baby will not develop along the same path as a typical baby. She will... as long as you provide intervention... you know it, the training sessions I was so eagerly fantasizing about.

Work Those Abs, Baby

The strategy for minimizing the effects of low tone has a two-pronged approach. Provide lots of stimulation to improve your child’s muscle function and control, and exercise her muscles regularly to instill a deep, conscious awareness of how her muscles work. Think of it as waking up sleeping muscles and then helping to pave the communication highway between the brain and the muscles.

What should be reflexive (automatic) isn’t and must be learned, and the earlier the better. That is why early intervention is so valuable to counteracting low tone. Starting early ensures that a conscious awareness of how to use her muscles will be deeply ingrained, thus providing the most benefits possible. Early and consistent muscle stimulation and training will help your child reduce the effects of low tone.

Wait, There’s More
Hypotonia does not affect intellect. That’s good news. So say it to yourself loud and clear... the effects of my baby’s low tone have no bearing on his cognitive abilities. Your baby is smarter than you know.

Picture Credit
TUC's Kimani

If you have pictures of your baby under the age of two that you would like to share for use on this blog, tell me. I will visit you and let you know what I need for upcoming posts.

Wednesday, May 6, 2009

Supplements, Should We?

Right up front let me say that no amount of supplements is going to "fix" your baby’s Down syndrome. That said, can they help your baby be all he can be?

NuTriVene - D Supplements
The Trisomy 21 Research Foundation recommends a daily set of supplements for people with Down syndrome. These supplements can be given to infants. When you google the foundation you will see that it seems to exist only to support the NuTriVene online company that sells the recommended supplements. This in itself doesn’t make the product bogus but it does make one question the foundation’s recommendations. After all, they are self-serving.

The NuTriVene website does have a page with some interesting research about the effects of an extra 21st chromosome on free radicals and proteins in the body. How much of this research can be independently supported elsewhere? Um, I couldn’t find much. Because it is a supplement, it doesn’t need FDA approval and the FDA site has zippo information about it. But, then again, the FDA doesn’t say anything about Flinstones either.

Taking a Chance
I grew up on vitamins, cod liver oil, and anything else my mom believed was healthy for me. So after some prompting from her, which I overtly rejected, I secretly popped for the $56 powdered stuff and tried it out.

Ok, now I hear some of you drawing in your breath, and thinking loudly, "How could she give her baby some who-knows-what concoction?" On all other counts, I am an organic ds.mama and nothing questionable goes in or on my babies. However, my youngest baby, who has Down syndrome, spent 16 weeks at birth in the hospital and you should have seen the stuff the medical community gave her. Drugs upon drugs, intravenous plastic tubing, iron supplements, and conventional creams and baby care items. They even tried to feed her corn oil but I stamped my foot down on that one. After all that, I figured what’s one more thing?

The Process
I measure a little less than the recommended amount of the orange powder (still wary, I guess) into about 2 ml of baby formula and suck it up into an oral syringe. Getting it into her is tricky and I do it on her changing table with a washable mat under her. I do this when she is wearing her birthday suit because the supplement leaves bright orange stains on any material. I squirt the awful tasting stuff (at least I thought so) into her cheek pocket a tiny bit at a time. She doesn’t complain.

The Fuzzy Results
After a couple weeks of this, my mom (who I hadn’t told yet) asked me if I was doing something new because my daughter was "so alert" and seemed to be progressing faster. This was hardly a scientific study but it was a hmm... moment. Since I started Omega 3 oil (more on that another day) at the same time, I can’t say one or the other was responsible for any perceived results.

I can say that my daughter left the hospital at 16 weeks old, after major heart surgery, not even able to hold her own head up or reach for a toy. She had also been sick with multiple bacterial infections in the hospital. She made it through last winter with no ear infections, no bacterial infections, no respiratory infections, nothing but an occasional cold. There are lots of other factors that can account for her good health and strong development since then. She is primarily breastfed, she had a visiting nurse administer the RSV vaccine every month, I am a Purell junkie (16 weeks in NICU/PICU will do that to you), she has the benefit of wonderful Early Intervention therapists, and her heart fix was perfect.

Still, it’s possible the supplement is beneficial to her. So, I give it to her whenever I remember and have the energy for the mixing, delivery, and clean-up process.

Your Turn
Am I the only mom out here using this stuff? If you have used it, can you comment on your experience with it, good or bad?

Read Beth's post: Targeted Nutritional Intervention--Vitamins

Sunday, May 3, 2009

DS Bloggers at Your Service

If you’ve just had a baby, you may not have time to hang out on the web and leisurely search for blogs about Down syndrome.

Me, well, I did have time on my hands as I waited for my daughter to get through 16 weeks in the hospital, but it never occurred to me that there might be a Down syndrome blogging community. We did have lots of caring friends and strangers dropping off phone numbers for local Down syndrome groups and families willing to be contacted. But, being in the hospital everyday, we didn’t have the energy or the free time for face-to-face relationships.

Once we got home, I felt very much alone. Like any Internet junkie, I hit the web. And there she was, Ella Grace with the Pretty Face dancing around in a video. I sat mesmerized watching this little girl with Down syndrome shaking her booty. I was so encouraged by it that I made my husband watch it too.

After clicking around her blogroll and many others, I came across Jaxson’s Fight. When I spotted his hospital picture in the upper left of the blog header, I knew we were not alone with the agony we had faced in those 16 weeks of hospitalization.

Then I found Little Miss E and saw the Traveling Afghan project get off the ground. I realized that together we can turn this online community into a family of sorts where we can share goodies, information, or even vacation visits.

And so, Down Syndrome New Mama has to have a blogroll... right? Of course it does! I could go out and scoop you guys up, and list you willy-nilly but I thought it would be nicer to categorize the blogs. That way, newcomers can find blogs where they share similar experiences, and blogs where they don’t.

Here are the categories. (If your blog fits into more than one category, pick your preference.)

The Designer Genes Club
If your blog doesn’t fit in any of the following categories, or if it does but you never post about anything related to it, please choose this blogroll.

Double Trouble and Twice the Blessing
If you have more than one child with Down syndrome please pick this blogroll.

It’s a Small World After All
This category is for families with ethnically diverse backgrounds and those raising children with Down syndrome across the globe.

Sweethearts & Fighters
If your child has gone through (or is facing) heart surgery or any other major surgery, please pick this blogroll. This list is also for those out there who are fighting various medical issues on an ongoing basis.

The Chosen Ones
If you adopted or are in the process of adopting a child with Down syndrome, please pick this blogroll.

The Future Is Now
If you are an adult or a teen blogger with Down syndrome, please choose this category. Also pick this blogroll if you are a parent or sibling who blogs on behalf of a teenager or an adult with Ds.

Projects & Resources
Blogs that are dedicated to projects, like the Traveling Afghan project, or are a Down syndrome resource blog, like Down Syndrome New Mama, should choose this blogroll.

How You Get Listed
You can either put your blog address and selected category in a comment on this post, or email it to me. My email address is available in my profile. If your blog or your baby is a newborn (or newly adopted), please let me know so that I can highlight you with a "birth" announcement.

Ok guys, bring ‘em on!

Friday, May 1, 2009


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.