One Year Later

Last week I shared my inspiration with you. You got to meet my darling Summer Rain. She had a rough start and her long journey home may have made you cry.

I'll make that up to you this week ;-)

Here she is one year later, full of love and laughter, and guaranteed to put a smile on your face.

My Inspiration

I try not to make this blog about me and mine but this week is an exception. September 24th marks the anniversary of my daughter’s open heart surgery.

My baby was born with two major heart defects. She spent 17 weeks on the ICU front lines. She is a warrior, and the toughest baby on my block. Today I am thankful that her health is perfect.

For this week only I am going to put aside my shyness and invite you to come meet my baby girl and the rest of the gang.

10/13/09 Update
If you missed seeing the video, it will be back next year in Sept.

Umbilical Cord Idiosyncracies

My daughter spent some time fighting monsters in the NICU. Most days she hung out in just her diaper so we had a good day-to-day view of her umbilical cord stump. I let the nurses know right away that if she should lose it when I wasn’t there, they were to bag it for me to keep.

(Enough with the eeewing... I had no idea it was gross and uncommon until the NICU nurses gave me the funny look and pointed out that usually they just throw them away.)

The average umbilical cord stump falls off within eight to 21 days, with most gone by two weeks. When my daughter hit four weeks old, the staff started commenting that it was a little weird that hers was holding out. Her NICU pictures remind me that sometime between day 35 and 38, a pediatric surgeon played with it until it came off. I’ll bet he was one of those kids that had a loose tooth out within days.

“Could it be the Down syndrome?” I heard the doctors wondering during rounds one evening. No one knew. I forgot all about it until I read out here in our blog community that someone else’s baby hung on to their cord stump for a long time as well. My curiosity got the best of me and I started looking into it.

Who knew the umbilical cord could be so interesting... there are umbilical hernias (20% of general population), two vessel cords (1 in 100-500 general pregnancies), late cord stump loss, and short umbilical cords.

Your Turn
Are babies with Down syndrome prone to umbilical code idiosyncrasies? Let’s find out. Take the poll <--- left column 5 blocks down. Please comment and let us know anything interesting that comes to mind concerning your child’s cord or umbilical cords in general.

Baby Pictures, Please

By now you know ds.mama loves showing off darling babies from our online community. And, I am sure you enjoy looking at all these beauties.

As I visit our blogs and read about our families I often come across a picture that strikes me and I tuck it away in my mind for a future post. Then when the time comes, I forget who I saw where doing what... (let’s blame that on my four kids.) If I am lucky, I remember where the perfect picture for my post is but I am not sure if I have permission to use it.

Which brings me to my request. If you are willing to let me use pictures I come across on your blogs of your children, please leave me a comment saying so (even if I have already used a photo of your child in the past). I’ll make myself a file and the next time I see your cutie doing just the perfect thing, I’ll save the picture with my post notes.

If you are willing to be on a picture email list that I will use to make calls for specific types of photos (e.g., babies eating, reading, signing, etc.) then please email me (ds.mama at yahoo dot com) with your name and email address.

Thank you, a great big one, to those of you who have already let me post pictures of your babies and to those of you who decide to let me in the future.

Mama Bear, Mama Bear, What Do You See?

Just as newborn babies of differing nationalities or races have visible distinguishing features, so do babies with Down syndrome. While babies with Down syndrome do share some unique features, they mostly look like their biological parents and other family members. All babies are different and not every baby will have all or even most of the physical characteristics described below.

Babies with Down syndrome have very delicate facial features (which have no negative effect on your baby’s senses or intelligence.) You will find that your baby’s features are very proportionate.

Head: your baby may have a marginally smaller head circumference. This size difference is hardly noticeable and you may not even see it or realize it until your pediatrician measures him and marks his growth chart. The back of your baby’s neck may be chunky but this disappears with age. The back of your baby’s head may be a bit less rounded than the average newborn.

Nose: your baby may have a cute button nose with a softly contoured nasal bridge. This smoothness lends itself to a slightly more broad facial appearance.

Eyes: your baby’s eyes may turn gently upward at the outer edge. His actual eyes will be the same size as any other baby but may give the illusion of being beautifully enhanced if your baby has sparkling brushfield spots. Your baby’s eyes may also have small crinkles at the inner corner called epicanthal folds.



Mouth: your baby may have a little rosebud mouth. A smaller mouth may give the illusion that an average sized tongue is bigger than it actually is, (though the jury is still out on whether some children with Ds do have more ample tongues.)



Ears: babies with Ds are graced with petite ears that may or may not have a slight curve at the top. Sometimes baby’s ears are set a little further down on his head though this is hardly noticeable.

Hands: some babies with Ds have a single line on their palms called a transverse palmar crease. This crease occurs in more than 3 percent of the general population.Your baby’s hands may be smaller and his fingers maybe shorter than average. This does not interfere with a baby’s gross or fine motor skills.

Feet: some babies have a small space between their first and second toes which is often accompanied by a vertical crease on the sole at this spot.



Chest: your baby’s chest may appear slightly bowed out or slightly depressed. This minor difference in shape has no negative effect on your baby.

Skin and hair: you may find yourself with a fair-skinned baby who has lighter colored hair than yours. Some babies have very fine soft hair that may be thin in spots. These thinner spots should fill in as your baby grows.

Muscle tone: many babies with Ds have low muscle tone. While this has no bearing on how your baby looks, you will notice that your baby is a bit floppy with an amazing level of flexibility.

So, mama bear, mama bear, what do you see? I see an adorable baby looking at me.


Picture credits: Kacey's daughter Ella Grace, and Lisa's son Finnian

Only Three Days Left

So far it is looking like babies with extras like to come early... but the only way we will know for sure is if you cast your vote in the poll. Its over there <-- in the left column, five blocks down. There are only three days left, so hurry up and put in your two cents.

It’s Rocking Around Here

Ok, I swear to you... I am not a slacker. Its just that there are babies, babies everywhere! And with new babies come new blogs...

New Blog and New Baby
Cole has been hanging out with us for a bit and has just launched her new blog, The Tao of Tulips. Go check out her beautiful Abigail (aka The Quail). This baby girl has the cutest smile. It makes you want to plant a big smoocheroo right on her.

New Baby
These guys post some funny pictures, seriously, laugh out loud funny. Go check them out at Teeny Tiny Hopkins and meet Lucy Mouse, I mean Lucy Kate. This baby girl is a real fighter. She has grown big and strong since her tiny start and has just aced heart surgery.

New Baby and New Blog
Let’s hear it for the cutest boy in Iceland. Kristófer, I am in awe of your swimming skills little man! Dig out your passports and head over to Reykjavik, Iceland to welcome Thelma and Kristinn to parenthood and the blog-o-sphere.

New Blog and New Baby
Lara and Michael welcome baby number four. This is one busy mama, but thankfully she found the time to start a blog, Parker's Purpose, so we get to enjoy her lovely family too.

New Baby and New Blog

Logan Christopher is one tough baby boy. He’s just under three months old and has already sailed through heart surgery. But it isn’t OHS that knocked my socks off, no... it was the picture of him holding his own bottle while still in recovery.

New Blog, Baby on the Way
Oh how exciting... Henry’s still in utero ;-) But you can check him out now because mom, Kara, has awesome 3d ultrasound pictures posted of him. By the way, they are still searching for the perfect middle name, so if you have any ideas make sure you head over to Three Little Kings and tell her.

If you would like our community to know about the arrival of a new baby 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.

That Rowdy Tongue

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

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

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

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

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

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