How To Side-Car Your Crib

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Bedsharing can be a bit controversial. I get it. Do what makes you comfortable. Here is what works for us.

We tried and failed at cosleeping with Henry; he never got great sleep, I have trouble sleeping without my blankets, we abandoned the idea pretty early on and everybody slept well in their own beds. I’m definitely pro-whatever works.

Copley is my snuggle bug, he sleeps best right on top of me, and I love sleeping with my baby, but a lifetime of sleeping alone made it a little hard for me to adapt. By side-caring the crib we all get what we need; Cop gets to be close to mama, nigh time nursing is a piece of cake, and I can still get a good night’s sleep in my own space.

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Remove one side of your crib, leave the other three sides in place. The height of our crib lined up best with our bed when we removed the bed frame. We used plastic cam straps to secure the crib to the box spring, it is important to secure the crib to your bed frame or box spring so that there is no gap between mattresses.

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A pool noodle filled in the gap on the other side of the crib mattress perfectly. This entire “project” cost about $12.

Co-sleeping Benefits:

Everybody gets more sleep
Breastfeeding is easy
Helps boost milk supply
I get to wake up to Cop’s smiling face everyday, groggily nurse him and then roll over and go back to sleep on weekends.

Co-sleeping Safety:

Mattress should be firm, sheets should be tight fitting, there should be no gaps.
No pillows, blankets, stuffed animals near baby
Bedsharing only in bed, and only with mama.
No bedsharing if you smoke, drink or use illegal or prescription drugs that could impair your judgment or cause sedation.

 

9 Months!

I can’t believe Cop is more than 9 months old.

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This baby is such a love! He makes everybody who he meets smile! He’s my snuggle bug. He is so curious. He will eat anything you put in front of him.

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He loves to be held and squeals with delight when I grab a wrap. He is sleeping great (knock on wood) and even slept in brother’s room a few nights!

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He’s working really hard on sitting up, and we are very close, he can even do it by himself for a few seconds! I know how much he wants a little independence, to see more, to go, to follow his brother. I’ll be so happy for him when he can. But I’ll miss my snuggle bug too.

 

365 Fridays

I’m participating in the link up a bit late, I didn’t want anything to compete with WDSD last Friday!

On Friday’s I’m linking up for a 365 hosted by Sarah @ Nurse Loves Farmer, Mindi @ Simply Stavish, and Stephanie @ Behind the Camera & Dreaming.

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73/365- Very dramatic tummy time.

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74/365- I’m having a lot of fun learning to work with light right now. Can’t wait for the weather to warm up so I can really have some fun.

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75/365- Baby loves his daddy.

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76/365- Cop is working so hard on his strength. He can only hold himself up for a few seconds, and we need to help him, but he is making such amazing progress. I’m so proud of him, and he is going to be so happy when he gets a little more independence.

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77/365- Just wearing my baby. That’s what I do.

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78/365- This is probably the very best picture I’ve ever taken.

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79/365- And this is a cheat! I had terrible food poisoning last week and didn’t even think about grabbing my camera. So instead, here’s a picture of a boy and his dog. Murphy, who never wanted anything to do with Henry, is Cop’s gallant protector. He even growls at Henry is he thinks Hen is a threat (and gets in trouble for it).  Nobody is impervious to Cop’s charm.

World Down Syndrome Day

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Last year at this time… I didn’t know. I had no idea how in love I’d be with Copley, and with Down syndrome. I had no idea I’d count myself among the lucky ones. I read a phrase that stuck with me “We aren’t sad and life isn’t hard” I wonder why we ever thought we would be.

Join me today in a celebration. I’m proud, I’m happy, I’m so in love.

Babywearing And Down Syndrome

I guess now is as good a time as ever to tell you guys I’m now an official Volunteer Babywearing Educator with Babywearing International.  I took and passed my test last weekend, and I’m working with the BWI Chicagoland group.

When I was pregnant, avid babywearing mama and woven wrap collector I am, I was busy dreaming and planning to wrap a newborn again.  Babywearing is a big part of my life as a mama, for both utilitarian and hobbyist reasons. One of my first questions, after, you know, asking the BIG questions, was how am I going to need to adapt babywearing to meet our needs?

Of course there is no way to predict or plan or know ahead of time which characteristics or challenges your baby might have, but on the whole, there isn’t too much extra to worry about wearing a baby with Down syndrome. The biggest challenge for us was hypotonia, low muscle tone that makes Cop a little weaker and floppier than his brother was.  This means you have to keep a better eye on positioning when wearing.

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As far as what KIND of carrier is the best choice for you, the answer to that question deoends on what kind of carrier you like! But I will add that in my experience I’ve found the more adjustable the better.

I prefer a ring sling to a pouch

 

I prefer a woven wrap to a stretchy wrap

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I prefer a mei tai to a SSC or buckled carrier.  Now that’s not to say that you can’t use a pouch, a stretchy wrap or a soft structured carrier, but you’ll have to be extra careful about fit, and make sure you use inserts or bolsters to keep baby in the proper position.

Friends and Family Q&A

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Someone I love just got a prenatal Down syndrome diagnosis, what can I do help them?

I put this Q&A together based on questions I received from some friends who were brave enough to ask. I like talking about Down syndrome, I don’t want people whispering about it or acting like it’s taboo or off limits, so if you have questions, I really encourage you to ask me, I’m happy to talk about our experience.

What do I say to my friend?

Anything. You can’t say the right thing right now, because the right thing doesn’t exist. That’s not your fault. Your friend’s world just got thrown off kilter, they need time to adjust. They are figuring things out. Give them space and time if they need it, but they may not want space either; follow their lead. The amount of supportive love and messages we got in the early days was maddening, but looking back now all I remember is how much people flooded us with love.

Don’t blame them for having lots of conflicting feelings and emotions. Don’t turn their child into a mascot for your pro life politics. Don’t say you’re sorry. Don’t pity them.

Do tell them you love them, and that you’re excited to meet their baby. If they have older children and you are able, offer to babysit. They are about to have a lot more doctors appointments.

People came out of the woodwork to tell us stories of a kid with Ds they met at the park, or their cousin’s aunt’s neighbor who was the sweetest man ever. They sent me email addresses and phone numbers of strangers they expected us to call because they also have children with Ds. I’ve been flooded with recommendations for blogs and people have sent me the same YouTube video a hundred times. It’s annoying. But also? It’s amazing. We are so lucky so many people love us and care enough to reach out, recommend and hit send. Don’t stop, we love you too.

But what do I say? What words do I use?

It should go without saying that the R-Word is off limits. But you might not know not to call their child a “Down’s baby”. Their child is a beautiful tiny human who happens to have an extra chromosome. He has Down syndrome, he isn’t Down syndrome. Use people first language, please; for example, Copley is a baby with Down syndrome.

Will their baby look like them?

Of course he’ll look like them! He’s made of their DNA! I admit, I was a little worried about that too when I was pregnant, as silly as it seems now. We have a doctor who asks us at every visit if we are sure he has Down syndrome, “because he doesn’t look like he has Down syndrome”. Come on, Doc! Of course he looks like he has Down syndrome (I say “looks like he has Down syndrome” not “downsy” which I’ve heard, cringe), in so much as anybody can look like they have Down syndrome. That is, he does exhibit certain characteristics associated with Down syndrome, but that doesn’t mean he looks like every other person who has Down syndrome, or that he’s not the cutest damn baby in the whole world who, incidentally, looks just like his mama.

Does it have degrees? Is it possible to have mild Down syndrome?

Their baby will have an extra chromosome in every cell in his body, that’s how Ds works. A friend shared an analogy with me once, and it was so simple and brilliant.

Down syndrome isn’t a spectrum is disorder, it is a syndrome where people with Ds share in a set of characteristics, each of varying degrees.
Think of Ds like a salad bar. It’s not a perfect analogy but it simplifies the point.
The salad bar contains all of the characteristics of Ds. As you watch people go through the salad bar, no one gets every item on the salad bar. Some get several things and some just grab a couple. Some get heart issues, GI problems, hearing problems, sandal gap toes, Palmer creases, small ears, etc. but not everyone gets the same amount of any one item.
Everyone gets lettuce though. You can think of lettuce as intellectual disability. Some people get more lettuce than others but everyone gets some of it.
And almost everyone gets salad dressing. Dressing is the hypotonia or low muscle tone. Some just get a little and drizzle it on the side of their plate, like someone with Ds might have mild hypotonia in their arms, or some might gets lots of thick dressing, like some people with Ds have hypotonia throughout their body, including the organs and digestive system causing their digestive system to move slowly.

In the end, you may find a few salads that are similar to each other but ultimately no two salads will be alike. People with Down syndrome have characteristics in common but each has their own unique combination of those characteristics.

I’m worried about their baby. Some of those “characteristics” sound like pretty serious health issues.

They might have some pretty serious health challenges, Or they might have a totally healthy baby. Some of us get so lucky, but some of us are given babies with broken hearts. It’s not fair.

10 Things You Should Know About Your Prenatal Down Syndrome Diagnosis

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1) This is not the end of the world. It’s not even the end of the world as you know it. In a few months, it will surprise you how little you think about Down syndrome.

2) You aren’t special. Or chosen. You weren’t given a special child because you could handle it. I don’t mean to burst your bubble, I want to lift you up. You don’t have to be Supermom, you just have to be mom.

3) There are some medical things that are going to become pretty important. If you haven’t already, soon you’ll start seeing a MFM for more and better ultrasounds to keep an eye on your baby’s growth, a cardiologist for a fetal echocardiogram to look for and plan to treat a congenital heart defect that is common in babies who have Down syndrome, a geneticist or genetic counselor to learn about Down syndrome and do your baby’s karotype, and you might start BPPs (bio physical profiles) and NSTs (non stress tests) to keep an eye on your baby toward the end of your pregnancy. I know that sounds scary and overwhelming. And it is, it’s also exhausting. But it doesn’t last forever, soon your baby will be here in your arms.

4) YES you CAN breastfeed your baby! A lot of people will tell you that babies who have Down syndrome will have trouble nursing. They should tell you that they MAY have trouble nursing. And they may not. It’s a great idea to be proactive, especially if this is your first baby. Go to a few La Leche League meetings, talk to a Lactation consultant, read The Womanly Art of Breastfeeding. Grab a nursing pillow and stock up on some nipple cream. You can do this.

5) Some people are awful, mean, ignorant, spiteful, rude, and hateful. I’m sorry. I don’t have advice about those people because they make me mad and sad too. Hurtful comments and language should be a thing of the past. I wish I could tell you it was.

6) Some people are well meaning, loving, caring… And still can be hurtful. They don’t mean it, and they wouldn’t be if they knew better. Try to remember the difference between the well meaning and the spiteful, and give the former a break. Your friends and family want to be supportive, but odds are they are as lost as you are, and it’s going to fall to you to teach them how to support you.

7) Find community. Find a local group, we love our local Gigi’s Playhouse, find a Facebook group, go to babycenter and find both Down syndrome and prenatal diagnosis groups. It’s nice to know people who just get it.

8) Feel your feelings. whatever they are. It’s complicated and it’s okay. Are you feeling sad? Angry? In denial?  It’s so normal, give yourself a pass on adding guilt into the mix. You won’t feel so lost for much longer.

9) The Internet is full of great stories and YouTube videos that will bring tears to your eyes AND put a smile on your face. Just don’t read the comments! (see #5)

9) Resources! Start here at www.downsyndromepregnancy.org There’s a free downloadable ebook with so much information, tips on how to deal with comments, how to tell family and friends, and even a grandparents guide to help them adjust.

Congratulations! I’m so happy for you, you are so lucky! I mean that, Down syndrome sounds like such a big thing when you first hear the words, but really, the similarities vastly outweigh the differences. Your baby will eat, sleep, poop. Give hugs and kisses and snuggles. Laugh and cry. And you will too. Welcome.

Out Like A Lamb

On March 14, 2013 we received a prenatal diagnosis that Cop had Down syndrome.

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March. You know the old adage that March comes in like a lion and out like a lamb? So does a Down syndrome diagnosis. Believe me when I say we were scared and sad and grieving and feeling all the other feelings we were supposed to feel. When I reread the posts I wrote during that time my heart hurts for us, because we felt lost and helpless. We had pretty decent doctors and staff, though I know that’s not often the case, and I hear so many horror stories from parents about the awfully insensitive things people heard from their care providers when they received their diagnosis. I don’t know if I ever went into the details of our story, but I will today.

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I’ve told you before about our false positive with Henry. We received a darn high risk from the 16 week quad screen, but he was our miracle infertility baby and there was no way we were risking an amnio, no matter how small the risk, so we waited it out and when he was born he was perfectly healthy and typical. And beautiful, but that’s neither here nor there. When I got pregnant a second time, we knew we wouldn’t be terminating if the baby did have Down syndrome, because we worked through that conversation when I was pregnant with Hen, and we didn’t want to go through all the false positive drama again so we skipped genetic testing altogether.

And fate laughs.

At our anatomy scan they saw a few things that raised red flags. Soft markers, club foot, and maybe something intangible that they’ve never really admitted to, but whatever it was, when we were referred to a MFM he looked me in the eye and said “get the test.” Prenatal testing had come a long way in just 3 years, so we did.

I was at work, it was about 1 pm when the phone rang. I recognized the number and the pit that had been in my stomach for the last 2 weeks since they took the blood for the test tightened. I answered the phone and as soon as I heard the counselors voice I knew what she was about to say. To her credit, she didn’t sound like she was delivering bad news, but she sounded like she knew it was going to rock our world. She didn’t say “I’m sorry” and that was a huge gift, all she said was “the results of your test are back, and your baby has down syndrome”.

I remember exactly what I said in reply… “no shit?”

Oozing with gravitas and eloquence, no?

I hung up the phone, packed my stuff up and went home to be with Josh. We spent the rest of the afternoon eating Oreos and watching those amazing videos on YouTube that people will now send me for the rest of my life. The ones that are so happy but make you cry because they are so touching? I love them. We needed them that day, because that is how we needed to start our journey, laughing.

We’d already told out genetic counselor that we weren’t interested in termination, so she didn’t bring it up when we went in for our follow up appointment, but we were aware that it was an option. Instead she’d pulled lots of info and resources for us. Told us about a thousand times how “awesome” we were and we sort of felt then like we feel now. I mean, we are awesome, but not because our kid has Down syndrome.

The rest of the pregnancy and the first few months of Cop’s life were jam packed with doctors appointments and follow ups and now we have therapy at least once a week… but the extra appointments, you get used to those really quickly. You get used to everything really quickly.

And here’s the “out like a lamb” part. I thought then, that March 14 would be an anniversary of mourning forever. But you know what? I completely forgot about it. I was too busy snuggling my baby and doing a puzzle with my toddler and living my life that I didn’t even remember. And more than forgetting it, I think if I had remembered, I might have celebrated. Because I’m so happy that Down Syndrome is a part of our lives now. You might not understand that, but I mean it.

So we’re going to celebrate Down syndrome here for the rest of the week, counting down to World Down syndrome Day on Friday. I hope you join us.

365 Fridays

On Friday’s I’m linking up for a 365 hosted by Sarah @ Nurse Loves Farmer, Mindi @ Simply Stavish, and Stephanie @ Behind the Camera & Dreaming.

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I think I lost a few photos when I reformatted my cards this week, whoops!

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66/365- Josh has been grabbing the camera a little more often which is kind of fun, catching parts of my day too- here I’m measuring warp threads for a new wrap I’m weaving.

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67/365- Henry wanted to go outside without shoes and socks and didn’t understand that it was too cold. But he figured it out pretty quickly!

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68/365- I lost (they vanished I swear!) my pics from this day, so please enjoy this selfie!

69/36569/365- Henry loves this giant puzzle, a fun gift from his Auntie. I love the bright colors, makes for a nice fun photo.

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70/365- It snowed AGAIN! I decided to make the best of it by grabbing my camera and catching some pretty. I am yearning for summer though, and green Ivy sprawling across our fence.

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71/365- This kid and his creepy clown wig hair! One of these days he’ll consent to a haircut.

72/36572/365- A little post prune kitchen sink action.

Contouring vs. Not

Let’s have a frivolous chat about make-up okay?

Last summer I found this “Mom make up” routine on Maskcara and I completely changed how I was doing my make up. It felt great to have a little direction and learn about some of these make-up artist techniques. I felt really good, and it was a quick way to get pretty when I was feeling exhausted and postpartum and not so pretty.

BUT THEN… A friend turned me on to seasonal color analysis, and even though I’m self diagnosed (though I would love to be draped one day) I feel really comfortable in the Bright winter palette.

I feel bright, and rested and alive. It took a little getting used to the idea, but now it feels right.

 

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I was missing my contouring though. One thing I’m a little self conscious about is my nose, especially after having kids, pregnancy made my nose wider (I swear!) and I kind of hate it. You know I’m all for self love and body acceptance… but if a little thing like contouring can make me feel great about my nose I’m all for that too. The problem is, there is no brown in the BW palette. And now that I notice these things, I notice how muddy and dull I look in brown.  It ages me, and I’m not into that.

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So for me, no contouring.  If I was any other season and I could pull off brown, I’d probably keep doing it.