The R-Word

I’ve never liked the R-word. Retarded. It’s clearly meant to be negative, even if not being directed towards a person.

I’ll admit I’ve used it in the past. Then I grew up and realized it simply sounds impolite and rude. 

Then, lo and behold, I have a child with Ds. I have grown a bit sensitive now; Hannah’s delays and perceptions about her. I’ve heard or read grown adults using the word since I’ve had her and it pierces my heart. You are an educated adult - you really can’t come up with a better word? 

I’ve been having a hard time collecting my thoughts about the word and finally found this brief written piece by another mother that sums up my thoughts very well:

Why the R-Word is not “Just A Word”

Our Horrible, Terrible, No Good, Very Bad Weekend

Oh you guys. The stomach bug. No messing around.

Somewhere, somehow it hitched onto Hannah and started there Thursday night. 

We’d gone to bed at 10pm. 11pm Hannah starts crying. Tim tried to soothe her, then I went in to try. As I sat her up in my lap - BLAT! Over her, me, and Tickle Me Elmo. After cleaning everyone up, we all settled back down around 12am. 

Friday AM, she threw up some more while Tim tried to feed her. I wasn’t sure if it was a stomach bug because we’d taken her off her reflux meds - and that reaction can be rough. But when Tim said she wouldn’t hold liquid down, I knew it was probably the stomach bug. 

Friday Hannah spent half the day with Tim, half the day with Nana here. [Nana we apologize and feel terrible for exposing you : ( ] 

Friday night, went to bed... 2:30am Nora walks in “Mommy my head and belly hurt.” She crawled into our bed, and as I lifted her out - BLAT! Over me, her, and our bed. Sigh. She was still in surprising good spirits as I gave her a bath at 2:35am on a Friday night. She went back to bed as Tim and I stripped our bed and find extra bedding for ourselves. I didn’t fall back asleep until 4am. 6am: “Mommy! I spit up on my pillow!” She did - thankfully just a small amount. Also thankfully, we all slept another hour or so. 

Saturday Nora was okay - not hungry, but drinking fluids. I ran out to Target and Kroger to get weekly needs. I was feeling off. 

Nora napping on the floor Saturday - 11am

I got home and I slowly went downhill. I napped from 2-3pm. I was nauseous all afternoon, waves of it. Finally at 5:30pm it culminated to an epic bathroom run. Ugh - I forgot what it’s like to get sick from a virus - violent and terrible. 

Tim put the girls to bed, I went down at 7:30pm. Slept until 5:45am when Nora got up to go bathroom. She started hoovering food right away. 

I was weak Sunday AM from not eating, but felt better - I immediately started drinking tea and toast to get my energy back in case Tim fell. Which he partly did... he never vomited like the rest of us. 

The juxtaposition of a sick baby; snuggles.

You know how I Nora is better? She’s chewing on AILO'S DOG TOY.

Nora and I managed a half hour outside this evening. I was so upset our entire weekend was wasted - it was so nice outside. 

Now there’s a beautiful thing!

It was amazing how quickly Nora bounced back. Hannah, however, still has not. No appetite since Thursday. Has been laying her head on everyone, constantly wants to be held. Just not herself still. Breaks my heart to see her so lethargic. 

Hopefully we don’t have to deal with that for a long time - BLAT!

One of Them Days

Today Hannah had a 7:30 EKG and a follow up with her Cardiologist, Dr. Kimball. Everyone was out of the house by 6:30am. Zzz.

Like I’ve said, EKGs are easy - just some stickers everywhere with clips that read her heart [?]. I should be more educated on it by now, shouldn’t I?

*Edit: EKG is the process of recording the electrical activity of the heart over a period of time using electrodes placed on a patient's body. These electrodes detect the tiny electrical changes on the skin that arise from the heart muscle depolarizing during each heartbeat.


Hannah did great [other than being a super-wiggly 17-mo old]. She has minor leakage with her valves which is expected after her surgery - it’s of no concern unless it gets worse which Kimball does not anticipate.

Oh look, the g-tube is IN.

Tim took Hannah back to sitter and I drove 2 miles down to my office. 

Around 12pm I got the call from our sitter we’ve been waiting 17 months for; Hannah’s g-tube came out. !@#$%^&* This actually isn’t uncommon; kids can pull them out, balloon deteriorates, etc. 

I guess Alison was tube feeding Hannah, her guess is she was pushing to hard and pressure built up that made it pop out? The g-tube was still inflated when it came out! The hole is maybe the tip of my pinky finger. Somehow it came out and Hannah didn’t even cry or react - ?! 

Either way, I’m incredibly happy I have a Mother-In-Law who lives close by. Dottie met me at our house. Alison had just taped some gauze over Hannah’s hole and had to get the big kids to preschool, then came to give us Hannah. 

The whole ordeal lasted under 1 hour - but given too much time, that hole could have closed up and thank the powers above it did not. Hannah cried pretty hard as Dottie made a few tries to get it back through. She gets over it quickly though. 

*Dottie once again - thank you for saving our butts and being there for us! 

And on a more fun, cute note: Hannah has learned to blow kisses thanks to Daddy!

Congenital Heart Defect Week

I’m going to start off with saying “Why is there a day/week/month for everything under the sun?” National Pie Day? National Adopt-A-Pet-Day? How can anyone keep track?? 

I digress.

SO - the week before [appropriately] Valentine’s Day was CHD week. I know - another awareness week, but since it’s sort of a part of me now, I will always be an advocate. 

CHDs are the #1 birth defect. 1 in 100 babies will have one - more common than you may think. Hannah’s complete AVSD was complicated, but straightforward and thankfully repair-able. We have a handful of heart buddies and everyone has something a little different. We talk about it like the weather; “Oh an ASD? Small or big? How many surgeries will it require? Who is your surgeon? Oh we loved him!”

While I never wanted to have the experience, I’m happy mine can help other families feel some solace that they will get through it, too.

I’m relieved we’re on the other side... I weigh much more this winter and my hair isn’t falling out - yay!

Photo Dump

Both girls were sick the first week of February; Nora had a horrible cough, Hannah had a fever that was fluctuating, and I felt like my head was a balloon full of snot. Tim’s action worked its way through now, too. Thankfully we’re all back to better sleeping and hopefully can fend off any more germs. 

When someone isn’t tired...

Thanks Nora! My job is done here...

Hannah asleep during lunch at the sitter’s.

A letter from Hoxworth letting me know where my blood donation was used - warm feelings!

She polished off a whole packet of oatmeal - WOO!

Nora enjoying hot cocoa after playing in the snow with the sitter’s children.

A visual of Hannah’s g-tube recipe. We have another check-in next week. She ate terribly the week she was sick - I’m praying she gained a LITTLE weight so we can progress to getting that tube out.

Friday Links

We had a long week of colds, Hannah fevers and teething [Hyland’s teething tablets rule!] - so here are two links I enjoyed this week:

What Women Around the World Pack in Their Hospital Bags

Are you kidding me? This article just validates how amazing we have it in the US [despite our awful maternity leave]; clean water alone! I can’t believe a lot of these women have to bring their own razors to cut the umbilical cord!! 

Tim Tebow's “Night to Shine”

I didn’t dislike Tim Tebow, but now have newfound respect for him.

Greg Olsen + Family

Greg Olsen plays for the Carolina Panthers and has a son born with a CHD - I love when professional athletes use their experiences to do great!

Okay, last NFL player, I swear:

Andy Dalton Foundation

I think I’ve posted about Andy Dalton’s foundation before, but it’s just fantastic how much he and his wife help out local families with serious special needs.

Milestone Accomplished?

First, I can’t remember if I’ve mentioned, both speech therapists are so happy with Hannah’s food intake that they both feel they are done with feeding help and want to move to speech/communication - yay!

Kids with Ds can have trouble with speech and delays again due to low muscle tone. Some kids can be non-verbal, but I think Hannah already has a good start - lots of babbling and DAs and BAs. She’ll wave and mimic the “all done” sign. Shake her head “no.” 

Hannah is now going from her belly to sitting... however, not the way she ought to. In the video attached you can see the “wrong” way she’s doing it - doh! Ideally she’d bring her knees up and go to the side. So we’re excited for the wrong reason - ha! 

Hopefully she’ll continue to gain strength and movement towards the right way. 

Cuddles or Lack Thereof

With the deluge of babies this year, I get a little down remembering the newborn stage with Hannah... I wonder if a lot of NICU Moms feel that way; not really being able to cuddle your newborn due to wires or tubes. Days or even weeks. 

4lbs 10oz!

I can’t believe her head fit in my hand!

Only to come home with your baby and she has a catheter tube coming out of her belly. You’re so freaked out it will pop out, you can only cradle-hold her and never do a shoulder/chest snuggle out of fear. 

Tiniest peanut helping Mommy grocery shop.

Once Hannah moved to the mic-key, it was slightly better but still anxious about that button that seemed/seems it could pop out with the slightest wrong move. I’ve basically only cradle-held her since she’s been here. 

Luckily Baby Nora would sleep on my shoulder a lot. 

Baby Nora and a young Mommy!

Babywearing? I loved the idea but in practice, Nora hated it - she always preferred facing out in the Baby Bjorn. Hannah - again, afraid of that awful catheter tube coming out. 

To this day, Nora isn’t a huge cuddler - though in the early hours of the morning, we’ll let her in our bed and I enjoy that time. 

To this day, Hannah is also not a cuddler - she pushes arms and hands away! She’s actually starting to lay her head on shoulders now. Really she just likes to be up, alert, and observing everything!

Both girls are wiggly as all getout. They just won’t sit still to be held. Now days Hannah will roll out of your arms to try and wrestle Nora - it’s pretty funny! You can also tell she wants to MOVE so badly; her muscles just aren’t there yet.

The main point of all this wraps up to last night. I was putting Hannah to sleep - she’s too big to cradle hold anymore so I try and get her to get sleepy just holding her in the chair, but most nights she just sits up in my lap and fusses with my face, hair, or drawstring. 

Well last night, she burrowed like a little animal on my chest, smooshing her face in my shirt, bringing her knees up and actually fell asleep on my chest! I’m not sure it’s ever happened. I got all mushy inside and sat there for a bit to enjoy it. 

Reminiscing over my baby days : )

Mood swing Nora and content Hannah!

Good Articles - Ds Community

First I wanted to share an email correspondence Paul Daugherty [whom I clearly admire] had with a prospective father of a child who could have Ds [was awaiting bloodwork for a diagnosis]. I’ve always enjoyed and shared Paul’s perspective now that we’ve found our feet. 

Scared & Sad

I still firmly believe even a child with “just” 46 chromosomes is equally hard to raise to be a good and valuable human being! Just because you come with an extra chromosome does not mean you are automatically tagged worthless. I know lots of worthless people with just 46 chromosomes! Ha ha! 

The new non-invasive prenatal testing unfortunately may steer many families to not move forward with a child who has Ds. Some think it could even cause a drop or [theoretically] extinction of the Ds community. Wiping out a entire group of individuals because they aren’t “desirable?” Again, outdated fears, myths, and misconceptions. It’s a touchy subject for sure, and I can only discuss it based on my own experience...

Prenatal Testing

Finally, a happy follow-up to that crazy story from Armenia about the man who left his wife in order to keep his son born with Ds. The Mother came back and realized how wrong she was. Again, cultural misconceptions and pressure to rid of those with Ds. Leo now lives in NZ where he gets therapies and is thriving. Not to mention, he is a crazy adorable nugget!

Little Leo

Photo Dump

Just some photos!

Nora’s people are pretty fantastic; I love seeing children’s first drawings of people!

Hannah in her “Care Bear” bunting for the cold mornings!

Sisters on a cold winter morning : )