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 : )

Tiny Dancer

It’s official: we will now be parents who drive their kids around to activities on Saturday mornings. Sigh. I’m glad we held off until age four - ?  I’ve never wanted to push Nora to start anything until she was ready/interested. 

Well - our sitter/her daughter invited Nora to their ballet/tumble class on an “Bring-A-Friend” Day. Well played, Dance Etc. Very strategic to lure new members in! Tim and I both knew Nora/we would bite. 

Anyone who has spent a smidgen of time with Nora knows she loves to perform. We thought tumbling would be good, maybe some dance - but a casual class! If that exists. 

Tim took Nora and he went ahead and signed her up - thankfully you pay in 4-week increments, so you’re not set for like 40 weeks or so. We’ll see how long Nora rolls... ?! I’m just glad it’s not just dance - tumbling is involved! 

Hannah is signed up for a 6-week physical therapy class with her peers through DSAGC - it’s extra PT which is great, but half the reason I want to go is for social reasons/building relationships with the other Ds families. 

SO - Saturday mornings for the next six weeks are a 10am PT with Hannah and 11:45am ballet/tumbling with Nora. 

Nora with Adalyn

It was princess day when Nora went. Yay. [haha!]

January Cleanup: Update

Well, I did one week being pretty strict. No grains, dairy or sugar. I did have some amazing Ghirardelli peppermint bark halfway through during the weekend. I didn’t feel bad.

The next week was a little trickier; I was on a photoshoot for two days and lunch was brought in, so I had less control. Pad Thai one day, a veggie sandwich the next. I had some whole grain pita chips once or twice. 

Dinners were the hardest - the most difficult critic was Nora - I know toddler/preschoolers need variety and I didn’t play well; dinner fits were consistent the 2nd week. Even I was getting tired of sweet potatoes. Tonight I made a black bean lasagna and I think everyone was relieved - ha! 

I don’t feel like I failed - I think I just needed a bit of a jump start. I typically eat very well and run at least 10 miles per week, so I don’t think I need some revolutionary change in my lifestyle. I think the holiday sugar tooth just got out of control and I reigned it back in.

Nice experiment; I think I enjoy having chia “oatmeal” in the mornings now!

January Cleanup

After an indulgent holiday, like most of the nation I felt a need to clean up my diet a bit. 

Typically my family and I have fairly good habits. However, when I was training for the Queen Bee, I  flippantly responded to sweets and junk as “Oh, well I ran X miles today, I’ll just have this donut.” Most of my running friends act this way, too. Well, even after the race I was still eating those donuts. I truly noticed a change in how I felt and some physical parts of me. 

I had heard of Whole30 and read up on it a bit... I’d be intrigued, but not sure I want or need to challenge myself that harshly Whole30 Rules. We already eat mostly fish, veggies and have eliminated most grains due to Tim’s GERD. 

Plus I don’t know how much of it I buy... eat lots of animal protein but rice and legumes are not allowed? I’m feel confident saying we have a lot of bad conditions and diseases here, yet the Eastern world who has a cleaner diet - in my opinion - does not see the rate of disease we do - and they seem to eat a lot of white rice. 

Additionally, the Sports Nutritionalists who made this diet UP are just going on judgement:

Well damn, I know the basics of food and nutrition, I should have created my own system and made millions. I think for those who need strict guidelines and rules - awesome. I feel like I know enough about food to clean my own act up. 

So net, I’m basically doing my own diet re-boot by eliminating dairy, sugar and grains for about two weeks. Keeping rice and legumes where I choose. After about two days, I already feel really good and my gut feels good; no bloating. 

Ramping the running up slightly for the Heart Mini 15K [about 9 miles] on March 15th - last year was great and I had a PR pace of 9:37 or so. I like this distance because I don’t have to train *too* hard. I’ve decided to only do the Pig 10K this year - I like easing back and being able to focus on the family on the weekend - specifically use mornings to help Hannah get some physical therapy in at home. I’ll do the Queen Bee Half in the fall again - 5am runs are way better in warm weather. 

Today was rough: waking up at 5am to run in 19˚ weather isn’t even my idea of fun. Two base layers, schlumpy college hoodie, wool socks, snow mittens, a face/neck muff, hat... I probably looked homeless, but darn it, I wasn’t too cold!! I managed 3 hard miles I think due to my inefficient breathing in the frigid air. 

Let’s do this, 2016!