So much for regular updates – 21 months later…

We got really, really lazy with this blog. But if you think about it, that’s  a wonderful thing. Neither Mike nor I identify with the label of “heart parent,” and I feel almost silly when I mention to people that Verity spent her first 17 (ish?) days in a hospital because of a heart defect. The days of spending hours inside a hospital became so dim in our memories that we decided we might as well have another kid. Number two should enter this world sometime in January, 2017.

Speaking of the new kid, whom we refer to as “Jerome” (inside joke), as far as we know, he’s “heart-healthy.” During our 20-week ultrasound, his heart looked good, but our OB still wanted me to have an echocardiogram to rule out the risk that Jerome also had a heart defect. We were told by my OB and cardiologists that TGA is not currently known to have a genetic component. That being said, Jerome did have an increased risk of having a major heart defect given Verity’s condition. (While the risk increased, it was still incredibly small. Something like 1/4000 instead of 1/5000*). Long story short, Jerome is likely fine. He has a very, very small chance of having any heart defect and an almost 0% chance of having a major heart defect given the findings of the echo.

Here are just a few pictures from the past couple months. She is very clearly doing great. I wish I had better pictures showing her physical prowess, but trust that she could probably run faster, climb higher, and beat up your kid if he/she is younger than 3.**

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If you or your kid has/had TGA, we know your story is most definitely different than ours. We also know how incredibly lucky we’ve been, and please know, that we aren’t taking any of this for granted. For now, Verity’s next big adventure is Big Sisterhood. Here’s hoping she takes to it like she has the rest of the challenges she’s been presented with. 🙂

Lots of love,

Dana

 

*Mike likes to say that 70% of statistics are made up. This is one of them, but the sentiment is correct.

**We’re trying really hard to prevent the latter from happening. Sometimes we’re too late. Sorry…

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Verity is 11 months old!

Verity just had her 11 month NICU follow-up. She was described as “miracle baby” among other positive descriptions! Since the last blog update, she has since started walking full time and even started a bit of running! We have a few photos of wintry Verity to share:

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Verity exploring Michigan winters.

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Verity wants to destroy Grandma’s Christmas tree.

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Verity exploring Michigan winters.

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8 months old, photo updates!

Verity is 8 months old today. Since last update, she has started eating solids and even started taking a few steps. Time for a photo update!

Apple picking is the perfect fall activity for a midwestern 8 month old.

Apple picking is the perfect fall activity for a midwestern 8 month old.

Verity reaches for the desired reddest sweetest apple.

Verity reaches for the desired reddest sweetest apple.

Now that it's getting cold in Chicago, Verity gets her first winter hat.

Now that it’s getting cold in Chicago, Verity gets her first winter hat.

She also likes to kick dirt around.

She also likes to kick dirt around.

Verity likes to wake up at 5:30 so she can play in the twilight hours with her dad.

Verity likes to wake up at 5:30 so she can play in the twilight hours with her dad.

Verity also enjoys picnics by the river.

Verity also enjoys picnics by the river.

Verity getting ready for her first 5k stroller ride (O'hare 5k) -- dad ran a 22:50 5k with Verity in tow.

Verity getting ready for her first 5k stroller ride (O’hare 5k) — dad ran a 22:50 5k with Verity in tow.

Verity is excited that she figured out steps and is climbing up the playground to the slide.

Verity is excited that she figured out steps and is climbing up the playground to the slide.

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Holy cow! Shes crawling! – 6 Months (and a few days)

Verity loves parks and her windbreaker

Verity loves going to parks and wearing her windbreaker.

A little less than a year ago, we found out that our baby had Transposition of the Great Arteries. We read everything we could to prepare for Verity’s birth, and we planned for the worst case (while hoping for the best).

Verity crawls like a turtle.

Verity crawls like a turtle. This is a nice little city park in our neighborhood where all ages of kids come and play.

It’s now been 6 months since Verity’s birth, and we have been incredibly lucky. Her surgery went well, and she recovered quickly. Despite her unlucky start, Verity has been meeting every important baby milestone. It’s hard to believe that our 22 pound destroyer-of-all-things, who was once hooked up to multiple medications and machines, is already crawling around the house.

Verity is happy to be playing with purple monkey!

Verity is happy to be playing with purple monkey early in the morning. She wakes up at 6 a.m. every day.

Verity had her 6 month cardiology checkup, and so far, her heart is doing great! Unless you saw her scar, you would probably never guess where Verity spent the first three weeks of her life. We know how incredibly lucky we have been, and we hope that Verity maintains her zest for life.

Thanks for your support during those hard times. We expect lots of good times from here.

Verity goes to a mushroom hunt.

Finally, Verity goes to a mushroom hunt in the County Parks with the local mycological society.

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Cardiology Check-up – 3 Months (and a few days)

Verity hanging out post-ECG and ECHO, waiting for her doctor.

Hello friends!

Spring has sprung in the Windy City, and I’ve been making a concerted effort to expose Verity to as much of the world as I can! We went morel mushroom hunting in Michigan last weekend, and we’ve spent lots of time wandering around our neighborhood. We’ve even made a baby-friend in our building!

You may recall that Verity had a cardiology check-up at one month, and this most-recent appointment was part of the typical schedule for TGA babies. The check-up followed the same general schedule: a vitals check, an electrocardigram [ECG (when did it change from EKG to ECG?)], and an echocardiogram. The whole thing took 2.5 hours which was just a little shorter than our last appointment.

Here's  a happy baby and a nice scar shot.

Here’s a happy baby and a nice scar shot.

Verity’s vitals continue to impress her medical team. She weighed in at 17 pounds and 13 ounces, and she was 25.59 inches long. She actually dropped off the growth curve for weight, at this point, since she’s so big, ha. Whatever – fat babies are cuter than skinny babies, right? Most importantly, her blood oxygen levels are still excellent! They didn’t quite reach 100%, but the nurse said 99% was a great reading for a baby who was wriggling her way out of the sensor.

The rest of her appointment resulted in more good news. Her heart rhythms were great (which is what the ECG is for), and her heart looks and is operating as it should (as shown on the echo). During her last appointment, Verity’s cardiologist explained that her pulmonary artery looked like it might be slightly narrower than expected. While her doctor still saw this narrowing during today’s appointment, he said it doesn’t appear to have changed since her last visit. This, he said, was also good news.

Verity has been on a schedule of baby aspirin every third day, which the doctor says helps the coronary arteries function. Thankfully, Verity’s doctor thinks everything is looking good, so he wants to see her a little sooner than expected in order to hopefully take her off that medication. SO! We’re looking at one more cardiology appointment in three months. After that, if everything continues to look good, we might be weaned down to yearly appointments! Hooray!

I always forget to take pictures during the ECG and ECHO, so here's another in the waiting room.

I always forget to take pictures during the ECG and ECHO, so here’s another in the waiting room.

We have a couple other updates that I plan on writing about soon (I know! Multiple posts in a month?!), so hold tight for more pictures of baby!

I know I say it every time, but thank you so much for your continued support. We love you all, near and far, close friends and strangers.

🙂 Dana, Mike, and Verity

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Verity at 3 months!

Verity is now 3 months old. Here are some photos of her life now:

Verity at Botanical Gardens

Verity at Botanical Gardens thinking about life…

Verity pulling her mother's strings.

Verity pulling her mother’s strings. Brother Chester is looking on.

Verity at North Ave. Beach.

Verity at North Ave. Beach doing her hated tummy time.

Verity enjoying summertime Chi.

Verity enjoying summertime Chi with her mommy.

Mandatory Scar Check

Mandatory Scar Check, 3 months + 5 days.

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11 weeks out – How’s Verity doing?

Hello friends,

Verity checking out things at the Field Museum.

Verity checking out things at the Field Museum.

Have you read blogs that people started as a fun hobby, and then they just fell in love with blogging and managed to make a career out of it? Yes? Me too! Except… this isn’t one of them. I honestly have no idea how people manage to do anything with kids around. Anyway, for the few readers of this blog expecting TGA babies, you’re the reason we keep updating this blog. 🙂

So how is Verity doing?

Verity tries out her Goo-ma's (Mike's sister) headband purchase.

Verity tries out her Goo-ma’s (Mike’s sister) headband purchase.

By all accounts, Verity is a very “healthy” baby. I put healthy in quotes because, at this point, she’s looking quite chunky. In fact, she’s managed to make her way to the 99-percentile for height, weight, and head size. Yep, we breed them big in the Midwest.

Our pediatrician continues to be impressed by how well Verity is doing. She’s meeting her developmental milestones, even having had sternal precautions in place six weeks post-surgery. [You can’t lay babies on their tummies after open-heart surgery, obviously, so most hospitals recommend that parents wait six weeks before doing anything that puts strain on the sternum.] Of course, just because Verity can be on her stomach doesn’t mean that she likes it – tummy time continues to invoke tears from our darling babe after only a few minutes.

Sternal precautions are done! Grandpa tries midair tummy time.

Sternal precautions are done! Grandpa tries midair tummy time.

Baby is also quickly catching up on her immunizations. Our cardiologist recommended that Verity wait to receive her shots, and at eight weeks, she just started playing catch up. We should be back on track by next week after she receives her TDAP vaccination. As a public service announcement, I’d like to remind adults that you need a TDAP booster every 5 years or so. This one is definitely not one to put off – whooping cough (pertussis, the P in TDAP) is making its way back, and it’s highly contagious!

Of course, everything isn’t perfect with our beast of a daughter. She still has issues during her feedings, although she has improved significantly since being discharged from the hospital. To quickly recap, after and as a result of the surgery and procedures performed on her, Verity choked when breast feeding. She was found to also silently aspirate on formula, so we were told to thicken every 2 ounces of formula she eats with 20 mL of rice cereal. (I realize it’s not very scientific to use two different units, but that’s what the hospital did, so deal with it!)

Eating ain't easy for Verity, but she still loves it. Here she is what we call

Eating ain’t easy for Verity, but she still loves it. Here she is what we call “milk drunk.”

As Verity has grown, so has her ability to tolerate thinner and thinner liquids. At this point, she is able to tolerate 2 ounces of formula with only 7 mL of rice cereal! We’ve also tried a few times to see how she fares with breast milk, however, we’ve had mixed success. Getting Verity to latch onto my breast at this point is a huge struggle for both of us; Verity gets very agitated almost immediately after being put to the breast, and I get a little heartbroken having a baby screaming at my breast. In short – no one enjoys the experience. As such, I have finally let go of actually feeding Verity from the breast, though I haven’t stopped pumping breast milk yet. I have hopes that she may be able to tolerate breast milk in the near future, and if I stop pumping now, I’ll lose my milk supply.

Fun fact: Pumping daily for three months and putting it in the freezer leaves one with a lot of milk. I ended up having a freezer that was LITERALLY packed with breast milk. Since I do like ice cream every now and again, I wanted to clear out my freezer. I found a reputable non-profit and was approved as a milk donor in late March. Since then, I have already donated over eight gallons (I’m bolding that, because it’s both awesome and strange), and there’s at least another gallon in my freezer that I’ve collected since.

Verity is lounging after breakfast.

Verity is lounging after another formula breakfast.

However, when we thicken the breast milk with rice, she sometimes does OK. She still coughs about 50% of the time when she starts to feed, but she’s able to control the food a little after she starts. That being said, once we started to feed her thickened breast milk with every feed, we saw an increase in the amount of spit-up. We also saw the consistency of her spit up change from think and runny to thick and mucousy. Dr. Google told us that this is likely a sign of reflux (i.e., the breast milk isn’t staying in her tummy). After running our own little experiment (we cut out feeds with thickened breast milk), we concluded that Dr. Google was probably right. We’re sticking to thickened formula for now, but like I said, I’m still pumping in hopes of feeding Verity a little breast milk in the future.

I think feeding will remain an issue for some time, since we still are slowly weaning her off the rice cereal. However, with feeding as the only exception, Verity really is like every other 11 week old. Except she’s got a nice scar and is maybe a little fatter, longer, and just a smidge cuter. We have follow-up appointments scheduled with physical therapy, speech, and cardiology, but I think Mike and I both expect to hear nothing but good news. Here’s hoping we’re right.

Thanks for reading!

Dana and Mike

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