Test Results

23 Weeks

We received the Harmony test results back [my bloodwork] and confirmed what everyone thought; our daughter is high risk [99%] for Trisomy 21 / Down Syndrome. It’s a little bizarre receiving some confirmation and reality settles a little deeper. 

I don’t know how to respond when people say “I’m sorry,” - I’m not sorry. You shouldn’t be either. She will be a happy baby and the doctors will fix her heart and stomach. She’ll laugh and read books with Mommy and Daddy and play with her big sister Nora. 

So far the most help has been reading other parent’s accounts of raising a child with Down Syndrome. My favorite is titled, “Welcome to Holland:”

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland.”

“Holland??!!” you say.  “What do you mean Holland??  I signed up for Italy!!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan.  They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It’s just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would have never met.

It’s just a different place.  It’s slower-paced than Italy, less flashy than Italy.  But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills…Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, “Yes, that’s where I was supposed to go.  That’s what I had planned.”

And the pain of that will never, ever, ever go away…because the loss of that dream is a very, very significant loss.

But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…..about Holland.”

Memorial Weekend - Sunday

Saturday was spent running errands and prepping for today: painting our chocolate brown kitchen white. The trickiest of all paint challenges. I do like our kitchen, but have visions of how I’m going to update it a bit and this is the first step. The brown is so dark and I just wanted more light. Between the floors and the cabinets, I just decided straight white would achieve my goal.

My paint priorities were Low Odor and NO VOC. Paint + Primer. Valspar fit the bill. Mom & Dad graciously came down; Mom watched Nora and Dad volunteered as a 3rd set of hands which made this entire day sail pretty smoothly. 

Reading with Grammy

Dad the Paint Rockstar

Ailo lends a hand

Dad and Mom primed and painted their new home - Dad guessed around 50 gallons they went through - ! So I knew we were in good hands. I learned a lot of tips and tricks today for future paint jobs. 

I was floored that we made it with 2 gallons! Dad is generous in his rolling, so we only needed 2 coats of rolled paint and 3 coats of trim paint. Wow! 

I’m extremely happy with the results and plan on getting some colorful accents - mainly dish towels. 

Today’s accomplishment made me ready to attack the upstairs bathrooms - smaller feats!

Eat-in BEFORE

Eat-in AFTER

Counter side BEFORE

Eat-in AFTER

They See Me Rollin...

2 Years, 5 Months

Last weekend Nora ate inside her first Skyline - I’ve learned finally not to order her own kids’ meal - she won’t eat it. Skyline was the same - she basically only ate the crackers and cheese - go figure. I can’t remember the last time I ate in a Skyline! Beans and rice - win!

Nora has been riding her trike around the house for 6 months now. Tim suggested we get Nora a bike helmet and bust out into our cul-de-sac. Nora loves it! I’m amazed they make bike helmets that small. 

Nesting

Been focusing on some house stuff which is a nice distraction with all the recent baby intensity; we still had about 1/3 of our huge mulch pile left. Tim and I took 1.5 hours two weeks ago to try and put another dent in it - we did a good job! We tackled the other side of the house and it’s crazy better - it’s been crying for mulch probably before we moved in. 

We’re not sure mulch is a sustainable solution for these beds… we may be thinking ivy for the larger front bed and keep this side bed mulch. It’s just too much $$ and labor every other year. 

Second, my studio is moving offices from Northern KY to Over-the-Rhine. Our directors didn’t want to take all the furniture, so we raffled off a lot of great pieces. I walked away with a tall IKEA shelf and a set of patio furniture; 6 chairs and 2 small tables! It’s not what I would choose, but for free - it totally works! Dottie had given us a small flower which I divided so there’s some nice color now, too. Feeling good on the deck! 

One Step At A Time

22 Weeks

Hello Friends & Family!

It’s been almost a week since our intense news about Baby Girl. Last week was heavy and I think my tears were all finally shed by last Saturday - woo! We still have days when we feel down, but that’s the beauty of a good marriage and support system - you always have someone to fall back on. 

We want to thank all the family and friends who have reached out to us to lend a hand or just words of encouragement. It really helps us to hear from you!

This week has been quiet with no appointments - except for Tim’s dental - so that’s been nice for once. We will not get the Harmony test results back until at least the end of next week. It will feel like an eternity to get confirmation of what everyone already believes is true. 

My fetal MRI and Baby’s echocardiogram has yet to be scheduled. It will probably be the week of June 9th. At this day-long meeting there will be multiple specialists there to talk to who will perform Baby Girl’s surgeries as well as my own OB whom I love. Again, we are so grateful to be in the perfect city for children’s medicine. We’ve also learned the DS community here is very strong - once we get an official diagnosis, I know we’ll immerse ourselves further and engage with a new community. 

We have started looking ahead and are excited to meet our little girl in September!

If anyone has questions for us, I’m happy to answer as best I can - we’re still learning ourselves. 

Thanks again for your support/prayers/positive mojo - 

The Krons

The Fog is Clearing...

22 Weeks

Friday we met with a genetic counselor who talked to us about our ultrasound findings and answered our questions as best she could. She was very knowledgeable with fetal biology and chromosome makeup to teach us about the different possibilities with chromosome abnormalities. She also told us about a 4th marker that we were not informed about: Baby Girl’s femur bones are slightly shorter than they should be. 

All of these four markers are pointing towards Down Syndrome. I've had so many “what ifs” this week that honestly, if I can't have a 100% healthy baby, Downs would be my next choice. All her symptoms do not point towards the other 3 possibilities; Trisomy 18, Trisomy 13 or Monosomy X. 

It was a lot to digest in less than 2 hours, we still had some tears because that “20%” chance seems ridiculous to us now. The counselor said 20% was a conservative guess. They took my blood Friday and will test the chromosomes. We’re fairly confident it will come back with 99% Trisomy 21 [Downs Syndrome]. The results will come back in 1 1/2 - 2 weeks.

Tim and I have talked a lot and we’re okay. I think the hardest part will be having her stomach and heart surgeries after birth to correct her defects. If we can get past that, we feel things will be fine. She will have a normal life, we just want to make sure she has the best quality of life she can. Tim and I feel our lives shouldn’t shift too drastically. There’s no reason we can’t have fun with friends, go out now and then and participate in what we normally do. We don’t want people feeling sorry for us and expect to keep up with friends and family as we do now. 

I still have a range of emotions, but sadness and anger are not part of it. Imagining children in special needs homes, or seeing children who can’t walk or feed themselves due to chromosome abnormalities - THAT would be heartbreaking. Possible Down Syndrome? We’ll figure it out. 

Again, this isn’t certain, but all signs are pointing towards it. I think once the test results come back, we can all focus and prepare for Baby Girl in September!

Thanks again for support and love.

The Krons

Baby Girl’s Status

21 Weeks

For those of you who have been wondering - our Monday Level 2 ultrasound did not go as well as we were hoping.

1. Her brain ventricles are measuring mildly large; measuring a 13 instead of a 10
2. Her heart valves are moving in unison instead of independently
3. Her stomach to duodenum transition looks to be partially obstructed and her stomach narrows towards the bottom instead of being fully round

Due to these three items, the doctor said our Baby Girl has a 20% chance for a chromosome abnormality. She continued to talk about next steps and such, but truthfully all I could do was just stare as my mind went blank. We left the appointment and as any mother would, I lost it. My daughter has a 20% chance of not being “normal.”

There’s a chance she could still develop well and some of these things go away. There’s a 5% chance they could get worse. I think having zero answers at this point is very hard. Everything is vague and we can’t prepare in anyway. We just have to go step by step and as we learn what is going on, educate ourselves. 

The past few days have been an emotional challenge; anger, sadness, disappointment, disbelief, etc. I’m a control freak and I like to have control of my environment and my life and I have zero control over this situation. The healthiest lifestyle, following all the rules and we’re still dealt this card. Then I see my neighbor who is 8 months pregnant smoking a cigarette and my fury boils over. Not. Fair. 

We’ve been in contact with some professionals and have a genetic blood test and genetic counseling set up for tomorrow at 3pm. This bloodwork is 99% accurate to detect any chromosome abnormalities. After we get those results, they will go to a team of doctors who will meet with us after I have a prenatal MRI/fetal echocardiogram. I will continue with Level 2 ultrasounds and Baby Girl will be monitored the duration of the pregnancy. 

Everyone tells us we can handle this, but there are moments I don’t know how. There are times when I’m calm and ready to meet her, there are times I freak out and mourn the loss of the life we know. 

And all of this is for the 20%! The way it’s being handle is as if she were 100% diagnosed. I suppose it’s better to focus on the “worst” and prepare us - which I suppose I prefer. Hope for the best, prepare for the worst. 

I’m still scared but I’m grateful we live in a city with great children’s medicine, we have the best families and incredibly supportive friends. Writing here may help get out the feelings, too.

Please keep us in your thoughts - 
C

DIY - Hall Nook

Once again, our home is nearly 35 years old. The hall closet doors fell off the hinges - again - about 2 months or so ago. This prompted me to proceed with my idea for a hall nook. I’d seen some ideas on Pinterest [of course] and while we are NOT handy enough to make shelves and built-in benches, we could get close enough. 

Tim filled and sanded holes, I painted [no VOC paint of course], Tim put the shelf back in and we purchased pieces to organize. The bench has come just in the knick of time - I can’t keep sitting on the floor to put my shoes on! Not to mention it will be a great place to rest a pumpkin seat while coming in from the garage. 

Last night Tim and I laid down peel-n-stick flooring. The cheapest and least labor, plus it will be buried under baskets and the bench so no one will see it. 

I’d still like to get some wall baskets for the sides, but still extremely happy with how clean and tidy it is!

BEFORE: Putty colored walls, carpet on the floor

AFTER: White walls, clean & tidy

The Big Chop

2 Years

Nora’s hair is… tricky. It’s fine like mine with wave and slight curls from Tim. She does not tolerate and hair accessories or ponytails so I cannot pull it back. She has an “upper layer” and a “lower layer” … yeah, kind of a mullet. 

So after a few days of waffling, I made the chop - ! She had no idea I did it. Still doesn’t know - ha! 

It’s cute, I do like it. 

Nora will have a Little...

20 Weeks

SISTER! 

Wheeee! We are extremely excited and Tim and I both secretly were hoping for a girl - neither of us really said so either. We can now re-use all the girl clothes in the basement. Not to mention we have “experience” with a girl : )

She was moving a LOT. The technician asked if I’d had caffeine this morning - whoops! Baby Girl moved so much that the technician couldn’t get a good read on her heart, specifically a valve/artery for exiting blood (Sorry, I was really trying to listen well, it was medical words I’m not used to) . 

The second item notated was that one of her brain ventricles was measuring a little on the higher end of normal. Based on these two items, I was given an order for a Level 2 ultrasound to get a better read on her head and heart. Frankly, I’m really anxious about it. I know everyone is going to say “It’ll be just fine,” but no one is going to ease my mind until after Monday afternoon’s appointment. 

I briefly went on some baby message boards and found this isn’t uncommon and tends to work out just fine. This is still my baby though, and I’m going to worry - it’s what we do. 

All the rest of her measurements were right on track.

Positive thoughts, prayers or whatever your form of good vibes towards us are welcome : )

She already looks like Nora!

Frankly, this is creepy.

Hello arm and hand!

Runnin’ legs!

Big bumps, Lil bumps

When I went public on the blog, an acquaintance of mine revealed she was also pregnant, due a week after me (Hi, E!). We both love running, so its been fun shooting notes back and forth to see how each other is doing and how our running is going. 

I’m [probably annoyingly] fascinated at the difference in our bellies. Mine is a second baby, hers a first. I’m amazed at how different womens’ bodies act and grow with pregnancies. 

C at 20 Weeks - whoa baby!

E at 19 Weeks

This is also Flying Pig Marathon Weekend in Cincinnati - I miss the festivities and the emotions of the weekend. I feel  like I’m missing out on a lot. I thought about running the 10K, but after today’s strain, I knew I made the right call not signing up for anything “just in case.” 

I hope I’m able to participate next May - Baby #2 should be about 8 months old, so hopefully we’ll have an established routine and I’ll make my way back into training mode. I miss the exhausted feeling of accomplishment.

I have one old work friend who is around 24 weeks running the Half and another friend who is about 10 weeks running the full. Proud of all my running friends, preggo or not! See you next year at the races!

Halfsies

20 Weeks

Halfway baked, ya’ll! This pregnancy is going fast. I think. I still want a beer. I had another bout of indigestion this week. I’m convinced decaf coffee is to blame. That stuff isn’t worth squat, man. 

Nora keeps getting funnier - Friday morning Nora asked us, “Do you want to see my salsa beat?” I did a double-take. “Did you just ask if we want to see your salsa beat?” 
“Uh-huh.”
“Okay!”
Then she tapped the top of her head with her hands and Tim and I laughed incredibly hard. 

The goofball did not fall asleep last night until nearly 10pm - what the hell. Of course, she still got up at 6:12am. I left Tim to sleep in on his birthday. 

I went for a run around 11am. It was beautiful outside, I was feeling good… until mile 2.5 when I started feeling a strain in my lower abdomen. NOooooo! 20 Week belly making itself known. I walked the rest of the way home, bummed, but knowing you do not work through the pain while pregnant and running. I’m not sure whether this is the beginning of the end of running for now, or it was just a fluke day. 

Nora took a good long nap and afterwards we headed to downtown Loveland to eat a casual birthday dinner at Julien’s next to the bike path. Afterward we played on the playground a bit. Got home and gave Tim his birthday gift - a corded power drill, growler from 50 West and cupcakes from the Sweeterie in Mariemont. 

Hopefully Tim had a good day. Tomorrow brings the nephews to help Tim erase the rest of the mulch pile!