Milk Talk

16 Weeks

So we just thawed and used my last frozen bottle of milk : (  I’m a little sad, but glad Hannah has made it almost four months on exclusive breastmilk. I will continue to pump so Hannah gets the good stuff until she gets through heart surgery; if we get through February [post surgery] that will be 6 months - my goal! I’m still amazed at myself for hooking up to a machine every 3 hours for the past 16 weeks - ! 

Here’s a literal snapshot of our weeknights; every night does not include a glass of wine : ) 

Pumping in Public

15 Weeks

We went to the UC basketball game today and though I pumped before we left, I did not think I could last nearly five hours until the next pump. I brought that machine with me. 

I was ready for the worst; a public restroom. I went there first and saw the only outlet was right by the entrance. Crap. I remembered seeing the first aid station and went there and asked if a pumping mother was allowed in - the men there pointed me to a small bathroom in the first aid room with a door that locked - I’ll take it! 

That’s dedication, folks. 

Walk the Walk

15 Weeks

... or should I say Run the Run? 

I went to the Mini Heart Marathon’s website this week because I think I’d like to run this race; about 9 miles. I’m convinced I’m not going to be able to manage training for the Pig Half which I’m okay with. After being back to work for over two weeks, I’m not finding any time to squeeze runs in yet. I can easily do 6 miles on the weekends, so I feel like I can push to 9 miles for a race in March. 

Anyway, on the Mini Heart’s website I was looking on the right-hand side at the top fundraisers and #2 was Thomas Kimball - Hannah’s cardiologist! I had even better feelings about him knowing he’s an avid runner who is serious about his own heart health. 

Yay for running and your heart health!

Cardiologist Kimball

Children’s Hospital; Pre-Op Day

15 Weeks

My anticipation of this pre-op day was way worse than the day itself; it always works that way, doesn’t it?

On deck for pre-op procedures:
1. 7:30am sedated echocardiogram
2. EKG immediately following
4. consult with our Cardiologist
5. bloodwork for thyroid
6. chest X-ray

My anxiety was basically around keeping Hannah comfortable because these were our instructions for a 7:30am sedated echo: No fortified [formula] breastmilk past 1:30am, no plain breastmilk past 3:30am, no clear liquids past 5:30am. Huh? I then learned she can have Pedialyte as her last bottle before we left. 

Hannah woke up for an extra feeding last night which didn’t help our sleepy 5am wake up this morning. Zzzz. Nana graciously agreed to come over at 6am to be here for when Nora woke up and spend the day with her while we were gone. 

Hannah’s anesthesia was in the form of a nasal spray - she did well with it and was asleep in 30 minutes. I think the sedation was my biggest fear; seeing your child out cold for a medical procedure - but really, it just made her go to sleep so she was super peaceful. 

The room nearly put us to sleep; sealife projected on the ceiling, white noise and this crazy colored light contraption that we assume was purely to put kids at ease while having echocardiograms. Trippy!

Hey kids, just chill out maannnn.

Her echo was 30 minutes so I was able to slip out and pump. The nurse to perform the EKG was in and out within 10 minutes - easy peasy because Hannah was still out of it. 

We met with Dr. Kimball, our cardiologist. Hannah’s weight gain isn’t as much in grams per day, but she’s still gaining in the right amount, so he’s very happy. Hannah’s heart defect is very straightforward which is good; textbook procedure for the surgeon. Since Hannah is doing so well, Kimball wants to keep her gaining and push surgery to late January/early February. I kind of wish it were earlier, but getting her larger makes total sense. 

Cardiology will present her case to surgery later in January and we’ll be able to consult/meet the surgeon which is good - I want to see the face of the person who will be working on my daughter’s delicate organ. 

Next we moved to having blood drawn. Worst part of the day. Did you know when blood is drawn from an infant, they use a tiny tourniquet and check for tiny veins in her inner elbow? Yeah, it was awful. I’ve never seen Hannah scream that much in all her 15 weeks. Poor thing passed out after that right quick. 

Finally, we went to Radiology for her chest X-ray. Did you know it’s a walk-in situation, you don’t make appointments? Thankfully it was rather quick, Hannah was a bit fussy, but quick.

Before we left we found the lactation room so I could pump again and Hannah got some breastmilk. We’d arrived at 7am this morning and were out by 12pm. Not bad considering how much we achieved today. 

Tim and I enjoyed a leisurely lunch at Dilly Deli in Mariemont followed by another leisurely cruise through Target for Nora’s Xmas gift. Mind you, Hannah is STILL sleeping due to her crazy morning. 

I went to buy Tim and I a Starbucks latte treat which turned out to be free because the person in front of me paid for it - ! Fun! I love the pay it forward game! I’ll have to be sure I play sometime soon...

We arrived home at 2:30pm and Nora oozed love all over us. Tim and I were able to each run a short 3 miles and we had a great evening as a family. 

So my anxious preparation turned out to be a smooth and fairly enjoyable day!

Sleepy, sleepy Hannah - the public loves a cute sleepy baby and today proved that : )

Expect. Don’t Accept.

13 Weeks

My Dad forwarded me this amazing keynote address Paul Daugherty gave back in 2009 at the Remarkable Families Symposium. It’s long, but man, it feels like my new rally cry for having a child with special needs. I want to fold this up and keep it in my wallet the next 20+ years. It’s long, but powerful:

Expect. Don’t Accept.

Discovering our Community

14 Weeks

I just found out well-known Cincinnati sports writer, Paul Daugherty, has a grown daughter [I think in her late 20s] with Down syndrome. He’ll be releasing a book this March, Jillian the Magnificent, about life with his daughter. If you’re so inclined, partial proceeds go to the Down syndrome Assoc of Greater Cincinnati. 

I’ve been uncovering articles he’ll write here and there about his daughter - she seems to be an amazing woman and was engaged a year ago to her boyfriend of 9 years. She was also a manager of the NKU men’s basketball team. 

Jillian Gets Married

Jillian’s Job

I can only hope we nurture and help Hannah get to a happy and comfortable life way down the road. My wish is that she gains some form of independence, too - who knows how much further the Ds community will evolve  at that point... hopefully leaps and bounds. 

I keep a quote in my head, “If we raise our expectations, our kids will rise to meet them.”

Three Days In...

13 Weeks

Three days back to work - it’s similar to summer break, really. Just enough time to miss people, but not enough time to forget how to run Illustrator and Photoshop : ) 

Getting four people out the door in the morning is... manageable! I’m super organized and a planner, so we spend our weeknights prepping; once the girls are down around 8pm, we wash bottles, wash dishes, make bottles, wash more bottles, pack lunches, pump, then before I know it, it’s 9:30pm. Then I basically go to bed. So much for weeknight leisure... temporary, right? 

But all that evening prep makes the morning smooth; I’m only pumping once in the night now which helps me feel more rested. I wake at 5:45am to pump, shower at 6am, by 6:30 I’m done getting ready and wake Hannah to eat. During this time, Nora may be up and can watch a little TV while we get ready. Tim is out around 7am and I’m getting the car packed up and girls in by 7:15am and out the door to the sitter - on my way to work by 7:30am! 

I’ve missed wearing heels. Silly huh? I’m pretty excited that I’m back in my pre-pregnancy pants as well. I love my coworkers and joking around with them. I feel like my world is back in balance! 

Family <3

Reflux Sux

12 Weeks

We had a really bad spit up episode this morning that shook me. Hannah was upright after her bottle for 30 minutes and I laid her down to kick around and wiggle. After a bit, I picked her up for being a little fussy and she started gagging/heaving and spitting up yellow bile, arching her back and crying inconsolably. It. Was. Awful. 

This is the worst I have seen it, with a spit up maybe once a day in the past week or two. 

The signs today were a red flag for reflux. SO many kids with Down syndrome have reflux due to their floppy esophagus. Eventually they grow out of it once their esophagus’ grow. 

I really don’t want to put her on prescription meds, but seeing her in that pain was unbearable. I’m researching some homeopathic options and may talk to the medical professionals if it’s safe to go that route instead of prescription meds : (

Blargh!

How Am I Doing?

12 Weeks

An acquaintance with another bitty baby asked me how I was doing since I mostly talk about the girls here - oh yeah - ME! 

I’m… good. Better than okay but not awesome. It’s a day-to-day thing. Mondays seem to be hard because Tim goes back to work. I tend to have a lot of anxiety nowadays due to Hannah not eating her bottles anymore and never seeing the end in sight with the G-tube. I’ve also become more edgy now that Hannah has started to have gagging spit up this week. We increased the amount of milk she gets and I guess her stomach hasn’t stretched to accommodate so she has to be upright for like 30 minutes after eating. I tried doing tummy time with her this AM after 20 minutes and she gagged and spit up. It was awful. 

I’m also anxious for my sitter - I hope I’m not putting too much on her with Hannah and these tube feedings. She’s calm and patient but she’s also looking after at least 3 other toddlers; her own two kids and Nora. I have total faith in her but don’t want to add pressure to her. 

Oh, and keep Hannah healthy for heart surgery in January. At a sitter’s. During cold & flu season. 

So I think come February after we’ve made it through this next hurdle, I’ll need some kind of celebration. It will definitely involve a bottle of champagne. 

Mini Milestones

12 Weeks

Literally at the 12 week mark, Hannah has slept through the night two nights in a row now. Good for Hannah, great for Tim, but I’m still the milk producer : P However, since I’d read that your supply is established at 12 weeks, I decided to drop a pump last night and only wake once. I can happily say it worked out. 

Pumped at 9:30pm, 1:30am and 5:45am. The amount of milk was the same as if I’d pumped twice in the night. So happy to get that extra bit of extended sleep, now if I could just not toss and turn between 4-6am! 

I also checked my work email yesterday and have meetings be scheduled for next week already. I go back next week. Holy time warp.

This is going to be me at work - “Yes, let’s leverage those assets.”
:: eyeroll ::

Another Busy Hannah Week:

11 Weeks

We had 3 appointments this week - 

Cardiology: Hannah now weighs 8 lbs 12 oz - go girl! The cardiologist was super happy with her weight gain. They want babies to gain 18-20 grams per day going into heart surgery and Hannah has been gaining 30 grams per day. She’s also met the “safe zone” in weight for open heart surgery, so that’s good too. 

So despite our regression in oral feedings, weight gain is more important right now. 

Mid December we go in for our pre-op sedated [yuck] echo, thyroid bloodwork and a chest X-ray. I should have asked, but if we’re getting a pre-op echo, it leads me to believe surgery would be in January - ? Don’t quote me on that. 

Speech Therapy: Hannah hasn’t finished a whole bottle by mouth since early October. It’s frustrating, but common for heart babies. Once we introduced more formula into my milk, she started having less poos and having a harder time finishing her bottles. Our Speech Therapist said this is very common for babies going into heart surgery to regress with oral feedings. We have found however, that Hannah eats more by mouth when she’s half asleep; not thinking about it! Interesting. 

Help Me Grow: Just came out to see how Hannah is doing today… I basically fill them in on how she’s doing… they still aren’t super involved yet because motor skills won’t come into play until closer to 6 months.  

Keep our Warrior Hannah in your thoughts as we keep on the upward path!

The Miracle Cure

10 Weeks

So Hannah had a clogged tearduct for the first weeks of her life. I’d taken a warm washcloth to it which is what the medical professionals had suggested. However, my friend Emma [who is all-things natural] said to try breast milk. Ta-daahhhh! No more goopy eye. 

I’d also used it on Nora’s baby acne and cradle cap which both worked well too. 

So if you know anyone whose baby needs a beauty treatment - suggest it!

Photo taken by Nora!

Hannah’s 2014 Group

10 Weeks

As we have slowly introduced ourselves into the Ds community in Cincinnati, we were added to the 2014 group - babies who were all born this year. It’s a nice small group of parents who get together now and then to form camaraderie around our children. While we love our family and friends, it’s even better to talk to other parents who are starting along the same path as us. 

We had a group social yesterday afternoon. Unfortunately, Nora has had a nasty cough so Tim stayed home with her while I took Hannah. The new Ds headquarters for Cincy are in Norwood now. There were maybe 15 people there - not everyone could make it, but such a small number makes it easier to walk in not knowing anyone, only their faces over Facebook. 

It was fun meeting the other parents - all super cool and was nice to talk to people who understand. We all talked about our diagnosis, what therapies our kids are having, any of their medical hurdles. Everyone “gets” it. 

I even met an adorable 15-mo old who is now crawling which was good to see what a “delay” is really like. She’ll walk eventually : )

It was a nice meet-up and cool to see who Hannah will grow up with in our community!

Hannah - 2 Months!

9 Weeks

Hannah is 2 months old! We had her 2-month well baby check up on Tuesday. I was pleasantly shocked that she’s 8 lbs and 21" long! That’s two inches longer than her 1 month - go girl!

Babies and children with Down syndrome have their own growth charts, so among her peers, Hannah is about 25% on weight, 50% on height and 35% on her little peanut head.

She got her 4 immunizations and one oral. It’s brutal - I remember with Nora, she went silent from screaming and I cried too. This time, Hannah cried for a short time and I knew what I was facing, so no tears here!

We’ve been doing tummy time a bit modified - on a travel neck pillow - to elevate her G-tube away from the floor and keep pressure off it. Pretty cute faces!

Then today was a small milestone - we moved from the G-tube to the Mic Key button. It’s a lower profile and less of a nuisance in general. The surgeon doesn’t want children under 2 months having them [can’t remember his reason]. 

Our surgeon actually did the swap IN the exam room - it was a little crazy - he pulled out the G-tube and it gushed a bit with stomach contents - *yak* Hannah wasn’t a happy camper and when all was said and done she zonked out. 

Also today, she weighed 8 lbs 4 oz!

Then this afternoon, Help Me Grow stopped by along with a physical therapist. She taught me some different tummy time positions and some side-lying positions. Essentially, Hannah’s limbs want to frog out and we want them midline. We also of course want her neck strength to increase. 

They were already impressed with Hannah’s head strength, movements and her eye contact. Go Hannah! 

It’s been a busy week for our baby girl - she’s making strides : ) 

This is not Hannah, but this is what her button looks like

Halloween 2014

The Kron girls enjoyed their Halloween - well, Nora did. Nora had picked out her costume a while back from our favorite childrens’ second-hand store in West Chester, Little Sprouts. She wanted to be Minnie Mouse and the dress was $10. Nana provided the ears! 

Nora was geezed to go trick-or-treating. We tried to bundle up as best we could in the low 50-degrees. We hit the street right at 6pm. Nora talked the entire time, just bubbling with excitement. She said “Trick or Treat!” to everyone and thanked everyone for the candy. My big girl asked to go home after 5 houses - perfect! 

We may have a bit of a candy monster for a few days; but to give her that excitement and enjoy that evening with my little girl who is a super challenge now days - worth it. 

Lil Janitor

12 Weeks


Jangle those keys, Nora!

Growin’ Boot!

11 Weeks


The peanut is breakin’ out of her shell! Those 0-3 month onesies are no more - I put on a onesie that has been hanging in her closet - size 3-6 months - and it fits like a glove - whoa! Better start shifting her wardrobe!


I feel like once Nora hit 8 weeks it was easier to dress her in actual clothes - before that, onesies just seemed to be more “baby” like. 

Her and I hit Buy Buy Baby yesterday to get some larger swaddlers too - that tall drink of milk is growing out of those too! 

Sportin’ booties from Spain - thanks Cousin Brian & Fayza!

Movin’ & Shakin’

11 Weeks


Tim put Nora to bed facing North-South. She woke up facing East-West - ! And she is swaddled twice like a burrito. That kid is wiggling in circles - wowsers!


[She has also had three nights in a row of sleeping 9+ hours straight - woot!]

Sleep Training

10 Weeks


So in one week we plan on sleep-training Nora. The Ped said we could have started a month ago - my instincts said “too young!”


A few of my friends have found success in the “interval” training - where you go in and console them every 3, 5, 7, etc minutes. So that makes me hopeful. 


So if anyone else has done any type of sleep training that worked for their kids, feel free to send me a message!

Happy Valentine’s Day

10 Weeks


Who is that baby in the nursery? She’s slept over an hour so she can’t be Nora : )


Nora has slept through the night three times now! And thankfully she did this past Saturday night when Mommy wasn’t feeling very good! 


And since she’s been sleeping over an hour just now, I know she can put herself back to sleep because I’ve heard her wake twice now, but was back asleep when I went in - so that gives me some hope for sleep training which I want to attempt in about two weeks here...


Tim was home with a cold two days last week - it was nice having him here even though he was in bed - I wouldn’t expect him to be so hands-on since he wasn’t feeling well. So he was only at work one day then back home for the weekend - we were spoiled!

However I got what he had and Mommies don’t get a day off! I’m glad I was feeling gross on the weekend, that way Tim could lend a hand.

Hope everyone finds a little sunshine on this dreary Valentine’s Day!