Christmas: Part 1

16 Weeks

Christmas was decent this year... I think with the warmer dreary weather and still not getting great sleep/juggling an infant, it didn’t quite feel like Christmas to me.  Plus Tim had to work the day after - boooo.

Nora was way more into Christmas this year. She made sure the fireplace curtain was open for him to get in. She also left Santa a snack of half a pear and a beer. Ha!

It just so happened that my Mom gave me my old American Doll [yes, they were around when I was younger] and Nora asked for a doll she could dress up. Bingo! Nora now has a “vintage” American Doll courtesy of Santa. She also got a second outfit for the doll from Target [because they have a more affordable version there] as well as a new pack of Play Doh.

She did indeed sleep in the ballet leotard and skirt.

She was up about 6:30 on Christmas Day which wasn’t as bad as it could have. I went on a 4-mile run - because I’ll take whatever running time I can get nowadays. We went to spend the afternoon at Nana & Papa’s. Nora was a huge ball of energy. She enjoys attention and performing... everything I never thought my daughter would be - ! I’m thankful her older cousins are so great with her.

And guess who showed up at Nana’s? Santa! He brought books for the grandkids. I was rather shocked, Nora rushed to the far end of the kitchen and clung to Aunt Amy because she did not want to see Santa. Last year she was ushering Santa in and out of the house!

Last Year

Aunt Amy & Hannah!

We fed Hannah at 7pm and I was just exhausted. All three girls fell asleep in the car ride home.

I was kind of sad going into today since Tim was going to work. However, the day turned out rather good. Nora was very good for me and we spent a little time at the library.

Computer games at the library.

This evening was a bit of a reunion with some past Landor friends; only two are still with Landor, about half of us are in town, one couple is in Chicago and another in London. We met at family-friendly Pizzelli in Mariemont. Was fun to catch up as best we could, but with a 3 year old and an infant, it’s a little tricky to sit down and focus : P  Was still fun nonetheless. 

News in the Ds Community; Part 2

A handful of you may have seen a Target ad that went viral a few weeks ago; a little girl [who happens to have Ds] standing next to a toy. Many people applauded Target for being inclusive with their models. I totally agree - and hope that someday this isn’t considered “news” - it should just be standard, right?  

This little girl’s Mom and some other parents started their own campaign with a few taglines: #IMREADY #changingthefaceofbeauty and #15in2015

The premises is to get 15 retailers in 2015 to be inclusive with their models; include those with disabilities, not just Ds. Target and Nordstrom are already ahead in this thinking. 

I mean, if Hannah is this cute now, I’m certain she could be in a Gap Kids ad, right? ; )

Changing the Face of Beauty

Go Izzy!

I’m ready!

News in the Ds Community: Part 1

16 Weeks

As Tim and I researched the lifestyle of our new daughter, we learned that we essentially had to keep her “poor” - if she had any more than $2000 to her name, Hannah would not qualify for any medical or supplemental coverage because of her Ds diagnosis. It made us very sad and discouraged. 

However, within weeks we learned parents have been advocating for the past eight years and just this month the ABLE act went through the Senate and Congress, passing easily, and was just signed by Obama this past week as a law. This act allows us to set aside a 529-type account for Hannah so she can have a savings despite her diagnosis. And frankly, even though Hannah is barely 4 months old, I don’t see her as disabled in the least. She is clearly abled even if those milestones are delayed. 

It’s also great to see both sides of Congress and the House agreeing on something : ) 

The ABLE Act

My sweet girl working on her “exercises” with Grammy!

Mommy’s Office Party

Last Friday I had my holiday office party which was dinner at Sotto; a new-ish local Italian place that is amazing a on the nicer side. 

Nora spent the day/night with Nana for her birthday movie [Penguins of Madagascar] and lunch. Grammy Batty came down to spend the day and evening with Hannah. 

Going straight from work to happy hour with Tim was... shocking to our systems. While I know it’s very healthy to get out and away from your children,  I always have a heavy sense of obligation to my children. Even going to run for 6+ miles makes me feel guilty. I need to brush that off, huh? 

Anyway, Tim and I went to Nicholson’s for happy hour. The time to just sit and talk was fantastic. Being with my new coworkers was so much fun. I truly enjoy all their company. The Prosecco flowed ALL night, the food and laughs were abundant. Nearly half of us half young children so we were all ready to party a bit. One of my friends even brought her pump TO the restaurant! Whereas I decided to pump IN the car with my car adapter on the way home : ) I’m pretty sure I dumped that milk... 

Also - I bought my first dress in like... 7 years?? For real. I went “all out” and bought a sequined green dress from H&M even though they are in Kenwood. I have zero time to do that. I also never buy clothes online because I have to try it on. IT FIT. And I felt amazing in it! #motheroftwo  whaaaaaaaaat? 

It was a great night and thanks to our Moms once again - I am so grateful our Moms are close and eager to help : ) We love you! 

Check out that plunging back!

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

Nora Finally Draws

3 Years

The problem with having two creative parents is that they will always draw for you. Nora prefers to see our drawings rather than do them herself. 

Finally after getting a lovely birthday easel from Nana & Papa, she has started to draw on her own. This past week we finally got a peek at her drawing of us. I love it:

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.”

Crayon + Wall

3 Years

Nora went to bed well Monday night.

However it took her a LONG time to actually go to sleep. Lots of talking, playing, and we thought we heard some scratching for a while...

Around 9:30 Nora came out of her room and said sadly, “Daddy look what I did!” I heard Tim say “NORA NOELLE!” I raced upstairs and saw the entire wall above her bed scribbled with brown washable [thank God] crayon. I covered my mouth for a moment, Tim had to leave her room b.c he was laughing and Nora sat on her bed crying. At least she knew what she did was bad. I had to leave for a moment too b.c I was laughing! 

I told Nora she had to help us clean it up the next day. 

She woke up Tuesday morning and wanted to clean it right away. I told her we didn’t have time and she became mad.

Tuesday night we all took a Magic Eraser and a wet cloth and cleaned it up. I’m honestly surprised it took this long for her to color on a wall.

Christmas Babies

Both my babies - in their chair - in front of the Christmas tree : ) 

Nora in West Chester

Hannah in Milford

Nora’s 3rd Birthday (and Thanksgiving)

3 Years - ! 

Sometimes I forget Nora isn’t three already based on the full out conversations we have nowadays. Miss Nora is clever beyond her years, let me tell you! I also never thought I’d have the expressive, theatrical daughter that we do... OR it’s just her age... Girl has been talking nonstop since her first words, so who knows. 

Since Nora’s birthday has - again - been so close to Thanksgiving,  we combined the two - again-  with our families. Maybe for age four we’ll actually do a friend party - ? 

Pretty tutu from Aunt Katherine and Jeff

Nana & Papa with all their Grandkids! Hannah was not enjoying it.

Nora’s Photography

3 Years

Nora has started to use my camera... she’s clever - enjoy!

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

Back to the Grind!

13 Weeks / 3 Months

Wow, I can’t believe my maternity leave is over tomorrow… it went fast, yet that delivery day feels like ages ago. Father Time is an enigma.  

I truly am looking forward to going back to work; I enjoy my coworkers, our studio culture and our work. I’m looking forward to getting a little more cleaned up every day and wearing high heels. Ha!

Then the other side of the coin is missing the two little faces that resemble me. Even though Nora has made me incredibly angry at certain times during my leave, she is still our sunshine. Funny how that works. I’ll miss getting day-long cuddles with Hannah, but know I’m still her Mommy who will cuddle her when I’m not bringing home the bacon!

I’m grateful we found our sitter, Alison over a year ago; she is patient, caring and has a good heart. Not to mention she lives 1 mile away! I sat with her to feed Hannah four times, so she has the hang of it and feels comfortable with the tube feedings - a huge weight off my mind. 

As hard a time I have giving up control, I personally believe in the “village” to round us out. It allows me to take a breather and re-focus so I can be a better Mommy and wife. Staying home with two littles is hard. Especially when you have to feed one, pump yourself and keep the toddler from climbing up the mantel or swinging her arms at you. Sigh. 

All Moms work hard no matter what the setting - stay strong ladies! 

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 ::

Exclusive Pumping

11 Weeks

Nursing is hard work. Exclusive pumping might be harder… or the two paths are like apples and oranges. 

I’ve been pumping every 3 hours since September 1st. I wake two times every night to keep up my supply. It’s. Rough. I’ve read that by week 12 your supply is established, but I’m just staying ahead of Hannah. My freezer stash is not much. I’m fairly certain we’ll be supplementing with formula shortly after I go back to work since Hannah’s volume intake is now allowed to go up again. I’m okay with that. 

With all the hurdles we’ve had, a toddler to keep on a short leash and going back to work full time, I’m already proud I’ve been pumping for almost 3 months. My original goal was 9 months. I think at this point, 6 months will be a great goal. That should put us to a bit after Hannah’s heart surgery.  *Oh yeah, I emailed our cardiologist and he confirmed my suspicion that surgery will be mid to late January*

I’d wanted to give nursing a try…we try once a day and Hannah seems to get it; she has a good grasp of suck/swallow/breathe. Again, she’ll never get the amount of calories she needs from me to bulk up for heart surgery. She’s having a hard enough time with bottles, I don’t want to make her master nursing at the same time. I’m okay with that. It’s been a rough road and I’m giving myself a break with a 6 month goal. 

It’s been interesting “joining” the exclusive pumpers club. A lot of women have preemies or had a hard time with nursing. I joined a Facebook page for EPers. Everyone talks about ounces pumped, how many times they pump per day, their freezer stocks, etc. It’s a whole new world. There was one woman today who posted that she’s been pumping for 46 MONTHS. Oh my Gawd. Did you know women drink Ovaltine to up their supply due to the malt in the drink? So many interesting facts you guys! 

I’m almost halfway to my goal - pushing on to February! 

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