Happy Tears at Work: Race Day Pt 1

30th Surprise Birthday - awesome and fun!

Surprise Baby Shower for Hannah - awesome and tears of happiness!

Surprise at work for Hannah support - awesome and tears of happiness - again.

This past Friday around noon, we were called into the conference room for a meeting... okaaaayy? There was a gift bag on the table along with a Buskin box. “Christine, we have a surprise for you.“

“Why??”

“We wanted to support you and Hannah... ” and then I can’t even remember the nice things said because I was crying. If you ever want me to lose it, just say “support” and “Hannah” in the same sentence. 

A handful of my coworkers were going to join us for the World Down syndrome Day Cincy 5K! They even made shirts for “Team Hannah!” My friend/coworker/neighbor Emily was the brains behind coordinating everything - what a sweet friend and supportive work culture : )

The Girl Who Cried, “Emergency!”

Someone learned a new word/trick.

We start Nora’s bedtime at 7:30pm. I do fairly well getting out around 8pm. Around 9pm there was a shout for “Mommy! It’s an emergency!!” I knew it wasn’t - once I was up there Nora said “Mommy - it’s an emergency - a pony fell in my eye!” This My Little Pony - Cherry Spices [is that a stripper name?] - it about two inches tall.

About 10 minutes later: “Daddy! It’s an emergency!!” Her teddy bear fell out of bed and somehow made it all the way to her door.

The Girl Who Cried Emergency...

Hannah Appointments and “Eating”

6 Months

Since we didn’t have Hannah’s surgery, we scheduled a Help Me Grow consultation and a Feeding Therapy consultation. 

Our speech therapist thought Hannah looked great - everyone always comments on how great her coloring is - I guess a lot of heart babies may seem paler or blueish?? Now that Hannah is 6 months old, they want to get her attempting solids. As you all know, Hannah takes nothing by way of mouth. I give her a few dribbles of milk just so she remembers that’s how she ought to be eating. 

We put Hannah in a highchair, reclined a bit with support behind her arms and head - this way she isn’t working so hard with her heart and can try and focus on the food. She kind of moved it around a bit in her mouth and I think she swallowed some. We’re trying just the flavorful stuff - no cereal. 

It’s been going okay - she basically just blows raspberries when I put food in so I can’t tell if she’s actually eating any!

The speech therapist also commented on all the coos and raspberries Hannah made - great steps towards speaking!

On Thursday we had her Help Me Grow team at the house. The physical therapist thought Hannah had great head control, her posture is very good with supported sitting. Hannah does favor looking/rolling to the left, so we need to get her focused on the right side. We’ll keep up the supported sitting - our next goal for her is sitting on her own at 1-year - we’ll see!

Also - her smiles are finally coming out! It’s been agonizing since typical babies smile at around 2-3months. I was starting to worry - but this past week has been plentiful with our sweetie’s grins!

Prune lipstick!

Happy WDSD 2015!

We expect great things from our little warrior!

World Down syndrome Day: 3-21

World Down syndrome Day is March 21st: 3 copies of the 21st chromosome. 

This time last year Hannah was growing inside me, but I had no idea of the new community she’d introduce us to. It’s not the journey we thought we’d be on, but we can’t imagine life without Hannah Mae. The unknown is terrifying, but once you’re educated and see the amazing paths others have cleared for you, the journey doesn’t look nearly as frightening. And really, extra chromosome or not, every child is a challenge in their own way - right?

My perspective of what a “healthy” baby has shifted dramatically. For all intensive purposes, Hannah is “healthy” in my eyes. When her heart is repaired, she’ll be super healthy : ) If Hannah only had Ds and not her organ defects, she’d still be healthy. In my eyes, Ds doesn’t mean your child is unhealthy. 

When I hear expectant mothers say “I just want a healthy baby,” I always wonder what that means to them. I know no mother wants to have a child with Ds, but I hope families who find their child does have Ds eventually realize it will be okay. I’ve heard startling statistics on pregnancies ended because of an extra 21st chromosome which crushes my heart... I now know Ds is not a burden. Ds is not life-threatening. People with Ds live very full lives - more than a lot of people in this world can say. 

No child is perfect, even those with typical chromosomes.

Dear Future Mom

Happy Hearts

A great weekend after some rough weeks!

Tim spent some time with good friends Friday night which was totally needed and deserved for him. The girls were fairly good for me, though Nora still woke up at 6am Saturday... Zzzz.

We went to breakfast at Frisch’s Saturday AM; never crowded and man it’s cheap!

Our friends, the Godfrey/Morris’ came over Saturday evening and we ordered thai food - yum! Glad to have some company and the girls did fairly well - ages 2.5 and 3 can get tricky with sharing : ) 

Nora and Evelyn having a moment of togetherness.

Saturday night we were both in bed before 9:30pm. I had my first race Sunday morning since 2013 - ! The Heart Mini sponsored by the American Heart Association. I’ve been wanting to do it for years and had multiple reasons to finally do it; 15K [9.3 miles] is probably my favorite distance and I’m not quite ready to do a half marathon. Plus, I feel heart health is becoming more important to me; with Hannah’s heart defect, my Dad’s congestive heart failure around 10 years ago [Mom, correct me if that’s wrong] and my Uncle [Godfather] Keith’s passing due to heart failure. I know I have many other family members who battle heart issues, so this race had meaning to me.

I woke up at 5:15am - which nowadays is not that much earlier than normal. My amazing mother and father-in-law came over at 5:50am [!] to give Tim a hand since he’s not entirely healed yet. Nana made breakfast for everyone because she’s a rockstar. 

It was strange going to a race all alone, but there’s no way I’d have them [him?] all get up that early in that cold weather. However, 40˚ and clear was perfect for this race. Usually the Heart Mini is colder and frequently wet - ! 

Heart Mini was a good size; not as crazy as Thanksgiving or the Pig. We ran out East on Columbia Parkway and back - simple as that. It was rather hilly but I liked it - just hilly enough - not as hard as the Half Pig. Plus running out East as the sun is rising was beautiful! 

I saw lots of familiar faces on the course including Hannah’s Cardiologist : ) He was rocking the Mini Half on a slightly different course, but I was excited to see Dr. Kimball. 

I felt really good and fast - I finished the 15K [9.3 miles] in 1:29:24 with a 9:37 pace - very good for me! I was super proud of myself! 

I got my medal [woo hoo!] and walked straight to my car and guess what I did? Hooked up the breast pump for the drive home - haha! Darn lactation. I decided to treat myself and get some Panera bagels & cream cheese + Starbucks coffee = post-race bliss.

The rest of the day was spent cleaning and spending time outdoors - so awesome! We even took our first family walk - whaaaat? Tim pushed Hannah in the stroller while I wrangled Ailo and Nora in a wagon... like a boss. There was a funny half hour where both girls and the dog were asleep - that darn 5pm!

ASLEEP

ASLEEP

ASLEEP

We treated ourselves again to some takeout - I wanted fish & chips. 

So a really lovely weekend with an extra shoutout to Dottie & Mike for their help on Sunday - we’re thankful for you! xx

Sisters:

We’re proud of Hannah getting her stronger core and starting to pull herself forward - case in point: playing with the “microphone” just like her big sister did! Hee-hee!

Nora 2012 - 5 months old

Hannah 2015 - 6 month old

Back At It

6 Months

Not to jinx us, but I think we can store away Sami the Seal until the next cold - which, Dear Heavens, I hope isn’t until after April! We’ve been getting much better sleep all around... although Nora STILL can’t seem to sleep past 6:30am... Zzzz. 

Hannah had her 6-month appointment Thursday. I really like her pediatrician - Dr. Drasnin has been voted a top Doc in Cincinnati for many years which I actually did not know prior to joining ESD Pediatrics. He’s kind of a goofball, but super easy to talk to and he knows WE know Hannah best. 

Hannah clocked in at 13 lbs 12 oz and 24" long - still growing - yay! Both the sitter and we have noticed Hannah is starting to pull up with her core and pull herself forward in seats - she’s getting strong in her core which is great! My 1-year goal for her is to sit on her own. Her 6-month goal was to support her head which she’s doing great now! 

Tim had his follow-up after his hernia surgery on Tuesday. He’s pretty much back to himself and is allowed to lift 20-25lbs until April - yay! We weighed Hannah IN her carseat which was 23lbs but always up to Tim’s comfort level. I don’t feel nearly as helpless now that he’s back in the game. 

April 21st

Hannah’s next surgery date is my Mom’s birthday. Our last scheduled date was her Aunt Molly’s birthday. Some trend, huh? 6 weeks feels like an eternity...

I’m already anxious about keeping her completely healthy. Lockdown in a bubble at least two weeks out; not sure how strict we can be since Tim and I both work full time : P

On the bright side, Hannah’s cold is making its way out. The past two nights she’s had a coughing period from 11:30-12:30am but I’ve simply held her until she calms down and falls back asleep. So I’ve felt the most rested since about two weeks ago. 

My Mom graciously came down and spent two nights with us last week which was a big weight off me. Hannah got a full day of breathing treatments which put my mind at ease. My Mom also wakes at the buttcrack of dawn which Nora did all last week, so I could just lay in bed. 

Both my sisters also came this weekend to lend a hand as well. I’m very lucky. Tim is feeling more like himself except for the lifting part. His follow up is today but we’re not sure if he’ll be allowed to lift Hannah yet. He still doesn’t feel comfortable opening our heavy sliding door - !

Getting some more rest, Hannah’s fleeting cold, and the warmers temperatures have me feeling better this week...

On the Upswing?

Still trudging through this rough week. I think it’s ironic that I’ve given up the middle-of-the-night pump to “get more sleep” and yet I’m getting even less than before - ha! 

Hannah went to the pediatrician Tuesday thanks to my In-Laws. Tim felt a fool because his Mom had to lug Hannah in her pumpkin seat  - he tried to explain to the nurse about his hernia surgery... ha! 

Hannah was given another breathing treatment [Albuterol mist which is basically a saline spray]. Since Hannah had the same response last cold, they sent us home with... Sami the Seal! Wheeeee! Honestly it’s a good thing because now we can give her a 10-minute mist every 4 hours as needed which makes me feel a little better. 

See guys - it’s so cute and fun! *sarcasm*

However the last two nights have still been rough - Hannah coughs, we can’t sleep. My average is a 2-hr chunk of sleep and a 3-hr chunk. Nora has decided this is the week she’s going to wake in the 5-am hour also. 

I picked the girls up last night and the sitter said Hannah had a rough day : ( She was having a little trouble breathing and was uncomfortable so as soon as I got home I gave her a breathing treatment... and every 4 hours since then. Needless to say I’ve been worried about her.

My Mom is coming down tonight to spend the night and help for a day which feels great. Then my sitter texted me this photo and said “She’s having a good day!” I told her she made my week : )

6 More Weeks

Of winter? No - until we can schedule surgery again because Hannah tested positive for Rhinovirus - a.k.a. the common cold. 

My weekend ended real nice and the past 36 hours have been suck.

Yesterday was filled with phone calls and running around to get Hannah a viral swab. Missed half a day of work for that. 

Last night was brutal - Hannah coughed most of the night. Then Nora decided to jump in and refused to sleep in her room from 3-4:30am. Bless Tim’s heart, he helped and laid with her a few times. My total sleep was about 4 hours. 

So with the lack of sleep and the news that we have to wait another 6 weeks, I locked myself in a bathroom stall at work and cried. Like a lot of women, I don’t like crying at work. I thought I’d shaken it off, but when a coworker came up not 15 minutes later and asked how I was doing, I lost it again. I’m thankful to have a handful of other Moms here who are supportive and reassured me with caring words: “Tim will be all healed by then!” “It will be warm and sunny, no more snow!” They made me feel a lot better. 

I’m still frustrated though; again, one of my biggest fears is Hannah falling behind even further with her feedings. At this rate, I’m not sure she’ll be able to try solids until she’s 8 months old... 

Trying to stay focused on the positive - there are a lot worse things to deal with in this life, I’m just in the middle of a hairy few weeks... 

Right now I just want 6 hours of consecutive sleep.

Thanks for everyone’s supportive words... 

Crap on a stick.

This week has been hard. Hard. Hard.

I was basically on autopilot all week; get up at 5:30am, pump, shower in the hall bath so Nora didn’t come into our room and touch Tim. Get the girls fed/ready and out the door by 7:20am. Work is almost relaxing; Sit. Coffee. Internet. 

My wonderful In-Laws came over Tuesday/Thursday night not only with great dinners, but stayed so I could give each girl a bath too - such a huge help. I’m grateful they are nearby and are so willing to help. They also came Saturday which allowed me to log 8.3 miles of running.

It’s still hard and I know Tim is already tired of being sore and not able to help. And I’m tired of feeling the weight. I can’t be Tim’s nurse because I have the little ones who need me more. He’s slowly able to slightly more each day, even if it’s sitting with Nora while I feed Hannah.

Friday after a long, hard week, my commute ended up being over an hour long due to traffic and when I picked up Hannah, her minor cough had become slightly worse. Cold = postponed surgery. I had a hard time holding back my tears on the way home and lost my composure. 

Six flipping weeks we’ve waited and she gets a cold days away from a surgery. There’s only so much of a bubble we can stay in especially with two full-time working parents. 

I thought it would work its way out, but I’m not seeing any improvement. I can only imagine they’ll make us wait another six weeks... I’m trying to keep perspective that Hannah is “healthy” and getting nutrition and growing. Eventually she will be fixed. 

I’m just tired of waiting and just want to get past this hurdle. I’m also thinking of Hannah’s ability to eat - we can only work on her coordination to drink bottles once we get her heart fixed... and eating solid foods. T21 causes her to be delayed to begin with, but this highly possible postponement will cause her development to be delayed even further in my eyes... 

I’m contacting the surgeon’s office tomorrow to see what the next steps will be. I’m certain we’ll be re-scheduled - and we won’t have been the first. 

Will keep everyone posted...