September 29, 2011


Today Clara and I took her very first trip to the library. It's a place I'll be dragging her a lot over the next few years so she better get used to it! I needed a few books for my class this afternoon and my classroom is still mostly in boxes. I couldn't put my hands on my copy of Joyful Noise (and you can't teach children's poetry without it!) so off to the library we went. I picked up a few new board books for her, too, then promptly wiped down every single page with a Clorox wipe.

I also got a copy of CS Lewis' A Grief Observed for me to reread as I continue to struggle with the why behind every other CDH baby who loses this fight. I'm sure I won't ever understand it, but maybe rereading this will help me grieve alongside these other mothers just a little better.

I loved being among the aisles of books today. I truly hope Clara will grow up learning to love literacy!
Here's my little bookworm!

September 28, 2011

Pajama Day

When I taught kindergarten we used to always have a week-long unit on bears and other hibernating animals during the winter.  On Friday, all the students would wear their pajamas and slippers and robes to school and we would hang out in caves (ie: underneath the tables with blankets draped over them) with flashlights and drink hot chocolate and read books and stay very very quiet. It was always a really fun day (for the kids; exhausting for the teachers!).

Clara had her six month check up at the pediatrician yesterday and aside from getting four - yikes! four! - shots, she is otherwise doing great.  But it was reiterated to us for the second time in as many days just how careful we have to be this winter during cold and flu season.  I think I had been hoping somewhere deep inside that since Clara is doing so well and is not as sick as many other babies with her condition that we might get a pass on worrying about sickness all winter.  Bummer.  We're not special.  Clara will be prone to respiratory illness just like any other baby with CDH and it could easily take a turn for the worse and become a yucky case of pneumonia or something else.  So, we're doing everything we can this winter/fall to prevent sickness.  She got her first flu shot yesterday and will get a second one in another month.  She's also eligible for synagis, the RSV vaccine, so it will be given to her every 28 days starting at the beginning of November.  Aside from that we were urged to hibernate through the winter.  Sadly, she said we should avoid going to church, taking Clara out in any kind of crowd, and especially do our best to stay away from other children aged 12-36 months (the icky toddlers who all have crud and aren't old enough yet to really know how to keep it to themselves).  We have another couple of weeks, at most, of freedom before we'll begin our serious hibernating with hopes that we can get Clara through this first cold and flu season without incident.  Yes, she will eventually get exposed to all this stuff and will someday get sick, like any child.  But we're to do everything in our power to try to avoid letting it happen this first year.

So, just to practice our upcoming hibernation lifestyle, today Clara and I had a pajama day.  It was fabulous.  I guess she understood just what I meant this morning when I announced to her that we would not be getting dressed today.  She took three amazingly long naps totaling 5.5 hours of nappery.  I even napped during her first one, which hasn't happened in months! [Sidenote: I needed to nap because I stayed up way too late last night making some changes to the blog.  We needed a new header, with Clara's photo and not just the ultrasound and empty crib.  So I gave it a bit of a facelift... let me know your thoughts on it.]  Aside from that, we read lots of books, she ate lots, we played on the carpet, she bounced in the doorway while I cooked and we had a generally happy cozy day at home.  I'm sure it's gonna get old this winter and I'll be going a little stir crazy at some point, but today was truly about as good as it gets.  Want some photographic evidence?

Happy to be in my PJs
 Clara loves this bla bla doll.  I love it, too.  The heck with gender stereotyping.  I absolutely adored playing with baby dolls when I was little and it took me thirty years to get a real live one of my own.  I hope she loves playing with dolls as much as I did.  I think it makes good mamas.  This one is super soft and really unique though.  A great first doll.
Sitting tall with my bla bla doll
Laughing baby

So big and strong on my belly now

Wanna see my tongue?

Happy as a clam

Whatchu looking at?

Loving on my bla bla

You can still bounce, even in PJs
I love to read stories with Mama

Snug as a bug in a rug.  Three naps = 5.5 hours.  Delightful.
Yep, pajama day was pretty grand.

September 26, 2011

Back to Brenner (But just to visit)

Clara had her six month follow up with surgery today (the first of several appointments this week), so we were back at the hospital and after meeting with Dr. Turner, we headed back to the NICU/PICU to see some of our other old buddies.  I have to say, I've just been replaying the morning over and over again in my head all day today.  It's such a testament of how far we've come and I just can't stop thinking about all the people who helped get us here and who we came to truly love along the way.  I trust and respect their opinions so deeply, so it meant a lot to hear them all 'ooh' and 'ahh' and say how great Clara looks and how well she's doing.  In a strange way, I kind of miss sitting in on rounds, sharing what I think has happened and how she's doing and where we might go from here.  I don't miss the sickness or the fear or the worry, but I kind of miss this family of people who loved Clara (and us) like their own and whose commitment to quality care is one of the big reasons she's thriving today.  Dr. Petty said today, "Clara is really the exception, not the rule.  It's so great to see a baby who didn't just survive, but is truly thriving."  We're reminded of how incredibly miraculous her recovery was.  Part of our hearts belong to these people, and they always will.

Here are the two men who deserve most of the credit for saving Clara's life.  Dr. Petty put Clara on ECMO in the wee hours of the morning on her second day of life and was her primary surgeon who followed her (and carried us) through her 78 days at Brenner.  He's the one who had to break the news to us that he didn't expect her to live and he's the first to give credit where it's really due - even today he said, "This one was all God."  Dr. Turner did Clara's repair surgery and also took her off of ECMO and for those two big days he will always hold a special place in our hearts.  He's been performing surgery on babies for decades and we're so thankful for his expertise, his wisdom, and the care and compassion (and sense of humor) with which he handled us during those days.  Our hearts always swelled with hope and comfort whenever we saw Dr. Turner coming.  These two men rock our worlds.

Clara and Dr. Petty

Clara and Dr. Turner
 Remember Dave?  He believed in Clara when nobody else did.  He pushed the physicians to "cap her off" on ECMO before they really thought she was ready.  Even on really, really tough days he insisted that Clara was going to be fine.  He was so optimistic and filled us with hope because he never gave up.   We hadn't seen Dave in a long time and boy was it good to hug his neck again.

Dave, respiratory therapist
 And remember Scott? He's in charge of ECMO (along with his sidekick, Barney, who wasn't there today because he was up all night on backup for some late-night heart surgery. These. people. work. hard.) and he really loved Clara.  I'll never forget the way he looked at her while she was on ECMO and called her "little lady."  His gentle spirit gave us a sense of calm in the midst of the storm.  He's another one we hadn't seen in many months and it was great to catch up a little....

Chrissy, Clara and Scott
Of course, there's Crystal.  When we buzzed the bell at the unit, she's the one who greeted us saying, "They said that Clara was here and I said, 'MY CLARA?!'"  Yep.  She's yours, Crystal.  Love you.

Clara grabbin' Crystal's lip. (That's love).
So, after our surgery appointment, and visiting in the PICU, we headed back to the NICU.  Dr. Yang was the attending who cared for Clara longer than any other attending while we were in the NICU.  We will forever be grateful that she was on call for so many days during our stay because she was the perfect fit for Clara and our family.  I have so much respect for how Dr. Yang practices medicine.  She's a brilliant woman, and she really knows her stuff, but she looks at the baby more than any other doctor I've ever known.  She never just relied on a report from a resident during rounds. She always wanted to see and touch Clara for herself, and she did - many times every day.  She was willing to push Clara when she thought she could handle it, but was quick to back off if Clara said, "enough!"  (I remember one day when we were trying to wean sedative and painkiller and I was so eager to get it off, but Clara was showing withdrawal symptoms and Dr. Yang quickly adjusted her doses, not wanting Clara to be uncomfortable or in any pain.)  She is a phenomenal problem solver, always turning things over in her head over and over again until she's sure of a solution.  Perhaps most of all, she believed in Clara.  She's the one who let us give breastfeeding exclusively a trial run in the hospital, when that's not how they usually roll.  She's the one who said, "Don't put a G-tube in!  She can do it!"  She's the one who knew that our family was going to do anything in the world we could to help Clara be the best she could be.  And she often affirmed our long days and nights in the hospital by saying that our time, love and attention were part of what was helping Clara defy the odds to heal so well.  On our previous return visits to the NICU, Dr. Yang had not been there.  So it did our hearts a lot of good today to see her and to let her love on a big healthy Clara.  Because I trust and respect her so much, it meant a lot to hear her say how well she thought Clara was doing.  I hope we'll stay in touch for many years and that she can watch Clara continue to grow and thrive.  We love you, Dr. Yang!
Dr.  Yang!

Dr. Yang and Erica (who always had a smile and a positive word of encouragement for us, too!)
We also got to see Tara today.  Not sure how we missed getting a photo with her!  Tara had her own miracle baby just two months after Clara was born.  She went to Boston and delivered a beautiful baby girl with a heart condition requiring immediate surgery.  Georgia is thriving just as much as Clara these days!  Her unique perspective was always reassuring to us.  Can't wait for those two girls to meet someday.

Of course, there were other people who we loved a lot and miss as much as these folks, but didn't get to see today.  We saw Martha (the lactation consultant who was committed to helping Clara and me both learn how to nurse) and Wanda (the CNA who loved us like her own) on our last visit though.

Martha and Wanda with Clara
So, in case I haven't made it clear: it did our hearts good to see these folks. So, so good.

Clara did have to get a chest x-ray before we left the hospital.  By this point, it was nearly an hour and a half past her afternoon nap time and she was such an incredible trooper to still be hanging in there.  She was tired and hungry, but still let the x-ray tech strap her into this contraption for a few quick x-rays.  She was within her right to scream and cry, and if she had, this would have been pitiful.  Since she was instead looking at us like, "what the heck is going on here?!" it was just hilarious.  Poor baby!

x-ray contraption!
It was great to be back at Brenner. And to all you other folks who we love and miss, but didn't get to see today, I surely hope we'll see you next time!

(By the way, Clara weighed 14 pounds, 11 ounces today, another 13 ounce gain in the past 13 days!  The official report from the surgeons today was that Clara is doing great!  We're to continue helping her gain weight and try desperately to protect her from germs and exposure during the upcoming cold and flu season.  But as long as there are no issues, there are no issues.  She's doing fantastic.)

September 25, 2011

Half-Year Birthday

On Friday, Clara turned six months old.  What?!  Halfway to her first birthday?!  No!  Stop, time!  I can hardly believe how quickly she's growing up and how much she's changing constantly.  It seems like every single day she is doing something new, reaching a milestone, discovering something she's never done before.  It's really awesome and fantastic and also just totally mind-blowing.  I know, I know, all you other parents out there.  "Get used to it.  Time flies."  So it does.  So here's Clara's six month report.

In her sixth month, Clara....

- learned to roll over in both directions, tummy to back and back to tummy.
- learned to sit up all on her own.
- re-started solid foods and is actually consuming some this go 'round (so far, bananas, peaches, green beans, carrots, rice cereal and oatmeal).
- gained weight like a champ thanks to lots of bottles of breast milk + formula.
- continued to laugh out loud a lot, especially for her daddy.
- loved loved loved playing in her doorway bouncer and in her exersaucer.
- began taking prevacid for reflux and is therefore taking in bigger volumes of milk (see weight gain, above).
- played independently in her crib for 20-45 minutes at a time.
- started working on using a sippy cup.
- drooled. A lot.
- chewed on lots of toys.
- loved being read to.
- loved being sung to.
- began consistently taking three naps a day at fairly predictable times (ahhhh....).
- continued physical therapy and made great progress with her motor skills and torticollis.
- pulled out a lot of hair (from Mama and Sweet Mama's heads and Daddy's chest).
- got a huge kick out of looking at herself in the mirror.
- stayed in a hotel for the first time (twice).
- went to her first birthday party (Happy Birthday, Ava!).
- went to her first wedding.
- stayed in the church nursery for the first time.
- slept through the night (it's happened!  Although not consistently, thanks to the need for feeds...).
- enjoyed play dates with Chloe.
- took walks in the stroller.
- visited Elberton, GA for the first time.
- outgrew her three month clothes.
- discovered her puppy, Rufus, and became very interested in him.

Clara, six months old:

We love you, Clara.

September 24, 2011

{Nuptials} Sarah + Ryan

There are few friendships more intense, more sincere, more intimate than that of roommate.  Sarah and I hardly knew each other when, by life's circumstances, we started living together during my senior year of college.  But over the course of many years that followed, I've shared more apartments and houses and years of co-habitation with her than I have with Robert.  And when you live with someone you're there for the late night binges, the ugly cries, the physical and emotional messes of life.  Sarah has been through it all with me and I daresay that for it we know each other in a uniquely special way.  Yesterday was her wedding day, so now she has a new forever roommate and I hope and pray that her future with Ryan will be full of rich blessings, deep happiness and much joy.  Because that's what Sarah deserves.

It was an honor and privilege to stand beside her while she made the most important and sacred pledge of her life.  God smiled down on her and the rainstorms cleared in time for a stunningly gorgeous outside ceremony.  And as beautiful as the weather was and and picturesque as the surroundings, nothing was more drop dead gorgeous than this bride.

I love you with all my  heart, Sarah.  Congratulations and best wishes all around!  Thanks for allowing us to share in your special day.

Sarah hadn't seen Clara since she was on ECMO.  What a different baby now!

Checking out that gorgeous gown

Her mom tied her in...

Lovely.  And so perfect for Sarah.

Every detail was just right!

Still sassy, even on her wedding day.

Only Sarah would wear shoes like this...

Somebody snuck in a little nap during the ceremony...

Sarah and her dad, coming down the aisle

My Wendi was the soloist and she was amazing.

Sacred  vows

Love in those eyes.

Mr.  and Mrs. Sullivan!

 Me and my baby girl, all dolled up!

Family shot

September 20, 2011

Baby Chef

I gotta be honest, I never intended to be a "make your own baby food" kind of mama.  Maybe I'm lazy, or just not that hard core, but I don't cloth diaper, I don't make her clothes, I don't buy organic, and I never planned on making baby food either.  But in doing some research, I've discovered that homemade baby food can have much higher calorie content (the packaged stuff has a lot of water) and many would argue it's also healthier.  So, I signed up to start making Clara's baby food.  What I didn't expect is that I'd actually have fun with it!  Here's the step by step of my first baby food adventure.  We bought a big basket of SC peaches on our way back from GA after Labor Day weekend and they were incredible.  Despite our eating them 3 times a day, we had so many they were starting to go bad faster than we could consume them.  So I figured it was a good time to make some, freeze 'em and have them ready for Clara even after peach season is a distant memory.  Baby food peaches, Chef Hardy style:

Start with some scrumptious summer peaches...

Half them, and place them open side down in a pan with a wee bit of water....

Place 'em in the oven (ugh, photographic evidence of how much mine needs cleaning!) at 425 and bake till they're soft (mine took about an hour)

It's best to do all this while the baby is napping, but if she wakes up too early, I suggest containing her in something like this jumper.  She'll love it.


Pull the peaches out when they're soft and sniff the sweet smell of baked peaches in the whole house.

Put peaches in the blender and give it a whirl

Till they're smooth and creamy

Spoon peaches into ice cube trays

 Cover with clear plastic wrap and freeze

After they're frozen solid, remove and bag in freezer ziplocks.  Ready to grab and go for up to three months!


 Or, spoon peaches into another container of your choice.  Here we use specimen cups.  Yep, I hung out in the hospital a little too long....

Serve peaches to an adorable little baby

And hope that maybe just some of it gets in her mouth.

Next on the agenda: carrots and green beans!  Mmmmmm!
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