Tuesday, May 29, 2012

We Used To Turn On Lights In This House

She likes to sleep
with her hands
out, just in case

The first 3 (maybe 11, it's hard to remember) days after Clara came home from the hospital, we whispered. All the time. We were so scared of waking the baby, because we didn't know what to do with her. So all activity was centered around being quiet, holding still, and SERIOUSLY, DON'T WAKE THE BABY OR YOU'RE IN BIG TROUBLE! (fiercely whispered, of course.)

One night, I was getting ready to run to pick up some fast food at a drive through, and right before leaving, I had this flash vision of me whispering in to the menu speaker and being so frustrated that the employee could not hear me. I felt like I would get there and forget to talk out loud. And the idea made me laugh hysterically for about 6 minutes before Todd finally convinced me I would be fine, and sent me on my way.
Sleeping during
tummy time!

I hear phantom crying babies all day. At least 98 times a day, we freeze and stare at each other with super wide open eyes as if we are hiding in a closet in Nazi Germany-"did you hear that?" We don't watch much TLC (except What Not to Wear, poor Todd.) If the TV accidentally gets left on that channel, we're in big trouble because it has nothing else but crying baby shows. That will get new parents running to the nursery faster than you can say "it's just another show about someone with many, many more kids than we are prepared to handle!"

See why we like
her to sleep?
Much like the Count of Monte Cristo, Todd and I can now see in the dark. We can go in to her nursery, check the bag that holds formula, fill it up, find her binkie, put away clean laundry, turn on Lambie, avoid tripping over the sharp edges at the bottom of her feeding pump pole, even change a diaper-all with no lights! We can even see each other well enough in the dark to signal to each other (silently, duh!) when we need things like wipes or another blanket. These are the skills you acquire when you are afraid of your baby.

The thing is, thanks to Fat Tony (her feeding pump and the pole it hangs from), she is a really good sleeper. If we stick to our routing and bathe her, snuggle, and put her down by 8:00PM, she sleeps until about 8:00AM. Or at least, she did, until the dreaded season of seasons Summer arrived. The sun comes up earlier and earlier. She gets up with the sun, and as previously stated, we LOVE it when she sleeps, almost as much as when she eats. So it is with no pride and a plea for understanding that I admit...We have now covered her window with a blanket. This does not go with the aesthetic we were originally going for in the nursery, but I'll bet you $82 that she sleeps until 8:00AM tomorrow...

Thursday, May 24, 2012

Clara's Corners

Amazement awaits us at every corner.
James Broughton

My main system of faith and belief is family. When I think back to my childhood and any struggles I experienced, the story always ends with comfort and acceptance from my parents and siblings. Childhood fights with 'best friends', feeling left out, unpopular, alone...all the normal ups and downs of being a girl-I traversed these challenges with a relatively strong sense of happiness and esteem because my family was always there to tell me I was smart, and kind, and prettier than I really was (you have to tell your kids that, right?)

So it's not surprising that the biggest challenges I've faced in the last few months have been met head on by my mom and sisters, and met with action-these ladies are the busiest people I know, and they pushed and pulled and dragged me through this stressful time by inspiring my to join their cult of crafting, vacuuming and service.

When we first found out about Clara's heart defect, and our world felt about to collapse in every way, my mom and sisters happened to all be out of state at market, finding new product lines for their store.The call we made to them that night was full of tears and fears, but left us feeling so hopeful. They have been amongst Clara's biggest cheerleaders from day one, and they made me see this challenge as an opportunity and a blessing-we would not have been given this child by accident. She was coming to us because we were meant to be her parents, we could to the best by her. And through all the ups and downs, we have maintained so much faith that Clara would be happy and well, and boy has she!

We try to avoid the inevitable comparisons that come with parenting, observing differences and similarities with other babies. But at the same time, the reality is that so many CHD and 22q kids have traveled harder paths than Clara. While we don't know what the future holds, we feel blessed to be where we are with this little girl. We've seen stories and met friends with very different challenges. A baby a few weeks older than Clara who is also missing her thymus, but does not have enough t cells, resulting in a bone marrow transplant from her brother. Her boyfriend, a few years old, who has not slept through a night more than 10 times in his life (his poor mom!) A sweet friend who spent her first 18 months of life in a hospital and endured many painful surgeries. And countless heart friends with a severe defect called HLHS who have 1 heart surgery in the first few days of life, and then their moms take them home and basically stare at them for about 6 months to make sure they are alive until they are ready for a 2nd surgery. And don't worry, that is shortly followed by yet a 3rd open heart surgery. These are true warriors. And while we are thankful to have breezed through our first OHS and will (hopefully) not face another for years, I want so much to use this outlet as a way to help encourage them, and educate others.

My mom and sisters own a local small business at Gardner Village named Upon the Shelf. They have dedicated a corner of their store to Clara and all the heart moms out there. They have filled it with hearts and flowers and so much love, we couldn't be more grateful their support and dedication to this cause. They have even helped me make items to sale in this area, all to help our sweet girl have every opportunity to grow and thrive. This Clara has invaded the corners of our hearts and brains and our living room and her nursery and our car...and she wiggles her way in to the heart of everyone she meets. And now she has one more corner of the world that is all about her and her friends. We love having the opportunity to tell people about this journey.

Thank you to the builders of Clara's Corner
My mom, Vickie; My sister, Jenn;
Me; My sister, Kim
And all the way from
Virginia, my sister Sherrie

Tuesday, May 22, 2012

Clara's First Report Card

Project Clara has hit a big milestone-She is 8 weeks old today! There were days when we didn't think Mom and Dad would make it here, but we knew Clara would. She is stronger than Todd and I, infinitely. And so, I present to you a progress report...
Clara Caroline Forbes March 27, 2012:
About 2 hours after delivery

HI Mr. Fan!
English: A+
Clara has been talking to Mr. Fan for weeks, and she shows a lot of passion for the topics they discuss in the mornings. Her opinions about mornings (thumbs up), food (not a chance), and baths (number one favorite place) are always well constructed and vigorously delivered.

Math: C-
Dad tests all bottles,
nipples and food that
goes in to our Clara.
While Clara is competent in adding food to her mouth and subtracting it from her stomach (and on to my shirt), she doesn't seem to really grasp the concept of taking and keeping calories in her body in order to help her grow. We believe she might be a Republican as she seems to think that austerity without investment leads to prosperity ;)
We will be keeping a close eye on this behavior.

Physical Education and Health: A-
She has recovered well from her first open heart surgery, her infection, and repeated taping and un-taping of her face. This girl will be turning over any day now, she is loving tummy time, and she only cried a bit when I replaced her NG tube last night (My first time! NG moms, try it from the top instead of going up the nose. Got it on my first try that way!) Rubber hose up your nose!

Clara's progress toward eating orally is definitely slipping backwards. It is breaking our hearts to see her eat less and less, and we are considering a move to a g tube until she is bigger. We will review this option with her cardiologist and pediatrician over the next week, but we have had good advice from heart moms on this, and feel it might be for the best.

As a strange and silly side note to Clara's health: When her heart surgeon, Dr. Burch, re-opened her a few weeks ago to clean out her infection, he came to let me know how it went afterwards. He said, "I remember her now, she has 22q, right? I realized that when I saw she has no thymus." So, he recognizes her better by her insides than her outsides, which made me laugh. And then when the NP Annie was removing her sutures, and Clara started snorting, Annie also remembered who Clara was. She recognizes her by her snorty breathing sounds. I love that these are her 'markers.'

International Business: B+
Clara took her first business trip with me last week. We went to Idaho to visit my sister, er, work on product for an international craft design company. She wasn't super helpful, but she slept great on the drive. She was so excited to see balloons for the first time, especially when tied to her foot and allowing a great view of Aunt Kim's fan. I got a lot of work done while Nana Wallace and Kim's girls took care of Clara, so she gets a high grade here for behaving. Mostly.

Recess: A
Lamby and Minky.
Lamby plays relaxing sounds
that lull her to sleep and
Minky is her favorite
blanket to get naked on
because it is so soft!
Fat Tony. He is a chef/body guard.
He feeds Clara at night and will
trip up or cut feet on anyone
that approaches her. He's a menace.
When Clara is awake and not hungry, she is so happy and good at playing! She has so many friends, real and imaginary.
Her BFF, Mr Fan. A ceiling fan
should be considered a basic on all
baby registries, like diapers and

Bop and Corn Bag. She does a
lot of rocking and rolling in this
guy, and loves a warmed
corn bag on her cold toes
and aching belly.
Overall: Super Stupendous +
Life is getting closer to feeling normal again. We haven't seen the inside of a hospital for days and days. We have so much fun watching and laughing at this little face. We're so excited to get to take her places and introduce our little miracle to new friends.
I can't believe we resisted having kids for so long. I wonder what else I was wrong about?

Our Clara, Week by Week: