All Those "Extra" Hours!

I finally quit.
I had been spending my days in a very discernible holding pattern: Pump, feed Clara, clean up her spit up, pump, prepare Clara's next feed, repeat until Clara's bath and bed time.
And after a discussion with both speech therapy and occupational therapy, we all agreed that Clara will probably never nurse and that while she might learn to eat from a bottle, the odds were against us. I go back work in a few weeks and we need a feeding process that won't take all of Todd's waking hours and cause grundles of frustration. We'll be pushing to get in to GI to explore moving to a g tube.
So I have made my peace with this, stopped pumping, and stopped stressing about it. Fat Tony and the NG tube (great band name?) will take over from here. And bam, just like that, I have recovered about 4 hours of my day.
So how to fill that time? Until I return to work, crafting! Today, I made this bodysuit for Clara, we are going to a friend's tonight and she needed something fancy to wear with her sweat shorts.

 Instructions, for those who are so inclined:

Put cardboard or paper or something between the front and back to avoid paint bleeding through. I taped the bodysuit to a note card to keep it all in place.

Step 1-Cardboard to protect
the back of the bodysuit.
 
Then I used a Sharpie marker to roughly draw the necklaces. I had first bent the bodysuit and card in half to give myself an idea of the middle, just to create the "low point" of the necklace. Then I free-handed the dots, nothing fancy. 

Step 2-Rough outline of
necklace

 

 

 

 

 

Use the end of a marker or any other round, flat object to create the beads in the necklace. I wanted to have two different sizes, but you can keep them uniform or branch out with even more sizes, mix up the beads within the necklace, whatever. Dip the end of the marker in to a bowl of fabric paint and stamp the bodysuit to create the beads. I recommend re-dipping for each bead to keep them uniform in 'volume' of paint.

Step 3-paint beads on to
bodysuit

Then I created a little felt flower to attach to one side. I cut a small circle for the base, just larger than a quarter, and a larger one about as round as a coffee mug.

Step 4-felt circles for
the flower

I cut the larger circle in to a swirl, free hand again. I wanted it to look a little rustic and not perfectly round.

Step 5-Swirl!

Take the center of the swirl and glue it to the small circle. Then, just start wrapping and gluing the swirl in to a circle, kind of like a rose.

Step 6-Glue the swirl to the
small circle to create
the flower

Sew the flower to the body suit, and voila, fancy bodysuit! Excluding drying time for the paint, it took maybe 20 minutes.
Now, how to fill the rest of my free time?

Oh, Your Baby Eats From A BOTTLE?

*WARNING: This post contains words like boob, breast and nipple. I wouldn't blame you for skipping it, I would have just 12 months ago. Lactation is scary until you've tried it!*

If she thinks her thumb goes
in her nose, will she ever learn
to eat?

I am good at eating. Maybe a little too good. I am competent at all the components-I can chew and swallow and suck liquid through a straw. I have no recollection of being taught these skills, do you? Aren't humans (and even animals) generally born just knowing how to eat?
I remember when Clara's heart defect was first diagnosed and one of the longer term effects of OHS in infants they talked about was slow development, including weight gain and growth. And oh how we giggled with family about that-no baby of mine would struggle with eating, we love food in this family! And we haven't been too far from wrong, Clara has grown and is strong and healthy, even being in just the 3rd percentile for weight-we know lots of family babies that were in the same range at this age and they are doing just fine now.
And yet, there is nothing that haunts my days and nights more right now. We're early in this process still, but we keep seeing Clara move a tiny bit forward, then a few steps back. When we had to limit her oral feeds before she passed her swallow study, it seemed she was going to just yell and yell until she got more food. And once we were cleared to feed her by bottle during the day, she started strong, taking almost an ounce by mouth. We had the NG tube to ensure she got enough calories, and hooked her up to a pump at night. And then she got the sternal infection and we were re-admitted to the hospital. The first few days she was fed entirely by pump, but by the time she was discharged, she had (one time) eaten two full ounces by mouth! We thought she would quickly progress and we'd soon have to only use the pump at night. But the opposite happened, she now eats less and less by bottle each day-less than 1/3 of an ounce. Way less.

Some of the bottles and nipples and eating
implements we've tried.

So we are constantly trying to figure out what she needs-we've tried several bottles and nipples, waiting until she is really hungry instead of eating on schedule, thinning out the formula (we thicken it with high ratios of powder to water, to give her additional calories), feeding sitting up, in my arms, in Genevieve, having others try to feed her. We've changed her to a thinner NG tube to help her sore little throat, we tried adding fruit-flavored vitamin drops to the formula. She isn't falling for any of it. And to add insult to injury, she throws up every day, and sometimes several times a day.
Since she was born, I have been attempting to pump enough breast milk for her and it has been such a struggle. It seems it just isn't in the cards for me to produce enough naturally, and I've added fenugreek and domperidone and even more water than I normally drink, which I never thought was possible. Clara and I have tried nursing, but neither of us knows what we are doing and it often ends in tears for one or both of us. I feel like I'm just smothering her in my boob and she occasionally latches on by accident and then, after sucking a bit, just starts either laughing at me or crying. I kind of hurts my feelings.

Not quite the bottles you
imagine when you're
a little girl.

I see pictures all over Facebook of friends' babies eating from bottles. Even though for many years I didn't want children, I still was a normal little girl at one point, playing with baby dolls, feeding them with those little bottles that have 'milk' in them. When the instinct to have a baby kicks in, so (hopefully!) does the instinct to feed them. And in every scenario I could imagine, that meant a bottle or breast feeding. Seeing those pictures of other babies eating from bottles-sometimes I'm sad and sometimes I can laugh and think "how quaint, feeding a baby that way!" But always I am jealous. We've never just cuddled on the couch with a calming bottle before bed. It's less personal to pinch a tube, pop it open, syringe in water to flush the tube, hook up a giant syringe, poor formula in the syringe, hold it up and stare at it for 20 minutes while it empties in to her stomach, push another water flush in the tube, and close the tube port. Feels very motherly and nurturing-y and bonding-y, doesn't it? Our other option is to put a bottle in her mouth and, after a suck, she pushes it out and gags and coughs and chokes. That also makes a mom feel really good.

Clara is strong and growing well for a heart baby-her cardiologist, if not her pediatrician, was very pleased. And this tube is a blessing in many ways. It has given us many full nights of sleep and a way to administer even the worst tasting medicines with no resistance. But once again I am reminded of the difference between Italy and Holland. Here in Holland, we don't get to eat like everyone else, it's a different diet and different style and not quite what we had pictured. I'm already never going to get back the things we missed like getting to see her right after she was born, holding and touching and cuddling her when she was so fresh, and being the first to change her diaper or give her a pacifier. Today, I think it's not fair that I may never get to just sit and feed her a bottle. I'm thankful we have a way to feed and nourish our little tulip, but I don't have to like it.

How Clara eats-with her favorite binkie keeping her
safe from having food in her mouth and her
feeding tube doing all the work.

A Hole In One

Free at last!

Just as she began to acquire thumb-sucking skills, the mittens have come back to protect Clara from spreading the impetigo. She is trying so hard to keep that thumb in her mouth, and we have agreed that it is so cute, and clearly makes her happy, it's worth the enormous cost of orthodontia. Aunt Kim, a notorious thumb sucker for much longer than she'd care to admit, felt the only fair thing would be to cut a hole in a  mitten for her thumb. This little Sweet Pea is such a distraction that last night's business meeting took many hours longer than planned, and was interrupted by posing and picture taking:

"Now, where does this thumb go?"

"Some day I'll figure this out"

"Oh well, I'll nap with cousin
Doobie, that is equally
satisfying"

Yet Another Sign of the Impending Zombie Apocalypse

If you study the infected area, you
will see that the bottom of the red
area is shaped like the top of a heart.
Coincidence?!
(No. She had heart shaped
padding under her tape.)

There have been some recent reports in the news about zombies. A few gory incidents have all of nerddom stocking up on water and axes and canned food. And so we were not surprised to find a flesh eating bacteria on our daughter's face this week. It started out as red eyes and puffiness and then BAM, it got gross.


Clara has impetigo on her sweet little cheek. It forced us to move the tube to the other side and now there is no bare, disease free cheek to kiss and snuggle. It's killing me, but at least I know there's a chance I'll come back as a zombie. But those folks don't seem to fare too well either. Oh boy, it's going to be a long week.

This is how many girls it takes to paint teeny tiny toes.
Abby, Gracie, Kim, Nana Wallace, Jenn, Millie
Ellie and Abby's friend (to remain anonymous
in case she does not want to be a part of this
chaos :)

The good news is-she will be the cutest of zombies. She had a spa date with all the Wallace girls and her toes are a lovely bright pink.

All Things Are Difficult Before They Are Easy

Clara and I had lunch this week with a few friends from work, her first business lunch. She snoozed and snuggled and was so good while we enjoyed those delicious Jimmy Johns sandwiches.

My only employee, and
the only one you need,
Kim.

As we visited, my impending return to work became a little bit too real. The dramas and fascination of compliance that used to fuel my days became this looming dark cloud, just 4 weeks away at this point. Soon, I won't get to spend my days staring at Clara's beautiful face, kissing her until she squirms, tickling her chubby thighs, and making bows to match every outfit. There is no one I trust more on the planet than my husband Todd, but how many days will it take until I am not panicked when leaving them, thinking of them all day, jealous and worried and distracted?

Me, Serenie, my back up
and Clara

I have been so lucky in this job, they have given me 14 weeks (plus more, if I decide to take more) of mostly 100% paid maternity leave. And the health insurance that cost me so much more than my previous job, and used to have me complaining weekly, has paid out in spades. We have started to receive the itemized bills for delivery, Clara's surgery and subsequent hospital stays, and our frequent visits to the PCMC emergency room and rapid treatment unit. Todd can't even look at them, even knowing they are paid, because they are so scary! I can't express the relief upon seeing the "Balance Due: $0." Especially when seeing the totals on the charges. It cost about $3000 just to move Clara from the University of Utah to Primary Children's, to physically push her in a plastic bed down a few halls and across a bridge!

Yes, that says $138,454.23
This is just one of the
statements we've seen.

Don't get me wrong, those Life Flight workers and every employee we met in each hospital has been worth that and more. I just can't fathom what we would do without this coverage, and my heart aches for those in tougher positions. I cannot imagine balancing delivering a baby, dealing with heart surgery and complications, managing family and friends and a home life AND immense financial pressure. 

I used to live to work. And in a few weeks, I'll go back cheerfully, knowing it is for my family and even for me and my satisfaction. But now I know my esteem and worth will be measured by more than just what I do in that overly-heated office. My value lies in loving Todd and Clara and even Gir :) My success will be helping this sweet, special girl through challenges and joys and all the things ahead of us. I hate that I will be gone so many hours and days, but I am blessed to have these days and the ones ahead. And I will make it to every important event that I can, even the capoeira exhibitions her dad has planned. She will know that she comes first in my heart.

I know I won't be there for a lot of Clara's other firsts. So I treasure a new first tonight-she has finally managed to do something she has been working on for weeks. Our proudest moment today, Clara sucking her thumb:

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...

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