Firsts and Lasts

Its just less than a week before I return to work, and we're trying to squeeze in all the activities we can.

We started by going with Aunt Jenn and (most of) her kids to the Lehi Rec Center pool today to get away from the insane heat. Todd is attempting to deliver a 6mm kidney stone, so Clara and I went on our own. Clara was not super impressed with the heat, and wasn't sure yet about the juxtaposition of cool water, but she did a bit of splashing, snoozing, eating, puking and smiling. Not bad for her first swim day!

She also wore a size 5 diaper for the first time. Mom didn't think to bring anything but swimming diapers, and we needed something to change in to for the drive home. Thanks for sharing, Tate and Tanner!

Fits well, yes?

We also had another visit from Clara's speech therapist today. Ironically, while this is the first visit where she was really happy with Clara's progress on oral feeds, it was also the first visit where she did not gain any  weight. It felt like a tiny step back, but I quickly put it out of my mind when I remembered that she has been eating almost half an ounce, on a regular basis, this last week. The ST also told me I was the first mom she worked with who tracks feeds in Microsoft Excel. You should see the graphs we have going!

Heart Jams!

 I think Clara has worn my favorite heart jammies for  the last time, the ones we brought her home in. We 
love how much they remind of us her miraculous heart, and she wears them 
when the other heart babies are in need of moral support. She might not be
gaining weight, but she did get taller-her toes are ready to break through the
footy part. I think we need to have Nana Wallace help turn them in to jammie
shorts.

I bought KY Jelly for Clara this week. I needed a water based lube to place her NG tube, and this was what they had. So that's a first to commemorate, I think?

101 Degrees at almost 5:00 PM

The Bits In Between

Our days  have gotten quiet, life is settling down, it's almost time for me to get back to reality and work. Clara is doing so well. We went to the ENT (Ear, Nose and Throat) clinic to check on her snorty breathing. Her cardiologist was concerned that there was a possibility of a nerve being nicked during surgery, a nerve  that would impact how she swallows and her voice box. The ENT doctor cleared her in every way. The nerve does not seem to have been nicked and her palate seemed to have no abnormalities, which is unusual for 22q kids. He believes she just has a floppy voice box and will grow out of it-Nana Wallace reminded us that there is a lot of floppiness in our family, no big deal :)

Waiting for
Cinderella to
start

Clara attended her first cultural event-we went to see her cousin Ellie perform in Cinderella. When she wasn't sleeping, she loved the lights and glitter and wonderful costumes and colors! I cried a bit when watching a sweet little girl with Downs Syndrome dancing with the girls, assisted by another dancer. I can't wait until Clara is old enough to participate in dance or any activities she wants-and I hope there are such wonderful partners for her if she needs it. It reminded me that she can do anything she wants, this girl is strong and she will rock it.

Clara's disorganized
tongue, she always
sticks it out her
left side.

Speaking of being strong, Clara's ENT and speech therapist believe her biggest obstacle to eating is her weak cranofacial muscles. She has been eating about 3 mL orally, which is a sip in adult terms. So when speech was here yesterday, we tried feeding her on her side with thickened formula. Then she can suck in the formula and let it sit in her cheek for a second before gathering the energy to swallow without choking on it. She has become disorganized about eating, no knowing where to place her tongue and how to process everything in order. So we are taking it slow and practicing this new method, and she actually ate almost 1/2 ounce yesterday! She is sleeping more, this is definitely sapping her energy a bit, but we won't give up unless she does. In the mean time, we are still going to set up an appointment with GI to explore moving to a g tube, just in case.

Comfort for Kids
care package

 We are so lucky to have found so many online support groups to share ideas and advice and strength. The 22q group we participate in has a mom with a cute little daughter around 11 years old. She had an idea to  start an organization to help 22q kids feel better when they have surgery. It's called Comfort for Kids, go like their Facebook page and donate today! This sweet girl and her family have done a great job, and they sent a darling care package to Clara this week (it was sent last time she had surgery, but due to hospital mix ups, arrived here yesterday.) She  is fascinated by the toy with the bells on it, especially when I put it on her foot.  We have a soft cozy blanket, a bunch of fun books and DVDs, and our favorite part-the artwork on the box. Thank you to Kirsten and Amy and your family, it was so sweet!

Comfort for Kids box

I know that when I return to work, life won't stop and I'll still get lots of time with my sweet pea. I intend to keep her locked in on weekends, snuggling with me and telling her stories. But my 'vacation' will be over soon and we intend to make the best of it. We're going to stuff in all things we can, some swimming, heart mom play dates, a trip to the mall, and maybe a visit to the canyons for some s'mores. It feels good to have some control over our lives again, to know she is doing well, and to get out and play with her.

Clara's Dad

Clara-

I want you to always know how lucky you are to have picked the Dad that you did. You could not have found a more loving, sensitive, silly, giving, smart person to be your first prince in this life. When I woke him at 4:00AM that August morning to tell him we were pregnant with you, a light came in to his eyes and it hasn't dimmed a bit since. Every minute of our pregnancy, Dad took care of you and I. He brought us water and rubbed my feet and spent hours talking to you in my belly. One time, he laid his head on my belly to tell you to be nice to me (you were kicking HARD), and you went right ahead and kicked him in the face. He was an anchor,  the strongest person in the world, when the doctors started telling us about your wee heart. He was so sad and scared, but he made sure that his first priority was to keep me happy and sane and focused on the joy you were bringing us.
When it was finally time for you to join us, Dad spent the better part of 2 days awake, getting me more water, and doing everything he could to get you here safely. He was the first to see you when the doctors took you out, he walked with you and the transport team to Primary's, and he was so mesmerized by you that he almost forgot to come back to the University hospital to find me.
Dad hates to see you in any kind of pain, he will do anything to stop you from being sad. He spends hours talking to you, trying to make you laugh. He swings the hanging light around in the living room to entertain you, he is always bringing toys to your bed to show you, and he loves to blow raspberries on your tummy to make you smile. He held his breath through every midnight visit to the ER, kept you covered and protected from germs, and was ready to intercede should any medical professional not help you fast enough.

Becoming parents has changed us profoundly, you have altered our lives in the best way possible. I have loved watching Dad shrug off any tough-guy appearances to help pick bows and dresses for you, to sing silly songs and just lay on the floor and play. I am so excited to see how much fun you two have when I go back to work, because I know nothing will be more rewarding for your dad than that special time together. When you are bigger, we are going to spend every Father's Day trying to thank Dad for all he has done for us.

xo
Mom

Happy Father's Day, Todd-you are the best dad we have ever seen! 

Clara and I are lucky to have you!

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: