Wednesday, May 8, 2013

Spring 2013

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WW Update

I'm a pretty lousy blogger.  Blame the kids.  They're so darn NEEDY.  Geesh.

But a quick update on my Weight Watchers quest.  It's good news.

As of yesterday, I've lost a total of 40 pounds since Caden was born and 15 pounds since starting WW and running.  I look different.  I feel different.  It's fantastic.

I count religiously every day.  I have to be careful that I don't start eyeballing stuff too much or slipping -- it's easy to do once you've been at this for a couple of months.  But generally, it's going well.

I've found that my best weeks for points and sanity are the ones when I grab my big WW cookbook, pick out 4 recipes, create a shopping list, and get a ton of extra veggies and fruit at the store.  Michael seems to like the recipes in the WW book (whew, because he doesn't usually like my more epicurean experiments) and they are generally easy to make.  Very simple, American-type fare.  I've also delved into a couple of websites dedicated to WW recipes that helps round out the process a bit.

And I'm working out much more consistently than before.  At first, it was hard to figure out how to get it all stuffed into the week without losing my mind.  But I finally got my act together and found the right nooks.  So far, it's only running, but I'm able to run 2-3 times during a work week and maybe once on the weekend.

I'm also putting challenges up for myself, which has done wonders for my confidence!  I did my first 5k (Race Against Violence) in West Chester a couple weekends ago.  It felt GREAT!  I had a solid time and ended without injury and with a smile on my face.  I immediately signed up for another and loaded a 10k training plan into my RunKeeper app on my phone.  I'm hooked again!

My next big step is meeting with a trainer for the first time, which happens tomorrow.  I'm guessing it's for a fitness assessment and then a training session?  Not sure (probably should figure that out.) I have Michael to thank for this -- it's a Christmas gift from him and I'm so happy to finally be in a place to use it.  Plus, he's watching the kids while I get my butt kicked in the gym, so double bonus husband points!

Right now, I'm averaging about 1.2 pounds lost each week.  I'm going to start adding more strength into the picture with the advice of the trainer.  I'm also going to try to keep up with the gradual increase of mileage in running and start adding in intervals to help blast calories and make me a bit faster, too.  If I've learned anything from this, it's that small goals add up and to be PATIENT! 

Onward and Upward!

Olivia, March & April

You are two and almost a half.  OH BOY are you two.  Seriously.  You've embraced the entirety of the definition that make parents of older children quake in their shoes.  We still love you to pieces, but holy hell are TWO.

You started swim classes, which is good because I needed to gain insight into whether or not it was normal to be this totally fearless in the water.  Turns out you've raised the eyebrows of your instructor.  And here we go.

I've recently abandoned your obsession with Little Einsteins, which only a month ago was where the sun set and rose.  Now, you're obsessed with tea parties and Daddy's poker chip set.  I'm considering it a wash in the parenting analysis.

You have learned the art of negotiating.  Or maybe it's tortuous wearing down of your opposition.  Either way, it will serve you well in business or law school.

Your girly side is emerging slowly.  No doubt, your favorite place is digging in the dirt, but you now allow us to put pigtails in your hair on a regular basis and possibly a headband for 10 minutes or so.  You've even requested dresses.  An interesting evolution.

We go on hikes now, you and I.  It's amazing for me, and I think you have a great time, too.  Sometimes you let Caden come along for kicks and giggles.  You especially love the felled trees ("oh no, mommy!  broken!") and walking along their trunks.  You call acorns coconuts and are getting better an not falling over rocks and roots.  When you know the hike is over, you sit in the closest field of sprouting flowers in protest and close your eyes, convinced that if you don't see me, then it's not time to go. 

You jump off the side of the pool now.  Without fear or trepidation.  The look on your face is worth millions of dollars.  And the thousands of early morning Saturday swim lessons/team practices that will no doubt anchor our weekends for years to come.  You are a fish.

You have finally really adjusted to school and stopped insisting every day that you've had a "bad day, mommy.  bad day."  This is especially good for me, since it broke my heart a little every time I heard you say that.  Now, you look forward to school and have started making friends. 

You tell Daddy and me that you love us all the time.  It is one of my absolute favorite things in the world.

We've started doing movie nights on Saturdays.  Your favorites are Peter Pan or anything Tinkerbell and anything with Pooh in it.  Popcorn is an essential part of the equation.  As is your parents on the couch cuddled under our green fleece blanket. 

You're learning more and more about frustration, patience, and waiting.  And as much as I love you, you still have a lot more to learn about all of these things.

Monday, May 6, 2013

Caden, March & April

Clearly, Mommy is not so great at keeping up with this new monthly obligation, so we're "improvising" here.  It's a good word.  Sometimes you just gotta hustle and flow.

You've grown so much, both physically and developmentally.  At your 6 month checkup in April (how did that happen so fast?), you measured 17 pounds 11 ounces and you hit all the developmental marks with flying colors.  Reach for objects?  Check.  Grasp items and pass between hands?  Double check.  Make eye contact, laugh, giggle?  Holy cow CHECK.

Speaking of laughing and giggling, it's your full-time job.  You have the most perfect, joyous smile.  It's remarkable and omnipresent.

You eat solids now, up to 3x day.  And you will, NO DOUBT, eat us out of house and home soon.  You love food.  Luuuurve.  Bibs generally are clean at the end of the meal. 

You have learned to roll and it's your life mission to stay on your tummy at all costs.  You take this mission seriously.  I admire your persistence.

You laughed for the first time.  It was your sister who made you laugh with a funny face.  I will always remember that moment.  I was standing in the kitchen, you were in your highchair, and your sister was playing with you after your meal.  It was lovely.  You clearly exist in this world for each other.

You are solid muscle.  Thick, strong legs and a wicked solid core that whips your legs around like it's nothing.  I suspect you'll be crawling soon.  And then likely move right onto sprinting.

You eat more than the average 6 month old.  A lot more.  Oy.

There are so many moments when I see your father in you.  Your smile.  How you fall asleep on your side with your hands curled up by your face.  Your insanely easy going attitude.  How bright and curious you are.  It's a wonderful thing to behold.

You still spit up.  Kind of all the time.  Our water bill has skyrocketed since your arrival with all the bib and blanket washing.

I've seen you spit your pacifier across the room.  It's a remarkable talent.

Now that you've figured out what those hands are for, you can't keep them off of stuff.  Constantly reaching for the closest object to play with, pull, tug, twist, flip, throw, and onto the next.  We've dug toys out of the basement that your sister barely glanced at, but can occupy you for a good 30 minutes.

Recently, you like to get up in the middle of the night.  Can't tell if it's teething (likely no, says the peds), diapers, or just plain boredom with sleep.  But there are days like today when I wonder if you're just torturing us for kicks and giggles.

On a related note, your dad and I drink a lot of coffee.

You have remained close friends with the three dozen or so pacifiers we have invested in and attempted to scatter throughout our lives.  A paci will generally solve almost any fussiness you have.  Generally.  With that said, you rarely fuss. 

You're now strong enough to almost sit up on your own.  You're getting close, but not quite there.  It's coming soon.  I think you'll like the new discovery.

You love fruit.  You hate green beans and peas.  HATE.

I miss you when you're away from my side.  I miss you during the day.  I miss you at night.  I tend to look at your pictures whenever I can.  It makes me feel better.

Monday, March 25, 2013

So far, so great

I've stuck with the new me plan. Dutifully counting my points and making adjustments along the way. Generally, feeling good! Been on for 3 weeks now and lost 5 pounds. Plus, hubs thinks I'm looking good...and that feels right.

My goals are to lose a good deal of weight in all -- 35 pounds. But I feel like this is possible if I take it slow and steady. Getting in exercise is hard with my schedule, but I'm always happy when I do. Signed up for a 5k in late April - honestly can't wait to feel like a runner again. Right now I'm only at 1.5 miles at a time, but again...slow and steady. I try for three workouts a week and at least one family physical activity a weekend - walks, pool time, etc. If the weather would ever just warm up, I'd get out with Caden and the running stroller!

Well, there's my quick and dirty dose of accountability! Onward and upward!

Friday, March 8, 2013

It has begun

I've committed. Jumped onto the weight watchers train. Counting those points. Keeping accountable.

So far? I'm pleased. Lost a little weight and hopped on the treadmill a bunch. Starting to feel more I'm focusing on building up runs and walking as much as possible. I splurged on a hiking pack to take the kids out with me. So far, the 1.5 mile standard rum is beginning to feel better. I'm beginning to feel stronger.

But even better? I'm beginning to feel more centered. When I manage to not over think it all, it works pretty darn well.

This is going to work. I can feel it in my bones.

Thursday, March 7, 2013

Caden, February

You are a ham, a card, a stinker.  Your sense of humor is already evident in your smile and the constant twinkle in your eyes. 

You sit up now and can keep your head aloft without help.  Thus, you're obsessed with sitting and standing, perpetually pushing up onto your feet with a huge smile. 

Your chunky quads are adorable.  So are your monkey toes.  I'm convinced you'll be able to pick up tiny things with your toes once you realize they're down there.

You sleep through the night now.  Not every night, but enough to give your mom and dad a break.  We thank you. 

You're an easy baby.  You rarely fret.  You only cry at stoplights in the car or when you're hungry. 

You love to eat.

You are now addicted to your pacifier.  The only conflict in this new found relationship is when you want to smile, which is often.  Then the darned thing pops out.  It's a terrible thing, you know.

You smile constantly. 

You have a happy soul.  It shines through your grin and sparkles in your eyes.  You will bring great joy to many people, I believe.

Right now, you're in a class full of girls.  Your teachers are so kind to you, but especially Miss Rena.  She adores you.  Thus, we adore her.

Our bottles together before bed are my favorite moments of the day.  We tuck into a cuddle and you hold my fingers with both hands.  I kiss your forehead and sing to you.  I cherish every night.

You make a lot of boogers.  You also spit up tons.  We do a lot of laundry around here.

This month, we thought you might be ready for solids.  So we propped you up in the highchair and started with the rice cereal.  You hollered like mad!  Apparently, you either HATE rice cereal or you're not really ready for solids.

You desperately want to roll over, but only to the right.  Never to the left.  I'm not even sure you know that you can go that way.

You look exactly like your dad.  It is actually a little creepy when you're together, the resemblance is so strong.

Your tiny little tuft of dark hair on the back of your head remains just that...tiny.  Like your sister, a full head of hair is clearly months away.

This month, you have waken up to the world.  You soak in as many details as possible all day long.  You're curious and joyous.  The warmth of your smile infects everyone around you, stopping loved ones and strangers in their tracks.  You have the power to shift the course of my day, wiping away piles of meaningless stress with that first flash of recognition when I pick you up from school.  You are my darling son.  I love you to pieces. 

Monday, February 25, 2013

Olivia, February

I need to be better about documenting my happiness, as well as my pain.  When things are good, I stray from writing because I'm so busy soaking it up.  Then I forget what it feels like later.  And I don't ever want to forget these moments.  As a quote I recently read states so well, "in the last analysis all moments are key moments, and life itself is grace."

You rarely stop moving.  Once you're out of bed in the morning, the kinetic energy is nonstop.  Except for when Little Einsteins are on.

It's so nice to be able to have a conversation with you now.  You know so many words!  The other day, out of the blue, you told me upon picking you up at school that you were "happy to see me."  Melted my heart.

You've picked up on this idea of friends.  You know you have new friends at school.  And you know when there are no friends around.  Yesterday, you spotted a flock of birds and commented on how many there were.  Then you spotted a lone bird apart from the group.  "No friends, Mommy.  Birdy no friends."

You were sick as a dog this month, but never complained.  You suffered through hours of nebulizer treatments, doctor visits, and gross antibiotic meds.  Not one complaint. 

You're addicted to Little Einsteins.  It's at clinical proportions.

Your favorite foods include avocado, hummus, hot dogs, chicken nuggets, milk, apple juice (if you can convince us to give you some), ice cubes, and popcorn.  Popcorn is easily your absolute favorite food ever amen thankyouverymuch.  I adore that one afternoon you woke from nap and said "Mommy, Movie, Popcorn."  My job here is done.

You love to hop.  And squat.  And run.  And spin.  Oh girl, do you spin!  There are days when we're astonished at how you continue to do all of these things nonstop for hours.  Your energy is as boundless as your smile.

Sometimes, you wake up with the most ridiculous hair.  Picture worthy mops of tangled mess.  I never comb it out or try to make it better.  It's perfect every time.

You capital L...LOVE your brother.  You protect him from your classmates' sticky fingers.  You tell folks all the time about him.  You give him spontaneous hugs and do your best to smother him with kisses.  You have so far not asked us to take him back and give him away.  In fact, all you have for him is love, and lots of it.

Seeing you search for a bottle when your brother is crying makes all those needles, doctor visits, ultrasounds, and that whacky pregnancy worth it.

You're headstrong.  You love the word no and have recently taken up saying "no, SHUT UP," with the incredulous tone of a teenager.  It's adorable and we've been lousy at stopping the trend.

You hate jeans.

One night this month, you woke up frightened by your 5 foot long stuffed puppy you had slept with for months upon months.  It has since been replaced with a 5 foot tall teddy bear and life is good again.

You are a fish.  Every time we take you to the YMCA pool,  you light up.  The smile on your face could be seen from space. 

You are fearless in the water.  You dunk your head under and sputter back to the surface grinning ear to ear.  All you want is to be able to walk in the deep end and you DESPERATELY want this.  You jump without pause off ladders and the pool's edge.  You have yet to learn the rule about "no running."

You like to take your diaper off during nap.  Red duct tape has put an end to that hobby.

You like getting up in your car seat by yourself and are getting much better at brushing your teeth.  You put your laundry away like a champ and help clean up your toys most of the time.

You amaze me.  I rush home to see you every day.  I love you to pieces and beyond.  You're fiery and confident, self assured and kind.  Your laughter is real and honest.  You push boundaries and remember everything.  You are my baby girl.

Thursday, January 31, 2013

Unsettled, Loss

I find myself unsettled and under a blanket of sadness this morning.  It's hard to put it all together in a coherent post, but I'll try.

Three waves hit this week.  We lost an amazing woman - my best friend's mom and a second mom to me.  She made the most of every moment of her life.  She was an example to me about joy and openness and acceptance.  I'm convinced that when my own mother was dying of cancer 15 years ago, they had a moment -- maybe spoken, maybe just understood between mothers -- where Mary agreed to watch over me.  She was there for every milestone.  Threw me a sweet sixteen surprise party in her basement. Took me shopping for my prom dress.  Welcomed me home from college.  Helped us move into our first apartment.  Threw my wedding shower.  Celebrated good times and supported through bad ones, always with the right balance of compassion and humor.  I found myself with hot tears streaming down my face into the wee hours last night, missing her already.

In the midst of this, I'm preparing to go back to work.  It's something that I've known was coming and I was afforded a longer maternity leave than expected, for which I am deeply grateful.  I'm convinced of my role as a working mom -- I'm a better mom and spouse.  But putting this special child, with his special heart, into a daycare setting is unsettling to me.  So many unknowns flow through my mind, under the surface of my daily routine and last minute errands.  We'll do everything we can to keep him safe and educate the staff there, but *I* won't be there for the first time in his life.  It's hard.  As an added layer, Olivia will be transitioning to this new school.  She's never gone through such a major change and I worry that it will be hard for her.  I worry.  I'm unsettled.  It's a lot to do in a couple days.

And lastly, Caden is displaying some cardiac symptoms.  I honestly didn't expect this to happen for a long, long time.  He has done so well throughout this process -- such a strong little guy.  But this week, he's cough from the RSV is lingering and I've noticed little things.  His hands are more clammy than usual.  His forehead gets cold when he eats bottles.  He's eating less and losing weight.  How much of this is related to his infection?  I have no idea.  Found myself emailing the doctor at 1 AM last night and now waiting to hear back from him.  He woke three times last night and made it through smaller bottles.  I rocked him for longer and kissed him and wondered if Mary and my mother were able to share in his beauty now.  In between feeds, I found myself reading today's news from the heart groups of babies who lost their fight and won their wings yesterday.  Beautiful children who weathered so much.  Devastated parents, numb and bewildered from the pain.  And his cold forehead worried me more.  And I hugged tighter and lingered longer.

So, I'm tapped.  Tired and dulled.  There are a dozen bottles to wash, two loads of laundry waiting for me, and a long list of supplies to put together for the kids' first day at school.  And I'm in my pj's typing away.  If experience serves, I need to just break through this with brute force.  Dive into a task, hyper caffeinate, maybe go and see a friend.  Otherwise, it will linger and taint the last days I have unadulterated with Caden.  It's hard to do.  I'm feeling very still right now.

Saturday, January 26, 2013

Long and lingering week

The plague has descended upon our house.  We're on day 7 of Caden having bronchiolitis and now Livy is sick, too.  It's so hard to watch the little guy be so sick.  We have two humidifiers running in his room round the clock, do nebulizers of albuterol and steamy showers, and lots of saline and nose cleaning...but he's still sick.  It's been a long week for us all.

With only about one week left until going back to work, I'm a bundle of different emotions.  Excitement for something familiar, yet fresh and new.  It will be nice to get out of the house on a regular basis and talk to adults.  (Talk to anyone, for that matter.  Caden is not a good conversationalist yet.)  But it also will be us marking a big change with our little ones in a new daycare.  And I'm in a bit of denial about the transition and have been putting off the things we need to do, like get labels for C's bottles, finish the 70 pages of enrollment documents, and actually read the parent handbook.  The reality is that I'm worried it will be an awful hot mess for Olivia and I dread seeing her disrupted and upset because we don't have unlimited cash for daycare.  But, we don't.  And that's life, I guess.  Sigh.

I'm tired.  Not in a way that a nap takes care of, more chronically tired.  Emotionally tired.  I've been away from Caden very, very little in the last 3 months.  I don't wish away any of that time together, but I do feel that we need to find a new balance as a family to make sure that everyone in the household is happy, including me.  The support we had hoped for from others simply never came, despite big talk.  So we have to adjust.  Have honest conversations.  Stick to our promises to each other.  It's tough.

For now, though, it's about getting through this plague of sick on our home without having to take C to the hospital or keep O home from school too much. I'm hoping that a good night sleep has brought a fresh perspective to all.  We are in desperate need of one.

Wednesday, January 16, 2013

Projects and Progress

The house is quiet right now.

I find that so incredibly hard to believe that I dare to even type it out loud.  SILENCE.  Wow.

Caden is asleep in his crib after successfully making sure his mobile animals didn't get off track or forget to twirl and topple in circles.  I'm thrilled to have a day that doesn't require me to go to a doctor appointment or grocery store.

Random thoughts have been flitting through my head recently, none of which require their own post, but most of which keep me occupied round the clock.  It's been a happy month so far.  Lots of freedom to control my time around Caden and getting to see friends. I still have some projects I want to get through before heading back to work, but I'm not actually nervous or anxious yet about the transition.  Just maybe a little sad to see my last maternity leave go away.  It's been wonderful to have the time at home to get our house in order in ways that are really hard to do while working full time.

Some stuff that's done:

  • Organized pantry...finally!  Put in some great organizing bins on the shelves to keep my junk in order and those plastic drawer sets underneath.  Just enough space to keep it generally together and make me feel a lot better about knowing where things are for on the fly meals.
  • Cleaned out hall closet.  This has waited forever and a day.  We have more coats then we could possibly need and Olivia has a million hand me downs from her cousins.  It was a mess.  I used a hanging shoe organizer to get the scarves/gloves into order and a hanging sweater holder to get the wraps and Olivia's stuff together. Walmart had some great canvas/wire bins for $5 that is keeping re-gifting stuff together on the shelf.  The closet still has the wire shelving original to the house (which I HATE and have replaced nearly everywhere), but it's just not worth the money or effort to switch it out.  
  • Finished Caden's room.  No really, it took us that long!
  • Enrolled kids in new daycare
  • Took down Christmas (oh good golly that was fun. not.)
Next project:
  • After living here for almost 4 years, I'm finally going to fix my walk-in closet.  It's both about the general lack of efficiency of the room itself (which drives me insane every day), but also about spending some time and energy focusing on my clothing and personal needs.  I have old, barely used clothes in there that don't look good on my body.  I have lots of stuff there need to be purged and things that need to be cherished properly (like the Hermes scarf gifted to me by my sister).  
Still to come:
  • Getting all of our "important papers" filed and into the basement, rather than collecting dust on our dining room table
  • Begin the mini-redecorating of the formal living room, which includes painting, having Michael craft long, beveled shelves for above the piano, and creating a photo display of our favorite images
  • Putting away all the outgrown clothes for both kids
  • Finish flipping my winter clothes and packing up maternity ones for sister
  • Clean up the workout area in the basement for use of treadmill
All of that said, I know it's of little interest to others, but it helps me get my head in order.  It's also really satisfying to feel this energized and capable to tackling longstanding projects while still spending time with Caden.  It's been a nice leave.  Only three more weeks to go!

Wednesday, January 9, 2013

Caden's Photo Journey

When we were diagnosed with Caden's heart condition, I spent countless hours on the internet trying to get an idea of what was in store.  It was terribly frustrating because there simply is so little out there.  Personal blogs were incredibly helpful and a combed the archives of many of them seeking images of what it could be like for us.  It helped me a great deal, so I promised myself I would put out the photos of Caden's journey when I could.

I hope this is helpful for families about to go through this.  It goes without saying that this is our journey, and each is unique.  But for those with similar circumstances, hopefully this will be a little quiet comfort of what could be ahead.

Here are our basics:

prenatal diagnosis: truncus arteriosus with VSD @ 20 weeks
mom: diabetes type 2 (insulin managed), velementous cord insertion, polyhydramnios
delivery: c-section (second child) @ 37 weeks, 2 days
hospital: CHOP, delivery in Special Delivery Unit
repair: open heart surgery @ Day 3, 10 mm conduit and Dacron patch
days in CICU: 10
days in Step Down: 4
discharge: Day 14

Assuming the position in delivery
The Special Delivery Unit is a wonderful place, with excellent clinical care.  We were 2 weeks early and in the middle of Hurricane Sandy, but everyone rolled with it like it was any normal Monday.  This was my second c-section, so I knew what to expect.  The epidural was placed very well (thank goodness!) and the staff was kind and supportive.  The anesthesiologist was really great -- he even put on YoYo Ma on his ipod for me to listen to!  I had a remarkable amount of nausea for the drugs, but we did our best to keep it under control.

Michael was able to join us and the environment was similar to my last section at Bryn Mawr Hospital.  What was different was the secondary room adjoining filled with its own specialized equipment to assess Caden and a bevy of professionals in there.  I was frightened and anxious, but not because of the clinical environment....more just the epidural and worrying about my daughter out with the nurses waiting for us.  Oh, and the whole "major surgery" thing.

Getting assessed

First touch 
 Michael was able to bring his camera into the delivery room and snapped as many photos as he could, including this one of him getting assessed.  I never learned his apgar, but I know it wasn't perfect.  He did sat well, though, so I was able to see him a few minutes after he was delivered.  It was so very, very short of a visit, though.  By the time he and I touched, he was taken down to the CICU.  At the time, I didn't feel panicked or worried about that, since I was battling my own nausea and discomfort.  He looked good and was in good hands.  My job was to stop puking and figure out if my daughter had dismantled the nursing station already.

Day 1: some oxygen support, still a little swollen from delivery
Day 1: wrapped up in the supportive holder and under the heat lamps
You can see some of the omnipresent monitors here.  The foil heart is for heart rate.  The white and blue stickers (also on the other side of his belly) were for respiratory rate.  The nasal cannula for oxygen support.

Being held by mommy
One of the most surprising -- and joyous -- realities for us was that Caden was stable enough to be held those three days leading up to surgery.  He had a ton of cords to navigate and it was awkward to get him situated, but he was in our arms within hours of delivery.  And that was good.  Really good.  He was a robust 7 pounds 9 ounces, which is big for heart baby, but small in our experience of newborns.

Bath Time
Bath Time
It was nice to have some "normal" things happen while in the CICU waiting for surgery. Things like baths were a delight.  It was a brief moment when you felt like things were light hearted and fun.  Even in that intense environment, it was a welcomed thing.

Right before surgery
This is one of the last shots of Caden before surgery.  He slept so much the hours leading up to actually going back for surgery (it was about 6 hours of waiting, getting bumped by other cases).  Family was able to make it to the hospital in time and got to hold him, but it was hard for us.  Very hard.  Another post - another day.  But this is one of the hardest photos for me to see.

About an hour after returning from surgery
After surgery, he was covered with leads, cords, gauze, monitors, etc.  The nurses were amazing explaining to us what was happening and what each line was for.  It was a ton of information, but we paid close attention and it paid off.  Understanding what each of these lines was doing was very helpful in putting into context the when and why they were removed.  Knowledge provided lots of peace of mind.

On his head, you'll see a mesh bag thing.  It's actually covering dozens and dozens of eeg lines, all adhered to his scalp.  This is a relatively new protocol for any baby who has been on bypass at CHOP.  They monitor the baby's brain waves for 48 hours post surgery, as well as set up a video camera that records the same period of time.

This shot has him back on the ventilator (taped to his nose/face).  He was originally taken off the vent for doing well during the surgery, but was placed back on pretty quickly afterwards.  Ultimately, it was respiratory issues that kept us in the CICU, not cardiac issues.  The day after this photo was taken, his right lung collapsed.

Also in the photo is a gnarly dark tube coming out of his right chest.  This is draining the blood from his chest cavity.  It was removed on day two after surgery.  You'll see his incision is covered in gauze.  Dr. Spray was able to close his chest after the procedure, a preference at CHOP when possible.  They were also able to get his ART line into his belly button.  An ART line is an arterial catheter -- the way they access his artery and administer meds.  It's helpful to have this accessed through the belly button when possible, so it saves using arteries in arms and legs for later surgeries/interventions.  It's hard to see, but there is also an RA line coming out of his belly.  This is a line that goes directly into his right atrium to measure pressure and, if necessary, administer emergency medications.  (Isn't medicine amazing?  I know!)  This was the last big line to come out in the CICU and the one I felt the most nervous about.  Our nurses were comfortable having us handle him carefully with the line in, but it was nerve wracking.

Back on the vent 
Broader view
Closeup of the vent
After the lung collapse, we spent much of our days staring at his saturation levels, learning about how the machines measure (and how they make mistakes), and switching between three different kinds of oxygen support.  This was brutal for me.  He struggled painfully with some of the vent types (the nose mask was the worst) and there was one respiratory specialist who was really bad at placing the equipment.  (In fact, I almost yelled at her a couple of times and was relieved every time a colleague showed up, instead!)  The process took patience for us and was a long one.  Healing takes time.

Different nasal cannula, one he was much more comfortable with, but also caused irritation to his tissue, so often had to be switched to an alternative.

Yet another setup -- this time a nose cover.  He hated this cover.  HATED.  The bubbles are a normal response to forced air in his throat.

Nose cover and the incision and chest tube stitch
It wasn't very long before we could see his incision.  Air is a great thing for healing, so the gauze is removed pretty quickly.  The little pucker on the bottom right is from his removed chest tube.  It looked like it would leave a big scar, but at 2 months, it's barely noticeable.

Typical pose for week after surgery, bedside in CICU
We spent a lot of time at the hospital, balancing being there for as many hours as possible and keeping as much normalcy at home with Olivia.  There were absolutely nights when we both went home.  I read so much early on about how parents sat vigil and that's what we should do.  There's a lot of pressure to sit by the bedside all the time.  But the reality is that (assuming your child is stable enough), it's GOOD for parents to get out of the hospital and rest properly.  On the nights he was stable and we were waiting for more progress on his lung inflating, Michael and I would leave the hospital at 4 to get home in time for dinner/bed with Olivia.  Then we would sleep in our own bed until early the next morning, leaving for the hospital around 4 or 5 so we could actually talk to the overnight nurse, who leaves at 7 am.  It was the right decision for us and gave us the strength to get through those weeks.

Under bilirubin lights to help with jaundice
Bili bed
 Another minor thing Caden had was some jaundice.  He would do round the clock light therapy using this bed thingie.  Apparently, jaundice happens a lot with babies like Caden who aren't in the position to feed normally the first weeks of life.  The lack of non-IV food means the gut doesn't get moving right away.  No poop = no dumping of the bili.  Thankfully, his levels came down as expected while we waited for his lung to start working again.

A wide view of the setup in CICU

Example of the IV cuff (right arm) and the different lines post surgery

Holding Caden after surgery, once he was on a nasal cannula (and not vent)

Pod 4, Bed 3...with a window

After 10 days in the CICU, we were finally released to go to the StepDown unit.  Oh holy night...was that a good feeling.  It's just a different turn on a hallway we walked for weeks at this point, but it felt like a different world.  The setup is different.  Two patients per room, far less oversight by nursing staff, and much more involvement by parents.  And boy was it welcomed!  I was thrilled to be there and decided to do full time at this point, to provide feeding consistency for Caden.  It was super hard -- no joke.  And I'm usually a tough cookie.  But it was important to be there for understanding his care.  I made a strategic decision on the first day in StepDown -- turn off the monitors.  It was a standing order for the nurses.  I didn't want to continue to stare at the monitor to see his saturation percentages and respiratory rates.  It was one of my best decisions during the process.  I started looking at my son.  Gained confidence that I could get a sense of when he was struggling, when he was fine, and what to look for.  It was really helpful.

A wider view of the StepDown room, including the portable breast pump and some of the wires

The couch where I slept for the last week

View of the interior courtyard at CHOP, from our StepDown room

Another view from StepDown
I know I'm putting off a lot of this story for later, but our days in StepDown -- and our final release -- is a really difficult part of the story to write.  It was a very dark time for me and pushed me beyond what my emotional limits were.  I was shredded by the end and got to the point where I couldn't even have conversations with nurses any longer.  Michael did our discharge process while I cried on the Bridge (a crossover hallway between CICU and StepDown).  I'll write about it later, when I'm ready.

Bath time at home with big sister

Holding steady at 3 weeks post-op

Plumped up and doing well at 8 weeks we are at 10 weeks at the writing of this post.  We've weathered our first couple months home as a family of four.  It's been amazing.  The relief of a healthy baby boy, the joy of discovering his personality and meeting his needs, and sharing his life with his sister.  I am thankfully not under the heavy blanket of post partum that I experienced (hard core) with Olivia, and truly enjoying my last maternity leave.  I have a little under four weeks left to go and will savor every moment happily.  The medical journey is never simple, but every single moment has been worth it.  Every.  Single.  Moment.

10 weeks post-op, big bag of smiles!