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. 

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.

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.

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.

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!

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

Monitor

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

So...here 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!

Caden!

Well.  We had a baby.

Since it has been two months (good grief!) since my last post, I have a LOT to update.  I'll put the quick and dirty here first, but plan on doing more detailed posts on things like our time in the CICU, the SDU, etc, for our sake and the possibility that other parents might find this blog while looking for experiences.  Lord knows I spent a lot of time out on the interwebs trying to get perspective in those weeks leading up to the baby's arrival.

Here he is...Caden Ellis.  He's a peanut.  His sister loves on him constantly.

He decide to come early.  And in the middle of a hurricane.  CAUSE THAT'S HOW HE ROLLS.  I should have known, since his father was born in the middle of a snow storm.

I went in for a routine OB visit and echo, doing my best to squeak in these appointments before Hurricane Sandy hit Philadelphia, and started bleeding after my pelvic exam.  Bleeding a lot.  Within minutes I'm in a wheelchair heading to the SDU triage room.  Um...wow.  My original appointment was at 9 in the morning.  By 10, I was in labor.  By noon, I was contracting every 2 minutes.  And right as the storm was hitting, I was being wheeled into delivery. Thank goodness, Michael made it in time and Olivia was with him.  What a story that all turned into!

Caden was born at 3:16 on October 29th (exactly 1 month before his sister's birthday) and weighed 7 pounds 9 ounces.  He had good apgar scores and was stabilized quickly.  I'll write a good deal more about this day and the details of what it was like delivering a heart baby at CHOP/SDU, but it was generally all good.  We were thrilled.  I love my husband for being there and dipping deep into his well of patience for our family's sake.

The first couple days were a blur of meeting nurses and doctors, pumping like crazy to help promote milk production, and walking back and forth between the CICU and SDU in my robe to see this little guy.  Because the storm had shut down everything -- including being ale to drive on the roads in PA or DE -- we literally weathered those first days just us.  It was hard on everyone, but part of our story.

Caden's repair was a surprise.  They were telling us that we should expect to go the following week because the storm backed up the list and he was so wonderfully stable.  Then, in the blink of an eye, it was his time.  We learned his surgery was confirmed about 9 hours before he was on the surgical schedule.  Day three.  It was surreal and frightening.  We handed our baby off to a team of anesthesiologists in a cold hospital hallway and wept in a way I never knew before that moment.  The hardest day of my life.

After hours of preop and moved surgery times, the actual procedure flew by like lightening. He was on bypass for 33 minutes.  His repair was a success.  Dr. Spray was able to use a 10 mm conduit of donor material that he feels should last him until he's 3 years old, possibly as long as 5 or 6 years old.  The VSD was repaired with a man made patch.  There was no issue with his coronary sinus.  He was stable.

And then...it was done.  Months of waiting and worrying that felt like a lifetime.  Countless tears.  The most important part was done. Just like that, his heart was repaired and now he (we) could focus on healing.

Again -- the full story requires a post of its own, so I'll save details for then.  He spent an additional 7 days in the CICU, taking advantage of the best nursing and medical team I have ever had the chance to witness.  His cardiac status was nearly perfect, with a minor early blip that was due to electrolytes rather than damage.  His most daunting challenge was a collapsed right lung two days after surgery.  On and off of various breathing contraptions, this was the daily struggle to get back to 100%.

Once he was stable enough, we moved to the step down.  His status continued to get better, but mommy and daddy were struggling.  (Especially me, as I was there 24/7 at that point for pumping/nursing.) On the 14th day after delivery, we were released to go home.  No words describe how relieved we were.  And exhausted to the bone.


Since then, life has been pretty great in our home.  Olivia adores her baby brother.  ADORES.  His cardiac health has been remarkable.  He sats at 100% on room air and has had no symptoms to indicate that he is struggling.  His routine EKGs are perfect and, as his last follow up visit, he was given a reprieve of doing a post-op echo by the cardiologist because he has been doing so well.  Aside from a pesky cold, he's golden.

The family routine is starting to settle in and become manageable.  I find that I have more patience for the process (and Caden) this time around.  It is, of course, much harder with two and always keeping in mind his special circumstances.  The first 6 weeks included a LOT of doctors appointments.  Time with the cardiologist in Philly and his pediatrician in Exton.  He has struggled -- like Livy did -- with feeding and reflux, but now is doing well on Zantac.

The days fly by and Christmas is upon us.  We've had to restructure our expectations.  Fewer decorations, more family time.  Fewer fancy dinners, more naps.  Olivia is experiencing her first *real* Christmas, pesky Elf included.  It's amazing to watch her face transform with wonder when seeing the lights at Longwood and holiday train displays.  Christmas Day will be magical.

I spend much of my time experiencing wonder, too.  Wonder at how grateful I am that we are safe, healthy, and together.  I am truly fulfilled.