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!