Friday, December 21, 2012


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.  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 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.