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.

The inside of my head is such a fun place right now. You totally want to visit.

So, in the spirit of brevity, let's just pretend that here is where I complained about the swollen fingers, feet, knees and butt.  And mentioned the aching back, bags under my eyes from lack of sleep, and constant nausea and heat flashes.  Briefly, I touched on my inability to get up from a chair without wincing and looking like a ancient worship mound.

...

Now that that's out of my system, the real pressing issue in my head (WHICH IS SUCH A FUN PLACE RIGHT NOW) is whether we're going into labor any time soon.  Or having our water break. 

I've combed The Internets and found that indeed I'm at risk (yippee!) for early labor or PROM...premature rupture of membranes...for this particular pregnancy.  Most reliable source says 40% of polyhyramnios cases (where the poly is caused by a congenital abnormality) break their water early.

YES.

That is what I would like, thankyouverymuch.  Frankly, going into labor would be fine, too.  Anything at this point would be welcomed, so long as it's safe for the baby, etc.  I contract all day long now.  They're clear, painful, take-your-breath-away contractions that do....nothing.  My poor little (massive) uterus has no idea what to do.  It thinks I'm carrying a small whale and wants it out, but has no hormone backup singers to make that happen. 

Yesterday I nested.  As in full-force, no holds barred, Nested.  Laundry, cleaning, organizing, grocery shopping, more cleaning.  It was a sudden burst of energy and a compulsion to "get ready."  I even felt compelled to shave my legs.  HOW'S THAT FOR A SIGN OF IMPENDING LABOR.  HUH?  I picked out a cute work outfit that would look just great to go to the hospital in because I'm simply that desperate to have this child that I would fool myself into thinking it has anything to do with my own personal style on any given day.

...

This post is going to be hysterical in a few months when I look back and do the math and realize that the baby didn't come for another 17 days and how silly I was for thinking he would come any sooner. 

Right now, I don't find the joke all that funny. 

So I continue to note my unproductive contraction times, take my frustratingly normal blood pressure readings, stick myself with totally helpful insulin needles, and limp along my day.  (shakes fist at sky)

(rant over)

19 days oh for goodness sakes the complaining!

Apparently, I want to whine through the last three weeks of this pregnancy. 

It's true.  Just ask my husband.  I have good reason to whine -- it sucks.  But I'm stuck in this mental rut.  It's been hard to NOT focus on how crappy I feel.  Here's the basic diatribe...

My back hurts.
My belly is HUGE.
I can't stand without pain.
I can't walk without pain.
I can't stop peeing.
It hurts to pee.
I can't sleep.
I can't roll over without pain.
My back REALLY REALLY hurts.
Constant heartburn or nausea.  Or both.
I'm tired of injecting my insulin.
I'm tired of remembering to take my sugars 2 hours after eating anything.
I'm tired.  All the time.
My hands and feet are swollen.
My FACE is swollen.
I have no energy to take care of myself, like nails and brows.
I feel fat and wildly unattractive.
My cervix hurts often.
When he moves, it hurts now.  Still cute, but hurts.

There you have it.  A partial list of the things going through my mind.  The list that makes me obsess all day long about the chances that this could possibly end sooner than 19 days. 

Horrible, right?

Sigh.  I'm just done.  Cooked.  That's all.  I have to consider stopping work a week early, but even that has it's own problems like "what the heck would I do at home every day to keep my mind occupied?"  But right now, the physical stuff is getting harder faster than I predicted and working all the way up to delivery may not be an option.  And why am I so resistant to just CHOOSING not to working that long?  Why is it so hard for me to just do what most moms do anyway.  WHY DO I INSIST ON PLAYING THE HERO all the time? 

Oy

After another night of unexplained and unproductive discomfort/contractions, I'm officially tired of this.  I know that it's wildly selfish of me and I should be (and am) thanking my lucky stars nothing becomes of these episodes, but they wear on me.  I'M TIRED.  Oy.

Felt really lousy all day yesterday at work.  Very tired all day, regardless of my morning cup of coffee.  Had a lunch meeting in Villanova with a colleague that was very interesting, but drained me even more.  Even though I forgot my insulin shot beforehand, my 2 hr reading from lunch was a remarkably low 78.  I usually don't show numbers like that unless something is going on.  Then the back pain started at work.  Lower back ache for hours.  By the time I got in the car to come home from work: contractions.

Ugh.

Michael was nice enough to take over all the parenting last night so I could lay in bed.  But I was so ridiculously uncomfortable between the tightening belly and the constant back pain.  It just drained me completely.  Thankfully, tylenol helped enough to get me to sleep.

But here we are.  Next morning and I have a whole day of work ahead of me, the back pain is back, and I had my first contraction at 7 AM -- earliest one so far.  Going to slam fluid and already took Tylenol, but I have a board meeting this afternoon where I presenting, so no chance at going home for rest.  Being full term pregnant and a full time working mom is DAMN HARD.

I really don't want to do this, but I wonder if I need to be more realistic about how long I can keep up working full time.  I don't even know what options I might have for these last three weeks, but this is MISERABLE.  So not a happy camper this week.  23 days to go.

By example

I spend some time each day filtering through blog posts.  I have a considerable reader gathered over time.  Some are important, some less so.  Many are about food or gadgets or nonsense.  Most keep me connected to internet friends who are out training.

For the most part, they're easy reads.  But then sometimes I get hit over the head with a sentence or thought that really makes a mark.

I was reading a favorite food blog (of all things) today about the author's mother and her rules of the house.  And one rule struck me.

"Be braver than you think you can be."

I love this advice.  I can see myself saying it to my children, whispering it in their ear when playground tears blur their vision.  Saying it the 100th time when I drop them off at college.  I can feel the weight and importance of that sentiment, to give yourself the credit to be stronger than you think, to have faith in your own offerings.  Yes.  I like that.

But, it wasn't the part that struck me. It was followed by:

"Take my lead."

For some reason, this follow up took my breath away.  Take my lead.  It calls me on the carpet as a parent to live my own best advice.  There's a simplicity there -- no excuses allowed.  It presumes a history of bravery on my part, a habit and example illustrated for my children over time. 

As grown ups, we tend to complicate matters with caveats and excuses.  I do it all the time.  And as valid as these constructs may be, in the end...one just needs to be brave.  Period.  Being brave isn't about facing the easiest moments, the ones without challenges and complications.  It's about facing those fraught with confusion, fear, and the unknown...with grace. 

Take my lead.

Powerful stuff.

One month to go

According to my countdown clock, we have 27 days.  According to my calendar, exactly 4 weeks from now I'll be a mom again.  What a relief to finally get within a month of this delivery!

So happy to have had an OB appointment without surprises.  No new diagnoses, no new "conditions" to worry about or weird symptoms.  Just a straight up: "you're super pregnant now so have fun with that."

And they're right.  I'm pregnant in multiple states at this point.  My AFI is still high (about 25), so I have the belly of a full term mom.  I can barely breath most of the time because there's just no room for air down there.  Getting shoes on and off is a joke and my XL pregnancy clothing no longer covers my bump.  I'm one big hot pregnant mess.

This weekend was a roller coaster ride, too.  Around 3:00 on Saturday I started contracting.  FOR REAL contracting.  As in, totally distorting my belly, clamping down, owowowow contracting.  We timed them for about 5 hours and they went from 5/hr to 8 to 10 to 8 and then down to nearly nothing.  THANK GOODNESS.  I was convinced we were going to the hospital.  Not that he was going to be born, just that I would be admitted and hooked up to an iv and poor Michael and Olivia would be along for the ride. 

Bullet dodged.

The likely culprit was dehydration.  That damned dehydration can seriously get you if you don't watch it!  But, at least it stopped on its own and I can be careful about fluid and rest.

Which brings up the fact that I have to finally bite the bullet about some things.  Like asking for working from home, something I've avoided for a while but really have to think about now.  I want to try one day/week at first and see if it helps break up how hard it is physically to get to campus and get around.  When Friday rolls around, I'm completely thrashed and it takes a full weekend to get back my strength.  I also need to cancel some things on my social calendar after all.  20th reunion is pretty much out of my reach, at least the evening parts of it.  Our play date with my friend Johanna?  Sadly not a good idea.  It's not the end of the world at all, just something I've avoided doing. 

In the mean time, I'm feeling a little more excitement for the impending birth and started actually feeling like things have a chance at going well.  It's been hard to think about him coming home or being a part of our family -- my head has been so stuck at the hospital for so many months.  Only recently have I really begun to see this as a possibility, instead of seeing only breathing tubes and incision scars.  I wouldn't go so far as to say I'm feeling peaceful about it, but I'm feeling less fear.  And that's a good thing.

Two CHOP visits and new terms

It's been a couple weeks since my last update here and two visits have come and gone...both interesting.

I don't have the energy to go into painful detail about either visit, but in general Little Man is doing well.  He's growing properly (unlike Olivia, who was already a chunker at this point!) and nice and active.  My sugars are generally okay, with a spike and adjustment here and there.  The staff at CHOP seem pleased with where I'm keeping them, so I should feel proud.

Last visit was a marathon visit, with an echo and card consult, OB, BPP, u/s and various and sundry poking.  The echo found something new...possibly another defect in this little guy's heart.  "Unroofed coronary sinus" was the phrase Dr. D used.  He explained that there is a normal set of veins that run between the atria and they help the two chambers to communicate and coordinate movement.  There is an indication that Little Man's heart is missing the "roof" on this path, providing for too much blood to cross and messing up the communication.  Dr. D said that we wouldn't know much more until he was born and could have his first echo, then the surgeons would have a better idea of what we're dealing with.  Until then, he said not to worry too much (ha!).  Thankfully, his truncal valve is growing well and not showing any signs of regurgitation and there's no indication of stenosis. 

It didn't really hit me until later what this was...another diagnosis.  I googled and searched and reached out to fellow heart moms for more information, only to get very little.  Not much out there about this and only a fraction of that is for peds.  Terribly frustrating, but at the same time, there's not much we can do but wait and see.  I'm starting to grow numb to the waiting and seeing part of this.

Unfortunately, after I was done with this conversation, I went to see the OB and caught up on my own health.  After some probing questions, we determined that I was having too many contractions and pelvic pain to be on my feet for the rest of the day.  Thankfully, I was still closed and posterior, but the doc sent me home for strict bed rest for the remainder of the day.  Even though I didn't actually get home until after 2 that afternoon, it was a welcomed chance to catch up on rest.  I got an earful from everyone at CHOP about my activity level and being sent home that day really hit me.  No playing around with this pregnancy...I have to strictly follow doctor's orders.

Since then, I managed to get more rest thanks to my MIL and FIL, who took Olivia for the afternoon on Saturday so that Michael and I could have some time to catch up on...well, everything!  Liv had a blast and did laps when she finally got home, grinning from ear to ear about her day.  I finally slowed down long enough to think and it was very helpful on a thousand different fronts.  Amazing what a little time can do!

Today, I had another OB visit and BPP and yet another surprise.  Geeze!  Thankfully no emergency, but still.  Seems I have developed a good deal of fluid around the baby -- measuring over 25 and technically polyhydramnios.  One reading alone doesn't really help understand whether it's important or what to do, so we wait to see how things go in a week.  What I can tell is that there might be some indication that little man is having a hard time swallowing (something that worries me a GREAT deal, obviously).  If the fluid continues to develop, it looks like there are a number of things that could be done (bed rest, amnio, early delivery), but I have no sense of what becomes the approach of choice for a heart baby pregnancy.  Hopefully, we'll know more in a week!  At least I figured out why I feel like such a whale!

That's all the update I have energy for right now.  One day, I hope to look back on all of these dense posts and "remember when..." we were going through this ancient history.  For now, thought, it's worth getting it town on paper, so to speak.