Friday, December 21, 2012

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.


Thursday, October 25, 2012

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)

Tuesday, October 23, 2012

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? 

Friday, October 19, 2012

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.

Tuesday, October 16, 2012

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.

Monday, October 15, 2012

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.

Monday, October 8, 2012

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.

Thursday, September 27, 2012

Plodding along

Feeling a little better this week. 

(Whew...sighs the two people who actually read this blog!)

The emotional wet blanket isn't completely gone, but it's not dictating how my days and nights are.  I am, however, deep in the mire of third-trimester exhaustion.  I TOTALLY forgot how this felt!  Michael reminded me it was the same last time...clearly, I blocked it out.  It's the same as early pregnancy, but with the caveat that it's actually harder to run around and catch up with Olivia nowadays. 

I haven't been to the pool in about a week.  I think I just need to kick myself back into the habit, no matter how tired I am at night and how impossible it feels to get up that early.  It does help and there's not much time left to keep up the habit.

Otherwise, I have much to share on the update front, but not much time to type it all out right now.  We had a marathon day of appointments down at CHOP on Monday, including a tour of the CICU and CCU, as well as the special delivery unit.  Little Man is developing well and growing just right.  He's around 4 pounds 11 ounces right now -- right on target.  We're continuing to manage the insulin/GDM issues, but they're basically under control.  From here on out, I'm visiting weekly for biophysical profiles and echos.  Next week, I'm eager to have our first echo in 5 weeks. 

Wednesday, September 19, 2012

Trying

I working on it all.

This morning I made it to the gym again for a swim.  A trifle of a 20 minute visit, but it's all I have right now and I think it's helps physically.  My pelvis isn't hurting as much from sitting all day.

At lunch, I got my hair cut.  Nothing terribly special, but something that makes me feel better about the way I look.

Tonight I'm going to therapy.  I'm not sure this therapist is willing to really challenge me or push me at all, but at minimum she's willing to talk to me about this sadness and what can be done, if anything.  (Sometimes I wish my therapy sessions were on the bad days...it always seems that I arrive at her office with a smile and my tears are hidden at home.)

Last night I tried to be more present for Olivia when I could.  Smiled more and was (hopefully) a tad more fun.

This weekend we've decided to push through our last to do list items.  It won't solve it all, but I think it will help me feel a little less pressure from all the little things and take away some excuses for me to blame my grumpiness on the status of our "getting ready" plans.

53 more days.

Tuesday, September 18, 2012

54 Days

One day, likely 53 days from now, I'll look back on this post with relief or humor and think, "wow, I fell apart early this time."

But right now, 54 days feels like forever.  I've been mired in the bad parts of third trimester.  Physically, the pregnancy is starting to take a toll.  My hips and feet hurt, my ligament pain is increasing, and even rolling over in bed at night is difficult and painful.

I'm also struggling with the emotions of this all.  Sometimes I just get waves of sadness and despair out of nowhere.  Last night, I was laying there after the tv was off and Michael was asleep and just starting crying. No reason.  (Or every reason, whichever way you look at it.)  It's all so much and I'm just mired in it every day and exhausted in all possible ways.

And there are 54 more days of this.

It's horrible, but I dread most of my days.  I'm even finding myself being short with Olivia out of sheer exhaustion, and at the same time deeply concerned that there's a distance growing between us.  She's a Daddy's Girl....always has been.  And it hurts -- a hurt only a mom can understand --  when she rejects me for whatever reason.  Recently, I think it's because I'm generally less fun and can't do a ton of stuff I used to.  Last night, she refused to get changed for bed by me and insisted on her Dada.  Broke. My. Heart.

All of this is small.  I realize it is.  At least, academically, I get it.  But when I feel it...when I experience these moments in time and the discomfort and anxiety...when I feel my life right now it's huge and overwhelming.  I want to give up, switch off the power and crawl into bed and say goodnight.  And I can't seem to do that. 

The worst part is that I'm not sure there's much I can do.  I can't make any of this go faster.  I can't create energy where there isn't any.  I can't make it easier to run after Olivia or force her to savor the quality moments we do have.  I can't stop the dread and the fear.

Or maybe I can, but I have no energy to try.  I'm tapped right now and it's Tuesday afternoon and each week feels just like this.  Tapped before we begin and trudging through the rest, hoping my husband doesn't care that he spends most nights in front of the tv alone because I'm going to bed at 8...or even 7:30.  Staring at the list of remaining tasks that simply doesn't budge because I have no energy to try at the end of the day and our weekends are prioritized elsewhere.

Essentially living in this land of waiting, stuck in an emotional purgatory. 


Thursday, September 13, 2012

Random nothings

While this week seems to be draaaaaging along in stubborn fashion, I'm starting to feel less overwhelmed and anxious.  I'm coming to realize that the peace and panic come in waves, so just ride it out while it's here. 

I finally made it to the pool yesterday and, for once, didn't feel guilty about it.  Michael did fine with Olivia at home and it wasn't all that hard to get in the pool on time and spend a little time.  There was a HUGE masters class while I was there and I was terribly, terribly jealous.  Took me back to when I actually could swim with a little speed and would have so much fun with different sets in each workout.  Perhaps one of the things I'll ask for around the holidays is a swim set book -- one of those waterproof ones with fun workouts you don't have to come up with on your own. 

I also started reading (finally) the book I downloaded on to the Kindle recently to help me calm my nerves and find a little "center" in all of this chaos.  Called A Wise Heart, it's basically a discussion of Buddhist philosophy as it applies to modern psychology.  I read most of it back when we were enduring our first infertility/IVF fight and ate it up like candy.  It's wonderfully written and forces me to slow down and focus on the techniques of the approach, all the while thinking "how can I use this?"  I suspect I'll load my Kindle up with books like this and maybe some fiction fluff for those long hours at the hospital. 

In the mean time, I'm trying pace myself and focus on my work -- there's certainly enough there to keep me busy!  If I find myself zooming again, I'm going to try my best to break the cycle by getting up and out of my desk, walk around, talk to someone, and then try again.  And if I can...get to the pool again tomorrow.  And maybe Saturday, too!

Tuesday, September 11, 2012

Weaving my own basket

I'm the tiniest bit of a wreck today.  And it's only a Tuesday.

But I'm off.  Terribly off.  It's hard to describe, but the best way to is that I'm anxious and distracted.  I bounce from 'to do' list item to the next, trying to feel like we're ready or prepared for the baby's arrival, the whole time knowing that it's simply not getting any damned closer.

And that's been hard this week. 

It's all little things, which fall from my sieve of a mind.  Cleaning under the bathroom cabinet - cause heavens if my family members see some mess or can't find one of the 50 rolls of toilet paper we have waiting for them.  Buying a lamp for Olivia or ordering the prints for the nursery.  Does the kitchen pantry need to be cleaned?  Yes!  Time to cull the toys in the living room to make room for a swing.  Oh holy hell...I forgot to put checking to see if the swing even works.  Every time I think I get closer to closing down a project/room/space of crazy in my brain...there's one other thing to do.
 
And can we talk about my weight?  Seriously?  I just passed my weight from my last pregnancy, with many more weeks to go.  Heaviest I've ever been in my life.  I literally make people gasp as I pass them by and I just want to scream I KNOW...I GET IT...I AM AS UNCOMFORTABLE AS I LOOK.  The only thing that's worse is the look I get from folks who don't believe how much more time I have to go.  Or the coworker who very pointedly asked if I was sure I'm not having twins.  Or the one that "feels like I've been pregnant forever!"  Seriously?  Eff you all.  You should know better. 

And I'm struggling to put this nervous energy anywhere productive.  I'm getting through projects at work well, but my brain is bouncing off the wall.  When I go home, I get through as much as I can, but am often too tired or completely unmotivated to tackle a big project before bed.  And no matter how many times I look at the calendar, it's still over 8 weeks until he arrives.  Oh good lord it feels like it's been 8 weeks forever.

No doubt my emotions have been double dipped in hormones with a side of sprinkles.  When oh when can I finally get to a point in my life when waiting isn't such a chore?  When I can graciously gaze forward in expectation while enjoying the calm of today.  Cause it's all calm over here.  Not really a lot of doc appointments yet.  Liv is healthy and amazing.  Work is busy in a good way.

SO WHY AM I A FREAKING BASKET CASE???

I need a day off.  I need a day for myself - or even just a half a day.  When there's no work, no kid, no need to put on tents and tight shoes.  I need a vacation, but there's not a single one in the future.  Is it horrible that I almost wish I were sick enough to stay home just so I could rest?  Sigh.  LE SIGH.  Such drama in this prego's brain.

Thursday, September 6, 2012

Torn

I remember feeling torn during the end of my last pregnancy.  Wishing one minute that she would hurry up and arrive and the next that she would sit tight until I got that one last project done.  It was never a terribly dramatic roller coaster, just passing whims.  The only exception to this was the last couple weeks, when I just wanted them to TAKE HER ALREADY DAMMIT.  But that was because I was tired and hurting.  Well duh

This time is different.  The knowledge that we'll have this experience with Little Man's heart right after he's born is a gift -- a blessing that we can plan for and get the absolute best medical care in the country for him.  But it's also a curse.  The flip is that we spend the last half of this pregnancy worrying. 

The worry comes in many forms for me.  I worry about how to navigate parenting Olivia well when he's critical, when he's more stable, and finally when he's returned home and just plain special.  I worry about his heart.  How will it look when they finally get in there?  Will there be surprises?  I worry about surgery and death.  I worry about "complications" and pain and even death.  I worry about my own physical recovery from surgery and healing properly when all I want to do is stand next to his bedside whispering to him.  I worry about breast feeding and failing at it again, this time with higher stakes.  I worry about money and the total lack of it for bills and Christmas.  I worry about juggling a loving and caring family and their expectations for how to help in this time of crisis.  I worry about bonding with him through all this fear. 

And, even with all of this on my mind every moment of the day, I wish he were here already.  This holding pattern is a challenge.  To emotionally stay in the "what if" zone and only be able to prepare for what you think might happen, all the time knowing that it may completely change, is HARD.  I'm getting fatigued.  We're drawing near to the end of our task lists and starting to feel honestly prepared for his arrival.  But, that leaves us with question: what to do now?

Waiting is so damn hard.

Thankfully, we had a little distraction this weekend with a trip to the beach (the last for the season) to see GrandDad.  Olivia has been Skyping with him, which is nice to see.  I always worry that they don't have enough time to spend together, so this trip is important.  And then...not a whole lot to do except sleep when we can, tie up loose ends, and get those last couple of projects done.  A little more nesting and lot more soaking up Olivia and then...8 weeks from now...our world finally changes again.

FINALLY.

Tuesday, September 4, 2012

Sleepless Night

Oh good grief, that was a long night.

Generally, Olivia does fabulously in her "new" big girl bed.  She's a champ -- transitioned to it well and has gone to bed for naps and nighttime without much protest ever.  It's a wonderful blessing.  Honestly, one that I am so, so thankful for every day.

But, last night she was stuffy and it blew up in her/our faces.  Poor thing woke around midnight and wouldn't settle again until after 3.  Michael and I tag teamed, just like the days when she was a little tyke, and it helped, but it meant that neither of us has any quality sleep under our belts today.  What we realized early on was: we have no idea how to handle a "bad" night in a big girl bed.

None.

I've not done a lick of reading on the topic, so when she started screaming and crying, I didn't really know what to do.  The only nugget I held onto was "never get in the bed with the child."  So, for the most part, we didn't.  (Poor Michael had not heard this advice, so he thoughtfully tried (in the 2nd hour) to calm her that way and I kind of kicked him out.  Sorry, hun.)

So I spent a good part of last night very pregnant sitting on a super uncomfortable step stool next to her bed reassuring her that it's okay to go back to sleep.

Epic fail.

Finally, we gave up.  There's always that wall that parents hit (or at least, we do) when it comes to middle of the night antics.  Once we hit it, FEEL FREE TO CRY YOUR FACE OFF, KID.  We're listening in the other room, but not going to play along anymore.  Let the neglect begin.

Broke my heart to listen to, but damned if it didn't work.  Took about 15 minutes of theworldiscrumbling sobs and myemotionalpainwillrequireyearsoftherapy screams...and then silence.  Blessed silence.  It only left 2 more hours of sleep for us grownups, but it was an important lesson to learn for the next time.

Cry it out is our friend.

Thursday, August 30, 2012

Keeping promises

So, today I got back in the pool. 

I'm letting that sink in a bit, because it feels really monumental to me.  Let me explain.

It's great, of course, to get some exercise in while pregnant and swimming is a lovely low impact way to blahblahblah.  We all know this stuff.  Going for a swim does great things for my el prego self...period.  Duh.

But that's not really why it feels so monumental.  It feels like more because it's a return to something that I loved so much, long before my love for Olivia or Little Man even existed.  Swimming was one of the ways that I proved to myself that I could do things...valuable things with my body.  I spent many years ignoring or purposefully breaking down my body, pretending that I didn't care.  An ignorant, blase approach to my own finite gifts. 

And then I began hurting.  Much of my pain was emotional, but it surfaced physically.  I ached.  I developed skin rashes.  I started weezing and it turned into full blown asthma.  I was allergic to everything.  I avoided stairs and bathing suits and curvy dresses.  Then I started avoiding people and places and, well, life.  It didn't happen over night, but one day I woke up and realized that the most beautiful things about me were in tatters on the floor by my feet, grey and shriveled from misuse.

So, among other things, I started to move.  I bought a pair of running shoes and started running the length of blocks, then 1/4 miles, then a whole mile in a row.  I remember that day.  I remember calling my future husband...whom I literally had just met the week before...and confided in him that I just ran a full mile in a row without stopping and I was so proud.  And he didn't think I was a loser.  I knew he was the one.  I could be broken in front of him and he would be proud of the pieces because he could see the whole. 

And it became a journey.  Running went to swimming went to biking went to triathlons.  Short ones went to medium ones went to long ones.  I found so many of my limits during the process.  Most were imaginary, and I figured out how to get around them.  Others were real, and I learned to swallow my pride, reframe, and refocus.  It stopped being about moving rather early in the process.  It was my conduit, my method of transformation.  The irony?  I'm not terribly good at it.  I'm generally last in everything.  I've ended more races than I can count after the volunteers have broken down the finish line.  I've passed innumerable water stations packed up and done for the day.  But it was important for me and I appreciate it.

And then we tried to get pregnant and it didn't work.  And much of my time became about finding the right doctor, getting on the right protocol, and timing meds and visits to help us be parents.  Infertility turned into IVF turned into a high risk pregnancy.  There was no space for me to keep up with my old lifestyle.  Technically I could have, but it would have broken me.  I have learned how much I have to give and know now to stay inside that boundary.  Not for safety, just because I don't want to live on that ledge anymore.  I don't have to anymore.

Then I happily focused on Olivia.  Perhaps to my own detriment, I turned all eyes on her and her development and happiness.  I managed our household.  I started a new job.  I learned how to become a working mother.  It was decidedly without grace, but I kept it all together and came out the other side as a pretty good mom.

And then we were back.  Back in the stirrups.  Told by the doc not to wait -- IVF immediately.  Do not collect $200 or regain your emotional footing.  Certainly do not get back to running again.  IVF turned into our second miracle baby.  And for about a week we were in heaven...amazed to have this good fortune.  But then it was low betas.  And then an enlarged yolk sac.  Weekly discussions of imminent miscarriage.  Chart notes that read "grave" and "guarded prognosis."

Funny.  At the time, we thought that was the worst it could get.

We made it through all of this -- genetic testing, diagnosis of CHD, preparations for open heart surgery -- because of our marriage.  It's a good one.  Solid to its core and we both work hard at that. 

But...this whole time...I've focused elsewhere.  I've known what's good for me, what nurtures me and makes me feel proud and empowered, but I've ignored it.  Failed to make the time and priority.  Grabbing that "everyone comes before mommy" cliche by the hand and pretending that it looks good on me.

It doesn't.  And I'm starting to learn that I don't have to be the cliche if I don't want to. 

So, getting into the pool this morning was important.  Staring at my alarm at 5 AM and wishing I could just sleep a little more...but not...was about getting back to me.  Getting back to the person who was willing to go out on a limb and make promises to herself and keep them.  I used to do that all the time.  It helped define the edges of my character.  It helped me be me without apology. 

This morning I kept my promise and it felt good. 

Monday, August 27, 2012

Third CHOP visit

Today was our third visit at CHOP and one that I was eagerly anticipating.  Michael didn't join so we could save his vacation days for when we need them more, so I flew solo on this one.

The echo went well -- no change in diagnosis and no surprises.  His truncal valve is developing well, which is a huge relief.  Looks like he is squarely in the type 1 variety with a healthy truncal valve.  Good news.  Dr. Deganhart was pleased and so was I.  I confirmed that we didn't need to quarantine the house after Little Man gets home (i.e., pull Olivia from daycare), which is a huge relief.  She adores daycare and it's the most consistent and sturdy thing for her during these weeks of transition -- the possibility we would need to pull her was not a pretty one.  Another bullet dodged.

Next up was meeting with the psychologist.  It was the first time I met with her and super helpful to talk through how to manage the emotions surrounding all of this and getting questions to the unknown. I came away with some great suggestions for helping to get the support we need from our family and friends, as well as some coping ideas for the weeks to come.  Plus, it's just nice to talk to a mental health professional that actually gets what this all feels like!

Next up with the ultrasound.  It was quick and that felt good.  (It's the longer ones that worry me most!)  Little Man is growing well, measuring in at 55% and 2 pounds 13 ounces.  The placenta (and it's whacky umbilical cord) is very high up in the uterus, blessedly far away from the cervix and all the trouble that could cause.  Another piece of good news!

Right after the ultrasound was done, the OB (Dr. Martinez) and a visiting fellow came in for the consult.  Thanks to an amazing midwife who lives out near us and her input, the team decided that I do not need to move closer to the city after all.  Wahoo!!  Of course, this could always change, but for now I'm safe to stay at home and continue to work all the way up to delivery.  He's going to monitor my sugars, too, and check my insulin doses each week for the duration.

Lastly, the awesome midwife, Karen, and I worked for about an hour to get all my info into the computer and most of the visits planned.  Oh....AND A DELIVERY DATE!!!!  Looks like we do 2 week visits for the next month, then weekly for the last 6 weeks.  It's a lot of time at the hospital, but will be worth it in the end, of course.  Goal now is to get to 11/12/12...our newly scheduled due date!

I'm exhausted.  That's enough update for now.

Tuesday, August 21, 2012

Some pool time for Little Obi

Perhaps one of my favorite photos of the summer.

For as adventurous as Olivia was in the big pool for the first time, she still held on close to Mommy.

Love her.

Something for me...

Tonight I'm doing something for me.  This is a big move on my part.  Aside from a pedicure here and there and an occasional solo trip to the grocery store, I don't do much for just me.  It's a bad combination of "total cheapskate" and "control freak who must be productive at all times."

I muscle through stuff usually and it's not always ever pretty.  It's also no fun for the hubby or strangers who come within 5 feet.

So, today I'm getting my old gym membership back.  I used to be a fitness nut.  Long-distance triathlons and some such.  Lots of miles logged on my bike and hours in the pool or on the road.  Fertility treatment always seems to bring this to a screeching halt and for both pregnancies I have struggled to get back onto track. Once Olivia was my #1 priority, fitness just became an aspirational run here and there.  Sad to my inner voice wondering where I got lost in the transaction, but a trade off I made with my eyes wide open.

But the problem is that I feel really, really lousy all the time right now.  My feet hurt constantly.  My calves are knotted up.  My pubis and my back holler at me throughout the day.  I rarely sleep well.  And I'm soft.  Not just prego soft, but out-of-shape-prego soft.  Why?  I don't move enough.  I can do more.

I resisted a lot to the idea because of the time commitment.  Seriously...if I could find an extra 90 minutes each day, wouldn't it be better to just sleep?? But Michael was insistent and I have given in. 

Last night I stopped at Modell's for a suit.  Attention pregnant ladies: Do NOT attempt to purchase a non-maternity suit when 7-months pregnant and wildly out of shape.  It is comical and frightening, all rolled into one ball of overstretched lycra straps and paunch.  Gross.

For now, I'm stuck with my flowery and super inappropriate beach suit, but it fits and is technically a bathing suit.  I get to pair this flowery number with a racing cap and goggles, cause that's how I roll.  Tonight that will be me...the beached whale in a flower skirted suit and a triathlon cap eaking out slow 50s in the lap pool.  Tickets start at $1. 

Sunday, August 19, 2012

Ease, or lackthereof

I'm not sure there's ever a time when you can relax with a pregnancy like this.  I keep thinking that if I can get another thing done on the list to prepare for the baby, then I'll start feeling better...less anxious.

It's not working.

Don't get me wrong, it feels good to be done with the big girl room and see Olivia adjust so wonderfully to it.  Michael finished the walls and carpet cleaning in the nursery today and it's great to know that we're in the home stretch to have our place ready to be a family of four.

But the unease still follows me.  Usually just under the surface.  It deadens the impact of things, leaving a dull thud when a bright report would usually ring.

Part of my worry is what this third echo will find.  I'm not yet feeling comfortable that we've learned about it all.  Perhaps I spend too much time reading the experiences of others, whose babies' heart conditions are compounded by a menu of complex related issues.  I haven't relaxed in this pregnancy since our first lousy lab finding, about 7 months ago.  It's been a long year for us.  A really long year for me.

I have to be patient and get through one more week until we go to CHOP for our third consult, our first with the OB team there, who is now taking care of me full time.  In the mean time, we've made some great progress at the house getting things ready and the to do list is shrinking.  My anxiety may not be, but at least the list is!

I'm also tossing around the idea of a gym membership for me.  Spent some time swimming this weekend at MomMom's pool and it felt so wonderful.  Truly amazing.  I want to find some time to do it between now and the delivery, and hopefully after things settle and Little Man is home again.  It's a tough call, since I'm not big on wasting money and it's hard to find any free time for myself except very early in the morning.  To get a swim in before work, I'd need to leave the house around 4:30.  That early start, a full day of work, and then our typical nights with Olivia?  It's a long day, but it might just be worth it.

Friday, August 17, 2012

A whirlwind week

This is not a week I would love to experience again.  Let me explain.

This week, my house of cards fell apart in a flourish.  After innumerable calls back and forth between three perinatology offices, my local OB, and CHOP, we finally figured out that nobody but CHOP really wants to deal with my issues.  The perinatology group that has treated me up to now, monitoring sugars twice a week and doing all our genetic testing, feels we cannot continue there.  The big concern is that once non-stress tests begin, they would have to admit me to a hospital not equipped with a high enough level nicu should I show signs of labor or a problem.  I get it...I really do.  Do I wish we could have resolved this months ago and not waste hours of time?  Sure. 

The second choice perinatology group is my local hospital.  While they have an appropriate nicu (and would, gasp, be convenient!), they also were inappropriate since they refused to track my sugars/insulin dosing.  They would only perform the non-stress tests and wanted to get yet another doctor (endo) involved for the other piece.  Never mind.

Meanwhile, folks at CHOP weren't talking to each other and confusing the whole thing by transferring my care over from all of my current providers without my knowledge.  Turns out it was by mistake (I think they saw transfer at 37 weeks and mistakenly thought we were already at 37, but we're only at 27 weeks).  But, after debate, they decided they really did want me full time now. 

It was exhausting.  Monday alone had 8 separate phone calls related to this, all during the work day.  It's enough to have this CHD issue, but to also have full blown diabetes and a potentially dangerous cord insertion...it's just overwhelming.  Every conversation with a healthcare practitioner is complex.  They're ready to shotgun an answer about what to do after the first part of the explaination...and then I have to slow them down and say, "yes, and there's also this and this and this going on."  As my local OB said...I hit the trifecta of complex pregnancies.  Joy!

Admittedly, I got depressed and angry for a day.  Pissed off and frustrated.  You pick the adjective.  But, I've calmed down and realized (after talking to my Dad) that this is a blessing in disguise and now all my care will be seamlessly coordinated at CHOP. 

Why did I fight this initially?  CHOP is about an hour drive from my office, or 1 1/2 hour drive from home.  Considering we're about to begin 2xweek testing, that becomes mighty burdensome on my work schedule.  And honestly, I don't have any other energy to offer work in exchange.  When I was pregnant with Olivia and had tons of testing for diabetes, I simply worked late on the days I was out of the office.  I just can't do that now.  First of all...it's more time away.  I could easily miss 2-3 hours for each non-stress test day.  There's no way I can tack that onto the end of the night twice a week and not exhaust myself.   Rock...meet hard place.

Regardless, it's decided.  All CHOP, all the time.  After this was set in stone, I spent two days out of town traveling for work meetings.  I usually really enjoy these trips -- they suit me.  But this time was more difficult physically because of the pregnancy and I found it was super difficult to manage my diabetes care.  (What I do on the road is meet with donors, which always involves some sort of dining.  It's never really possible to excuse myself right before we eat to go into the bathroom for an insulin shot!)  But, I'm back now, unpacked and happy to be home.  Probably one more trip before the baby arrives, but I'll worry about that in September.

So, needless to say, this has been a complex week.  I'm tired and feeling a tad dulled from the whole experience.  The weekend is almost here, but already full of tasks and obligations (inlaws and volunteering), so I'm not sure how much rest will really happen.  I keep thinking that I have to slow this all down, but it seems so very hard to do with a house to run, a baby to prepare for, and a family to see.  Maybe I need to practice saying "no" more often to folks.  Never been a strength.

Thursday, August 9, 2012

Let's pretend that never happened

Food poisoning?  A 24-hour stomach bug?

Whatever it was, it was definitely the most miserable 24 hours of my recent history.  Horrid only begins to describe the experience of vomiting, nausea, and whole body aches that were my yesterday. Every time the sea would stop rocking my internal ship, Little Man would flip or kick and start it all over again.  So sick for the whole day that I couldn't even call my doctor.  Ate a handful of cheerios and a cup of water and generally moaned all day. 

Thankfully, today is better.  Upright and back at work, although very shaky still.  Stomach and back hurt like crazy, but nothing like yesterday.  This pregnancy is sure running me ragged!!  Only 91 days to go...

Tuesday, August 7, 2012

Putting my personal crazy to work

I know that people think that I'm crazy.  They also think that I'm way to big to be due so far away, but that's a post for another day.

I am a little crazy, I guess.  I need to do things ahead of time so I don't worry my own head off.  I'm remarkably resilient, when I know that I've done all that I can.  So I often fill my time before big events with stuff.  Lists...tasks...to do's...etc.  It works for me.

Last weekend I did a big freezer meal project.  I had purchased the book Fix, Freeze, Feast and pulled some recipes that seemed interesting and easy, hoofed my way to BJs to spend an incredible amount of money at one checkout (ouch!), and then spent 6 hours in the kitchen cooking. 

In the end, I had aching hips and feet, but about 25 main course dinners ready for when Little Man arrives.  I'm going to do a few more (some simple pastas and batches of tomato sauce), but for now I'm pleased with the result.  The final choices were...

Chicken Curry with Peas -- 3 dinners
Pork Ragout (crockpot) -- 3 large dinners
Royal Thai Chicken Thighs -- 5 dinners
Beef Fajita Setups -- 4 dinners
Beef Barley Soup (crockpot) -- 4 dinners
Mariachi Chicken Rolls (this still needs to be assembled this week) -- 6 dinners

Granted, it was a little early to do the project, but I really wanted to start moving on this and not have it hang over my summer.  It was tons of work, but I actually feel like I'm starting to get close to being ready.  Too soon?  Sure!  But I work at a school and come Labor Day (ha) I will be swamped with more work than I can shake a stick at.  Having our home ready for Little Man in advance is how I'm going to quiet the voices in my head.

Next step is to get Olivia's big girl furniture delivered (tomorrow) and her room set up.  The closet is complete, so it's a matter of just moving over her clothes and starting this whole big-girl-bed transition.  (Fun times!)  Then time to update the nursery.

The other thing knocking around in my head is maybe planning a mini-trip for us before the summer is up.  Something small (just a weekend?) to maybe a lake.  A little retreat for us three before we become four. 

Monday, August 6, 2012

UPDATED: First Round of Questions w/Answers

Just for future reference, here's what we learned from our visit...The fonts are all messed up, but you get the idea.

Prenatal

Who follows our prenatal care for:
1.     gestational diabetes management continue with Main Line perinatal care
2.     tracking growth will be part of monthly visits during regular ultrasound (distinct from echo)
3.     non-stress tests this will be ordered by local OB and like to begin around 32 weeks; frequency each week will be determined by status of diabetes management; can be done at Paoli hospital through Main Line perinatal care
4.     regular OB appointments continue with local OB until week 37; also continue to see CHOP OB for monthly visits (at same time as echo/ultrasounds); exclusively see CHOP OB starting at 37 weeks

Are there opportunities for assessments to happen at satellite sites (e.g., Exton CHOP)?  No.

Our OB failed to order a spina bifida test at 16 weeks and does not recommend doing so now that the anatomy scan is complete.  Is there any risk of spina bifida not already being discovered? Not a concern - ruled out in ultrasounds

How do we find out whether we will be able to deliver at the SDU? Today -- yes, approved for delivery.

Are there any new risks for pre-term labor/delivery because of the heart condition? No.

Are there changes that could happen in utero that would alter his diagnosis and/or prognoses?  Yes, but no changes at this moment.  Likelihood of surprises being seen on later ultrasounds grow more and more unlikely as weeks progress.  Doctor made it seem like an outside chance.

This pregnancy has been qualitatively different than the last -- more fatigue, earlier swelling, earlier and continued headaches.  Are there precautions I should be taking to help avoid preterm labor differently than last time? Did not get to ask this question -- our OB exam was cancelled and moved to next month, when we'll see a midwife/nurse practitioner

Delivery

When will the c-section be planned? 39 weeks; no specific date yet

Will the c-section differ at all from a "normal" section, e.g., incision location, recovery time? No.

Will family be able to see us in the SDU recovery room after delivery?  Will they be able to see the baby? Did not ask.

How long is the typical leave for disability authorized after c-section? 6, 8 or 10 weeks? They will work with what we need for employment purposes.  Seemed to think that 10 weeks disability would not be unreasonable.

How much are we going to actually hold him between birth and surgery? How much will our contact with him be restricted?  Possibly.  Really depends on getting him stable and the number of tubes that he'll need to be connected to and what method of connection.  If the tubes allow for holding, there is a priority for parent contact. 

What efforts are made to establish early bonding between mother and child like skin-to-skin contact, breast feeding? This is driven by what his immediate medical needs are at the moment.  If tubes and IVs allow, direct contact is encouraged for both parents.  Lisa (program manager) acknowledged the importance of kangaroo care and its health benefits.

How is pumping handled?  Are there diets recommended for Mom during those first weeks while pumping to boost the nutritional value of the breastmilk?  Are hospital-grade pumps available for rental?  Cost? These are questions for the cardiac lactation consultant (she is PhD level and extremely knowledgeable).  We will have a pre-delivery consult with her as the delivery approached (timing?) and then work closely with her after delivery.  There are pumping rooms and machines available throughout hospital and lots of support.

Is there research that indicates a line of study using cord blood and/or cord cells relevant to his condition?  What is your recommendation re: cord blood and/or cord cell banking? No.  Research is limited in this area and existing research does not point to the usefulness of cord blood or cells.  Future research could very well lead to other areas of harvesting (e.g., bone marrow, blood cells).  The cardiologist did not recommend banking at this time for this reason and the fact that banking for future use in growing valves would need to be done in a more highly regulated way than available in current banking standards.

Surgery + Recovery

How soon after birth will the surgery likely take place? Within one week.  Cannot tell if this means 2 days or 7 days.  Still unclear.

How will they keep him alive between birth and surgery? He will likely be able to be stabilized without use of considerable intervention because of the nature of his defects.  He may be on oxygen and have IV lines placed, but the majority of the lines attached to him will be for monitoring purposes, rather than the administration of medication. 

How long is surgery?  How long will he be on bypass? This will be discussed with the surgical consult, later in the process (when was unclear).

What is the typical recovery time frame between surgery and release from hospital? 2-3 weeks post surgery (not delivery)

What are the more common complications from this surgery? Feeding issues, bleeding, infection, and change of heart rhythm

Of the deaths for those being treated for TA and similar procedures at CHOP, what have been the causes of those deaths? Typically poorly functioning truncal valve or an infection secondary to the surgery

What is the likelihood that an additional surgery(ies) will be needed again in the first year? Assuming nothing unexpected, additional procedures is unlikely. 

What feeding issues might he face?  What approaches are used to minimize those risks? We didn't dig into this topic yet, but cardiologist said it's unclear why CHD open heart babies struggle with feeding, but many do.  His feeding issues will likely be the reason why he might have a longer stay after surgery (assuming no medical issues like bleeding or infection).

Will family members (daughter, grandparents, aunts/uncles) be allowed to visit the NICU before surgery?  After?  Are there restrictions on these visits (duration, times of day, etc)? Yes, depending on his health and our preference.

0-6 Months

What will those first two weeks look like?  How do families plan ahead for care for older sibilings?  Didn't get a chance to really ask this question, mainly because the program manager was pushing the process forward because of time.  Sense that this could be discussed more with the social worker in the future.

How do parents who both work typically manage the first 6 months?  Is it reasonable to expect to have Mom return to work after a 3-month maternity leave or is the timeline longer? A 3- or 4-month return to work (and full time daycare) would be reasonable, but depends highly on his progress.
 

Will he be able to attend daycare?  Yes. Generally, when would he be first able to be cared for in a daycare situation after his discharge from the hospital?  3 or 4 months, depending on progress Are there questions we should be asking our facility about their training, experience, etc? He might need to go home with feeding tubes, so experience with this is helpful.  The doctor also mentioned medical daycare as an option, which was confusing since they tend to be for those children who have much more complex needs.  Will continue to follow upon this, possibly with the social worker. 


After his return from the hospital, is there any period of time the doctors will recommend his older sister be removed from daycare?  If so, usually for how long? Not clear on the answer for this.  Our notes have that "yes," she could be pulled out, but I don't remember the timing or circumstance for pulling.  Should re-ask this at our next visit... .


What do we need to do to make our home safe for him to come home (e.g., air purification, special monitors, etc)? No. 


Living with CHD

How does this heart defect affect his life expectancy? Hard to say because only recently (~ 40 years) started doing the surgery.  Cardiologist didn't see any reason why this would necessarily shorten his life expectancy, so long as nothing emerged that was unexpected.

Will he be on long-term maintenance medication? Unlikely.

Will he have any type of monitoring implant (e.g., pacemaker)? Unlikely


Are there secondary effects of OHS and/or CHD on his development?  e.g., language acquisition and speech, ADHD, cognitive, fine motor skills, etc.  Quite possibly, but unclear exactly what.  There are generalizations that can be made about behavioral and learning development in children who have CHD and in children who have OHS at an early age.  The cardiologist explained that it's unclear right now whether these are differences due to the defect (or any underlying cause of the defect) or the impact of surgery and/or bypass.  I feel this is going to be a line of questioning that will continue to evolve and likely need some research on our end, as everyone in the room wanted to stay away from specifics.  (Which I understand, since any differences can manifest in each individual child, well, differently.)


Would he have worse outcomes if diagnosed with more common problems like asthma, allergies, etc? Unlikely, but treatment of those conditions might be different based on his cardiac status at the time the issue arises.  For example, albuterol may not be a medication that he could use for asthma maintenance in the same way as others because it might interfere with electrical signals across the heart tissue.  But generally, he'll tackle illnesses like any other HH child.

Thursday, August 2, 2012

Update

So much to update!  Our second consult went well at CHOP.  In the moment (and for much of the rest of the day), I was stuck in a funk and finally realized that it had little to do with the news we received and more to do with the stark reminder that all of this is happening.  Bygones.  Moving on.

Good news #1: Diagnosis has not changed.  Still truncus type 1, which is the easiest of the types to address through surgery.  VSD is still there, but no changes.  And, thankfully, no surprises.  I don't think I'll ever get an echo during this process and not worry about finding something novel that wasn't seen before because of the limitations.

Good news #2: The truncus valve is appearing to be healthy at this moment.  For some kids, it could be thickened or leaking, both of which are problematic.  From my reading out there on The Nets, I know that this can change after the surgery and the trunk (in its new role as aorta) has new pressure and flow demands.  But, for now, it's good news.

Good news #3: We've been approved to delivery in the Special Delivery Unit.  (No, Ice T will not be our OB.)  It's the only unit of its kind in the country and we are very lucky to get this approval.  It brings up some slight complications, but more on that later.

Good news #4: He's growing on target.  Not too big (a worry of the GDM) and not too small (a worry of the CHD).  At 24 weeks 2 days he was weighing in at 1 pound 7 oz.  Normal is good.  Very good.

Good news #5: This is actually GREAT news for mama.  Cardiologist said that he would likely be appropriate for and safe in a daycare environment within 3 or 4 months after delivery.  Wahoo!  Don't get me wrong -- I'm not pushing this poor kiddo out the door.  But, Olivia has thrived in her daycare and we trust them immensely.  I want to make sure that Little Man has all the benefits of that care, stimulation, socialization, and structure that Olivia has had over the last couple years.  Not to mention the fact that I'd like to keep my career, thankyouverymuch!

Good news #6: Our insurance will be footing the bill for ALL of this adventure.  That's the special delivery costs, the prenatal care, the testing, and finally the open heart surgery and recovery.  All we have to do is finish up paying our $4k out of pocket (which is almost done thanks to IVF earlier this year) and focus on his health.

Bad news #1: The OB wants me to "move" to the city for weeks 37-39 so that I can be within 20 minutes of the delivery unit.  He didn't go into detail about what was driving this decision other than his concern that I might land in a regional hospital with a fast and furious labor and have to airlift little one to CHOP and not have the benefits of the SDU.  I get it, but I'm not convinced.  It would be hugely disruptive for everyone in the family and my work -- perhaps even harder than balancing the post delivery period of time because I would not be around to help Michael out.  Olivia will be all messed up and I'll be miserable because I don't get to spend those precious last weeks with her before we are a family of four.  No -- the OB and I are going to keep talking about this and look for other solutions.  More to come... .

Bad news #2: The ultrasound tech spent a lot of time imaging our umbilical cord, which we later found out was for good reason.  Turns out it's inserted incorrectly.  It's called velamentous cord insertion and can be relatively harmless or quite dangerous, depending on the positioning with relation to the cervix.  Right now, mine is in a safe place, far away from the cervix.  If it migrates closer, it becomes scary enough to possibly warrant a preventative hospital stay or an earlier induction to avoid this from rupturing and causing the baby to die in utero.  All very scary, so we're all keeping an eye on it. 

Bad news #3: No coordination.  Sigh.  Seems that there is very little coordination or combining of visits for this coming three months.  I need to see my local OB until 37 weeks, at which time I switch completely over to CHOP.  I will also see the CHOP OB during this time.  I need to keep seeing my perinatologist for monitoring my sugars and adjusting insulin doses (but thankfully that is largely done over the phone and not in person).  I'll need to plan on the usual non-stress tests that many women get in the last months of pregnancy, but should expect more of them (2 x week) earlier.  I also need to see the cardiology team regularly at CHOP, too.  The CHOP folks will coordinate their time together and I'm grateful for that, but it does mean full days in the city (away from work) and lots of time on the road.  Looks like I'm going to be doing a lot of driving to and from the doctors' offices this summer!!

* * *

All in all, it was a good visit.  At the time, I was freaked out and depressed, frankly, because of the reminder of how serious and out of our control this is.  But the more I talk about it and share the news, the more I realize that I have a lot to be thankful for throughout this process. 

Right now, my big tasks are to support Michael so he can finish up the big girl room and get started on updating the nursery.  I'm also going to try to do a couple things each week that are positive things that look forward to when a healthy baby comes home from the hospital.  Yesterday, I finally picked out my Mother's Day present of a new (and bigger!) diaper bag that is ready to hold enough stuff to care for two young kiddos.  I also picked up a cuddly blanket and hangers for his closet.  This weekend, I'm hoping to venture out to the Carter's outlet and get some clothes for this little tyke. 

Onward and upward!