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!

Our first round of questions

It's been almost a month since I've been to CHOP and, in that time, we've learned a considerable amount about truncus arteriosus, open heart surgery, recovery, and loving your way through the process.

But there are still a LOT of questions on our minds. 

So far, these are the ones we're bringing with us for our second consult on Monday.  There might be a few last minute additions, but generally this is where our headspace is right now. 

Prenatal

Who follows our prenatal care for:
1.     gestational diabetes management
2.     tracking growth
3.     non-stress tests
4.     regular OB appointments

Are there opportunities for assessments to happen at satellite sites (e.g., Exton CHOP)?

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?

How do we find out whether we will be able to deliver at the SDU?

Are there any new risks for pre-term labor/delivery because of the heart condition?

Are there changes that could happen in utero that would alter his diagnosis and/or prognoses?  

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?

Delivery

When will the c-section be planned?

Will the c-section differ at all from a "normal" section, e.g., incision location, recovery time?

Will family be able to see us in the SDU recovery room after delivery?  Will they be able to see the baby?

How long is the typical leave for disability authorized after c-section? 6, 8 or 10 weeks?

How much are we going to actually hold him between birth and surgery? How much will our contact with him be restricted?  

What efforts are made to establish early bonding between mother and child like skin-to-skin contact, breast feeding?

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?

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?

Surgery + Recovery

How soon after birth will the surgery likely take place?

How will they keep him alive between birth and surgery?

How long is surgery?  How long will he be on bypass?

What is the typical recovery time frame between surgery and release from hospital?

What are the more common complications from this surgery?

Of the deaths for those being treated for TA and similar procedures at CHOP, what have been the causes of those deaths?

What is the likelihood that an additional surgery(ies) will be needed again in the first year?

What feeding issues might he face?  What approaches are used to minimize those risks?

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)?

0-6 Months

What will those first two weeks look like?  How do families plan ahead for care for older sibilings?  

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?  

Will he be able to attend daycare?  Generally, when would he be first able to be cared for in a daycare situation after his discharge from the hospital?  Are there questions we should be asking our facility about their training, experience, etc?

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?

What do we need to do to make our home safe for him to come home (e.g., air purification, special monitors, etc)?

Living with CHD

How does this heart defect affect his life expectancy?

Will he be on long-term maintenance medication?

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

Are there secondary effects of OHS and/or CHD on his development?  e.g., language acquisition and speech, ADHD, cognitive, fine motor skills, etc.  

Would he have worse outcomes if diagnosed with more common problems like asthma, allergies, etc?

Handling

"How are you handling the news now that you've had more time?"

I stared at the question in my inbox from a friend.  I don't know the answer, really.  How am I handling things?  Probably well on some fronts, not well on others.  I can talk about it without crying.  I feel stronger when I share it outloud with others.  I have kept busy with safe things like planning meals and picking out curtains.

But last night I slept on our couch.  Had a fight with Michael about how to process -- and he had bare criticism for my approach and no patience for my feelings.  I felt alone and received the message loud and clear.  Some of this is ugly and some folks aren't ready (or never will be) for your ugly.  Figure out where to put it in the mean time.

I feel alone a lot.  Searching.  My sister has been great, but she's really the only person I've had to talk to outside of my marriage.  My "best" friend has had a rough year (and that's minimizing the reality) and simply isn't available for me.  My Dad is creating distance because he's scared and doesn't know what to say, changing the topic when it's raised and responding with silence.  My other close friends are scattered -- on vacation or in far off lands. 

There's not much to lean on, so I just don't lean. 

I also don't sleep much.  Who knows if it's stress or the pregnancy.  I struggle with fatigue and anxiety every day.  I have a hard time finding the energy for great food choices to help manage my diabetes, opting for easy solutions instead.  I'm distracted at work.  I'm concerned about money.  And my self esteem is in the crapper thanks to a bigger pregnancy and my constant failure to find the time to regularly exercise. 

"How am I handing things."  Sigh.  Depends on the day, I guess.  I get up every day and make the most of this, knowing that it's going to get harder but frustrated that there's nobody who is able to (or willing to) acknowledge how hard this will be.  I'm there for my daughter and keep my best smile on my face and lightness to my voice when we're together.  I go to work and do the best I can.  I watch our new reality strain our marriage and insert distance between me and my husband.

Truth is?  I don't know the answer.  Today, I just don't know.

Reality

Nothing like crying to reality tv.  Lots of grace in that, for sure.

Before my wedding, I watched lots of bride programming.  Before buying our first house, I watched lots of home beautiful programming.  Before my babies, I'm like a moth to the flame of baby programming.  I can't help it. 

Last night, I found myself crying during Pregnant in Heels when an excited couple were holding their brand new baby after birth, cuddling and oh'ing and ah'ing.  It hit me...we don't get to do that this time.  I don't know how it will actually be orchestrated, but those wonderful hours and days following delivery where this tiny swaddled ball of love is tucked into your arms to feed and generally look cute will not be part of the picture.  Maybe I'll get to hold him.  What day, how long, how often...all still up in the air.

It breaks my heart.  It was the first moment where I realized quite so clearly how different this will be.  And I'm sad for that in a very real, heavy-in-the-chest kind of way.  I feel robbed, like this experience has been taken away from me when, in reality, it never was ours to begin with.  But it still hurts.  Enough to sob a little curled up in bed watching Bravo.  

Forming a plan

I do well with plans.  Everyone I know points it out...sometimes as a compliment, sometimes as a complaint.  But the reality is that that's how my brain works.  I need to know the variables and goals, then I get to work.  Otherwise I get to going crazy.  My choice.

Had an epiphany last night while driving home from work.  My hands might be tied with regard to Little Man's health right now, but they're not tied completely.  What I can do is prepare our home and our lives for his arrival, knowing now that it will look a little different. 

Even before we knew about his heart needs, I had a running list of things to do to before he arrived...finish big girl room, make the nursery more boy-like, get the basement organized, make some freezer meals.  Nothing crazy, but a full plate of ideas to make having 2 under 2 more manageable.

Now I suspect I will need a higher level of organizing to get through.  Instead of just having some dinners on the fly, I'm going to be that those first weeks of juggling Olivia at home and us at the hospital will be controlled chaos.  A big menu of healthy, easy, frozen meals is a must for us and those who come in to help out with O. 

I always planned to do a trip to BJs to stock up on essentials to save myself a trip or two to the store.  Now I suspect those trips will be pushed later and later and a more considerable stock of supplies might be needed.  And maybe a rack in the basement on which to store things, like tissues, tp/pt, canned goods, diapers, wipes, etc.  Our upstairs closets are just not going to be big enough anymore!

And it runs deeper than just these things.  I need to have our $%^& in order.  With finances, with the house, with the daycare situation (for O and hopefully, at some point, for LM), with planning O's 2nd birthday, which will arrive mere days after LM has surgery.  All of these things take time and energy.  Lots of it!

Right now, we have 113 days until his currently projected arrival date.  Time to make a list, delegate, and start tracking progress on the fridge.  My job in the next few months is to get our clan ready for its next arrival.  Now where is my BJs card again?

Yup...so far that seems about right

Saw this one someone's FB profile and found myself nodding.  It sounds just about right so far.  Not sure where the plane will actually land, but working on still looking forward to the adventure!

What it's like to have a baby with a congenital problem: 

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. 

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

News

The call finally came.  I was in the driveway of the beach house, rushing off to a lady's lunch with the Linda and Mother Hale, Olivia in tow and fussy in the back seat.  The car was literally on and I took the call with the window down and Michael standing right there.

"Good news!  No 22q!!"

I think that poor genetics counselor was as happy as we were!  A boulder was lifted off my shoulders immediately.  It was not the result I expected.  Not at all, but certainly the one we wanted.  Now we only had to focus on his heart and getting him healthy.  No scary genetics issue.  Music to my ears.

Suddenly -- and in the week that's followed since we heard -- things started feeling more manageable.  Sure, there are my moments when I can't sleep and sit on the bed for an hour bawling my eyes out from fear and concern.  But those moments aren't every day and, I'm guessing, are to be expected.

Two weeks to go until our next consult at the hospital.  For all the questions we have shared with the program team, they really haven't been forthcoming at all.  "That's something we'll cover on the 30th."  Seems that we'll cover everything on the 30th!  I remain in the dark on what life will look like for our family in the next year.  Will there be complications?  How long will he be in the ICU?  Will I be working?  Will Little Man be in daycare or at home with me?  How in the world will Olivia adjust and how will we feel like we're balancing the two of them fairly?

There's a lot to understand and so little out there on the internet.  I've found a couple Facebook groups that have been helpful and desperately combed existing blogs to read their posts about the months following similar surgeries.  But there seems to be so few out there who have truncus AND an older sibling AND both parents working AND blahblahblah.  I miss having people to "talk" to online, like I did while weathering the two IVFs.  We're sharing this diagnosis more publicly in a couple weeks, so hopefully folks will come out of the woodwork with "my cousin went through that" and "let me send you my neighbor's email."

In the mean time, I'm waiting (not so patiently) for our consult in 12 days (but who's counting?) and making the plans that I can make.  Yesterday I requested a case manager through Aetna and started the process of requesting statements of medical payments already made this tax year, anticipating the possibility of getting a deduction on our federal taxes.  My conversation with the Aetna person was encouraging yesterday, as she thinks that we will be 100% covered for the birth and surgery because we're already hitting our maximum out of pocket (thank you, oh Mr. IVF).  I guess, if you had the chance to plan it, having an IVF, a c-section, and open heart surgery all in one year is the way to go!  I'm not holding my breath until the new case manager confirms this, but it's a step in the right direction.

Otherwise, putting one foot in front of the other.  Watching my sugars and insulin, worrying a tad about weight gain (more this pregnancy than last), and trying to get the fun stuff done (O's big girl room).  There's lots of calls, doctor's appointments, bills, work balancing, and plain ole' tasks to get through...enough to keep anyone busy.  We can do it, but thank goodness for a flexible employer and weekends!

Onward and upward!