Thursday, August 2, 2012


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!


  1. You and your little family are in our thoughts and prayers. Love your strong and positive approach!

  2. I'm sure all of this seems overwhelming, especially with pregnancy hormones in the mix, but you are in GREAT hands at CHOP and having this time to understand, digest and plan is so valuable. Our Grace had a different CHD but I get the stress and worry that goes along with it. If I can be of any help, please reach out! Best of luck!