Memories and Social Media

Social media has transformed how we communicate with one another, but it has also altered how we remember.  This is problematic for those whose bad choices or youthful indiscretions are forever memorialized online for anyone to find.  However, it also has the potential to hold great value.  I can compare my life of five years ago with my life of today.  It can help keep me accountable to myself for goals I set and fail to obtain.  It can also bring comfort and joy when I look back and see when my children were small and how they progressed.

One of the other interesting things it can show us is patterns.  Earlier this year, I had noticed that May 23 has been the day that my iris first bloomed three of the last six years.  Maybe flowers do have internal clocks!  But, as interesting as I found that, today's FB trip down memory lane was far more thought provoking.

First, FB showed me something which I already knew--last year today, Patrick had his second open-heart surgery.  He did so well, and the surgeon was pleased, and our world was filled with hope.  Two years ago today, we were in the OB-GYN's office and found out we were having a boy.  Just two years--it feels like so much longer than that already.  What floored me, though, was looking at the flippant comment I had made that day:

At doc's office for the anatomy ultrasound.  Any guesses on boy/girl?  We're just hoping for 2 pulmonary arteries.  ;)

It was a joke.  And, even now, I still get the light-hearted way I meant it. But my brain, the irrational, judgy part that thinks I control the universe, stuck in its two cents.  "Did you do this?" it quietly accused me.  Did I?  Did my imprecision and failure to say two "normal" pulmonary arteries do this?  My rational brain assures me it did not.  Of course not.  My irrational brain, however, points out that I said we just wanted two pulmonary arteries--and we got that--they just weren't connected properly.  "Well," my rational brain shoots back, "If we're talking about getting what we asked for, we asked for no heart problems, and we didn't get that."  The sneaky, guilty part says slyly, "God doesn't grant every wish.  You should be more careful what you wish for."

It's a horrible "game."  One that, I imagine, we all experience at one time or another.  In talking with others who have suffered miscarriage or had children with CHD, we have all spent at least some time fixated on what we could have done differently, berating ourselves for how this must somehow be our fault.  And, as well as the doctors do to convince us otherwise, new research undercuts their assurances.  Indeed, a new study into the causes of CHD suggests that for older moms (read, "like me"), the chances of your child developing a CHD are decreased by exercising.  Crap.  So now this is my fault.  And since there seems to be a genetic component to it, I--that is to say my genetics--bear some responsibility for the outcome.

Without belaboring the point (too late), I love the ability to go back and see memories on social media.  I just have to beware of the traps that lay therein: 20/20 hindsight; and the belief that I was ever in control in the first place.  Go, and do likewise--and have fun out there :)

We're In For a Long and Wild Ride or, What I Know So Far

We've pretty well established at this point that I like to research and plan.  These are the things that calm me when I'm freaked out.  Plus, I'd rather learn this stuff while I have the time and energy to process it, rather than when I am recovering physically and emotionally from birth, let alone the wringer of open-heart surgery on my child.  So, it should come as no surprise that I've spent a lot of time this last week researching Jellybean's condition.  Obviously, any of the information I've found is subject to change based on Jellybean's specific situation, official diagnosis, and the protocols of CHM, but it's helpful to have some sense of the breadth of the challenge we're facing.  That said, here's what I've found so far.

The CDC reports that, each year, only 960 babies in the US are born with hypoplastic left heart syndrome (HLHS), or 1 in 4,344.  According to Boston Children's Hospital, HLHS "is one of the most challenging congenital heart defects to care for."  Everything I have found certainly supports this statement.

The first surgery--the one done at 7-10 days of life--lasts approximately 6 hours.  After it's completed, they wait several days before closing the chest to prevent the compression of the heart by the rib cage until the heart has had a chance to adjust to the new circulation.  After surgery, kids remain in the hospital about a month.  The good news is that the success rate of this surgery is high, with 90% or more of the kids making it home.  However, of those that make it home, another 10-15% are lost before the second surgery.

The care at home between the two surgeries looks pretty intense.  In addition to the weekly check-ups with the cardiologist, and likely lots of meds, Jellybean will probably be on oxygen and an apnea monitor.  Weight must be checked daily to make sure he's eating enough, and a pulse-ox monitor has to be used twice a day to check his oxygen saturation.  He may be on a feeding tube, depending on whether he's strong enough to feed himself; the low oxygenination caused by the mixed blood flowing through the body can make children suffering from HLHS too tired to feed well, so they often need supplements to make sure they get more calories per swallow.  Sometimes, because they had an intubation tube in so early, they associate having something in their mouth with that sensation, resulting in difficulty taking a bottle or breastfeeding.

Although I've found descriptions of the second and third surgeries, I haven't found much on recovery or mortality stats or care afterwards.  But, quite honestly, that's about a year away, and based on what I've already learned, I will have so much on my plate between now and then, I'm not sure I need to know more just yet.  The goal, for now, is to be ready, rested, and as prepared as possible for whenever Jellybean arrives, because once that happens, the roller coaster is gonna take a sudden, turn down a high, steep curve that will take my breath away, and I don't want to fall out.