One Year Later

One year ago this past Saturday, Ayden's congenital heart defect was diagnosed.  That night, I sat down with a keyboard and a couple drinks and attempted to type out how I felt.  My world had been forever changed.  This was a process I would repeat several times over the ensuing months (see here, here, and here) prior to his birth.  Then he was born, and the world changed again.

Initially, things went relatively smoothly.  Then, the morning of Day Four, the phone rang to inform us of the first unplanned hurdle Ayden would have to overcome.  Surgery #1 - the Norwood - came and went without a hitch.  (Ayden would later be described as "the perfect Norwood.")  Again, the first several days were smooth sailing, followed by some SVT hiccups (portending of things to come).  Even with the arrhythmia flare up, he was still "the star of the building," as his surgical recovery progressed very quickly.  He was ready to go to the floor before a bed was available and became instantly popular once he got there.

Here, I'll hit the fast forward button: four failed pacing studies; multiple bloody stool scares; one stomach virus; full bottle feeding (a major accomplishment, by the way); a first love.  We had one foot out the door for weeks.  Ayden was ready to go home with no feeding tube whatsoever.  We were just waiting for the doctors to get the arrhythmia issue figured out, but the SVTs just would not go away.

Then they almost killed him.

Then fast forward through: ECMO connection and reconnection; a radio frequency ablation; off ECMO; off the pacemaker; making friends; fighting the breathing tube and CPAP; turning two months old; going back to the floor; getting to eat again; the care conference; withdrawal; roaming the halls with Margaret; going outside for the first time....

Then:  home.

And back.

And home again.  For two months (by far his longest stay at home to date).  Lots of things happened during that time:  he was introduced to his bedroom and his crib for the first time; tummy time; immunizations; hefty medical expenses; weight gain; a couple of low saturation episodes, one of which led to an ED visit; a pre-Glenn cath that didn't start, then did, followed by a quick EP study and a tumultuous overnight stay in the PCCU; watching football and sleeping; getting back into the swing of things with the bottle; babbling; and playing.

At the end of those two months, Ayden returned to the hospital for surgery #2 - a bilateral, bidirectional Glenn.  As with the Norwood, the procedure went smoothly.  Unfortunately, the same could not be said for the recovery process this time around.  The evening's expected extubation got torpedoed, allowing him to get stuck in a cycle of extubation and re-intubation.  He gave us a pretty decent scare, which led to another re-intubation, a plication, a (what almost wasn't the) final extubation.

Even as the breathing tube stayed out, Allison and I both struggled with the challenges Ayden was facing.  And the struggles would continue.  A two week stay at home - during which Ayden got out of the house for the first time and received his first visitors - was abruptly ended by another bout of withdrawal.

Fast forward to today: on and off oxygen several times; a very brief return home; an ECHO that revealed no problems and an extra cath that did; a visit from Rascal Flatts; Halloween in the hospital; continued frustration; chylothorax and a chest tube; a couple new formulas; wagon rides; hives; another brief return home; another trip to the ED and another chest tube; another holiday spent in the hospital; and another (hopefully permanent) return home.

Phew.  That is a lot of stuff to happen over the course of twelve months.  Here's a shorter rundown:

• 1 cardiac ablation
• 1 diaphragm plication
• 2 heart surgeries
• 2 ECMO connections
• 2 cath procedures
• 2 EP studies
• 3 openings of his chest
• 4 pacing studies
• 4 swallow studies
• 5 ED/unscheduled clinic visits
• 6 SVT episodes
• 7 intubations
• 7+ blood transfusions
• 9 chest tubes
• 30+ sticks for blood draws, IV lines, PICC lines, other access lines (this may be an underestimate)
• 48 minutes of CPR
• 70 hours of life support
• 140+ days in the hospital
• countless ECHOs, ultrasounds, EKGs, blood pressures, lab tests, cultures, x-rays, etc.

Let all of that sink in for a moment...

I'm entering my fourth decade on this earth.  I've never had surgery.  I've never gone to the hospital.  I can remember getting only one non-dentally related x-ray in my entire life.  Ayden has gone through all of this and he is only eight months old.  Why have I been spared like I have while he must endure this suffering?  I wish there was a way for me to take some of it from him.

The truth is, he's probably more likely to make it through than I would be.  I believe he's already tougher than I could ever hope to be.  And, on top of his toughness, he is still so stinking happy.  Happier than anybody has a right to be, based on what he has experienced.  Yes, we are still dealing with some issues, as Allison outlined in her last paragraph here, but given that he has basically been tortured for more than half of his life, I'd say we are in a pretty good spot.  Although he will continue to lag behind in the mobility area for a while, he has absolutely no issues when it comes to social development and his hand and arm dexterity is improving almost daily. (Last night he impressed me when he spotted one of his Wubbanubs lying beside him, reached over, picked it up, and put the pacifier in his mouth.  This took him no more than 10 seconds from start to finish and he required no assistance from me).

One year later, I sit here at the keyboard again, sorting through my feelings.  A year ago, there was fear, doubt, discouragement.  Those emotions are still present today, but I have to dig much deeper to find them.  They are buried beneath pride (of what Ayden has accomplished), thankfulness (for what God has provided to the three of us), hope, love, joy.

What a difference a year can make.