Happy Heart Day!

On Valentine's Day 2012, Peter and I learned that our baby-on-the-way, then 22 weeks along, had a broken heart. We were told he had a severe Congenital Heart Defect, then diagnosed as Double Outlet Right Ventricle (although revised at birth to Double Inlet Left Ventricle). The outlook was not good, and it sounded initially like our baby boy was not to be.

In those first few days of shock and tears, James began kicking up a storm as though to tell us that he wanted to live and was going to fight. Two heart surgeries later, he's a giggly and active almost 8-month old... and here we are, one year later and once again celebrating Valentine's Day. This year's Valentine is success and recovery and relief and much love.

The month of February is Congenital Heart Defect Awareness Month each year, with special focus on this week and this day as CHD Awareness Week and Heart Day:

- CHDs affect approximately 1 in 100 births

- CHDs are as common as autism

- CHD surgery is not a cure, but hopefully in the coming years a lasting treatment will be found. Lots of amazing research is being conducted!

About Congenital Heart Defects

mendedlittlehearts

A snapshot of how we're doing

James at the hospital: 

I'm sure one day he'll thank us for not sharing photos of him sedated and drowsy on drugs. He did just undergo a pretty amazing surgery though, and it's incredible to see how quickly the body bounces back. See his scar from a week after surgery, still bandaged... and then a week after that, home with his stuffed monkey and healing beautifully. To the right, he chilled during recovery with some tv and a lovely drawing by the talented Miss Sarah decorating his crib.

Back at home, here's a view of what we've been up to this past week: James is sitting again, is not supposed to be on his stomach yet but reaches around and twists his torso with ease, laughs and giggles and grins, and has regained his pre-surgery weight. We're pretty sure he's even a bit past it as of this weekend... he's got a new high chair, and looks positively chubby as he slouches into it. He's going to be getting Early Intervention physical therapy in the upcoming weeks, but his strength is bouncing right back even without PT. We braved the snow on Friday to visit his pediatrician for more vaccines and a post-op check-in, and she was wowed by his rosy color. Our "blue" baby isn't so blue anymore, and his Friday checkup showed his oxygen levels to be a solid 90%! He's getting very good circulation; pre-surgery levels were around 78.

Home!

James was discharged last night (Monday). Whew!

This is a delayed, and short, post to share the update. Peter and I were tied up all day with discharge-prep and nonstop flow of doctors coming by; today was just as hectic with a home nurse checkup, supplies to order, followups to schedule, authorizations to coordinate... James is still getting nasal tube feedings and a ton of medications, on a precise schedule. So, we're a bit behind on getting in touch and sharing his good news.

BUT he looks great and is doing great! Thanks all for your thoughts :)

Thankful to be

To wrap up the week, James sends you all a hello! 

He was doing very well last night, although following a change of room and change in plan, today was less than ideal. A less-than-attentive nurse and an over-reaction to some fussiness ended him back on morphine, drugged and sleepy once again, and without any attention to his special feeding needs. He's been weaned off most of his meds (which had included, as of yesterday, the morphine) and his big challenge remaining is regaining the strength to eat. The hope was that a few days would suffice, so today's drug-induced stupor and absence of their feeding therapist were a frustration for me. The morphine made him twitch, and struggle to focus his eyes: poor silly-looking kid.

He is getting physical therapy though – lift an arm, massage his shoulders, move him very very slowly – which is fun. He certainly has a long way to go before he's as active as pre-surgery, but our invalid is pretty well recovered in all the ways that matter most.

What day is it?

They're all starting to run together.

James is lying in his bed, gaze riveted to his tv, mouth hanging open. The last 24 hours have seen a rapid increase in pace. The PICU doctors rotate as the days go by, depending on who is on call, and Dr. Coleman is back on duty this week. She was in charge of James for several days following his first surgery as well, so hers is a familiar face, and she's got a full-steam-ahead kind of attitude. Breathing tube out yesterday, drugs largely weaned, cpap mask off today, chest tube out. He's still swimming in wires and tubes, but they are mainly just IVs and monitors. He's awake, calm, and adapting well. He's still on morphine, which lends him a foggy and somewhat stoned expression, and his long-inactive little voice sounded pretty weak and sad initially, but his voice is strengthening now and he looks and sounds nearly normal.

I held him for a few minutes, but he was uncomfortable with the change in position it seems, so we'll have to wait a bit longer to cuddle.

Sometimes I feel like I'm in an episode of Grey's Anatomy. I hear a lot of nurse talk throughout the day. I've learned about a few obscure medical conditions that could totally have merited an episode. There's a Christina look-alike/act-alike doctor, and there's an actual Dr. Bailey. Most of James' doctors are fairly young, and look far more made-up and coiffed than me. Even after a 12 hour shift they don't look tired or ruffled. It's baffling. It's like...on tv...

Days 4 & 5: slow but steady

After what felt like a very long weekend with nothing new to say, Monday is here and the new week brings some fresh positivity :) James is still asleep, but he looks much better today. His swelling has gone down significantly and he finally is looking like himself again. Except, of course, for all the tubes and wires still in the way – he's not posing for any photo shoots yet! But it's good to see his face look normal again, and recognizably like James.

A little overview of what has been going on, and why it's such a complicated recovery process: the Glenn Procedure (surgery) on Thursday changed up some of the connections in and out of his heart, so that blood will from now on be circulated partly via a new circulatory route that bypasses his heart. Now that his heart doesn't have to pump all of his blood in and out, but will only have to handle a reduced load, it won't be so overworked. The new Glenn circulatory path moves blood, without requiring the heart to pump it along, by allowing natural pressures in his body to push it instead.

His heart looks great and the Glenn circulation system is successful. However, he's swollen with extra water retention, a normal surgical side effect, and he is also on a breathing tube. Both of these create extra pressure inside his body. The extra pressure then makes the Glenn circulation not work as well, so he needs extra aids – such as the breathing tube. He's sedated and kept deliberately asleep until the whole system is balanced well enough that waking up and wiggling around won't overtax him.

Each day, his body balances and adapts a little bit more.

Goals: His docs are planning to let him slowly wake up tomorrow, and have the breathing tube removed Wednesday. We're crossing our fingers!

Day 3 of PICU: waiting game continues

Still not much to update today, except that we all know James wants to take this recovery nice and slow. I think he partly just likes being waited on hand and foot, but I suppose he also just wants a break from the heavy duty stuff they did on Thursday.

Right now, he's relatively stable, with no de-sats in the last twelve hours, but he's pretty heavily sedated and medicated, with a pacemaker and breathing tube, and docs plan to keep him that way for at least the next couple of days. Their goal is to reduce his meds, pacing, and forced oxygen slowly over that time, so they can extubate him and he can begin feeding. Once we get that far, he'll have another few days of learning to eat again, and then we might be able to go home.

Here's hoping that James has a hungry belly when the breathing tube comes out :)