2 weeks home and celebrating

It's February break for the public schools, which means no work for Peter and some quality family time for the 3 of us! James is doing great, and has been very busy. A few days after post-op discharge, we saw his pediatrician and dosed him up with a slew of vaccines. The following week, a home nurse service came by to check on him. Then Early Intervention, recommended by his docs as a given for any child with a severe heart defect, kicked in and set up a few meetings to get him enrolled and evaluated. Finally, we met back with his cardiologist for a 2-week followup.

Results? He looks WONDERFUL. Almost 14 pounds... probably not even going to qualify for Early Intervention because he is sitting and rolling and practically standing already all on his own... possibly soon to be off the feeding tube too. He has finally figured out he can eat on his own, and is managing to take a solid 80% of his meals by mouth, if not more (achieved courtesy of a fair amount of time and effort on our end, of course).

A few pics of our adorable guy... healing so well, cuddling his teddy from Aunt Cookie, enjoying his toys and books and everything about being home, & graduating to solid foods :)

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.