Home Sweet Home

Henry will be six months Friday! We received wonderful news at our follow up appointment Tuesday with Cardiology Surgery Clinic- Henry is doing well and they no longer need to see us! It was a happy goodbye and as always we thanked very excellent and very compassionate providers for the care they provided our son.

We are loving being back home! Henry continues to get better every day and his recovery has been such a blessing. He is still on a handful of medications (several discontinued at our appointment- yeah!), which Julie has fashioned a very handy flow chart for in order to keep track of what/when we've administered. I'm waiting for "MARS checks" protocol to come out soon:) Henry also continues to take (now much less) pain medication for pain management, continues to slowly increase in the amounts of his meals during his recovery and eats "on demand", and continues to slowly stretch periods of sleeping in between feedings (thankfully for his mommas:). We are trying to institute more of a routine with him- a welcome regular parenting struggle(!)- now that we're over the surgery hump and hope this translates to a comfort as Henry grows.

We've returned to where Henry left off (almost) with several precautions like no tummy time. He pretty quickly scared us during playtime by rolling on his side and we're now awaiting the full back-to-stomach roll with tummy time "okayed" this Thursday (two weeks after surgery already!). He's talking up a storm, blowing raspberries again and full on grabbing and trying to eat his toes! It is very cute and amazing how strong and flexible he is.

Where do we go from here with Henry's heart? We will confirm this with our Cardiologist at our appointment the end of this month, but from what we've gathered from physicians we will "wait and see". The hope is that Henry's pulmonary arteries grow and accommodate with the blood flow now directed to them. Henry's team might think again about surgery when he starts exhibiting symptoms again... like decreasing SATs, color changes, etc. So ongoing visits with his Cardiologist for maintenance and "regular" kid stuff for a while! During our inpatient stay I gravitated towards more of a medical report of things... a little out of my norm... and I wanted to bring it back home with a post that included random thoughts during our stay at the hospital. Just for fun:)

Things we've learned during Henry's first surgery stay (much of it not limited to just medical care!):

Get to know everyone that touches your child by name.

Become an expert in everything that surrounds your child, but find professionals to trust in for help.

There truly are no silly/unnecessary questions.

Never take pain free days and smiles for granted!

Always believe in miracles:)

Highlights of our stay:

Seeing our surgeon hours after he had his hands on our child's heart... unimaginable.

One night when I was pumping (sorry, too much information), I realized I had the best seats in town for the local Memorial Day fireworks show over downtown as I looked out the hospital room window.

Seeing Henry smile less than two weeks after major surgery.