1 in 100

We are the lucky ones.  Not only are we the parents to the most beautiful, perfect baby girl, but she's going to be ok.  There were times where this was an uncertainty for me, and while there will be more procedures, for the moment all is well.  Without the surgery her life would have been short and the surgery was not without risks. There was a 1 in 100 chance it wouldn't be, according to the stats for the surgery she needed, though in Hope's case it was probably a higher chance given her size at the time of surgery.  Not every child who is born into the heart world is that lucky, and having seen other heart families lose their warriors recently, I'm really feeling that reality these days, and feeling really grateful for how lucky we are.  I'm writing this from a favorite spot, the Prouty Garden, a sanctuary at my favorite hospital, Boston Children's.  

This is not my first post from this place.  Remember this?

My first post from here was when Hope was only a week old.  A similarly beautiful day, but a crisp fall afternoon, and the threat of winter in the air.  A sense of doom - we had not only just learned that instead of bringing our beautiful baby home, she would have surgery right away, but also that she may have a bowel infection, likely a complication from her heart, and that she would not be allowed to eat until it cleared, which also meant not until post-surgery.  Little did we know, it would be almost 2 weeks until she was able to eat again.  I sat in this garden, winter looming -  the fountain shut down, the shadows long, not many people around me and cried - tears of fear, tears of sorrow.  It is a healing place and a peaceful place.  Sitting here writing that blog post and crying those tears was cathartic.   

Today is a different day.  It is beautiful like that day, but the fountain is on, the garden is full of people, full of happiness and joy for what is to come, there is the promise of summer.  There are no tears as Hope peacefully sleeps in my lap, lulled to sleep by the fountain.  Today we got good news.  We came in for a lung scan.  At her cardio check-up in April, the echo suggested one of her pulmonary arteries was small, so we needed the lung scan to check and see how her lungs are functioning.  We had this same test shortly before discharge.  At the time her left lung was functioning at 43% and her right at 57%.  It is normal for the left to be lower and that was considered the low side of normal, but normal nonetheless.  Well, today we were at 46 / 54 - perfect!  Her cardio made a big fuss as he ushered us back to a staff computer and introduced us to other staff - said she was too healthy to be here.  I love this aspect of children's - rather than being taken to a sterile exam room and made to feel like the medical novice I am, he takes us to a staff computer room and I feel like a peer, an equal, like I am collaborating with her doctors and nurses for what is best for her.  I've always felt that way here - included.  I am overjoyed at the results.

Today with this amazing news, I am trying to soak up the sun and enjoy this place while it is here because who knows how much longer it will be here.  There are plans to expand and build on it, which is devastating for the entire hospital community, patients and staff alike - it truly is an oasis in a place that can be quite scary.  It is the place where sun first hit Hope's face at 10 days old and today, the place where she first enjoyed the feeling of sitting in the grass and napping in the sun.  I try to tell myself that they will help more children, but I can't get over our own personally loss and the loss of such a healing, peaceful place for so many others.  I spent hours sitting there today watching kids play and feel the sun on their face, relishing in it.  I watched employees eating their lunch and enjoying getting out of the confines of the hospital.  I watched a mom and a nurse wheel a little girl out, hooked up to many tubes, wires, and IVs, obviously a heart patient, as she was sporting a beautiful zipper scar. They sat her by the tulips and took a ton of pictures.  She was bigger than Hope, but still a baby.  I wondered what her story was and loved seeing the nurse works with the mom to make sure this baby got to enjoy some time outside.  I saw cancer patients, kids on IVs, kids with feeding tubes.  No matter what their circumstances, all of them were smiling.

In addition to this amazing news, Hope  continues to do amazingly well.  She is such a happy, easy baby. She sleeps well, mostly, and is enjoying learning about the world around her.  She loves her mommy and her daddy and really loves her big brother Sanders, which I assure you is not mutual, though Sanders is warming to her now that she is learning to eat solid food.  She has tried many things and so far seems to enjoy it all, just as she seems to enjoy life, but seems to enjoy peanut butter the most.  We were given the ok at her last appointment to feed her anything we wanted except for cows milk and honey.  Peanut butter is high in good fats and calories, so it was highly recommended to us.  She also likes yogurt, bananas, avocado, baby turkey and chicken, sweet potatoes.  

Other firsts:

She ran her first road race without the infant carrier. 

She flew in her daddy's plane for the first time.  She slept through it.  

She had her first swim lesson, which she didn't hate:

She is also sitting.  Still a little wobbly, but she's almost there!  She still doesn't love her tummy and while she can roll, she's not a huge fan of it and prefers not to.  She is still a little behind in gross motor, but off the charts socially.  She loves people.  And dogs.  Yesterday I took her to the dog park.  She likes to laugh when the dogs bark.  She also laughs when she is thrown in the air.  She is a joy to be around.

I can't get over how lucky we are.  

1 in 100 that we would even have this beautiful baby

1 in 100 that she would have a congenital heart defect, which while I wouldn't wish it on anyone, it makes her the special, brave little girl that she is.

1 in 10000 to have her specific condition.

1% on the growth chart for weight.  

We are so lucky to have our little 1%er and I am feeling that blessing more and more with each day.