A place of peace

I wrote this last week, but just posting now...

Mommy and Hope selfie by the roses

Once again I find myself blogging from one of my favorite places, the Prouty Garden at Boston Children's Hospital.  I try to soak up every moment I can here, because I never know if it will be the last. Prouty is in danger of being replaced by an expansion of the hospital.  Each time I come here, I wonder how the hospital could do this.  When I got here I felt stressed from the drive in, but as I sit here listening to Hope babble with the happy sounds of kids playing and the calm of the fountain in the background, I feel peaceful and renewed.  This afternoon, I bonded with another heart mom whose 6 month old is currently inpatient after her second open heart surgery.  I watched nurses take laps around the garden, undoubtedly escaping the intensity of the hospital.  I saw meetings taking place.  I watched bleary-eyed parents without their kids getting a breath of air.  Cancer patients playing with their parents.   A kid playing catch.  It is a magical place and it's hard to believe that on the other side of these walls hospital life continues and out in the street, rush hour is raging.  I can say without a doubt, you can't leave Prouty without feeling a sense of renewal.

When I'm here, I don't want to leave.  It feels like home.  Too much about this place is familiar.  It was a refuge on the worst of days when Hope was inpatient.  It was the place she first saw the light of day outside hospital walls.  The roses are blooming and I can't help but be reminded of all they represent to me.  We posed in front of the same roses with our beautiful 10 day old baby girl.  This was two days before surgery and the garden was the only place we could take her to be outside.  Today she is playing happily by the fountain, trying to crawl and trying to stand.  She is engaging other people who are also enjoying the garden and making them smile.  Back then, she was npo (nothing per oral) because of the infection, today she helped me enjoy a frozen yogurt.  We are blessed to have this place, I just hope future patients will also have it.  

Then...and now. 

Practicing crawling in Prouty

We came down to the hospital to see Hope's endocrinologist.  Right after surgery, her thyroid crashed, a syndrome they call "sick thyroid".  She has been on thyroid meds ever since.  Until now.  We've officially been given permission to discontinue meds.  This will be the first time since she was born that she is not on anything.  No. More. Meds.  I can't believe it.  It means we will need to get bloodwork weekly for a little bit, then monthly.  We have to watch her height / weight diligently.  If anything goes awry, she goes back on.  

The other amazing news is her weight.  We hadn't seen a doctor in 2 months so she hasn't been weighed.  Back in July she was just about 15lbs and 5%.  Today she is 16lbs6oz and 10%!  She loves to eat :)

Finally, Hope crawled for the first time on her 11 month birthday.  She gets better by the day, but isn't mischievous about it.  Mostly she uses it to get to Sanders.  He is becoming more and more tolerant and just lets her play on and around him.  

Getting ready to crawl in her sleep

There's not much else to report.  I've been back to work for three weeks now.  It's like I never left.  I definitely miss being with Hope all the time, but love being back to work, even with all the stress it brings.  Hope is doing great at daycare.  She loves seeing my homeroom in the morning and waves and shrieks at all of them as they come in.  At the end of the day, she is happy but tired.  

Hard to believe this little peanut is 11 months today.  It's gone so fast, yet the time I spent in this garden 13 months ago seems like it was centuries ago.  Back then, I was the scared new mom to a medically fragile little girl who was so sick, seeking refuge in a place of great peace.  Today, I am a far more confident, seasoned mom of a thriving, healthy (for now) little girl who is tough as nails, seeking a moment of peace in a hectic life.