Broken heart, Tess

The Man with the Plan.

This is my 600th post.  It feels right that such a monumental number should be about our monumental miracle.

This is Dolly waiting in the waiting room for our surgeon.  Yes, I said our surgeon.  Doesn’t that sound so good?  The man was an hour late, but Dolly was a trooper.  We’re okay with him being an hour late, because if we were the ones who needed him, we would want the clinic patients to wait.

Last night, as I thought about what this visit with this new surgeon would be like, I prayed for a few things.  I prayed that we would find someone who gave us peace about his plan to fix our daughter’s heart.  I prayed that this person would be compassionate when he told us what future challenges Dolly will face.  I prayed that this person would be willing to consult with other experts in his field, and that those experts would all agree on the best plan, because FPD and I are spent on trying to decide.

Every single blessed thing I prayed for came wrapped up all in one white coat clad package.

We found our man with the plan.

And, I couldn’t be more happy with the plan.  Our local Cardiologist likes the plan, Boston likes the plan, CHOP likes the plan.  Most importantly, we like the plan because everyone was in agreement about the plan.

I feel peace with the plan.

Here’s the plan, for those of you who like the technical side of things.  On 2/5, which happens to be her 2nd birthday, Dolly will undergo an Arterial Switch.  The surgeon will switch her backwards Aorta and Pulmonary Artery.  This will allow the unoxygenated blood to flow to her lungs and the oxygenated blood to go to the rest of her body, the way it should.  Right now, her body does the exact opposite, so her lungs have too much oxygen flowing to them, which is causing damage, while the rest of her little body is getting bluer and bluer.  We will also band that pulmonary artery, loosely, to help restrict blood flow.  Before we leave the hospital, we’ll start medicine to try to heal those little airways.

To do this, they will have to open her chest.  That scares the stuffing out of me.  So, I asked how likely it would be that she would die during this massive surgery.

I wanted percentages.  Real odds.

His answer…”Our survival rate is 95%.”

I literally shouted, “I’ll take it!”

95%.  We went from a “real possibility” that Dolly wouldn’t survive to a 95% chance that she will.  He told us that we’re going to get her home, that we’ll face challenges getting her there, and that there will be set backs as she grows, but that he’s pretty darn sure we’re going to get. her. home.  I asked how many times he’s done this procedure.  “I do 15-20 of these per year”.  FPD, because he’s a wise ass, asked how many he’s done THIS year.  He said “I did one on Tuesday”, as in the first of the year.  He took FPD’s sense of humor in stride, bonus for us, because he’ll be getting to know us real well as we spend two weeks together inpatient.

We talked about the future plan, the next 20 to 30 years and what that will be like for her.  20 to 30 years.  Do you know how happy being able to discuss that made me?

Way back when we started this journey, before we knew our Dolly, the thought of twenty years had me paralyzed with fear.  It seemed like life would only just be beginning for her.  It seemed like she was being cheated.

Then she came, and we were given zero hope, and I would have given anything for twenty years.


We’ve got that chance.  We’ve been given a huge gift.  I am so thankful for that.

Receiving a miracle is really hard work.  

So. eternally. thankful.

who knows that the real Man with the plan has been watching over her Dolly the entire time.

1 thought on “The Man with the Plan.”

  1. We are so happy for your family and especially little miss Dolly. I remember the day after weeks of thinking my little man was inoperable the day we found his surgeon who gave us hope. I am so happy for all of you. We will be praying for you!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.