Lily's Journey to a Stronger Heart - 11

It has been a while since I updated on Lily's medical progress, but to be honest she has been kinda moving on cruise control - doing so well and staying so healthy their hasn't been too much to say!!!

We went to CHOP for another appointment last week, to see Lily's cardiologist. It was a long day - we left our house at 3:30am and got back at 8pm. The main purpose of this visit was to make sure she was doing ok on her medication, and to discuss when we should do the cardiac catherization again - this of coarse is the million dollar question, the answer to which can not help but bring a little sick feeling to the pit of my stomach.

The purpose of the cath is to determine if her pulmonary hypertension has decreased enough so that she can get cardiac surgery, you can read about that here

The cardiologist was very pleased with how healthy Lily looked. How full of energy she was, and how much she had grown. Her oxygen sats are holding in the mid 80's which is great. Her EKG didn't show any deteriation in her heart.

All of this we already knew - you only have to look at her to know she is doing great - with the complicated heart defect she has, this in itself is a miracle.

She laughs and smiles all the time

She is going to pre K and loving it, there are 3 students and 2 teachers that are wonderful, plus OT, PT, and speech - God could not have blessed us more with a better situation for her to be able to develop.

So the discussion was - when to cath. There are two things to look at

One - not wanting to wait too long, because living with her defect can make the pulmonary hypertension worse - that is why she has it.

Two - we want to give the medicine she is on to treat the hypertension the optimal chance to work.

There is no way to definitively know the answer, we just had to look at the facts and make the best decision - well our cardiologist had to, and we had to agree.

So it was decided we would cath in Janurary - this will give her a year on the medicine, and six months on the higher dose.

We felt at peace about this, and agreed this was the right decision.

So what is it that brings that sick feeling?

It's the knowing !!

Either way it will be a big deal. If she can't get surgery then we are not sure what the next step will be. If she can get surgery then as much as I want her to have it - we are talking MAJOR cardiac surgery - with all the risks.


She is doing SO good right now, SO happy, loving life, we are all enjoying her so much - I am not sure if I am ready for the next step.

I know God has it, I know He has Lily, and I know He has us - holding on tight to all His promises, and placing my girl in His hands.