There's Always Hope

Dr. Hill is back!

We are so thankful for our cardiologist. He has been gone for 3 weeks and we missed him!

We saw him yesterday and unfortunately there wasn't good news. Ella's heart is a bit out of wack. It's so weird because only 3 weeks ago we were told the function is great... so in a nut shell, the aortic valve has a mass of, presumably, scar tissue from where the surgery took place. This is making it so the right side of it has low blood pressure and the left has high. Because of the high blood pressure on the left, there is a leakage. Dr. Hill seemed really bummed about this echo... he walked in after looking at it and said that Ella can't seem to catch a break. I agree with him. Poor little thing always has something new for us... He wants to do a heart cath in hopes of removing the blockage, resolving the blood pressure and leakage. He will also be checking out the clots since we were told there is no progress. He thinks these may be too hard now that they are older and that he won't be able to get to them. We may not even need them to go away depending on the drainage that he will see in the collateral veins that her body has created to create blood flow.

I looked at him and said, "Honestly, I have told Matt that I am just waiting for the appointment where you guys tell us there's nothing more you can do... are you there yet?" He looked at me and sighed and said, "I was pretty much at that point when I saw the echo, then my mind went to transplant, then it went to cath. So let's start with the cath and then we will know more." These words cut like a knife, yet for some reason, I had a peace. It was almost as if God has been preparing me for this news.

This time at home has felt a little different to me than our first one. Almost less hopeful. I hate saying that because THERE'S ALWAYS HOPE, but watching her struggle to breathe and cough so much with the trach has been really hard. Today I cried off and on almost all day. I still can't believe that our Ella girl has to suffer so much. I want to take all of this away from her, but can't. There is a lot that I want... I want her to get the trach out, I want her to start thriving and healing, I want those clots to go away, I want time with her awake where I don't have to give her medication or do something with her trach that makes her uncomfortable, I want her to like being snuggled, I want her to smile at me, I just want to be able to have my baby girl not sick anymore... but I may never get these things. This reality is hard for me to handle. It feels like time with her is quickly fading away, but I could be totally wrong. She may make a come back and surprise all of us. She does like to do that!

I keep holding onto a verse that I have continually said to God since we found out about her condition... It's from Psalm 13, "How long must I struggle with anguish in my soul, with sorrow in my heart every day?" The translations say it a little differently but all mean the same thing... how long must I anguish? I have said this to God many times in the last 7 months and still don't have an answer. I must say, don't we have an amazing God who cares for us and listens to our woes? He allows us to come to Him in despair, asking why, and still loves us and comforts us in ways we cannot explain. For this I am thankful. He knows every tear I have shed on behalf of Ella and all that she has gone through and comforts me in inexplicable ways. He holds me fast, I just need to let go and let the creator of the world hold me and my family, no matter how hard that is. Much easier said than done, unfortunately, but God's grace is sufficient for us.

Love,
Jillian