Progress...

We returned to the Brompton yesterday feeling calm. The anxiety of the night before chased away by a  gloriously sunny morning, and most importantly, your prayers.

We arrived early and so walked the streets of Chelsea to pass the time. Heidi slept peacefully in her buggy, blissfully unaware of all that was going on around her. I am so very glad of that fact. We made a quick stop at Sainsburys, topping up on snacks - our previous experience telling us that this would be a long afternoon with a lot of sitting around.

The children's outpatients unit was warm and welcoming and the fears again were batted to one side. This was not a place to be afraid of... How could we be? Small children playing in the play area, snuggled up to parents, each one of them a miracle. Each one a survivor with a story to tell.

We were called quickly to have Heidi weighed and measured and she balled her eyes out. David and I looked at each other knowingly... If this was how she was reacting to being measured and weighed, a process that took no more than 10 seconds, how was she going to cope with a 15 minute Echo... Trusting that our God is a God who answers prayer, I swallowed down the thought and we left with smiles on our faces. Our girly is back on track. The centile that she lost in her battle against KD had been overcome. She's back above the 75th centile where she belongs. One small victory.

We seated ourselves ready for a long wait, Heidi played happily in the play area, taking her first tentative steps with a walker. She stood holding on to it for at least 5 minutes with the hugest grin on her face. She was so chuffed with herself!

Within minutes we were called for the ECG... We couldn't believe how quickly things were moving. Heidi sat in my lap as they hooked her up; covered in stickers with wires attached to them, she gazed at the maze of cables coming off her body, eager to pull and play with them. No such luck, Heidi dear, as Mama kept her hands firmly in grip with a few renditions of "If your happy and you know it" and "Wind the bobbin up". Again we were so impressed by the professionalism and child-friendly attitude of the staff. The ECG registered clear. More good news.

A few more moments and it was time for the Echo... The hours of waiting last time reduced to a few short minutes between each stage of our appointment. We ferried ourselves in... Buggy laden as Dave pulled out his bag. This was the moment I had been worrying about. How do you keep an 11month old baby lying still on her back for 15 minutes wide awake?

The answer? A satsuma, a few board books, a cuddly "Upsy Daisy" and an awful lot of praying friends.  Heidi was good as gold, at times, gripping on to the hand of the sonographer who was brilliant. He ignored her attempts to push his hand away, and got on with examining her heart, leaving us free to keep her amused without feeling awkward or worried.

In some ways, this Echo was easier... We were so busy chattering away to Heidi that we didn't have time to feel the weight of that deathly silence, to examine every facial flicker of the sonographer, to try and make sense of the blurry images on the screen. Instead, his announcement that the Echo was finished caught us by surprise. As I left, I wondered if it had been shorter than the previous ones, or whether distraction really does make that much difference.

 

We returned to the waiting room, I gave Heidi a quick feed, and by the time I was back with David we were being called. This was it. The moment I had both longed for and dreaded for the last 6 months...

The Consultant was friendly, making small-talk while all David and I could hear was the pounding of our own hearts while we waiting for the words we actually wanted to hear. I prayed silent prayers; "Lord give me strength", "Lord help me remember you are faithful", "Lord, help..."

"There has been some more improvement," the Doctor smiled, "Heidi's score is now down to 2.85 (it was 3.5 at our last appointment). It needs to get down to 2, but she's heading in the right direction and I'm confident this artery will make a full recovery given time."

I breathed deep, soaking in the words. Not the "full recovery" I had hoped for, but hope, real hope, for the first time since that dreadful diagnosis. The Doctor was more positive than we had ever seen her before and told us that she believes Heidi will be able to live a full and normal life once she comes off the meds that she currently needs to remain on. She is hopeful that by our next appointment in October, we may have a healed artery. We discussed a few specific questions, me repeating back information as I scribbled everything down. Smiling and questioning, I realised that a week ago, this would have been the news that I dreaded. We now have to face a winter on Aspirin and all its potential risks. But do you know what? The fear was gone. The Lord is faithful.

We finished up our time with James, our Cardiac Nurse who is our wonderful link person and who has, so many times over these past few months, been the voice of reason to my anxious thoughts. He knows our Heidi's case so well and amongst all the specialists we ever see, I still feel like he is the one who "gets" us most. It was great to be able to chat through our plan with him, talking through specific issues and have anxious thoughts put to rest.

Again I am amazed when I realise that so much of this journey is not just about Heidi's physical heart, but about our hearts too. I am learning, always learning. So often, my heart harbours fear and anxiety... so often my heart grips on to my own desires and will... and I am learning, repeatedly, time and time again, that my ways are not His ways.

A week ago, if I had received this news, I probably would have fallen to pieces. And yet, this past week, God has been doing a healing work in my heart too... showing me that perhaps I still have some growing and learning to do in all of this. I'm thankful that just as he continues to heal and mend my daughter's damaged heart, he continues to work in my imperfect heart too.

Thank you, so much, to each one of you who sent texts, emails, messages, tweets and left comments.

We prayed tonight, feeling so very truly blessed.