Cardiology scheduled Lucy for her third cardiac cath on May 16th. They are trying to get images of her heart so that they will know what they have to work with when they do her total repair. We are really pushing for her repair as soon as possible. We hoping it will be only a week or two after the cath.
It's getting more and more difficult to get Lucy to eat. If you don't make a conscious effort to push her, she won't get enough. She almost uses the feeding tube exclusively. She keeps getting sick which is super frustrating because it's so hard to get her to gain weight when she does.
I'm beginning to understand that the term full repair is a little deceptive. They are planning on leaving her VSD (the hole in her heart) open. In a few years they will mostly likely go in to fix it along with fixing any leaky valves.
I'm grateful for what they can do with the heart. The older my girls get, the harder it gets to watch Lucy fall behind. It will be such a relief to have this surgery behind us.
3 comments:
You know, despite everything Lucy is such a happy little girl. She looks great and has great parents watching over her. I'm sure it's hard but remember you have so many friends and family that are praying for her and supporting you. We'll be sure to include and early surgery in our prayers.
so glad you have a date for the cath. I hope you can get a date for the repair soon. Love you guys and hope you are all doing ok.
Sweet Lulu. So cute and yet so sad she has to suffer so much at such a tender age, but luckily she is having it done know when she won't even remember in a few years. Just you as parents will have to relive all these moments over and over, enjoy the moments now and look forward to the future when she is well and whole. We love you.
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