amazed.

Hello friends!

Thank you so much for checking up on Emma Kate. I've noticed a lot of traffic to the blog lately, so I thought it would be nice to update you lovely readers.

Emma Kate is doing very well. She turned 4 this past August and has done so phenomenally well over the last year and a half since I last updated. She is still post-Glenn and has had no complications whatsoever.  This child is simply amazing.  She sees her cardiologist every 3 months and her heart function continues to amaze all of us.

Recently we took Emma Kate in for her regular follow up.  We have been noticing her getting much more tired than usual. Many times she will sleep in until 830 or 9 am. (Which is really unusual, she used to be up at 6 or 630!)  She's also increasingly more blue. Her lips especially. It looks like she has been eating a purple popsicle. :) Her energy level is really good once she is up and about, and she's still bouncing off the walls as usual. However, her stamina has decreased quite a bit. She knows her limits, though, and for that I am really thankful.  

Dr. Cardis examined her and the tech did an echo. Her tricuspid valve regurgitation is mild/moderate. He upped her Lisinopril to a full tab every day. He also briefed us and said that we will bring her back for a regular follow up in March. At that point, he will assess and see about scheduling a pre-surgery cath in order to make plans for her Fontan.  His estimate is that she'll most likely have surgery in May or the coming summer.

... and honestly, we have such mixed feeling about it all.  We are dreading this and longing for this at the same time.  I have told several people that it just feels like a big black cloud lingering over our heads.  We don't want to admit her for open-heart surgery... but we know she will be so much better for her once it is over with.  We are utterly amazed that she has been out of the hospital completely since she was 6 months old. Not a single admittance. She's a miracle. We have treated her as we do our other children and she has a very normal, happy life. But we knew this was coming... we knew that she would eventually need surgery and it looks like the time is drawing nearer. We know she will be in great hands when the time comes.

One sad thing we learned over the last year is that her beloved surgeon, Dr. Kirshbom, left CHOA for Yale, I believe. We will greatly miss him being there and have debated staying in Atlanta for the Fontan or following her surgeon. Since the surgery is pretty straightforward, and the post-surgery care is such a huge factor in her success, we really feel confident in keeping her at CHOA. We trust the surgeons there very much. I think that staying will mostly likely be our choice for her.

It is going to be a completely different experience for all of us when the time comes.  Last time she had surgery she was six months old. This time she will be able to talk to us and tell us how she is feeling. She is already telling us things that completely blindside us. Just yesterday I overheard her talking to our older daughter about how when she was born the doctors had to open her chest and fix her heart, but it didn't hurt because she was asleep. 

break. my. heart. 

Emma Kate will tell you that she has a "special heart." She sees her scars and knows her sister and brother, mommy and daddy don't have them. We have always tried to be honest in an "age appropriate" way without making her feel different than others. I do not want this heart defect to ever define who she is. So we are trying to find a balance at keeping things normal, while also being cautious about her health and keeping pertinent people informed. It is a challenge, but we are so grateful for it.

Dr. Cardis listening to her heart during her last visit. 

 

Messy hair. Big smile. Bright eyes. Our sweet girl.