Surgery is set

chd-ribbon

Hi everyone, I wish I could be writing a happier post but now is not that time. My older daughter has Truncus Arteriosus (to learn more about her and her heart read this post).

Just to give a background, she was diagnosed when she was 7 days old and had her first open heart surgery at 11 days old, this surgery repaired her heart but it was not a permanent fix. The piece they placed in her heart does not grow with her body so naturally, this is what needs to be replaced. She has also had 2 heart Caths.

We usually see her cardiologist every 9 months or so to see how things are going, well we saw him in January and found out that it is time for her to have her replacement. So surgery is scheduled for the end of March, and along with the surgery, she will also have a cath.

Now I know nothing could ever prepare me for this, it’s just one of those things that you never want to happen. I have been in this position before, and with the experience, I know what to expect. I will tell you that no I am not ready for them to take her away from me, I am not ready for the update telling me she is cooled down and ready to go on bypass, I am not ready to hear that she is in fact on bypass. From this point forward I know that until I get the news that her body is warm and her heart is beating again, I will not be able to take a deep breath.

Then once the surgery is over, I have to prepare myself to see my daughter who loves horses and all animals, who is looking forward to her Make a Wish trip to Hawaii and
swimming with dolphins, lying in a hospital bed with a machine breathing for her. She is such an amazing girl and to see her so helpless…………words just can’t describe.

What is new this time is that I now have my younger daughter, during this time she cannot get attention from me, she will be away from her mother and best friend, yes I will have family around her to support her, but it can’t be me, and this kills me.

I know once this is over I will be dolphin-heartgrateful to be on the other side of surgery, to know that we are set for a few more years. We will no longer be at the edge of our seat at every cardiology appointment, that I can’t wait for. But as for everything else, it could never happen, and I would be happy…

So if you see me, and I don’t look okay, know that I am not. I am in fact teetering on the edge of a breakdown, I am using all my energy to keep it together. But also know there is nothing that can be done, this is life, this is my life, this is my daughters’ lives, and now this is my Fiance’s life. We will all get through it, and it will hurt like hell, but there will be a brighter side.

Being Thankful

Now I know that thankfulness usually comes around Thanksgiving, however for me this is coming Imagenow; during the Christmas season. My daughter Faith is 5 years old, by this time the doctors had told us to expect her to have been through at least 2 open heart surgeries, however she has only had 1. Next week she visits her cardiologist for a full work up (echo, ekg, and office visit) this might be the appointment that we find out it is time or we might get another 6 months before she needs to be seen.

Either way I am thankful for the time that we have had surgery free, and I know that even if surgery is in the near future for us it does not matter because up to this point we have been living on borrowed time.

I hope you all had a great Holiday and an awesome New Year!