PA Band Surgery - October 8th

There are so many feelings and emotions to be had knowing that my 3 month old baby is going to have heart surgery tomorrow. A part of me is very scared. A part of me is relieved. A part of me is nervous. And a part of me just wants to disappear.

I know that she needs to have it. I know that we have to give her the chance. I would do anything for my daughter in order to make her health better. I would give her the world if I could.

This pulmonary artery band (PA Band, PAB) is still very much experimental. There is so little research on it, because the case study is so low and its so recent. This is so being that there just aren’t that many cases of infant left ventricle dilated cardiomyopathy (LV-DCM) every year. We have gone over the stats, you all now by now, still just blows my mind. (Why, right?) The nurses that we have had the last two days have literally researched and printed articles for us. They are reading up on it as well; this is how new it is. That alone is scary. The fact that we signed waivers so that they can send her information to Germany. At the very least, I want to help future endeavors in this procedure. But, silver linings playbook, there has been some success in this procedure. They wouldn’t be doing it if they didn’t think that it had a chance of succeeding. By the grace of God, I hope it works.

So, we are going to get to the hospital at 5 am tomorrow morning. We want to make sure that we can see her, pray over her, and walk her down to surgery. The surgery itself only takes about an hour. But there is the set up, and the monitoring for an hour, and the getting her back up...so it will realistically take 4-5 hours before we see her again. There really isn’t more that they can do surgically, besides a heart transplant. We need this to work.

We hope.

We pray.

We fight.

God bless you sweet Emerson on your journey with this. You have your parents, your family, your friends all praying and fighting with you. 

I love you my daughter of mine.