Tuesday, July 20, 2010

Tough Choices

We are nearing the Glenn and with that or any other invasive procedure comes the mental preparation for all that Olivia, Brian and I will face with the surgery and Olivia's overall recovery.  I had so much time before the Norwood, from week 20 of my pregnancy on to think and stew about it over and over how giving away our baby girl would be when the time came for her surgery.  I think by the time the surgical day rolled around I was numb to the emotions because of pain, sleep deprivation and shock to the whole delivery that it just didn't seem to shake me the way I thought it should have or would have. 

This time around, I haven't had as much time to think the whole process through.  We've been too busy focusing on the wonderful ups and small downs with Olivia's day to day to look too far in the future.  I do know that when we go in for the pre-op appointment I'll have to sign the consent forms that warn us against all the risks ranging from infections to strokes and/or death.  It's the third time in Olivia's life that I'll be signing off on those terms but it's been very clear from the start of our journey with HLHS, either we go the surgical route or we bury our baby. 

Based on all the heart families out there, July has been a hard month on our little ones.  There have been some babies that are now angels watching over the rest of those that continue on, those that are fighting for their lives today and those parents that are having to contemplate signing off on DNR's or end of life care for their little ones.  Knowing that's going on somewhere out there for another set of heart parents (or just parents in general) just makes it that much more rewarding when I end my workday to get home to Olivia.  I never want to entertain the idea that one day she may not be here with us, but that is our reality so I try to cherish each day as it comes.


  1. I found the second surgery a little easier than the first, but we also went through HELL just getting the first one done. The second one was hard because she was already doing so much and had a great personality and spent so much time at home. It was just so different fears and feelings with each of them.

    I know how you feel about the other little ones that are fighting so hard or who have gone to heaven and we had that too with both of Hope's surgeries. It does make you stop and appreciate every single second of every single day. I do that more now than I ever did before and I know it makes a difference for Hope and for my boys.

  2. I cannot imagine preparing mentally for the 2nd surgery. I love all of your updates on Miss Olivia and I really, really hope she does extremely well with the Glenn!

  3. This is my first time commenting but I've been following Olivia's story for a while now.

    Like you, I was so numb during the time of the Norwood and my daughter did so well I really had no reason to get upset. From that I had this false sense of strength and a 'been there, done that attitude' about the Glenn. I was SO wrong. My daughter had her Glenn at 6mos old, she was playing pat-a-cake, peek-a-boo, sitting up, and finally enjoying her tummy time. To see her sedated and intubated was so disturbing to me, I felt sick, it was just so unnatural for her to be lying there like that. And she sleeps like a wild woman so I couldnt just pretend she was sleeping. I walked in all calm and collected but quickly broke down crying, I literally could not look at her. I dont want to sound morbid but when I looked at her, I felt like she was dead, it was horrible. I was asked to take a walk, get some fresh air and try again. Nothing helped, I even had the nurses crying and after a couple failed attempts to stand strongly by my baby's side, I was asked to go home for the night! It was tough but she had 2 nurses by her side and other than that night, I stayed with her the entire stay.

    That was over a year ago, and we'll be celebrating her 2nd birthday in Sept! Dont make the same mistake I did, at least try and mentally prepare for the Glenn. I think I would've been much better off if I had taken the time beforehand and pictured her sedated and on the vent.

    Take Care of yourself, I know exactly what your going through!