Regrets

There are some days when I'm just very angry, especially at myself. I suppose it goes along with losing a child. I want to be happy and cheery with no negative thoughts entering my mind, but I simply cannot. Some days I just want to scream and hit something...really, really hard. I just want my daughter back.

Even when Gabby was a newborn, I was already doing my research on where to take her for her open-heart surgery. I talked with other parents and did a lot of reading. I was upset to see that UK Children's Hospital wasn't even in the top 30 pediatric heart hospitals in the US. There are only 50 states. You do the math. My instincts were telling me to take Gabby somewhere else. But Jason wasn't really supportive of that, saying Gabby would be just fine going to UK. After all, how would we manage to travel out of state and who would take care of our other children while we were gone? I was determined to overcome those obstacles, as I felt that Gabby needed better care. So I contacted some charity organizations that provide airfare for medically fragile children. I got no response. I contacted them again...still no response. In the meantime, I was trying to keep up with Gabby's appointments, therapies, and the usual needs of a young infant. Oh...and of course there was a house and 2 other very unique little ones to care for. But I did what I could to TRY to get care for Gabby elsewhere. I contacted a couple of the top children's heart hospitals in the US. I began to corresponding with the head nurse of one of the most famous pediatric heart surgeons in the world. I then spoke with the business office of the hospital with which he is affiliated. I was told that Gabby's insurance MIGHT cover her surgery there, but it would take many weeks to get it arranged. Gabby's condition worsened. We didn't have many weeks. She needed surgery ASAP. It seemed that Jason just didn't even want to attempt to take her out of state, but even still...I wanted to and would have done it without question if the money hadn't been an issue. But we didn't have a couple hundred thousand lying around to pay for travel and open-heart surgery. We were struggling just to pay for travel within the state. So, I spoke with our pediatrician who assured me that everything would be fine, and I made the extremely difficult decision to give up on trying to take Gabby out of state. I know there are no guarantees that going elsewhere would have changed the outcome. And somewhere deep within me, I believe that it was just Gabby's time to go. BUT....I cannot help but wonder...what if... From the research I've done since Gabby's passing, I have learned that there are many reasons to question the way her care was handled. I think a better pediatric heart hospital would not have attempted surgery until her pulmonary hypertension was controlled. And it was the pulmonary hypertension that led to her death.

Because of all this, I have a really hard time when I hear about fundraisers for other children facing major medical needs, especially when those children have insurance coverage to go where they need to go. Don't get me wrong. I am not heartless. I wish those children and their families the best of luck and hope they get tons of money to help them get through their tough circumstances. But it just makes me wish I had spoken up and asked for help. Gabby had no benefit events...no website taking donations...no items being sold to raise money. I am most certainly not saying we did not get any assistance. We did get some, and I am forever grateful. But it takes A LOT of money to pay for travel out of state and open-heart surgery. I thought about trying to have a fundraiser, but I was too afraid to ask for assistance. Why should anyone give us money to help pay for our daughter's medical expenses? I didn't think it was okay to ask for money from others. That's what I thought at the time. But I wish I'd taken the lead and organized some sort of event to come up with at least enough money to attempt to get Gabby what she needed. I don't know how I would have done that with all I had going on at the time, but I wish I had. Now...I have to live with that regret every single day.