We were so lucky that we got as much time with her as we did. She was also born with Coronary Fistula and this along with her HLHS is not a good combination at all. Of all the families I have followed, the combination of the 2 is deadly. Babies with HLHS and CF will not survive surgery without being on ECMO. And there is nothing else that can be done, the baby will have to be taken off life support.
We were lucky enough to be in a teaching hospital for Hailey's surgeries and they did something never done before in a patient with her condition. They placed a few stents in the arteries with the fistula. This is what helped her to come off the ECMO machine and be with us for the 4 1/2 months that she lived. In the end, the stent is what ultimately took her life. I'm sure if it wasn't the stent, it would have been something else. It was just her time.
After loosing Hailey, I have become a different person. I am a mother who has lots her child. I have also lost a few friends because they don't know how to talk to me anymore. I just look at it as their loss more than anything. I don't need them if they can't be there to support me anyways. But on the opposite end of things, I have become closer to a lot of friends that were otherwise lost in the background. It's amazing how people will come out and be there to support a person after going through something so devestating. I am so greatful for the friends I have and the new bonds that have grown. I am also amazed at how much closer it has made my husband and I. It's amazing what something like this can do to a relationship. It can either go one way or the other, I have seen it a lot in the heart community. Unfortunately it usually goes the wrong way for most couples. Josh and I are very lucky to have the love for each other that we do. I don't know what I would do without him. He's been my rock. My parents also have been amazing in their support and also in helping to raise more awareness for congenital heart defects. I am very luck to have the family that I do.
The other negative effect this has had on me is my constant worrying. I have a constant fear that the people in my life that I hold close, are going to die. If my husband is late coming home from work, I think the worst. He must have gotten in a car accident and is gone. Same with when he goes out fishing or goes anywhere without me and he's been gone a little bit longer than expected, again I think the worst has happened. I have to keep telling myself not to worry, that everything is fine. But it's always in the back of my mind that something bad has happened. Same with my Dad. He has not been feeling good for a while and all I thought was something was horribly wrong and he was going to die. It took the doctors a while to finally figure out it was just arthritis. Again, my mind just would always go to the worst possible outcome. And finally, with this new pregnancy every morning I make sure Leyna is moving. I am in constant fear that she is just going to pass away inside me and I will end up having a stillbirth. Or that when she does come home, she is going to die of SIDS. I know how small the chances of either of those happening are extremely small, but so is the chance of having a child with a heart defect. It's just very hard.
We're going to try and make tomorrow a positive day for us and just remember the time we had with Hailey. Be greatful that she was here and that we got to be her parents. We're going to remember the time we spent with her, and not the times we are missing out on. Everything happens for a reason, and Hailey was needed for something greater than we could offer here on earth.
We will be spending tomorrow dropping off over 70 blankets to Doernbecher Children's Hospital and then we will go pick out a Christmas tree to bring home and decorate with all of Hailey's ornaments. And also do all the other Christmas decorating in the house. We're going to turn December 2nd into a day of tradition, a day of celebration for the life that she lived. We want to be able to look forward to this day and think of it as a positive day to do things for others. I know Hailey would want us to be happy and not cry over her. I miss her more than anything and would give anything to have her back. But that's never going to happen, so we just have to learn to live without her and do good in her name.
Rest in peace baby girl, you will never be forgotten. I love you so much!