People says this all the time to us, "How do you get through it, I could NEVER do it".
If you would have told me when I was 6 months pregnant that I was going to deliver a baby who we would later find out had cancer, it wouldn't have changed anything. I wouldn't have abandoned her, I wouldn't have changed a single thing.
She fights for her life everyday, we watch her go through this and yet she prevails, she is stronger than we are.
If you were in our situation you could to. You do what you have to do to keep moving forward. I said there was NO way I could change her dressings (on her broviac), end caps, or give her daily medication and guess what I do. I actually consider myself to be better than most of the RN's here at doing them. I could probably do it blindfolded. (Not that I would try lol).
I also said I could NEVER give her shots, NO WAY, absolutely not. When our nurse Julie said "do you want me to do it and you to watch", I told her to hand me that needle and walk me through it. And I did it. I've given her a shot 5 different times now, not enjoying them at all but I do it. I do it because it will help her, it's just one more step we have to do to get her to recovery.
This journey has had the lowest of lows and the highest of highs. I've never cried harder, but I've never laughed harder either. Seeing a 2 year old ask a doctor if "they want a drink from her tubbies" and to "tuck them in her bra when they are done" pretty much is the funniest thing on the planet.
This is life for these kids, they are used to it, its what they know. They are little miracles, if you had to go down this road you would do the same thing we do. You take it minute by minute and day by day because it's the only way you can get through it. You cry, you laugh, you lose faith, you find faith, and you repeat these things everyday. It's hard to keep faith when you think about all these cute bald kids running all around on this floor, but then you talk to them, you know them by name and they give you faith back. Because they are being given poison to keep them alive and they smile through it so all of us parents keep going because of THEM.
We are staying 1 more night, voluntarily. We could have gone home, but at home we don't have the option of morphine if she needs it, we don't have constant monitoring, she is still not taking fluids great and she still hasn't gone #2. So I think we're staying more for me than for her but I know I wouldn't be able to sleep well at night, I would question every little whimper, and I wouldn't have an RN answering ALL of my questions, I would be so worried the whole time. Seriously they did open abdominal surgery 2 days ago, so I think I'm a little freaked out about bringing her home. Last time we were here for a week after her surgery. Sure she's smiling and being cute, but I think 1 more night will make me a lot more comfortable going home. So we get to vedge out 1 more night here and I'm ok with that.