The preparation: part 2

It’s been a week and a half since our doctor told us we may only have “a couple more weeks” carrying sweet baby G. Since then, my husband has returned home from his patrol, and we’ve tied up just about all the loose ends for when the day arrives. We’ve had the opportunity to meet with several amazing professionals and I’m still in awe over how much love and support we’ve been shown on this journey. A few things I’ve learned this week:

1. Funeral homes aren’t as depressing as I thought. Not sure why I pictured dark, dreary and depressing. Well, actually I do know why. But, I digress.
2. But they are a little more “sales-y” than I thought. It felt sort of like a timeshare sale to me, but luckily a lot less pushy. We still left with brochures about how to go about making arrangements for ourselves. One step at a time there Charles, not really here for that. 
3. Sometimes doctors get a really bad rap. Because, you know, that one time you went to the doctor and they wouldn’t give you antibiotics and you were so mad you wasted your time going if all they were going to tell you to do was rest and increase your fluid intake. Just wants to make a buck, right?
   1. But the ones I’ve met have been more than amazing. From our MFM doctor, who has hugged me, brought me books from home, and gone above and beyond to help me through this crazy and shitty ride. To the cardiologist who can just give me a look and without saying a word, tell me how much she cares for us in this situation. Her job is not easy, but she’s the first to admit that it’s not as hard as mine. She has been able to give us bad news in the absolute most perfect way. She shows compassion, grace and love. She has not sugarcoated our situation, but she hasn’t pigeon- holed us into make a decision, either. She conferred with her colleagues, she was open to arranging for us to meet with surgeons and interventionalists, despite the fact that I knew that she knew we wouldn’t be candidates and that baby likely wouldn’t survive to term. But she did it anyways. To the neonatologist, who helped us understand the options and what we would expect if baby’s care was in the NICU/CVICU. To the palliative care physician, who helped us to understand how to approach this situation with our son. To every one of them who arranged their schedules to meet with us in a conference room all together, so that we could discuss our wishes. I’m a nurse, sometimes it’s hard to get doctors on the phone, never mind all in one place together. And yet here they were, all for us and for our family.
4. No one medical professional could do their job without all of the others. Doctors, nurses, advocates, managers, directors, medical assistants, doulas and more are all integral parts of care team for a family who is expecting to lose a child. 
5. Speaking of doulas… Did you know that there exist extraordinary people who specialize in hospice doula…ing? Because I certainly didn’t, but now we have one so that’s pretty cool. I’ve always kind of thought doulas were silly and unnecessary. My birth plan has always been “please deliver my child alive, and do everything you can to make sure I don’t die in the process”. But when you find yourself in a situation where you’re expecting to lose your baby, all of a sudden a hospice doula sounds like a huge asset. Chances are, I won’t be thinking straight in the moments after baby G’s birth. And even if I was, Barry and I have not dealt with this before and honestly we have no idea what kind of support/resources/information we will need. They do. We met with her today, and she inquired about a DNR. Psh, no, we don’t have one for baby. Seems overkill, no? Well, what if baby is born at home for some reason? When medic’s arrive, without a DNR, they’d have to attempt to resuscitate the baby. YIKES. Knowledge is power, y’all. 
6. Even if you don’t feel it, people are thinking of you and you’re surrounded by love. Always. I got a card in the mail from the CNO of the hospital I work at, telling me that she’s thinking about me and to reach out if I needed anything. Seriously. Doesn’t she have a hospital to help run? But it shows that there are still extraordinary people in this world whose compassion and empathy supersede their personal obligations. I’m sure it’s the exact reason she went into nursing and healthcare to begin with, and why she is so great at her job as well. 
7. You can only be so prepared. Right now, we’re okay. We can talk about it without ugly crying (usually). We are at peace with the decision we’ve made to make baby G, should he make it to term and be born alive, as comfortable as possible and love on him until his precious heart stops. That being said, there will be a lot of different and more difficult emotions we have to cope with after it actually happens. I fully expect that there will be a period of time where we won’t be okay. We won’t be able to talk about it so openly. We won’t be able to share in the joy of people around us, at least not right away. And that’s all okay. Barry and I are very introspective, and I think we both know what we can and cannot handle, and those things are very different for both of us. I’m finding myself triggered by the constant news stories of mothers/fathers abusing/torturing/killing their children. Anger, of course, is soon followed by immense sorrow and immediate resentment that those who don’t want children are often the ones who have them so easily. I know it’s a slippery slope to think like that, and it does nothing to help our situation, but sometimes I can’t help it. I’m human, and I’m flawed, just like everyone else. 
8. And finally. There is no right or wrong decision or idea. Not even one professional we’ve encountered has given us their opinion on what is right, or what they would do. Want to find something to dress him in? Cool. If not, we have supplies at the hospital. Want pictures? We have someone who can come and provide that service. Don’t want pictures? That’s fine too. Want to bring Max to meet him? Cool. Don’t know how to talk to him about it, or want some insight on how to handle it? Here are a ton of resources, ideas and people you can talk to to help you out. Want palliative care? We got you. Want CVICU/ECMO/prostin/heart transplant? We will arrange an entire team who will be ready when your baby gets here. Above all of that stuff, they’ve provided books, countless numbers of tissues, hugs and the most compassionate and empathetic presence I’ve ever felt before, and I won’t soon forget every one of the people who has helped us along this journey.