SUZY
”So at that appointment, like it's pretty, you know, heartbreaking news to hear that your baby's probably going to die”
It took me a really long time to get pregnant after Asher, like a relatively long time, almost a year. And then two miscarriages and then Lena. We found out at her 20 week scan that she had some abnormalities in her brain and her bowels. So then they set up an appointment with the maternal fetal medicine team and they did a super thorough scan and found other abnormalities. They then did an array of genetic tests to see what was coming our way and they all came back normal. So whatever she had was not on the list of 100 or so things that they're looking for. They actually told us based on the abnormalities that they were seeing, and historically how these pregnancies go, that she most likely wouldn't make it until full term. If she did, she'd be stillborn. So that just kind of, that kind of started it all. It's pretty, you know, heartbreaking news to hear that your baby's probably going to die.”
“Her organs were on the outside of her body in a sack, like her intestines and her liver. And then throughout my pregnancy as she developed, the sack was still there, but her organs had kind of migrated back inside of the body cavity. They also discovered several heart problems but they seemed manageable. Over time it all looked better than they had thought. So we had a plan in place as far as surgeries and things went after she was born.
Then my water broke at 34 weeks, in the middle of the night. Her problems ended up being much worse than the ultrasounds showed. We got to see her for the first time, maybe four hours after she was born. And they just wheeled her to my room and she's like here in a hole in this big contraption. Eventually she started to code. Every 12 hours she would have a code and it was getting worse with each one. Her codes got as long as 15 minutes. She was without oxygen for 15 minutes. After that particular one, it was clear that had caused a lot of brain damage. They let us stay in a family room that was in the hallway, right outside her room. In case she coded again, we could be right, be right there.
We finally got to hold her that night. That was the first time we held her. They turned off all the monitors so there was no beeping. We got several hours holding her before she passed away.”
It's just so many things. So many things going on. It’s pretty immediate because you go from having a baby, to immediately planning a funeral, which the timeline on that is insane. The timeline of what's expected when a family member dies to when you have the funeral, you have a week basically. And that's it. So many emotions, So many hormones. My milk came in so I was pumping out the whole time I was in the hospital and then had to, you know, deal with stopping my milk flow and it was painful. And then just the normal part of healing. I was teaching at the time and my planned delivery was one week after finals ended. So I quit my job. And then I can't really pinpoint when the depression started. I do know I felt like I had an ear infection so I went to my normal doctor to get my ears checked. I get there, and the first thing they do is just casually talk, but it's clearly like a depression screen. And the first question they asked me I just started crying. Like how do they know, how did they know that this is happening? So they go through their series of questions and the doctor kind of told me some options I would have, and then we set up counseling.
“None of the people around me have dealt with any sort of depression and anxiety, or maybe they do and I just don't know? I am a twin and we were early when we were born so I think there is this idea my whole life that I was fragile. So that only added to feeling like I couldn't talk to my family about it, just a couple close friends, my husband, and then my twin sister. I was home with Asher most of the time. And I do, I do remember specifically having like some bad days where I would just text my sister or text a friend and just tell them “It's a hard day, please come over.”
I quit going to therapy. I was like “It's too far away. I can't do this. I can't drive there. I can't. ” It was so, so overwhelming. Like, I don't, I don't even know what the solution is with that. I even sometimes now, but especially then, did really bad with scheduled things that were recurrent. Church was really hard as you can imagine because everybody knew. There were a few times I would go and just tell Jordan, “I can't stay there today. I have to go home.”
The insurance process was an absolute nightmare. They should hire someone full time to do it for you when you lose a loved one. I think that actually was a huge part of my anxiety. I just couldn't, I had to make so many phone calls and dealing with getting a plan put in place and then the plan getting canceled. Some of her services were denied. Dealing with hours and hours of phone calls and tears having to just like re-explain everything to everyone because I didn’t get the same person every time I called. We've finally paid off the last bill. Thank the Lord it's over. I actually just threw away the pile of all the forms like five days ago. Even then it made me cry. Not in a good way, like in a panicky way. Like, what if this comes back to me I have to deal with it again?”
“I guess it's so hard to describe what it feels like. It feels like anxiety, just worrying about everything and yeah. I mean I cried a lot. Everything, everything was hard and everything. I dunno. I don't even know how to describe it. Like I didn't want to be around crowds. I didn't want to be around. I felt like, I felt like people expected me to be perfect and myself after like a month or two months. Like in their minds, and this is just my perception, but in their minds, you should be normal now and move on with life. And it wasn't, and I didn't, and I just felt like I could talk to very few people about it.”
“I have a lot of worries with this new pregnancy but they’re not for health of the baby. I feel like we dealt with the worst that could possibly happen and we could do it again. I know that we could do that again. I think about my grandma who lost three daughters, I think about her and think, well, I mean, I don't want that, but I could do it we'd be fine.”
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