"Palliative Care" March 28, 2025

March 28, 2025 

It's been one month since we found out about Jensen's diagnosis. This week I passed my glucose test and met with MFM (Maternal Fetal Medicine) again. I'm not necessarily tired of talking about Jensen and his diagnosis, but it seems the days that I feel like I'm talking to medical doctors about next steps and my delivery options and what not, I feel drained the rest of the day. I don't know if that relates to these conversations because I'm not necessarily crying through them or really even struggling to talk about what my options look like. So, maybe they're not even tied. Maybe it's just growing a little human inside of you. haha 

Other than his head, Jensen is growing right on track. Isn't that such a weird thing? For something so severely to be going on - ya know, like having very little brain tissue and skull - but be kicking away and growing as he should? It's such an odd thing to me, which is why I feel like grief is such a weird thing too right now. Trust me. I have my moments where I really just need a good cry... and sometimes it's just a subtle thing that triggers me - like driving past a cemetery and realizing we'll have a SON in one soon. yuck. I don't like that. 

Jensen is so active. My most active baby. It's honestly a gift. The pregnancy insomnia isn't so lonely when I've got him kickin' me reminding me he's still around. I've tried to pay attention to what makes him most active but honestly, he just likes when I eat food. 

Remi and Free know Jensen's name and are starting to comprehend that they have another brother. It was really sweet the other night putting the boys to bed and Remi randomly mentioned loving his brother Freeman. I responded with, "Awe that's sweet bud. Ya know, baby Jensen is also your brother. He just needs more time to grow before he comes out of mom's belly to meet you." The look on Remi's face when he exclaimed, "I have TWO brothers?! Thank you mom!" He's such a sweetie...most of the time. Freeman mostly asks to see my belly then says, "Baby Jensen, wake up!" and claims he felt him kick haha. Not quite sure how we'll break the news to them that baby Jensen won't be coming home with us.. we'll cross that bridge when we're ready. 

In other news, my high risk OB talked about how most likely he will be born alive. You google the stats and most of it says that anencephalic babies don't even make it to term and are almost always stillborn. So I'm not sure what to believe. I'm preparing for a stillborn baby, anything else will be great and of course, accepted. I'm learning more about "Palliative Care" - it's where doctors and nurses are trained in how to make everyone comfortable in situations like a terminal diagnosis. In fact, Caiden and I are waiting to get a meeting scheduled down in the city with a whole team of doctors who are on the palliative care team to talk about all our options and what delivery will look like from their end. Another weird thing- I'm now one of those people who sits in a conference room with a team of nurses/doctors/social workers while they brief me on what's about to happen in a few months. I'm sure I will cry in that meeting. How can I not when a ton of medical people sit there and try to prepare me for what I'm dreading? They've seen it. They know it. Me? I have no idea what's about to happen. 

In other news, we put an offer in on a home about an hour and a half away from where we currently are. Which is exciting but adds a whole new layer of crap I need to deal with. Currently, we are about an hour and a half away from the city but we have a very small rural hospital about 20 minutes away from us. My OB is prepared to deliver me and I really love her, but the hospital staff isn't trained in palliative care and would need some training, which I'm told they will get for our situation. I'm just not sure if I want my delivery to be the guinea pig for their training.. if that makes sense? My high risk OB today said that even the greatest nurse who hasn't dealt with anencephaly before could get squeamish in the moment if they're not properly trained. SO... we have the option to deliver in the city - an hour and a half away - where my high risk OB is located (and the whole palliative care team that I mentioned prior - ya know, the conference room?) They have awesome resources and have delivered many anencephalic babies... but IF we get this home, it's an hour and a half away in the OPPOSITE direction of the city (making the city a 3 hour drive.) This new home is closer to a bigger city than we currently are by, that also has hospitals close by, but at this moment, I am unsure of their resources/palliative care options. My social worker is going to try and get some contacts for me over the next few days so I can reach out and see if they have anything great. So. basically I have to research three to four different hospitals and see which one I think will work best for us.. I will most likely be induced with Jensen as most anencephalic babies need that extra help with labor and delivery so if we get this house and move but still wanted to deliver in the city with the palliative care team, it would only be a 3 hour drive. 

Reading that paragraph back, it's worded terribly, but I'm too lazy to figure out how to better explain our situation. If you looked at a map and had a red dot in the middle, that's where we currently live with a hospital 20 minutes away with less resources. An hour and a half down on that map you put a blue dot and that's where my high risk OB and palliative care team are located (the hospital that sounds like the most experienced). Now, go back to the red dot. Now go an hour and a half above from the red dot and put a yellow dot. That's where we are hoping to move. About 20 minutes away from the yellow dot they have 2 hospitals that may have decent/good resources - or not so great. Did that help? Guess I'm not that lazy after all. 

Anywho. Lots to think about. Lots to process. I also need to try and get on Medicaid for pregnancy.. and WIC for our kids. We honestly are going to need the financial help if we get this home while also paying off medical bills this year... But trying to get through to the Medicaid people is a NIGHTMARE. You're on hold for like 4 hours before you talk to someone and then they help you for 5 minutes and then have to transfer you to another team and you're on hold again for 2 hours. It's ridiculous. I'm putting off the phone call but really need to get it done.