31 Weeks and a meeting with NICU
Another week down! As the countdown goes on, I feel like time is going faster and faster.
This last week has been a bit all over the place. I can definitely tell my anxiety is increasing as we get closer to Milo's due date. I have so many "what ifs" running through my mind, and it's so hard to turn them off. The most recent one was thinking about if Milo survives birth, would we let other people hold him. I took this question to the Trisomy Facebook Group, and many people had many different responses. However, one thing Josh pointed out was how little time each person had with their baby. It was a slightly harsh reminder that we have no idea how much time we will get with Milo earthside, but we are going to continue to hold out hope that he's going to continue to fight to survive just like he has this far.
Over the last week, we reached out to an organization called "Be Not Afraid" which partners with other organizations to help support and guide families in situations similar to ours. We talked to a Parent Care Coordinator with Willow Story and are starting to work with them to continue to advocate for Milo and what our wishes are for him going forward.
Today, we met with a Nurse Practitioner from the Wausau NICU. I was hoping that leaving today, we'd be confident in our plan for delivery, or to end our care in Madison, but we still have some unknowns. Based on what we know right now, we are still leaning towards delivering in Wausau, but we are going to go to our appointments in Madison on the 22nd and will likely make a decision from there. We need to get another echo to really understand his heart function and try to determine if Milo will be able to survive life outside the womb. Last we heard, it was hopefully going to sustain him for awhile, but ultimately surgery would be needed. I'm hoping that if we can get him stabilized and evaluated after birth, we might be able to find a hospital in Wisconsin that may be willing to take on his case. I just think we are facing a lot of disability bias because of how rare his diagnosis is.
Now, that's really it for updates on Milo at this point. I see my regular OB on Monday for my 32 week appointment and first non-stress test, so hopefully he's continuing to do well on the inside and we can continue to let him grow for as long as we can! Ryleigh also has her next counseling appointment next week, so hopefully we can start to gather resources to continue supporting her as well. I've noticed we just kind of stopped talking about Milo around her because we don't know how to talk to her about him. We don't want to get her hopes up, but also we want her to feel connected to her brother, so it's hard to know what's best.
As for Josh and I, we are trying to have some of these harder conversations around all things Milo. Do we want to put him on a ventilator? If so, how long are we willing to do that? Do we want him to be resuscitated? Do we want to bring him home on comfort care? How much is too much? How little is too little? Do we fight the hospitals to consider surgery? How do you muster the courage to fight someone who does this for a career?
We talk about it in little chunks, but it's hard to even start thinking about which scenarios could play out because there is so many.
My therapist pointed something out the other week about how I'm great at "presenting" Milo's story, but asked if I'm actually feeling the weight of everything. I've realized, I'm not letting myself. The little bits I do feel are sadness over all the things we had hoped for that we aren't likely to have, and anger over the fact that he can be denied care because of his diagnosis. However, I remind myself that these emotions need to fuel my fire rather than consume me, because I know if I let them, I'd be under water really quick.
Today I wore my "one step at a time" bracelet to remind myself that today was another step in our journey, that will hopefully end with us meeting our 1 in 10,000+ baby boy. He really is our miracle, and while this journey is so heavy and uphill, he's worth every step. We sure love you, Milo James!
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