An Appointment Worth Posting About

Yesterday, we had an appointment with our regular OB and a doctor from the NICU. It's been nearly 14 weeks since we learned of Milo's diagnosis, and yesterday was the FIRST time I have nearly cried happy tears in an appointment. 

We had our NST, which of course, Milo did fantastic. His heart had the proper variations and he moved around a bunch. We met with our doctor and confirmed more plans for monitoring and delivery. We also talked about my swelling, which isn't super concerning yet, as my BP is still good. 

After that, we met with a doctor from the NICU, and I was absolutely BLOWN away. The neonatologist came in and shared how he's read through all of our notes, expressed how he's sorry we've faced what we have. Then, in one statement, he validated everything we have felt on this journey so far. He went on to say how it's so conflicting where these hospitals, doctors, publications, etc. say that children with Trisomy 13 will not have a good prognosis or quality of life, but deny them the proper care which then further perpetuates this mindset. He mentioned how he's read of instances with children with these rarer trisomy diagnoses living well beyond their typical life expectancy. He also shared that his first child has Trisomy 21 (Down Syndrome), and how much their child adds to their family/life. This is something we feel so strongly about with Milo too, even in utero, he's added so much to our family, and taught us all so much. He's certainly loved. 

We talked about our wishes for Milo after he's born. We expressed that we would like him to be resuscitated, intubated, given epinephrine, and other life saving measures. The neonatologist supported us in wanting these measures taken for Milo, which is something that was strongly discouraged in Madison. He said then as we do these measures, if they aren't working, then we would have that discussion about stopping the interventions. This is exactly what we've talked about on our end from the beginning. Give Milo a chance, and if he's not meant to be with us, he will let us know. He also encouraged us to look for hospitals that may take on Milo's case. He even suggested looking into the University of Michigan because he did his residency there and said he knew of at least one case of a surgery on a T13 baby there. So will now start digging into the SOFT organization's list and see what we can find from there. 

Like I mentioned, I almost cried happy tears multiple times yesterday. It means SO much to be heard by a doctor, and validated for wanting to support our little guy in any way we can. 

Yesterday confirmed, we made the best choice to move our care back home for Milo. 💛💗💚

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