29 Weeks and Feeling Pregnant
This week, I feel VERY pregnant. I've had some lower back pain that is really bothering me, and making me waddle like I'm closer to the end of my pregnancy than I am. Thankfully chiropractic care has helped it quite a bit! However, I still have a ways to go, so hopefully I can get this sorted out and not let it get any worse, because lifting toddlers with an aching back is NOT an easy feat.
With being 29 weeks, it's been a realization that it will be 10 weeks or less until we meet our sweet Milo. This has brought some increased anxiety because there are so many 'what ifs' surrounding everything with Milo, his birth, and what happens next after birth. I've been controlling what I can by reading many stories about other children (and ADULTS) with Trisomy 13 and buying some things for Milo. With our other two kiddos, we bought the typical milestone blankets that you take pictures each month on. For Milo, we got the blocks so we can take pictures for each day he's with us, and if we are lucky enough to get to use months/years, we will do that too! I also bought some NICU milestone cards because milestones for medically complex babies are much different, but equally worth celebrating. The last thing, that I'm most excited for is his personalized blanket. These little things are giving me a sense of 'normalcy' when our world is all but 'normal' right now.
Today, I met with my new OB in Wausau. This was the first appointment I went to by myself since our 20 week anatomy scan in February, but I was lucky enough to talk to Josh right after. Unlike many of our recent appointments, I left feeling empowered, supported, and calm. We started with talking a bit about what's all going on, our unknowns, and our wishes. Then I got to see Milo, granted, I just saw the roundness of his head. However, I'll always agree to an opportunity to see our boy. He was breech today, but he loves to do flips so we will see as we get closer to delivery. The biggest takeaway I have from today is that depending on Milo's heart function, we may be able to deliver in Wausau if we choose, and then could potentially transport to Madison if Milo's stable enough to do so. I'm still waiting to hear back from Madison about what other interventions they would possibly do down there that would make them more of the ideal delivery spot than Wausau. Once we know that, it will help further solidify a decision.
Last week Friday, we met with our doula and really focused in on what our wishes are with Milo. Our biggest goal is to meet him alive, which means we need to do weekly Non-Stress Tests (NSTs) and Amniotic Fluid Indexes (AFIs) or Biophysical Profiles (BPPs) starting at 32 weeks. The one risk with doing this monitoring is that it increases my risk of having a c-section. However, after talking through it all with Josh and Sarah Jean, it definitely is something I am comfortable with risking to meet our boy. We would still likely do an induction if he continues to grow and show how strong he's been this whole time, but ultimately, Milo is in charge and we are just along for the ride.
If you want to see some positive stories about children with Trisomy 13, check out these kiddos who are giving us so much hope!
Arrow (his group is private, but his momma posts a lot of public posts about her sweet boy).
One thing I know for sure, I do not know what I would do without the Trisomy groups we've become a part of. This village of families has been essential in this journey as we navigate all the unknowns.
Going forward, we have our next appointment May 12th in Wausau, then Madison on May 22nd. It will be nice to have both appointments close together, hopefully hear the thoughts of both teams, and determine our plan of action.
Until then, we will just continue loving on our boy and savoring how active he is. I'm not kidding when I say he's done a 360 since I started typing this. We love you, Milo James. Keep fighting! 
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