25 Weeks

We've made it another week! Keep growing, Milo James!

I've mentioned this journey has been such a rollercoaster. Today was one of those days... We were all in the van running errands and Ryleigh pipes up from the back seat, "Momma, I'm gonna hold Baby Milo in my arms. He will be so happy." It's in these moments where my heart melts at the idea of Ryleigh taking on the big sister role again, but at an age where she can participate more. But it simultaneously breaks because how on Earth do you explain this all to a 3 year old?! We initially told her that he has a special heart, prior to the T13 diagnosis, but haven't really talked about anything else since. We just talk about Baby Milo in Mommy's belly. The hospital gave us the book, "The Invisible String" which we are grateful for, but we need to continue to dig into more resources available to support her and Oliver during this time too.

On Saturday, we jumped on a SOFT (Support Organization for Trisomy) webinar for expectant parents. There were only a handful of families active on it, but it was so nice to hear of others going through a similar journey. The other families' babies were diagnosed with T18, but the host of the webinar had a daughter with T13. It was hard to keep my composure while sharing our journey because I knew they all had the same heartbreak, uncertainty, and hope that we are working through each day. If you want to feel a bit inspired by all the children beating the odds of a Trisomy diagnosis, I highly recommend checking out their Facebook Page. For the month of March, they are highlighting different children each day and a little about their story. It's been a light that has kept us pushing forward!

Today, our care coordinator called to touch base. My referral to Madison went to a different hospital, so she is working on getting that referral sent Meriter, where we were initially seen so we can continue to seek care with a familiar team. We are also going to try to coordinate care between the local hospitals (Wausau or Rapids) and Madison so we don't have to trek down to Madison for each appointment. The next big appointment will be at 28 weeks though. We will head down to Madison, meet with our team and have an initial meeting with a neonatologist. Our care coordinator is also going to get in touch with cardiology to see if our next echocardiogram can wait until that 28 week appointment or if they want to get us in sooner. We were supposed to have one done a month after the first one, which is this week, but due to the other testing done, it's been pushed to the wayside for now. One thing I am so grateful for is our care coordinator, because there is absolutely no way I'd be able to juggle the load of all this communication between these 3 (well, 4 now) different hospitals. I'm also grateful that we have such a team coming aboard to support Milo, and us as we continue to navigate the unknown. 

In the meantime, we are going to continue to love on him, advocate for him, and share his story. 

As always, thank you for the love and support for Milo and our family! We love and appreciate you all.