34 weeks

If I would've written this post earlier this week, I think it would've been quite raw, and not as optimistic as the posts I've written prior. As each week passes, the reality that Milo is coming sooner than later hits harder and harder. As silly as this sounds, I JUST had the revelation that my health and well-being is a factor in Milo's birth and life after he's born. It truly wasn't until last week that I thought about how I will have all the postpartum care and recovery, regardless of Milo's outcome, and that really sat heavily on my heart. Postpartum is so hard, but the idea of having to go through it while also not having a little human to care for is just gut-wrenching. I definitely am trying to remain optimistic that we will get time with Milo, and have an opportunity to care for him once he's here. It's just that the 'what-ifs' that I haven't let in since our diagnosis are much more real, and are things that we will have to face in the coming weeks, so it's much harder to keep them at bay. 

This past weekend, we started talking to Ryleigh about all things Milo. Unfortunately, the night we were going to start our conversations, we found a baby bird dead in our driveway, so we had a conversation about life and death instead and didn't associate Milo in any way. A few nights prior to this, while snuggling in her bed, we ended up talking about Grandpa Dave. I was using a blanket I had made him when he was going through chemo the first time, and I said something about how I made it for him while he was sick. Ryleigh immediately associated it with a stomach bug and said "He frowed up?" which then made me realize to NOT use the word 'sick' as we navigate these conversations. We talked about how Grandpa Dave had cancer and he died. She has since built an association with the baby bird dying and Grandpa Dave dying. While I don't want to associate our Milo conversations with death, I am grateful that these natural conversations have happened to hopefully help her better understand if the time comes. 

**Milo is kicking me as I type this, so it's like he's saying, "Hey Mom, quit talking about that!!" 

The next day, we started reading some of the "Born Abel" books we purchased. We read the two that specifically talk about trisomies and what makes babies with a trisomy diagnosis extra special! The beautiful thing about these books is that each child in the illustrations is based off of a real child with that diagnosis. They also show all the devices the children use like NG tubes, trach tubes, etc. 

We talked to Ryleigh about how the doctors will help Milo and figure out what things he might need. Yesterday, I was talking to her and she told me how Milo has Trisomy 13, and he has special eyes and a special heart. It meant so much to hear her say it because I felt the first conversations she was being super silly, and not retaining it... But she sure did. I'm sure she will be one of Milo's biggest advocates as he continues to grow. We have tried to stick to facts and not leave much gray, because there's a lot of gray right now, and it could be confusing to her. She continues to go to therapy, and she went with Josh this week, which was good to have that time with the two of them. We plan to go as a family once school gets out. 

Today, I had my 34 week appointment with my OB. We did the NST for the week, which Milo rocked as usual! His heartbeat is strong, his movement is plenty, and they had no concerns. These will continue weekly (or more often) until he's here. As I left my appointment, I felt like our doctor has as much wonder and hope for Milo as we do, which is not something I felt when we'd leave Madison. For example, today our doctor mentioned how Milo is the biggest T13 baby he's ever seen. We talked about the amnio sample size not being a standard sample size. We talked about mosaicism, and the many other wonders that come with this diagnosis. Never once did I feel like I was silly for feeling optimistic that we will get to meet him and hope for a life with him in it. I felt supported in feeling that way, while also being fully aware that we may not get that opportunity. However, he continues to prove to us all that he's going to continue to fight, so I think that's just what we are going to do too. I'm just grateful we've found a doctor and team that feel he's worth the fight.