33 weeks and the final trip to Madison
Being fully transparent, I am noticing my anxiety getting worse as we approach the end of Milo's pregnancy. We have been so fortunate to get these past 33 weeks with him, but I am fully aware that each day that passes brings us closer to meeting him, and ultimately, the determination of how his journey will go. I've noticed I'm a bit more on edge, keeping to myself, and struggling to 'mask' my feelings around all of this. Learning of Milo's diagnosis and choosing to fight for him is by far one of the hardest things I've ever done, and I've done it while my heart breaks at the same time. It's this constant ebb and flow of trying to be optimistic, but also understanding the very heavy, heartbreaking outcomes that can come with it. Milo continues to show us how strong he is, and how he continues to fight to live, so we are ready to continue the fight for him. So here's what's new...
Today we had our LAST (yes, you read that right!) appointment in Madison. We've truly done a lot of reflecting and have decided that Wausau is the best option for our family to continue Milo's care closer to our support systems. Our morning started with a meeting with a cardiologist (the one who initially diagnosed Milo's complex congenital heart defects). He shared that Milo's heart is still too complex for American Family Children's Hospital to take on for surgery, but helped us determine a plan for after he's born to help give us some time to determine how stable he is. One thing I keep forgetting is that putting the trisomy 13 diagnosis aside, Milo's heart is still very complex, and would require very intensive surgery to repair. I'm not sure if I put this in prior blogs but his diagnosis is Double Outlet Right Ventricle (DORV), so his pulmonary artery and his aorta are both on the right side with some other defects that impact his heart function. However, once Milo is born, his heart may be able to function well enough for his body. We will need to just wait and see. We also had the next NST which he passed with flying colors. We also had his growth scan where we found he is currently at the 57th percentile and measuring at about 5lbs! His stomach is still measuring small, and his kidneys are measuring large, but my amniotic fluid is still at an appropriate amount, so there is some suspicion that the two systems are working enough to keep everything balanced.
Our plan after he's born is to stabilize and assess him to see how his systems are functioning. The neonatologist recommended that Josh and I talk about interventions we are willing to do or not (ex. chest compressions and intubation), as well as doing some homework of creating a list of centers that MAY be willing to take on Milo's cardiac surgery should we get to that point. From my findings on the many trisomy groups we are in, there have been a few cases similar to Milo where they did not do surgery at all, but ultimately Milo will write his story as we go.
Going forward, I will continue to have weekly NSTs to make sure he's doing alright, and we will likely schedule an induction closer to 39 weeks.
We have found some books for Ryleigh and Oliver from the Born Abel organization. We got the first book today which talked about having a new sibling with a medical diagnosis. I read through it and had to stop reading aloud because it made me cry. It talks about how they were excited about the baby, then mom was really sad, but then they learned their baby is different, and that's okay. It then talks about how the baby may need to stay in the hospital and the family has to be apart, but their family is still complete. I'm eager to read the other stories that are specific to Trisomy diagnoses. I think these will be so helpful as we continue to explain this to Ryleigh, and also Oliver when he's old enough to understand it more.
As our pregnancy nears the end, please keep us in your thoughts. We are so grateful for our village through all of this, because this weight is heavy on our hearts. Right now, we are finding peace in knowing that we will be close to home, so no matter the outcome, we will be close to our other babies, and our support system. We will continue to savor all the kicks (although the rib ones are starting to hurt!), and find joy in our pregnancy where we can. Right now, we are stuck waiting, so we will take it one step at a time.
Here's some photos and videos from this week!
Some 3D ultrasound photos. He definitely has the eye shape/face of a baby with Trisomy 13. 💛
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