28 weeks, and a long day of appointments
So we have officially hit the third trimester! We've reflected a lot about how these past two months have crawled, but we are so excited to hit this next milestone. Milo continues to be an active and strong baby which is always reassuring.
Today, we had our big day of appointments in Madison. I am pretty exhausted as I type this out, so hopefully this all makes sense.
We started our day with a fetal echocardiogram followed up by a meeting with the cardiologist. The cardiologist went over the diagram we were first given, and shared some changes that they were able to see now that Milo is bigger. The biggest thing is that Milo's pulmonary artery has some blood flow in it. This could not be visualized in the first echo so this is good news. This means that Milo's heart is potentially able to function on it's own for longer than we initially thought. If his pulmonary artery was completely closed, a surgery would have been necessary right away to keep him alive. Now, the downfall of this appointment is that they shared they will not do heart surgery on babies with Trisomy 13... So as he would get bigger, we would have to look at other hospitals/options to support him.
After that, we met with a NP in the perinatal unit to establish shared care between Madison and Wausau. The crazy part of this was the NP worked in Point prior to moving to Madison and we had some other connections as well! The appointment went well, overall! She also worked with the OB I will be seeing in Wausau so that made me feel better about sharing care.
Then we got to have our growth scan. Milo was a bit camera shy today. He had both arms crossed over his face, so we weren't able to get a good profile. However, he did give us a sweet wave!
Following the scan, we met with Neonatology. This appointment was a bit of a reality check, and felt less optimistic. We talked about Trisomy 13, what life looks like for people who live with T13, and more specifically about Milo. So in his last two scans, Milo has had enlarged kidneys and a small stomach. Today, the term Dysplastic Kidneys was used to describe his kidneys, which if you google it, is not reassuring. Basically his kidneys aren't functioning the way they should. However, they are working to some degree because my amniotic fluid levels are considered normal. They also said his stomach is small which may indicate he's not swallowing as much fluid as he should. The neonatologist explained that these two things would also make it much harder for Milo to live after birth. We were given all the potential routes we could take: palliative care, medical intervention, or somewhere in between. They explained that given Milo's severity of his organs that he would need intensive medical care throughout his entire life. One thing they also said was to think about doing things 'for' Milo rather than 'to' him, which it important, but also felt a bit pointed in the moment. Our homework is to think about Milo's life and what we want for him, which is also a loaded question. There's so many things we want for him, but how do we even start considering what is best for him when he's not even earthside? We don't know how he's going to tolerate birth, or if he'll be able to breathe on his own, etc. It's hard to make a decision with these unknowns.
What it really is coming down to are these different questions:
-Do we want to continue close monitoring throughout the remainder of the pregnancy? This could increase our risk of having a c-section if Milo starts to show a decline.
-Do we opt to do less monitoring? Lessen our chances of a c-section. But then we don't really have the opportunity to intervene if Milo declines.
-Do we deliver in Wausau where we are closer to our support systems/family? We could have a chance to bring Milo home on palliative care and spend time in the comfort of our home, and Ryleigh and Oliver would also get a chance to meet and love on their little brother. Josh also mentioned that we could make some quality memories with him since we'd all be on summer break.
-Do we deliver in Madison where we have access to more medical interventions if needed? This could result in prolonged hospital stays, and the potential to not ever bring Milo home.
These questions feel impossible to answer. As I mentioned above, I can't seem to find what feels 'right' in this situation. If we were to limit the monitoring and deliver in Wausau, would I regret not having higher level care available to him should he do better than I anticipated? If we deliver in Madison, and Ryleigh and Oliver don't get to meet him, would I regret that missed opportunity? It's so hard to not get sucked in to the "What ifs" of this situation, but with all the unknowns, we are having to play out all of them to see what feels right.
One thing I've already done is reached out to other T13 parents on the various Trisomy groups I'm in. Some have shared their experiences with similar kidney issues, which has given me some hope. Many have shared that we need to remember the limitations of ultrasounds and diagnostics in utero. Others have reminded me that we know our baby best, and that's something I need to keep in mind too. Milo is SO strong. Even the ultrasound tech this afternoon commented about how powerful his kicks were during his anatomy scan. This is something that gives me immense hope. This paired with how he is following the growth curve of a "typical" baby tells me there's more to Milo than science is allowing us to see. I'm hopeful that we will get to see what a miracle he is through birth and earthside.
As I've said in each post, I am so grateful for our village. Thank you for all the positive messages, love, and support today. Thank you to our daycare who has taken care of dinner this week so we could take some of the mental load off. Thank you to my work who collected gas cards to offset the travel expenses. Thank you to my niece Kalee who has been babysitting for us with the appointment days. Thank you to the other Trisomy parents who listen, support, and love on us through this. Thank you, thank you, thank you. This journey has been SUCH a rollercoaster, and right now, I feel like we are in a corkscrew. I'm hoping that the ride isn't over yet, and that we might get to find some enjoyment in this last stretch.
Milo, as you continue to grow and prove all these doctors how strong you are, I hope you feel the love from our family, and our village. You are such a special little boy who has changed our family, and the world for the better already. Continue to prove the statistics wrong, and show them what a fighter you are. We love you so much.
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