32 Weeks, Mother's Day, and Another Appointment
Milo, we've known of your existence for 198 days. We learned of your congenital heart defects 81 days ago. We learned of your probable Trisomy 13 diagnosis 70 days ago, with confirmation just days later. In these past days and weeks, we have continued to love you, fight for you, and have hope for you in ways we would have never imagined.
Each day comes with smiles and some shreds of grief, although we continue to try to remain optimistic. Yesterday being Mother's Day, was one of those days where both grief and joy had to coexist. Milo was especially wiggly, and it was such a sweet reminder of the little fighter I'm growing (see video below). We also spent a lot of quality time with Ryleigh and Oliver which is just as special. However, I also broke down when realizing this may be my only Mother's Day with all of my kids with me. Josh pointed out how lucky we are to have this day with him, which is true, but it doesn't take away the hurt that comes with the idea of losing him. I'm hoping that we will get to celebrate many more holidays with Milo, though.
Today, we had a more optimistic day. Josh and I went to my 32 week appointment in Wausau which was also my first Non-Stress Test (NST). If you haven't had one before, they put monitors on you to measure baby's heart rate, track contractions, and then you get a clicker to click each time you feel the baby move. This helps to catch any concerns with baby in utero. I was hooked up for awhile, I'd guess longer than I needed to be based on the way Milo was moving around. Our doctor came in, took a quick glance and said something along the lines of "Oh yeah, we're good here." We then talked a bit about our meeting with NICU last week, where we are leaning between care in Madison and Wausau, and his experience with Trisomy 13 babies. He then asked if we wanted to take a peek at Milo, which I happily agreed to. I laugh because when I was pregnant with Ryleigh, I was so "anti" any extra interventions, monitoring, etc. Now here I am asking for pictures every visit! Milo is head down, which is exciting! Hopefully he stays that way. But then as the doctor was scanning, he made a confused face, which I caught immediately. He then turned to us and asked "Has he always been measuring right on track?" Which he has. His 28 week ultrasound report say 59th percentile (although I'm fairly certain the tech had said 39th when we were in the ultrasound), at 22 weeks, he was in the 31st percentile, at 20 weeks he was 36th percentile. Today, he was measuring around the 40th-50th percentile on the portable ultrasound, which can be a bit off. The surprise on the doctor's face was honestly what we needed to validate our feelings that Milo is writing his own book with his T13 diagnosis. He's estimated to be about 4lbs already, has hair, and is practicing his breathing! Our doctor also shared that other T13 babies he's seen have been very small in comparison to Milo. We will get a more in-depth scan and an echocardiogram in Madison next week, which will give us a better idea of where he's at.
Again, we left our appointment feeling relieved, and hopeful for our little guy. This continues to be a feeling we've had after each appointment in Wausau, but not in Madison. I think what we are seeking is that personal piece, where our baby is a baby and not a number. I'll be curious to see how we feel leaving Madison next week.
After the appointment today, Josh and I had bigger questions. Why is Milo growing so well if this diagnosis should be inhibiting that? Is there something that's been missed? Is there any chance of him having a less severe form of Trisomy 13? The list goes on... So I went back to do some reading and also to pull up our test results from March, and I found some varying information..
-In our amniocentesis results, it says 92% of his cells in the sample were impacted. The genetic counselor said this is full trisomy, but I am also curious to see if we can have him tested again after he's born to see for another reason...
-Also in our test results, I was reading the fine print and it says **Limited Analysis: Due to poor growth in the culture, only ten cells from eight colonies were available for examination. Standard analysis requires fifteen colonies.
These two things alone are making me wonder if there's any chance he has Mosaic Trisomy 13 as opposed to Full Trisomy 13. While this wouldn't change much for Milo, it might open some minds of doctors. It's definitely a question we are going to ask to see if he can be tested after he's born, especially given the limited sample size.
Now, I am still fully aware that our child has Trisomy 13, and that the odds of his survival are slim, but today I feel optimistic. Milo is continuing to grow, he's strong, and continues to do all he needs to, to make his entrance into the world. It's just absolutely crazy, and also anxiety provoking to realize that he will be here in 5-7 weeks.
While we cannot wait to hold you in our arms, Milo, we definitely want you to keep cooking awhile longer! We love you, little one!
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