The First of the Anniversaries..
February 20th, 2025: Maternal fetal medicine found the heart defect. We agreed to do genetic testing to see if there was a cause for the heart defect.
February 28th, 2025: We met with the cardiologist and learned everything with our baby's heart could be "fixed" through surgery.
March 3rd, 2025: I had received the NIPT test results saying there was a 68% chance that our baby had Trisomy 13. When we had gotten the results, we had never even heard of Trisomy 13. I remember looking it up on my prep period at work, and having to pull myself together to pickup my class after their encore class. My OB had called me after work, but I was already crying, and she realized I had already read the results on the online portal. She told me that the maternal fetal medicine doctor would be in touch to schedule an amniocentesis.
March 4th, 2025: We hadn't wanted to know the baby's gender, but after the results, we felt that we should find out the gender too, we learned we were having another BOY! We also got our first Madison appointment scheduled for that Friday.
Which leads to one year ago today... The day that our world officially turned upside down. After we got the NIPT results, I really held on to the fact that there was still a 32% chance that our baby didn't have Trisomy 13. They hadn't found anything else wrong besides his heart and that his brain was measuring small, but looked good, at our anatomy scan. But when we pulled up to the hospital, the reality set in. We wouldn't be at this hospital if everything was "okay." It felt overwhelming having to check in to a front desk, having them scan your driver's license, and print a sticker to wear throughout your day. We sat in the waiting room of the Perinatology area, waiting for our scan. We had our scan, and got to see our active little boy. He wasn't super cooperative, but we loved getting to see him on the screen. After the scan, we were brought to a consultation room with our Care Coordinator (a nurse who worked with our family to coordinate appointments and support us through our care), a genetic counselor, a maternal fetal medicine doctor, and her fellow. In that meeting, they shared more findings about our baby that we hadn't known prior. They found his kidneys were enlarged, with potentially having double arteries running to them, they confirmed the heart defects seen prior, small and potentially absent eye tissue, and more. Talk about a gut-punch. All the findings supported the NIPT test in suggesting our baby had Trisomy 13. The fellow was the one who shared the findings and said he was so confident our baby had it that we didn't need to do an amnio, however the genetic counselor shared that by doing the amnio, we can get some further information about his trisomy, whether it's partial or full, a mosaicism, and whether it was free-standing or attached. Had it been attached, Josh and I would've had to undergo genetic testing for our other kids as they could've carried it. It was also in this appointment that the fellow shared how babies with Trisomy 13 were "incompatible with life." He shared it so matter of fact, and with little compassion, and those words continue to replay in my head.
Between appointments, we walked the hospital. I remember trying not to cry. As we sat in the main waiting area, we saw a woman come into the hospital in labor. I remember trying not to completely break down, as she was going into potentially one of the best days of her life, while we were muddling through our worst. As we sat in another waiting room, we saw a pregnant mother in an inmate jumpsuit, escorted by two police officers. The anger that arose in me was unreal. How could we be in the position we were in, when we've done everything "right"?!
Then we went for our amnio. I remember laying on the table being terrified that they were going to hurt my baby. So I tried to lay still, and stifle my sobs. I turned my head towards Josh, held his hand, and squeezed my eyes shut as hard as I could. This had to be a bad dream, right? The fellow did the first attempt at getting the amniotic fluid, and it didn't work. So they had to try a second attempt and were successful. But man, did that suck. I then remember the fellow asking the doctor something, and she said "that's just the color of the fluid." which made me nervous too. Thankfully, the procedure was over, and we had to meet one more time before leaving. We knew that we would have the initial FISH test results back early the next week, and then a confirmation about 10 days later of the deep analysis of the chromosomes.
Josh drove home that day, and before getting in the car, he told me we couldn't talk about it because he needed to be safe while driving. I was a blubbering mess for most of the way home. How could a pregnancy that felt so "normal" be so abnormal? We texted our families and friends updates because there was no way I could even explain it at all without breaking down. As I texted people, I remember turning to Josh and saying "How ****** up is this?! We literally just talked about the birth and death of our baby in one day!" It absolutely made no sense. I kept trying not to bring it up so Josh could focus, but I also am an external processer. We also in that car ride talked about how people are going to say stupid things, that they think are well-meaning, but really aren't. It was truly two looooonnnngggg hours.
That weekend, I was completely disassociated from my family. I read blog after blog of parents with Trisomy 18 babies. I found pages of families with Trisomy 13 babies. I found the SOFT organization. I found support pages, and more. I fully dove in to being an advocate for our baby in any way I could. I learned March is Trisomy Awareness Month, and that the 13th is Trisomy 13 Awareness Day. I quickly realized I, too, wanted to start a blog and be a support for other families. March 11th, we shared out our news with everyone. You can find that first blog post here. March 13th, we were shown such an outpouring of love. Friends, family, coworkers, and more came together and showed their support by wearing the T13 colors: pink, yellow, and green. It was truly amazing to see how loved our little boy already was.
Now, here we are a year later. The weight of it all is heavy. I've found that the last 8 almost 9 months since Milo's birth, I've been in survival mode. Now that we are hitting the "anniversaries" of these days, it feels raw again. I haven't done as much grief work as I have wanted, but between caring for our little humans at home, and my bigger little humans at school, there isn't much time for me. This week at therapy, my therapist said "What happened to you is heartbreaking, and I have never heard you refer to it as that." and that broke me. It is heartbreaking, but if I say that, then I break. His loss is still so heavy, and hurts so bad. Even if I say, "I'm okay." it's easier than actually being honest about it all.
Since my last post, Milo has made an appearance in more Born Abel books. He and his siblings are actually on the cover of one! You're able to purchase it here. I love having a picture of all three of my babies together in color. <3
His aunt, uncle, and cousins continue to make his special spot so beautiful. He sure is loved.
Sending all our love to the skies, Milo!
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