26 Weeks, and Some Thoughts
I had recently posted in a Trisomy support group asking many questions that I could maybe get some answers to.
Things like:
- What were the sizes of your T13 babies? Milo is in the 31st percentile as of our March 7th appointment so I'm trying to figure out if I should expect his growth to slow.
- Were you able to pump and give the baby milk through a feeding tube?
- Do you have resources for older siblings?
- Along with a few other questions...
In the last week, I tried to grasp what it would look like for our family if Milo survives, I have mourned the idea that I wouldn't get the endless newborn snuggles I had hoped for when we found out we were pregnant, and have worried about what would happen if Milo comes early. These thoughts come and go depending on the day, but it definitely has pushed me to seek therapy.
Today I had my first appointment with a counselor who I'm hoping to continue to work through this pregnancy with. Today she asked me to tell about the our village surrounding us during this time, and I was able to smile and share how fortunate our family is to have such a village during this time. We've had so many reach out to offer family photos, to watch the kids, to make/buy a meal, gas cards, groceries, etc. This journey would be IMPOSSIBLE without our village, so please, please know that we appreciate each and every one of you. Thank you for loving Josh, Ryleigh, Oliver, me, and our sweet baby Milo. He's kicking and wiggling away as I write this, which reminds me how much of a fighter he is.
With that, I'm excited to share some other updates... We are 26 weeks along today! Milo is such an active baby. Last night he kept me up for a half-hour because he was rolling and kicking so much. Our next set of appointments is on April 16th. I am SO grateful for our care coordinator for getting everything set up. We will have a growth scan and an echocardiogram. We will meet with another cardiologist, maternal fetal medicine, and neonatology. Our appointments run from 9:30am-4pm with some intermittent breaks throughout. I'm so grateful they are able to get us in all in one day, but I'm sure our brains will be jello by the end. We will certainly share more after we know more. :)
Sorry for such a long post today, but today is also the last day of Trisomy Awareness Month (March is the 3rd month, and a trisomy is a 3rd chromosome), so I wanted to share some statistics or things I've learned since receiving Milo's diagnosis this month:
- Trisomy 13 occurs in 1 out of 10,000-25,000 live births
- Trisomy 13 is also known as Patau Syndrome
- Most babies with T13 will have Complete or Full Trisomy meaning it impacts all their cells (This is what Milo has).
- Children with T13 often have many of the following:
- Heart Defects--Milo has 5 as of our last cardiology appointment
- Small Head
- Holoprosencephaly
- Cleft Lip/Palate
- Eye Abnormalities
- Kidney Defects
- And More
- Children with T13 will have developmental delays
- Survival statistics are changing rapidly due to medical intervention
- Previously 5-8% of living children would survive past 1 year
- Now The largest trisomy 13 survival study in the USA reported trisomy 13 survival of 11.5% at 1 year, and 9.7% at 5 years. [Meyer et al., 2016]
- They are finding that the median age is rising and medical intervention is helping allow children with T13 to survive past the previous statistics.
Now, these statistics seem scary, but my heart is really feeling like there's something more here with Milo. He doesn't have many physical abnormalities, and from what we know of his organ abnormalities, they are repairable. We've also learned that American Family Children's Hospital in Madison has performed cardiac surgery on a child with Trisomy 18, which gives us hope that they will be open to talking about Milo's heart and the surgeries he needs to repair it. He's growing at a "normal" rate and has been this entire pregnancy. He's so incredibly strong and proves his strength each day as he kicks and rolls around.
I've been extremely careful to not expose myself to too much doom/gloom surrounding Milo's diagnosis, and it has helped tremendously in navigating all of this. Here are some T13 stories that are featured on SOFT's Member Spotlight Page to give us all some hope:
You can find more stories on the Support Organization For Trisomy (SOFT)'s Facebook page. They've been highlighting stories all month. Maybe next March you'll get to see Milo's story featured!
Sorry for the long post. If you've made it this far, thank you. A huge thank you to our family, friends, coworkers, and anyone else who has been following along. Our Milo sure is making a difference in the world already. We are so grateful for that!
Okay, last thing, but I wanted to document it somewhere because it's adorable. Ryleigh is pretty well over the moon about her baby brother Milo (or My-oe as she says), and today at daycare she referred to him by name for the first time to her classmates. Someone asked her what her brother's name was and she said "Which one? Ollie is out of Mommy's belly and Milo is in Mommy's belly." It means the world to me that she's building a connection with Milo even when he isn't earth-side yet. <3
Keep growing, Little Love. We are so excited to meet you and hope for the chance to watch you grow. 💛
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