Our Miracle, Milo

  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...  One of the answers I received on the post has really stuck with me. It encouraged me to get everyone into therapy. The person explained at any given moment, you are grieving what you expected that didn't come, grieving what you had and then lost, or preparing to grieve their ultimate end... This comment is spot on.  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...

We've made it another week! Keep growing, Milo James! I've mentioned this journey has been such a rollercoaster. Today was one of those days... We were all in the van running errands and Ryleigh pipes up from the back seat, "Momma, I'm gonna hold Baby Milo in my arms. He will be so happy." It's in these moments where my heart melts at the idea of Ryleigh taking on the big sister role again, but at an age where she can participate more. But it simultaneously breaks because how on Earth do you explain this all to a 3 year old?! We initially told her that he has a special heart, prior to the T13 diagnosis, but haven't really talked about anything else since. We just talk about Baby Milo in Mommy's belly. The hospital gave us the book, "The Invisible String" which we are grateful for, but we need to continue to dig into more resources available to support her and Oliver during this time too. On Saturday, we jumped on a SOFT (Support Organization ...

Today we got a phone call with the last of the test results from our amniocentesis. The karyotype test confirmed what the NIPT, and FISH tests have told us the whole time, that Milo has Trisomy 13. The good news in this, is that the karyotype test showed that he has a third, free-standing chromosome which means that there is no hereditary component and it's just that he won the genetic lottery. If it had been attached to the chromosome pair, Josh and I would have had to undergo further genetic testing.  Our team also did a test from the amniotic fluid called the AFP test. AFP stands for Alpha-Fetoprotein. Elevated levels are often associated with neural tube defects or other defects in the abdomen. Our AFP levels were elevated, however the care team reviewed the scans from a few weeks ago and there were no findings in the scans to support the AFP results. There are some other potential causes such as placental bleeding, which they had found but were not concerned with at this point...

A couple of days ago, I decided to order a baby book for Milo. We have our ultrasound pictures, the story of finding out we were pregnant, and I wanted to ensure we had a place to put it all, so I bought the same baby book Ryleigh and Oliver have.  Then today, we got home from our mini-vacation and I saw the package on our doorstep. My heart sank and felt so heavy realizing that it was the baby book I've so eagerly ordered for our older two. When we looked into ordering it a couple days ago, it felt like things were 'normal' and I even made a plan for if we don't get to fill out the monthly/yearly milestone pages. Today, it was a harsh reminder that each day is a gift, and we don't know how many days we will get.  I've read through many blogs and talked with other moms who have walked a similar path, and I know that this is within the realm of normal but it doesn't necessarily make it any easier. Some days you can take it, other days it hits you like a train...

How lucky are we to have had 24 weeks with you, little love. This month has been such a rollercoaster of emotions, but we are finding such peace in your movements and strong heartbeat. Today, I had my 24 week appointment where my OB explained that all my care will be transferred to Madison going forward. I’ve posted in a few trisomy support groups and many parents shared what positive experiences they’ve had in Madison. One momma even shared she delivered her baby with T13 there a few years ago, so we know we are in good hands! We also are so excited to share that we’ve finally come up with a name that fits for our little guy. We’ve named him Milo James Reinke. Milo means soldier which is so fitting for our boy. Thank you for all the love, thoughts, prayers, and support we’ve received. We are so grateful for our village.

Our Pregnancy This Far...  -Saturday, October 26th: The faintest positive pregnancy test! -Wednesday, November 27th: We started telling our family and friends. -Friday, December 27th: We shared our exciting news with all of you! -Friday, January 24th: We thought we lost the baby, but thankfully they are a fighter. -Monday, February 17th: We hit the half way mark! -Thursday, February 20th: We had our anatomy scan where we learned our little love has a complex heart. We also were encouraged to do a NIPT blood test to screen for any genetic abnormalities in relation to the heart defect. -Friday, February 28th: We learned our little love’s heart, while complex, is repairable. -Monday, March 3rd: Our NIPT test results came back for an increased risk of Trisomy 13, and an urgent referral was sent to Madison for an amniocentesis and in-depth scan. -Friday, March 7th: We went to Madison, got to see our sweet baby. We saw their beautiful face, the feet, and everything seemed perfect. In our...