And Now There Are Three
The last few months have been a lot for the Miller family. If you follow either of us on social media you may have seen an update here and there, but we wanted to give a more detailed update for those who are interested.
The Summary Version
In mid-March 2022, Elizabeth was born at Children's Mercy Hospital in Kansas City. We spent the next five weeks in the Intensive Care Nursery (ICN / NICU) before coming home to Springfield. Over the past couple months we have had a number of follow up appointments to monitor her health plus an additional hospital stay last month due to respiratory issues. While we don't know when, the next 1-3 months is the likely window for Elizabeth's heart surgery to repair her AV Canal Defect (see previous posts for more on that). There are many challenges, but she is doing well all things considered.
The Longer Version
Our original due date was March 21 (Down Syndrome Awareness Day!), and we had planned to be in KC about a week prior in case of any challenges. After a routine scan showed some concerns we ended up going to KC a bit early for observation at Children's Mercy Hospital (CMH). This observation led the CMH team to admit Mary Erin to induce labor with the hope of a relatively normal delivery. 12 hours later, however, it became clear that Elizabeth had other plans. For the safety of both Mary Erin and Elizabeth the team determined an emergency c-section was necessary and within about 15 minutes we were in the surgical suite. Thankfully, the surgery went smoothly and both mom and baby were soon in recovery.
We had anticipated about 7-10 days in the hospital following delivery, however that was not to be. We ended up spending a total of 5 weeks at CMH, with all but the last few days in the ICN (their name for the NICU - neonatal intensive care unit). Those weeks were spent making sure Elizabeth was stable and able to safely get sufficient nutrition at home, while also doing a number of tests and scans to determine the best care plan for her heart defect.
One of the early sets of tests was a battery of genetic diagnostics. These tests confirmed the presumed diagnosis of trisomy-21 (down syndrome), as well as showing that Elizabeth has the most common "type" of down syndrome: a random genetic change that happens in the very early stages of cellular development. Her version isn't hereditary, it is just something that sometimes happens.
After several weeks, it became clear that due to the challenges with her heart, Elizabeth wasn't going to be able to take all her necessary calories by mouth. We discussed several options with the team, and decided to follow their primary recommendation of placing a "g-tube" - a small port in the abdomen which allows breastmilk to be pumped directly into the stomach. This allows Elizabeth to get food even when she is too tired to take breastmilk directly.
After a long five weeks, we were ready to come home! With lots more gear than the other two kids (oxygen tanks and monitors, feeding pumps and tubes, plus all the assorted baby accessories), we made our way back to Springfield.
It has taken some time, but we eventually found a new rhythm with three kids in the house. Elizabeth is fairly easy going, and the older two are wonderful with her. There are parts that are quite stressful. Over time her oxygen needs have increased, which means we have to watch her monitors closely. Using a g-tube for feeding requires a few extra steps and is a very different experience than the previous kids. We are now seeing doctors here in Springfield essentially weekly to monitor how she is doing in anticipation of her surgery.
While there are many more details, which we are happy to talk about if you're interested, we hope this gives you a basic view of the past few months in the life of our family. We have been tremendously blessed to have amazing support from our parents, family, friends, and church community. From meals and gifts to notes of encouragement and prayer, we have been sustained by so many acts of kindness that it is hard to say thank you to everyone adequately.
I've lost count of how many times someone has said, "You've got your hands full!" It is certainly true. We are tired, but we have good support, a good medical team, and Elizabeth is doing as well as can be expected given all the circumstances. So, we take each day as it comes, trying to find the blessings in each moment.
Thank you for reading and being part of our journey. We appreciate you! And, as usual, as a prize for making it this far, here are some photos of the past few months. Tap on any image to see it larger.
All the best!
