In April 2018, my wife and I discovered we were expecting our first born. In August, our unborn son was diagnosed with Gastroschisis–there was a hole in his stomach and his intestines were on the outside of his body. I documented the experience as from diagnosis to discharge from the NICU.
- Abnormal Result. The Initial diagnosis
- Abnormal Result: November 4th Update. An update after three months of doctor’s appointments and monitoring.
- Abnormal Result: One Month Out. Anticipating moving town to Aurora, Colorado to be close to the Children’s Hospital.
- Abnormal Result: One Week Out. This was supposed to be about ten days before Henry’s birth. It ended up being only five day due to a complication.
- The Birth Story. I wrote this in the 48 hours after my son’s birth so as not to forget a thing.
- One Year Later. Update from the NICU on the one year anniversary of the death of his father’s father’s father.
- Big Baby Step. Accomplishments and forward progress in the NICU.
- Discharge. We were lucky to have an extremely straightforward recovery.
- Henry’s Due Date. A reflection on what we just went through.
If you, or someone you know, is dealing with an expectant case of Gastroschisis, please reach out to me. If the child is already born and you want to know about the recovery process, reach out to me. If you are in the NICU or anticipating being in the NICU for something other than Gastroschisis, please reach out to me. I wish I had known even half of what I know now. I didn’t even know what questions to ask. I hope I can be that guiding light for someone else.
Sofia and I found out about Henry’s birth defect with a test at 18 weeks. We had 18 weeks after that diagnosis to prepare for the NICU. Even with that preparation, I honestly had no idea what to expect. From dealing with nurses to becoming you newborn’s advocate, there is so much that you simply cannot prepare for. A support system is the best thing you can ask for. I was lucky enough to have that–both in my wife and in nearby family and friends. Even if I am a small part, I would love to be a part of your support system.
If you would like to reach out to me, my email is RichardThomasReilly@gmail.com