‘This is the left field bleachers’

Autumn hangs out in our kitchen Jan. 12, 2018, a day after she came home from the hospital.

Autumn is home!

After 79 days in the hospital that started before Halloween and stretched past New Years, this little miracle is safe and sound at our house. And she is thriving.

Autumn doing what she does best — catching some ZZZs — Jan. 10, 2018, a day before she left the hospital.

When we first landed at the pediatric intensive care unit at Johns Hopkins Hospital, doctors told us Autumn needed to check five boxes before she could leave — pulmonary hypertension, respiratory support, sedation and pain control, feeding and fluids and … other. She has exceeded expectations (by multiple standard deviations, as one doctor put it).

• Pulmonary hypertension — Check. Her cardiologist cleared her last week, looked at us and said ‘This is the left field bleachers, a home run.”
• Respiratory support — Check. She breathes room air. Doctors are so astonished by this that they are actually going back to see whether the lung measurements they had at the beginning were accurate — or if something truly extraordinary/miraculous happened here.
• Sedation and pain control — Check. She overcame more than five different sedatives, successfully weaned off all of them and is going home with baby tylenol. We love baby tylenol.
• Feeding and fluids — Still working on it, but we can do that at home.
• Other — Check. After seven procedures under anesthesia including five separate surgeries, we’re all pretty confident that the quirks of her anatomy associated with CDH have all been addressed.

The journey continues

Autumn’s big thing has been feeding and fluids: Due to the nature of her CDH, particularly the fact that her stomach developed in an unusual place during gestation, it is just going to take a little longer for her digestive system to function properly.

These are from a photo session with this amazing charity called Flashes of Hope that takes portraits for families in the hospital.

For now, the fix is two feeding tubes, which were installed surgically between Christmas and New Years. They are not expected to be permanent. It’s our hope that she won’t be needing them, say, on her first day of kindergarten (although of course it would be fine if she did). But the surgeon told us he expects her to be a perfectly ordinary kid who eats food in the ordinary way in a couple of years. That sounds great to us.

Autumn in her “I’m Leaving The Hospital” outfit on Jan. 11, 2018.

We are going home with medical equipment and instructions to make sure she gets what she needs. We are catching up with Lincoln’s foster mom and working out a plan for bringing home the pup. We are figuring out life after the hospital.

It will probably be some time before we fully appreciate everything that has happened. It will probably be even longer before we can fully and properly thank everyone who has contributed to this awesome story.

Thank you for following us on this journey and for supporting us. You have lifted us up and given us the light we needed to see the way forward.