DAY 40

It's hard to believe our little guy has arrived and matured as much as he has in just 40 days. Aside from being early, he's small—which translates into almost everything taking longer than "normal" babies. We've discovered we're on a journey that will take weeks and months and in some areas, years, to unfold. All of this reminds us of a line from the medieval poem upon which Dominick Argento composed his Jonah and the Whale...

Patience is a princely thing, though displeasing often.

Meanwhile, Felix's room in the ICC at Children's is a wonderful time warp (e.g. "Wait, did three hours just pass?") filled with curious, loving and patient staff, family and guests. And in this place, we are learning as much about ourselves as about our boy. And we are learning to acquire patience in abundance.

#FelixNeptune (you can refer to him by his formal social media name: "Hashtag Felix Neptune"), is incredibly resilient, surprising and a full time job. It is a blessing that Haley is able to play the role of his Chief Medical Officer, coordinating nurses and specialists. We are also very grateful for the advice and stories we've received from so many of you, often from similar circumstances. It's a gift to know we're not alone and that his path has been trod before. We've learned so much from all of you about growth patterns like his, breathing patterns like his, skin like his, feet like his, swallowing patterns like his, etc. Hearing the stories of your children and yourselves going through similar circumstances gives us additional courage.

So here's what we know at Day 40:

Felix is now 5 pounds 12 ounces (vs. born at 4 pounds 2 ounces). He's growing slowly but steadily! He's been breathing without assistance for over a week. He's fed 52mm of Haley's breast milk via a Nasal Gastric (NG) tube down his nose and throat, every three hours. Now, in order to go home Felix either needs to very suddenly acquire awesome breast feeding skills -- which is unlikely, given his current behavior and ability. Or, Felix will very likely undergo surgery to install a Gastric feeding tube ("G tube") to replace the NG feeding method. Installing a G tube requires general anesthetic (meaning, Felix will be asleep for the procedure). It's likely we'll do this surgery in the next week or so. And while we're not excited about surgery, we know the G tube is one of the many steps we need to take to prepare Felix for the journey home. We should also note the G tube will migrate to a Mic Key ("mickey") button several months later, i.e. a smaller version of a gastric feeding tube. This will also require surgery. (It is also very likely that, during the G tube surgery, we will also have his testes descended.)

<sigh>

#patience

Meanwhile, the Occupational Therapist has had great success with his joints. Felix can straighten his left arm! He's still tight all over, however. His butt and right arm need to loosen up. His fingers and palms are getting looser, but the two middle fingers on each hand are still tucked in and likely will be for quite a while. He can grip, and quite strongly, with both hands. His neck muscles are getting stronger—he can roll his head around, but can't yet hold it up on his own. Overall, he's moving around a lot more in the past week. You can tell he's getting stronger all over. Much of the physical therapy will play out over the next year as he gains weight.

Felix sleeps about 18 hours a day, which we know to be typical for preemies. When he's up, he's alert, eyes open. He can track movement with his eyes. He can hear. And it appears as if he's smiling every so often. He's often gurgling and cooing. All good signs!

When will Felix go home? We don't know yet. The G tube is one step closer. We also need to know more about the size and flexibility of his mouth and throat, which is a matter of time and, you guessed it, patience.

We should mention again how much we appreciate all of your Facebook comments and messages, your Instagram comments, your emails and your visits to the ICC. We benefit from your experience! We relish your concern and love! Thank you for keeping an eye on our family's journey. It will (patiently) continue!