Day 20

It's amazing how quickly we humans grow, how we change, how different we are from one day to the next, never mind one moment to the next. The past 10 days have been filled with change for Felix Neptune.

Let’s begin with the biggest change, and the best news: We graduated from the NICU to the ICC (Infant Care Center) four days ago. This means we've gone from crisis management to life skills management. The ICC is where babies and parents learn about each other and prepare to go home. We focus more on breathing, feeding, sleeping and growing. This means lots of “Kangaroo Care” or skin-to-skin time with Mom. Now that Haley is feeling more confident getting little Felix in and out of bed with all the connected wires, we are able to do this much more. This is the “soft” science–it’s not a pill, a machine, an exercise. It’s basic and human and gosh golly gee does it make Felix look and respond better to life.

Another big step this week was learning to take a pacifier. Felix is able to suck on a small one for about 5-10 minutes, but we need to continue to strengthen his sucking muscles so he can move on to a larger pacifier and eventually Haley's breast and/or a bottle. And once he's demonstrate he can feed, he's much closer to going home!

In the images below, you'll also see Felix's hand therapy bands—which help open up his tight muscles and encourage flexibility.

Felix had his first bath two days ago. He was very calm and relaxed. Even babies get all kinds of dried sweat and other yuckiness stuck to their skin. And his hair definitely needed some styling. He seemed to really enjoy the experience; so much so that when we took him out of the tub and wrapped him in a towel, a little yellow spot appeared.

We are continuing to learn a lot about our new friend each day. He opens his eyes a little bit, now and then. He gestures with his hands like a Roman cherub statue. And he’s been making many more sounds, which are best described as Young Chewbacca. What do these signals mean? Most often, they mean poop.

But, Felix has been struggling a bit with breathing. Rather, he has randomly and occasionally stopped breathing. Scary! Most of the time, he self-corrects and returns to normal breathing. So the amazing doctors at Children’s have been trying to determine the cause. Our evidence is this: Felix makes more noise than usual. His heart rate climbs. Then his oxygen levels plummet. And he turns red, then dark red and (rarely) somewhat blue. (Again, scary!) We’re fortunate Felix is hooked up to many monitors and the nurses on call are steps away so we help him recover quickly.

We decided to hook Felix up an EEG machine to measure his brain activity. Seizures can look very different in babies than adults. Was the cause of the random stop-breathing episodes a seizure? Well, after less than 24 hours the neurologist was seeing only regular brain activity. Meaning, NO seizures! Our next step in the detective process is a visit from an ENT (Ear Nose and Throat) specialist to see if they can tell us anything else. Every day we learn a little more and get a step closer to making sure he's able to keep breathing on his own.

Breathing is our first skill to learn, and truth be told, Felix is doing very well. He’s not in the NICU and he’s only using the barest amount of respirator support, much less than 10 days ago. We’ll soon figure out what’s causing his erratic breathing. The current hypothesis is liquid build up in the back of his throat—perhaps caused by moisture delivered by the respirator. Or perhaps his throat muscles are still immature.

So breathing is our first priority, as it should be for all of you, too. Then we’re also working on feeding. For now, Felix is still gaining nutrition from his NG tube through his nose into his stomach. Haley is building a ready stockpile of milk in a deep freezer generously donated by one of the gals she met through the Blooma Facebook group.

We don't have a discharge date yet, but we suspect it won't be any earlier than sometime in March. Haley continues to be at the hospital 8am-8pm daily meeting with doctors, helping with diaper changing, feeding, physical therapy, kangaroo care and learning a whole heck of a lot!

Haley's mom Carmen has been a HUGE help these last two weeks cooking, cleaning, helping with Maks and Eli. We are so grateful for her presence and compassion and wisdom.

We've been blessed with many friends and family visiting, including both grandpas, Philip and Stan. It's been great hearing their stories and understanding the broader web of family history into which Felix Neptune is now a member.

We cannot say enough good things about the staff at Children's as well as the resources available here: lactation consultants, support groups, family resources and outings like this past weekend's Rock the Cradle event. We've also been taking advantage of the volunteer cooked meals at the Ronald McDonald House. We intend to volunteer there for families in the future, it's an amazing way to give back and let people know you understand what they're going through.

Thank you all so much for your outpouring of love, prayers and support. Please know we are very appreciative of all the thoughtful gifts and messages you've sent.