We're home!

We made it home! We found Max at HSC this morning ready to leave:



As I was changing Max I noticed something he wouldn't be needing:


Carolyn and I practiced placing a feeding tube up a baby's nose on a practice doll. Then I did it for real. It was certainly interesting. I put the new feeding tube in the other nostril. Carolyn carefully wiped away the accumulated adhesive from the tape that had held the previous one in place:


And then it was time to leave. (Actually, I'm skipping over a lot of steps, but the HSC eventually let us go.) We loaded Max into the car in the HSC parking garage:


Max was very interested in the new sights and sounds during his drive home:


And then we were home:

Our night in the family apartment

The family apartment's kitchen
Originally uploaded by andreas.lehnert

Carolyn and I spent the night at one of the "family apartments" inside the HSC. These are fully functional apartments--kitchen pictured here--where families can practice giving all the care that the HSC patients will need inside a hospital, where help is just a shout away.

Last night, Max had his food provided by a hospital pump: The pump delivering milk through his tube had to be replenished every hour and 26 minutes. Although the actual process wasn't difficult, there's something about having one's sleep interrupted at the 70 minute mark that is uniquely disturbing. Thankfully, we'll be taking him home with an arrangement that doesn't need such frequent adjustments. It was kind of fun for a one night. After a week of this, I could see myself making more and more mistakes.

In addition, Max was on a full set of monitors. A friend described the monitors this way: When the alarm sounds your baby is either in serious danger, or he moved slightly in his sleep. Last night, Max's alarms went off fairly frequently--I'm sure he found the familiar tones and beeps soothing. Perhaps in time we too will become inured to them.

But really, the thing that interfered most with our sleep last night was Max himself. He was extremely cute throughout the night. He dropped off to sleep around 8:00 PM (before I got to the hospital in fact) and didn't wake up again until 6:30 AM. He seems to be a very active dreamer and was waving his arms and legs around, mewling and smiling frequently in his sleep. (Babies practice facial expressions in their sleep.)

The family apartment

This place is nicer than any apartment I've ever lived in. Max is sleeping soundly on his wedge. Carolyn & I are whispering but it struck us that this is the very quietest that Max has had it in his whole life. We're not about to set off a klaxon to test Max's tolerance however.

Spending the night at HSC

Carolyn and I will spend the night with Max in the family apartment at the HSC. We're excited but also nervous. Tomorrow we will still be excited, hopefully less nervous and probably more sleepy.

Di & Max

Di & Max
Originally uploaded by andreas.lehnert

Seen here, Max makes a new friend. After a vigorous physical therapy session, Max took a long nap on Diane. At the same time, Carolyn worked to make the arrangements to bring Max home. Inertia alone could keep Max at HSC for another month, but Carolyn is pushing through all the bureaucratic obstacles.

The countdown begins

Carolyn had the first really concrete and serious conversation with the HSC team about Max's release data. Two forces are converging: Max's improving robustness and overall condition, and the HSC team's belief that Carolyn and I can understand and carry out the complicated feeding regimen that Max is on. Rather than wait for Max to move to a simpler regimen--one carrying fewer risks should we make mistakes--the HSC team are willing to take a chance on our diligence and attention to detail.

Although like any time line this may skip, Max may be home 10 days from now. Much depends on how he tolerates the slight tweaks to the feeding plan that they're proposing, and there are a few other variables in plan that might push Max's release date back a few days. But, barring major complications, he will be home by early May.

Grabbing!

After a very deep sleep on me following his noon bottle feed, I had a play session with Max involving bicycling his legs, reaching for toys with him on his side while flexing his abs, etc. As part of our play sessions, I've noticed that Max loves to be tickled and kissed on different parts of his body. He gets a huge smile on his face and even laughs. When I was bending over him today, I felt a tug on my hair: Max had grabbed a handful and was pulling! Thinking this might have been an accident, I gave him another opportunity and he did it again. Very exciting. I've noticed over the past few days that he is doing a better job grasping, opening up his hand, then clasping whatever is in it and holding on for a good while. He also wants to bring things to his mouth.

Max's feeds are now compressed over 20 hours (at a rate of 34 ml/hr), so he is getting four hours of a break at some point each 24-hour period. We are still trying to figure out exactly when that will be. We did get his vitamins changed to evening, when he is more likely to be asleep and less likely to spit them back up. Throughout the coming days, the HSC team plans to compress Max's feeding further, if he will tolerate it. While Max does have some emesis throughout the day, the doctors think that in general he is tolerating the NG tube and that he is gaining weight appropriately (he now weight about 13.5 lbs). The GI docs from Children's will assess Max on Tuesday and weigh in with any additional advice on the plan.

Max continues to be a social being: he just wants to see faces. The nurse tonight reported that after I left, Max sat in his stroller by the nurses' station for about an hour, until he had his bath and fell asleep for the evening.