Evening Update (Monday 1/12)

Lots to report today. I'll start with a recap of Carolyn's very nice day at the NICU, and then discuss medical developments, the treatment plan, and some advice we got from Dr. B., who is fast becoming our favorite attending. Readers who make it all the way to the end will get to find our why we're such big fans of Dr. B. and get some other welcome news.

Carolyn arrived this morning to find Max awake and alert in his frog chair (a bouncy seat). This is his usual routine: wake up quite early -- before the 7:00 AM shift change -- and spend the morning taking in the NICU from his chair. Carolyn spent some time playing with Max before he became drowsy and fell asleep again. Around 1:30 PM the NICU team pulled Max's ND tube back slightly so that it no longer terminates in the duodenum (the "D" in "ND"). Instead, it terminates in the stomach, making it a more normal NG tube ("G" for "gastric", I believe).

Physical therapist J. arrived a little later, and Max enjoyed another successful physical therapy session. He tolerated it well, tracked motion with his eyes and completed the usual routine of PT exercises. In the past, we've had trouble convincing Max to follow objects with his eyes. Physical therapist J. said that babies are much more likely to follow a face than anything else. I believe this is why infant toys often have stylized faces on them. She encouraged us to spend time playing, singing and otherwise interacting with Max when he is awake and alert. She emphasized that it's especially important to make eye contact with Max while we're playing with him.

After his workout, Max was quite alert. Carolyn followed J.'s advice and interacted with him. In addition, Max received a steady stream of visitors who dropped by to say hello. Max was very alert and focused for a couple of hours. The nurses tell us--and we've tried to resist facing up to this for as long as possible--that Max is uncomfortable when he has a load of stool in his diaper. This marks him as different from his brother and, indeed, his father and uncle. As the afternoon ended, Max was clearly bothered by something. It turned out to be a diaper full of stool.

One of Max's visitors this afternoon was Dr. Sh., one of the NICU fellows. We first met Dr. Sh. when the NICU team sent her over to see us while Carolyn was still pregnant, but in pre-term labor. She gave us what we recognized at the time as a standard what-to-expect-when-you're-expecting-way-too-early speech, a kind of harsh introduction to the NICU that emphasized everything that could go wrong in premature babies. Dr. Sh. told us then that preemies had trouble with their lungs, that they were prone to head bleeds and that they could have gastric problems. She also told us that we could expect the NICU to hold the twins for seven weeks before sending them home with us. The speech left Carolyn and me suitably terrified. Since then, we've come to know Dr. Sh. as a caring and humane doctor, and someone we can work with quite well.

Because the NICU team rotates their schedules over weekends, Carolyn makes sure to find someone on Friday who will at least overlap wth the weekend team to feel Max's fontanels so they can gauge whether Max's head changes over the weekend. (Carolyn told me that she feels that the NICU team thinks has become a crazy NICU mom.) Dr. Sh. was one of the group Carolyn drafted to keep continuity of care for Max's head over the weekend.

But I actually think Dr. Sh. dropped by because Max is one of the most popular babies in the NICU. Of course, we think Max is incredibly cute (pictures don't do him justice) and has a winning personality. But even beyond these elements of charisma, I think that the NICU team love to see what they consider a true NICU success story; they can look at Max and feel good about all of the work they've done over the past few months. I continue to believe that, although the NICU team are marvellous, the babies do all the actual work.

With the ND tube now replaced by a NG tube, Max faces another test of his abilities. Will he be able to control his esophagus and associated muscles properly so that he doesn't breathe in the milk he refluxes back up? The NICU team believe that this kind of aspiration caused his earlier breathing difficulties, and indeed since they moved to an ND tube (from which milk cannot, in principle, escape) his breathing has become a lot stronger. If Max can keep from stressing out his lungs too much, the NICU team will gradually reintroduce a standard feeding schedule. (He's currently on a continuous slow drip.) If Max can't control his eating, the NICU team will consider other alternatives, some of which involve fairly drastic surgery.

Carolyn spoke with the attending, Dr. B., again today. Dr. B. is fast becoming our favorite NICU doc. She apparently does not subscribe to the quasi-religious attitude of extreme pessimism favored by the other NICU attendings. She told Carolyn that, over the week she has treated him, Max has become a "different baby"--he is stronger, has better color, and is more stable. She also told Carolyn that it is time "to quit waiting for the other shoe to drop."

Along those lines, Carolyn spoke to the NICU tonight. Max has handled his first 10 hours back on an NG tube quite well, with no desats, not to mention episodes of apneas or bradycardia. In addition, nurse K. measured his head circumference and found that it had dropped -0.5 cm from last night, leaving it at 37.5 cm.