Going on our first walk

Carolyn went into the NICU this morning having heard that Max had some dark vomit on his clothing very early this morning. It was the vitamins again! Perhaps Carolyn is on to something with her suspicions.

But the big news today was that nurse J. suggested Carolyn unplug Max from his monitors and take him for a walk. Max clearly enjoyed it; he stared at the pictures on the wall, he turned to voices when people to spoke to him, and made the soft cooing noises we sometimes hear from him when he's particularly content. Carolyn even took Max out into the waiting area between the two nurseries (the step-down nursery remains closed for lack of business). When Carolyn walked Max around, the standard rules of the NICU were all suspended, including the first rule of the NICU, which is not to talk to the other parents. Carolyn had a pleasant chat with the only other parents that have been there as long as we have. Because of the complete lack of privacy in the NICU we can't avoid following their child's progress; nor have they been able to avoid following Max's. It was nice, for a few minutes at least, to admire each others' babies, like real parents.

Carolyn is also quietly polling the nurses for their opinion of whether Max should have surgery to attempt to correct his reflux. Nurse J. reminded Carolyn that Max has had severe reflux almost since the start, certainly since mid-December, and he's had several opportunities to overcome it. She also said that in her experience she seen only very few complications from the surgery.

As for Max's reflux today, I would grade his progress as only fair. He spit up a couple of times, but not very much, and once because of the accursed vitamins. He had a very smooth feeding in the early afternoon, but his 5:00 PM feed was tough, with Max showing obvious signs of discomfort.

Finally, the nurses and Carolyn managed to get Max to take his Maalox by mouth. This is a milestone in my opinion, because taking food by mouth is something Max failed spectacularly at his first attempt back in December. At the time, the NICU team pointed out that the mechanics of swallowing depend critically on having a functioning and organized brain, and they blamed Max's problems on his hydrocephalus. Getting Max to swallow his Maalox wasn't easy: they had to put the Maalox in his mouth and then get him interested in his pacifier. A few sucks, a swallow, and it was down.

Lasix works

Nurse T. (a first-timer with Max---we're always surprised to meet someone new after almost three months in the NICU) reports that Max is having a quiet night. He was awake and alert for his 8:30 PM diaper change but is currently snoozing. The Lasix has continued its work all day and Max has had a series of very heavy diapers and lost 45 grams over the past 24 hours. Nurse T. got Max to suck on a pacifier. His sats remain in the high 90s, suggesting that either the Lasix or the ND tube is in fact giving him some respiratory support. However, Max is still prone to sudden but brief drops in his oxygen saturation. We think he's doing a little better on this front too, though.

Even after losing some weight, Max now weighs in at a hefty 3.3 kilos, or 7 lbs 5 ounces. One of the outfits Carolyn is dressing him has paws for feet. Also, Max now has several frog-themed outfits.

Original due date

Today marks both Max's 10 week anniversary in the NICU and Max and Ada's original due date. In one sense, Max is now a full term baby (and at about 7 pounds he certainly weighs as much as many terms babies). In reality, though, as nice as the NICU is, a day in the NICU can't compare with a day in the womb.

Max seems to have his days and nights swapped around, so that last night--when Carolyn and I were at home--he was quite active but today--with Carolyn there all day--he was quite drowsy. Needless to say, we'd prefer Max to be the same wake/sleep schedule as the rest of the world (college students excepted). Because Max is more active at night than during the day, the nurses are getting to know him a little better than we do. They report that he likes to be picked up to be soothed.

In medical news, Max gained more than 100 grams overnight but his diapers were relatively light, suggesting that he's retaining fluids. This can contribute to difficulty breathing, so the NICU team put Max on Lasix.

Carolyn tried exercising Max and getting him to use a pacifier. In both cases he seemed more interested in sleeping than in exercising.

Carolyn did learn an interesting fact about Max's condition and the NICU team's plan for him from physical therapist S. She said that (I'm paraphrasing) when it comes to the suck-swallow motion, Max's form, his technique, is fine. However, his endurance is poor. It takes Max a lot of effort to suck or swallow, so that he quickly becomes exhausted. Why is this? Because Max is devoting a large amount of effort to simply breathing. The plan is to let Max's lung capacity develop by feeding him with an ND tube, which ought to cut down on food aspiration. S. said that all babies learn to suck and swallow; the most urgent job for Max now is to get strong.

First day on an ND tube

Like lots of people all over the world, Max spent last night throwing up. However, unless there's been a sudden increase in the popularity of barium-based cocktails, I think Max was vomiting for a completely different reason than, say, the college kids who live next door to us. Max's swallowing study yesterday required him to drink some barium-laced milk, which can cause stomach upset. I think he settled down starting with him 8:30 AM feeding.

Max also got a different kind of feeding tube installed today. The NICU put in what I believe is called an "ND", or nasal-duodenal, tube (as opposed to the previous "NG", or nasal-gastric, tube). If I have this right, the tube passes through the pylorus and delivers food to duodenum. The idea is that this reduce Max's habit of inhaling the contents of his stomach that pass up the esophagus because of his reflux. The NICU team think that this "reflux aspiration" is affecting his lungs. They hope that the ND tube will lessen the reflux and give his lungs a chance to develop.

In the spirit of the season, a picture from one year ago today (we've got to quit spending the holidays in hospitals):