Though bathtime is usually in the middle of the night, Max got a midday bath & shampoo today (for reasons that are still not clear to me) from Nurse M. This happened just before I arrived, and I was sorry to have missed it. We haven't seen Max get a bath since one time in early November. They took off Max's cannula today at noon to see how he would tolerate it. Max's nurse today seems to think that he has things too easy and that it is time for him to start experiencing new things ("peel my grapes" she said as she walked by him today). I suspect the cannula move was her idea. During my visit this afternoon from 1:30 - 5:30 p.m., he seemed to be doing well breathing on his own: no bradys, just one apnea (according to the monitor, but I was holding him and I could swear he was actually breathing), and his usual pattern of quick desats into the 80s and occasionally the high 70s. His typical sats were in the mid-90s, and his respiratory rate seemed pretty stable, with little retracting. Our phone call into the NICU tonight continues good news on the cannula-weaning front, as Max's breathing pattern continues to be pretty stable. This is the 4th effort they've made to take him off the cannula, so maybe the 4th time is the charm.
Max spent his time with me mostly sleeping, though he did wake up for some calisthenics and to receive his public (our friend Margaret stopped by for an afternoon visit). He seemed to tolerate the activity pretty well, only turning beet-red a few times. Tonight's head circumference measurement is the same as last night's (37.5 cm) and the nurse reports that his head feels good. I think a head ultrasound is scheduled for sometime this week (the last one was just before Christmas).
Max's new year's resolutions: (1) keep head circumference growth stable and hydrocephalus in check; (2) breathe better, and (3) get the ND tube out and learn to eat from a bottle.
Showing posts with label breathing. Show all posts
Showing posts with label breathing. Show all posts
Sunday, January 4, 2009
Saturday, January 3, 2009
On the tilted bed
Carolyn and I split the day at the NICU between us. I went in the morning, and found Max tightly wrapped in a blanket with only arm free (see picture at the bottom of this post). I held him for a couple of hours while he snoozed. (We did some arm exercises with the one unswaddled arm.) Before I left I changed his diaper and took his temperature. It's always a rodeo, made somewhat more difficult by the radical incline the NICU team have Max sleeping on. He woke up in the middle of it, and I took the opportunity to do some leg exercises too.
When Carolyn got there Max was back to sleep, but woke up when she picked him up. She took the opportunity to do more exercises. He fell asleep in the middle of a leg lift.
No medical news to report. His breathing seems a little more comfortable, thanks to the combination of ND tube, Lasix, and, maybe, radically tilted bed.
When Carolyn got there Max was back to sleep, but woke up when she picked him up. She took the opportunity to do more exercises. He fell asleep in the middle of a leg lift.
No medical news to report. His breathing seems a little more comfortable, thanks to the combination of ND tube, Lasix, and, maybe, radically tilted bed.
Friday, January 2, 2009
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.
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.
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.
Thursday, January 1, 2009
ND tubes mean continuous feeding
Carolyn just phoned the NICU and got the nightly update on Max. She also reminded me that, with his new ND tube, Max is not fed every three hours as he had been. Instead, he gets a continuous trickle (20 ccs/hour) because the the duodenum cannot handle large quantities at a time. Max's food now hangs on what looks like an IV bag.
Max's night nurse, J., has had him for three nights now. She felt that his breathing was perhaps a little easier (he was "retracting" -- a sign of respiratory distress -- less often). She also thought that his head felt better, i.e. the fontanel was softer. As always we update his head circumference every night. Over the past few nights, Max's cranial growth rate has run just a little faster than the 0.5 cm/week rate that it had averaged since late November. No one seems to be concerned about this.
Finally, Carolyn informs me that Max has outgrown a lot of his preemie outfits and is now being dressed in normal newborn clothes. Can it be long before the "statistically significant" onesie reappears?
Max's night nurse, J., has had him for three nights now. She felt that his breathing was perhaps a little easier (he was "retracting" -- a sign of respiratory distress -- less often). She also thought that his head felt better, i.e. the fontanel was softer. As always we update his head circumference every night. Over the past few nights, Max's cranial growth rate has run just a little faster than the 0.5 cm/week rate that it had averaged since late November. No one seems to be concerned about this.
Finally, Carolyn informs me that Max has outgrown a lot of his preemie outfits and is now being dressed in normal newborn clothes. Can it be long before the "statistically significant" onesie reappears?
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