This morning confirmed our discoveries last night. We were informed by the pediatrician on staff that there was nothing in Griffin's chart that allowed for breastfeeding. She explicitly told us that this was counter to their need for accurate measurement of fluid intake, and that she had "no idea" how that could have been misinterpreted.
So much for the bad news, now on to the good news. Griffin is eating well (23 ml this AM), his glucose levels are back to a good level, and he is perking up during lunch. All this implies progress, and the prognosis has not changed: complete recovery expected. The date of his release did shift to possibly Thursday next, and that's somewhat annoying, but we are still very lucky to have the best care for our little bean.
Showing posts with label nicu. Show all posts
Showing posts with label nicu. Show all posts
Sunday, February 7, 2010
Shift Change
There is nothing quite as maddening as being a Cassandra in a room filled with optimists. Especially if you let yourself be convinced.
This afternoon went well enough, but we were not really on the best of terms with our assigned nurse. Perhaps that was due to my telling her, frankly, that my wife and I "look tired" because we are worried about the wee man's dining habits, and that using the former as an excuse for not telling us about the upgrade to the latter was a bit counterproductive.
She solved that miscommunication by trying not to communicate anything at all from there on out. We got to participate in two good feedings with S starting the show and a bottle of expressed milk to follow. By the second feeding, S was starting to worry that the reliance on breast feeding was going to make hash out of their carefully calibrated balance between the ingested food and the glucose IV. The nurse assured us that the glucose readings were all that was necessary to maintain an even keel. Then she disappeared until we were ready to leave the NICU.
Fast forward to shift change, when the night nurse informed us that they were only going to let us feed Griffin by bottle, and we were to try for exactly 15 ml of expressed milk. His glucose readings, which had been holding steady at 60 plus or minus, at 8:30 PM dropped down to a 51. Then, three hours later, they measured in at 114. Hash, anyone?
This afternoon went well enough, but we were not really on the best of terms with our assigned nurse. Perhaps that was due to my telling her, frankly, that my wife and I "look tired" because we are worried about the wee man's dining habits, and that using the former as an excuse for not telling us about the upgrade to the latter was a bit counterproductive.
She solved that miscommunication by trying not to communicate anything at all from there on out. We got to participate in two good feedings with S starting the show and a bottle of expressed milk to follow. By the second feeding, S was starting to worry that the reliance on breast feeding was going to make hash out of their carefully calibrated balance between the ingested food and the glucose IV. The nurse assured us that the glucose readings were all that was necessary to maintain an even keel. Then she disappeared until we were ready to leave the NICU.
Fast forward to shift change, when the night nurse informed us that they were only going to let us feed Griffin by bottle, and we were to try for exactly 15 ml of expressed milk. His glucose readings, which had been holding steady at 60 plus or minus, at 8:30 PM dropped down to a 51. Then, three hours later, they measured in at 114. Hash, anyone?
Saturday, February 6, 2010
Small Miracles
Thank goodness for them, right? We just returned from feeding our small peanut -- that's right, campers. Griffin is eating again, and his appetite has increased greatly since we first started. S got a chance to nurse him directly, and that made all these past three days just melt away.
After a solid ten minutes of that, it was time for me to try and get him to eat some from a bottle (no formula, thankfully -- S has been busy), but his complete pass-outedness was a bit of a hindrance. Still, I managed to squeeze in another 10 ml of mother's milk before calling the game on account of sleep.
Of course, nothing is without controversy. This was his third feeding today, and yet this was only the first one we were invited to attend. S about lost it again when they told her that "she looked a bit tired," and didn't want to bother her with the one thing she has been aching to do since we got here.
Sometimes I am surprised at the incredulity we face in the staff here. Don't get me wrong; they are all dedicated and talented professionals. I just wish they would assume the same level of dedication from us, the parents.
After a solid ten minutes of that, it was time for me to try and get him to eat some from a bottle (no formula, thankfully -- S has been busy), but his complete pass-outedness was a bit of a hindrance. Still, I managed to squeeze in another 10 ml of mother's milk before calling the game on account of sleep.
Of course, nothing is without controversy. This was his third feeding today, and yet this was only the first one we were invited to attend. S about lost it again when they told her that "she looked a bit tired," and didn't want to bother her with the one thing she has been aching to do since we got here.
Sometimes I am surprised at the incredulity we face in the staff here. Don't get me wrong; they are all dedicated and talented professionals. I just wish they would assume the same level of dedication from us, the parents.
Friday, February 5, 2010
A Rude Awakening
This morning was the latest in a series of upsets. To start, I awoke some time around 5 AM to the sounds of a doctor standing in the dark room and expounding on a number of logical steps that had been taken overnight. I was, I admit, not at my best just then so I do not recall exactly what was said. What I do remember is that it all sounded complicated.
We got up to do the 7:30 AM feeding as normal, except that I stayed behind to get our previously pumped breast milk from the nurse. When I got to the NICU... words alone cannot describe the heartache. S was sobbing fat silent tears and looking at Griffin, who was on a heating table with now seven different tubes and wires connecting his tiny body to a number of monitors, IV bags and whatnot. The first shock was the tube that was inserted directly into his umbilicus. The second followed almost immediately after the first: S looked to me, with tears in her eyes, and told me that we were no longer allowed to feed him.
A long conversation ensued, and the short version is this: Griffin was getting too much saline with his glucose. He was also not passing on this liquid, which implied a problem with his kidneys. They were taking every precaution with him, and so he got a number of alterations to his care:
1) Glucose in a more viscous form, which necessitated the umbilical IV.
2) No food by mouth, since he was overly hydrated.
3) A mild diuretic to help purge the tissues of all this saline.
4) An Isolette. You know what this is - the Japanese Economy Hotel for babies? My son was the boy in the bubble. Insert lame John Travolta joke here.
5) Tests, tests, tests! An ultrasound test for kidney malformation (not likely, but a real possibility, we were informed), one for liver function (checking for Jaundice), one for protein levels (creatinine), one for electrolytes (sodium), and the ever-present glucose test. Most of these involve getting a blood sample. Our visits to the NICU now consist of carefully holding his bundled form on a pillow.
Although things have improved since then, this morning was crap. I wasn't bothered by the tests, nor by the bubble (although it was a rude shock) - it was the feeling that we were aiming at a moving target. All day I have had this odd feeling that the moment I got comfortable with this new routine, the game would change again. Some doctor would raise concern about his strontium levels, or decide it was of paramount importance to reduce his exposure to halitosis.
We got up to do the 7:30 AM feeding as normal, except that I stayed behind to get our previously pumped breast milk from the nurse. When I got to the NICU... words alone cannot describe the heartache. S was sobbing fat silent tears and looking at Griffin, who was on a heating table with now seven different tubes and wires connecting his tiny body to a number of monitors, IV bags and whatnot. The first shock was the tube that was inserted directly into his umbilicus. The second followed almost immediately after the first: S looked to me, with tears in her eyes, and told me that we were no longer allowed to feed him.
A long conversation ensued, and the short version is this: Griffin was getting too much saline with his glucose. He was also not passing on this liquid, which implied a problem with his kidneys. They were taking every precaution with him, and so he got a number of alterations to his care:
1) Glucose in a more viscous form, which necessitated the umbilical IV.
2) No food by mouth, since he was overly hydrated.
3) A mild diuretic to help purge the tissues of all this saline.
4) An Isolette. You know what this is - the Japanese Economy Hotel for babies? My son was the boy in the bubble. Insert lame John Travolta joke here.
5) Tests, tests, tests! An ultrasound test for kidney malformation (not likely, but a real possibility, we were informed), one for liver function (checking for Jaundice), one for protein levels (creatinine), one for electrolytes (sodium), and the ever-present glucose test. Most of these involve getting a blood sample. Our visits to the NICU now consist of carefully holding his bundled form on a pillow.
Although things have improved since then, this morning was crap. I wasn't bothered by the tests, nor by the bubble (although it was a rude shock) - it was the feeling that we were aiming at a moving target. All day I have had this odd feeling that the moment I got comfortable with this new routine, the game would change again. Some doctor would raise concern about his strontium levels, or decide it was of paramount importance to reduce his exposure to halitosis.
The Story so Far (pt 3)
Thursday started with a ray of hope. Wednesday night we visited with him and talked with the NICU pediatrician. The short version goes like this: Griffin needs to maintain his glucose levels to stay warm and avoid brain-damage. They have him on a steady IV drip that releases enough glucose to keep his levels in the safe range. Feeding him requires careful measurement: they balance the amount consumed with the amount of glucose in the feed, and if we can get him to eat 30 ml of formula or breast milk every three hours then he can come off of the IV altogether.
We slept through the 7:15 AM feeding, and the 10:15 AM feeding was off-limits. Apparently, the 10 AM hour is when the entire shift discusses each case in turn, and our presence during this talk would violate federal law. So we went to feed him at 1:15 PM, 4:15 PM, 7:30PM and 10:15 PM.
These four visits went really well. He was getting better at breastfeeding, and he was able to eat 10 ml of formula at a go. This was the progress we had hoped for, and the promise of a Saturday release kept us buoyant for much of the day. We got into a groove with the visits: I tickled his nose with my beard, S tested his branch-grabbing instinct.
The feedings were not without issue; sometimes we were allowed to breastfeed first, and other times not until 10 ml of formula was packed into him. He wasn't always interested in formula, and his appetite would wax and wane. They adjusted his glucose drip rate down one feeding, only to bump it back up the next. Still, we had confidence that we were slowly but surely working our way out of the NICU and back into our arms where he belongs.
How silly of us to think it was going to be that easy.
We slept through the 7:15 AM feeding, and the 10:15 AM feeding was off-limits. Apparently, the 10 AM hour is when the entire shift discusses each case in turn, and our presence during this talk would violate federal law. So we went to feed him at 1:15 PM, 4:15 PM, 7:30PM and 10:15 PM.
These four visits went really well. He was getting better at breastfeeding, and he was able to eat 10 ml of formula at a go. This was the progress we had hoped for, and the promise of a Saturday release kept us buoyant for much of the day. We got into a groove with the visits: I tickled his nose with my beard, S tested his branch-grabbing instinct.
The feedings were not without issue; sometimes we were allowed to breastfeed first, and other times not until 10 ml of formula was packed into him. He wasn't always interested in formula, and his appetite would wax and wane. They adjusted his glucose drip rate down one feeding, only to bump it back up the next. Still, we had confidence that we were slowly but surely working our way out of the NICU and back into our arms where he belongs.
How silly of us to think it was going to be that easy.
The Story so Far (pt 2)
Okay, so the wee bean was taken to the NICU on Wednesday for a glucose IV and a chance to warm up. That's the short version of that story. Here is a slightly longer version:
We were working with the lactation consultant on techniques. I say "we" like I had anything to do besides wander around the room and feel slightly uncomfortable. Immaterial - moving on. Griffin had managed to latch onto Susan and things were progressing apace when S decided she could not wait any longer and went to the lavatory. So, seven minutes of breastfeeding, followed by a short break. During the break, our nurse walked in to check G's glucose levels again. She asked if he had been fed recently, and I informed her that we were in the middle of same. She asked us to stop there and she would return in 15 minutes to get a reading.
She returned after 30 minutes, pricked his foot (by this time, he would start to cry at the act of touching his sock - B.F. Skinner had a lot to say about this kind of thing), and once again his blood-sugar came up low. She whisked him to the nursery right away for bottle-feeding. She stopped his feeding so that she could feed him - you with me here?
That feeding went poorly, but we weren't to know. It was only when S finally got on her feet for a walk down the hall (her first such stroll since the c-section) when we got a glimpse of the NICU specialist nurses attempting to feed the wee bean via bottle. We got to see him spit up all over one of them. We chuckled and went back to our room.
Later that day, we started to wonder if we were ever going to get our son back, so we called the nurse. This was when we were informed that he was being transported to the NICU, that his body temp had dropped precipitously, that he was not able to eat.
Susan lost it. Within minutes we had a lengthy parade of medical professionals coming into our room: nurses, pediatricians, NICU nurses and NICU doctors all in order came in and got what-for from my dear wife, who only seems meek to the casual observer.
Pro Tip: do NOT tell her that "the brain needs glucose to function." I don't know if I could stop her from taking a swing at you.
The medical staff were very nice and rather apologetic, so there's that. They did realize that they should have consulted with us at a higher level than what we got at the time. We also got a full explanation of their reasoning, and it goes without saying that it is a necessary and proper thing they did. I wanted to shout at them for taking our baby away from his feeding to feed him, but they were looking at a whole string of low blood-sugar readings (seven separate measurements across the morning and early afternoon). The scientific method demands measurable inputs and outputs, and his food intake was a big unknown for them.
Bright side: I don't think they will forget to update us ever again.
We were working with the lactation consultant on techniques. I say "we" like I had anything to do besides wander around the room and feel slightly uncomfortable. Immaterial - moving on. Griffin had managed to latch onto Susan and things were progressing apace when S decided she could not wait any longer and went to the lavatory. So, seven minutes of breastfeeding, followed by a short break. During the break, our nurse walked in to check G's glucose levels again. She asked if he had been fed recently, and I informed her that we were in the middle of same. She asked us to stop there and she would return in 15 minutes to get a reading.
She returned after 30 minutes, pricked his foot (by this time, he would start to cry at the act of touching his sock - B.F. Skinner had a lot to say about this kind of thing), and once again his blood-sugar came up low. She whisked him to the nursery right away for bottle-feeding. She stopped his feeding so that she could feed him - you with me here?
That feeding went poorly, but we weren't to know. It was only when S finally got on her feet for a walk down the hall (her first such stroll since the c-section) when we got a glimpse of the NICU specialist nurses attempting to feed the wee bean via bottle. We got to see him spit up all over one of them. We chuckled and went back to our room.
Later that day, we started to wonder if we were ever going to get our son back, so we called the nurse. This was when we were informed that he was being transported to the NICU, that his body temp had dropped precipitously, that he was not able to eat.
Susan lost it. Within minutes we had a lengthy parade of medical professionals coming into our room: nurses, pediatricians, NICU nurses and NICU doctors all in order came in and got what-for from my dear wife, who only seems meek to the casual observer.
Pro Tip: do NOT tell her that "the brain needs glucose to function." I don't know if I could stop her from taking a swing at you.
The medical staff were very nice and rather apologetic, so there's that. They did realize that they should have consulted with us at a higher level than what we got at the time. We also got a full explanation of their reasoning, and it goes without saying that it is a necessary and proper thing they did. I wanted to shout at them for taking our baby away from his feeding to feed him, but they were looking at a whole string of low blood-sugar readings (seven separate measurements across the morning and early afternoon). The scientific method demands measurable inputs and outputs, and his food intake was a big unknown for them.
Bright side: I don't think they will forget to update us ever again.
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