There was no news yesterday - not for any of you following this blog, and not for us, either. The echo had not even been conducted when I was there from 9 am - 12 noon. When Corey was there 9 pm - 12 midnight, it had been conducted, but not read by the doctors.
When a doctor breezed through this morning to grab his chart, I had to literally stop her and ask for the results. (A new third doctor is on this week.) Unlike the other two I had met so far, this doc seemed nonchalant about the echo conducted yesterday...and she seemed genuinely surprised we'd had any anxiety at all over the whole thing.
She said she felt the surgery would not be needed any time soon, if at all. She did confirm for me when I asked that the ductus is smaller than it was at the time of the last echo conducted @ UNC.
This one was more like the roller coaster made you think a possible dip was coming . . . and then you were on the Tea Cup Ride.
Tuesday, October 28, 2008
Saturday, October 25, 2008
Waiting to Worry
Aidan has not weaned off of oxygen and air pressure as much as the doctors would have liked. Therefore, the doctors have scheduled an echo cardiogram on Monday to determine if he needs his "PDA surgically ligated". This is fancy talk for surgically closing the hole in his heart. The doctor spent a lot of time talking with me about both sides of the medical argument surrounding this surgery, but basically:
Should the surgery be determined necessary, it would also mean another transfer, either back to UNC or to another hospital. You might remember me saying on October 11th when Aidan was transferred from UNC to Rex:
"Rex does not have neonatal cardiology surgical capability, so after reading the ultrasound, [UNC neonatal cardiologist] must be pretty sure Aidan's heart will not need surgery!"
Oops.
So, we're anxiously waiting for Monday to see if we should worry.
You know, more so than usual.
- On one hand, proponents of the surgery point to evidence that after the surgery is done, improvement happens more quickly because there is less strain on the heart."Get in, get out, get him better."
- On the other side, research also shows the PDAs close in their own more often than not. "If it is not causing him imminent danger, why submit to the inherent risks of surgery when it will probably resolve on it's own?"
Should the surgery be determined necessary, it would also mean another transfer, either back to UNC or to another hospital. You might remember me saying on October 11th when Aidan was transferred from UNC to Rex:
"Rex does not have neonatal cardiology surgical capability, so after reading the ultrasound, [UNC neonatal cardiologist] must be pretty sure Aidan's heart will not need surgery!"
Oops.
So, we're anxiously waiting for Monday to see if we should worry.
You know, more so than usual.
Tuesday, October 21, 2008
Thursday, October 16, 2008
Did I mention it's like a roller coaster ride?
Okay. So, today I pointed out to the nurse that he's been the same weight for three days. (See Aidan's Medical Log.) She left to ask the doctor about it, and the doctor came in to "point it out to me" not fifteen minutes later. True story.
She follows this 'revelation' up with, "this [lack of weight gain] is not in the column of things that are okay." As a result of this lack of weight gain (seemingly otherwise unnoticed until I arrived), she decided to increase his feeds to 30 mL each. In addition, she discussed the possibility of adding beneprotein to his breastmilk, along with the vitamins and calories that are already being added.
She went on to say his "lung injury is considerable." (Um, excuse me? Beg your pardon?) She mentioned several other diagnoses of Aidan's that we'd also not yet heard like Pulmonary Insufficiency of Prematurity and Respitory Distress Syndrome. Probably in response to my shocked blank stare, she stressed that it is not yet Chronic Lung Disease because that is not diagnosed until the 36 week mark.
I should also mention that this doctor was casually rattling everything off at approximately the speed of light. I can't process regular conversation this fast, and she's rattling off medical jargon at me. However, I saw no point in asking her to slow down to explain things to me. As she talked, I scribbled down notes like a first day medical intern, and only interrrupted her to make sure I had the names hyperlinked above written down correctly. Now that I have Googled all of these terms, you can be assured I will have some follow-up questions for her tomorrow.
Yesterday, when I asked about the increase in oxygen dependence, a different neonatologist reassured me that his lungs "sounded crystal-clear" and that he is "headed in the right direction." Put your hands in the air, everybody! Wheeeeeeeeeeeee!
She follows this 'revelation' up with, "this [lack of weight gain] is not in the column of things that are okay." As a result of this lack of weight gain (seemingly otherwise unnoticed until I arrived), she decided to increase his feeds to 30 mL each. In addition, she discussed the possibility of adding beneprotein to his breastmilk, along with the vitamins and calories that are already being added.
She went on to say his "lung injury is considerable." (Um, excuse me? Beg your pardon?) She mentioned several other diagnoses of Aidan's that we'd also not yet heard like Pulmonary Insufficiency of Prematurity and Respitory Distress Syndrome. Probably in response to my shocked blank stare, she stressed that it is not yet Chronic Lung Disease because that is not diagnosed until the 36 week mark.
I should also mention that this doctor was casually rattling everything off at approximately the speed of light. I can't process regular conversation this fast, and she's rattling off medical jargon at me. However, I saw no point in asking her to slow down to explain things to me. As she talked, I scribbled down notes like a first day medical intern, and only interrrupted her to make sure I had the names hyperlinked above written down correctly. Now that I have Googled all of these terms, you can be assured I will have some follow-up questions for her tomorrow.
Yesterday, when I asked about the increase in oxygen dependence, a different neonatologist reassured me that his lungs "sounded crystal-clear" and that he is "headed in the right direction." Put your hands in the air, everybody! Wheeeeeeeeeeeee!
Wednesday, October 15, 2008
Pssst! Humor!
Aidan has been at Rex for five days now, and Corey and I have been readjusting our routine around the new parameters of our day-to-day existence. I have had some time to reflect and revisit some of those little moments where the whisper of humor went almost unheard in our whirlwind of emotional disquiet.
The Out-of-Touch Nurse
Not 48 hours postpartum and just released from the hospital, I was standing in the UNC NICU numbly taking in the sight of all the tubes, machines and a very, very small Aidan George. I was sniffling and my eyes were red. A nurse came over and asked me, "Are you sick?" in a slightly alarmed, 'then-what-are-you-doing-in-here' tone.
"Uh, no."
"Oh," she says, "Allergies, huh."
"Uh, no."
Wow. Seriously?
The Over-In-Touch Nurse
The next day, a (different) nurse asked me a set of questions. She forced a nonchalant manner, but was too intently listening to my answers to sell the conversation as casual.
"So, are you sleeping okay?"
"Um, not really."
"Eating regularly?"
"Um, not really."
"Are you feeling weepy and overwhelmed a lot?"
"Well, yeah."
"Honey, do you want to talk to someone about postpartum depression?"
"Um, not really."
The first laugh I had after having Aidan
While recounting the conversation of questions above, I pointed out to my friend Nancy that trying to assess postpartum depression in a mother with a baby in a NICU is like assessing a two-year-old with ADHD - there's no way to distinguish the expected reality with 'symptoms' of a condition. She agreed and said: "Erica, you just tell them:
Jealous big brother tries to steer the car
Nathaniel has been really amazing. We have video and memories of moments with him saying the most adorable, sweet, gentle things. However, good old sibling rivalry doesn't seem to take long to settle in, either. While in the car starting off on one of the long 45 minute drives to Chapel Hill, Corey and I announce, "We're coming baby Aidan!" as was our custom in order to give Nathaniel a heads-up of what was to come. He had always repeated it before, but this time there was this long pause as he contemplated our proposition. Then, he brightly suggested, "We're coming Nana!"
Daddy makes lunch
We are aware that even under normal circumstances, a two-year-old wants control and independence. As such, even amongst the chaos, we offer him choices as often as possible. So, one random day Corey and I were scrambling to get things in order to go visit Aidan. I was pumping (again) and Corey was making Nathaniel a sandwich for lunch:
"Nathaniel, do you want your sandwich cut in squares or triangles?"
"No triangles!"
"You want it in squares, then?"
"No kwares!"
"Rectangles?"
"No 'ectangles!"
"Circles?"
"No irr-cals!"
"Trapezoids?"
"No appy-zoids!"
"Polygons?"
"No olly-gones!!!"
"Dodecahedrons?"
Nathaniel's only response to this was a stony silence at the prospect of having to repeat this shape's name in order to say 'no'. Satisfied, my husband turned to me.
"Honey, how many sides are in a dodecahedron?
The Out-of-Touch Nurse
Not 48 hours postpartum and just released from the hospital, I was standing in the UNC NICU numbly taking in the sight of all the tubes, machines and a very, very small Aidan George. I was sniffling and my eyes were red. A nurse came over and asked me, "Are you sick?" in a slightly alarmed, 'then-what-are-you-doing-in-here' tone.
"Uh, no."
"Oh," she says, "Allergies, huh."
"Uh, no."
Wow. Seriously?
The Over-In-Touch Nurse
The next day, a (different) nurse asked me a set of questions. She forced a nonchalant manner, but was too intently listening to my answers to sell the conversation as casual.
"So, are you sleeping okay?"
"Um, not really."
"Eating regularly?"
"Um, not really."
"Are you feeling weepy and overwhelmed a lot?"
"Well, yeah."
"Honey, do you want to talk to someone about postpartum depression?"
"Um, not really."
The first laugh I had after having Aidan
While recounting the conversation of questions above, I pointed out to my friend Nancy that trying to assess postpartum depression in a mother with a baby in a NICU is like assessing a two-year-old with ADHD - there's no way to distinguish the expected reality with 'symptoms' of a condition. She agreed and said: "Erica, you just tell them:
"No, I'm not okay, but I know that I'm not okay...
...and I'm okay with that."
...and I'm okay with that."
Jealous big brother tries to steer the car
Nathaniel has been really amazing. We have video and memories of moments with him saying the most adorable, sweet, gentle things. However, good old sibling rivalry doesn't seem to take long to settle in, either. While in the car starting off on one of the long 45 minute drives to Chapel Hill, Corey and I announce, "We're coming baby Aidan!" as was our custom in order to give Nathaniel a heads-up of what was to come. He had always repeated it before, but this time there was this long pause as he contemplated our proposition. Then, he brightly suggested, "We're coming Nana!"
Daddy makes lunch
We are aware that even under normal circumstances, a two-year-old wants control and independence. As such, even amongst the chaos, we offer him choices as often as possible. So, one random day Corey and I were scrambling to get things in order to go visit Aidan. I was pumping (again) and Corey was making Nathaniel a sandwich for lunch:
"Nathaniel, do you want your sandwich cut in squares or triangles?"
"No triangles!"
"You want it in squares, then?"
"No kwares!"
"Rectangles?"
"No 'ectangles!"
"Circles?"
"No irr-cals!"
"Trapezoids?"
"No appy-zoids!"
"Polygons?"
"No olly-gones!!!"
"Dodecahedrons?"
Nathaniel's only response to this was a stony silence at the prospect of having to repeat this shape's name in order to say 'no'. Satisfied, my husband turned to me.
"Honey, how many sides are in a dodecahedron?
Saturday, October 11, 2008
He's settled in @ Rex.
I got to visit briefly at Rex from about 5:30 pm until they closed for shift change at 6:30 pm. As you can see from the picture, he has graduated up to an isolette. His first nurse at Rex, Shannon, told me the isolette can convert back into a "warmer bed" if he needs it:
I have a close-up shot of his new surroundings below. He seemed very tucked in and cozy. It was dimmer in this room and I did not want to use the flash, so the picture was very dark. I have enhanced it some. He is also now in clothes since he is in the isolette and not the warmer bed, where he'd been exposed and only in a diaper. He was very bundled and snuggly:
The set up at Rex is much smaller and intimate. Aidan is in a room with only one other roommate, rather than in the E pod with at least a dozen other babies. (Even so, Pod E was referred to as a 'small' pod by the UNC nurses. Pods A-D were easily twice as big as E.) As such, it is quieter and feels slower-paced. The number of machines and nurses bustling around is as dramatically reduced as the number of babies in the room, and there is more space around him for kangaroo care and such. Like UNC, only two visitors are allowed in at a time.
I have a close-up shot of his new surroundings below. He seemed very tucked in and cozy. It was dimmer in this room and I did not want to use the flash, so the picture was very dark. I have enhanced it some. He is also now in clothes since he is in the isolette and not the warmer bed, where he'd been exposed and only in a diaper. He was very bundled and snuggly:
The set up at Rex is much smaller and intimate. Aidan is in a room with only one other roommate, rather than in the E pod with at least a dozen other babies. (Even so, Pod E was referred to as a 'small' pod by the UNC nurses. Pods A-D were easily twice as big as E.) As such, it is quieter and feels slower-paced. The number of machines and nurses bustling around is as dramatically reduced as the number of babies in the room, and there is more space around him for kangaroo care and such. Like UNC, only two visitors are allowed in at a time.
He's moved to Rex Hospital!
I got the call from UNC nurse Carol at 12:15 this afternoon! They had packed him up and were loading him into the special care vehicle. The results of his echo cardiogram showed the murmur to be caused by a small PDA (Patent Ductus Arteriosus). More on these terms related to a preemie heart murmur here.
Anyway, this move means two major things:
While Corey and Nathaniel were still fast asleep, I would leave by 8 am visit the UNC Hospital in the morning. I have to pump milk every 3-4 hours, so I'd have to do that before I left. I'd try to make it by the time the doctors did the rounds, but that did not always happen, depending on the notorious I-40 traffic. The highlight was I'd get to do kangaroo care, including holding Aidan during his 11:00 - 11:30 feeding! =) I'd have to pump at the hospital, and make sure I left in time to meet Corey in a Rite Aid parking lot off Corey's I-540 Gym exit in order to take over care of Nathaniel so Corey could get to work by 2 pm.
Corey would work his 2-9 pm shift while Nathaniel and I would head back home to deal with dinner, bath & bed time, etc. Corey would then go after work to visit Aidan from 10 pm to around midnight or so, arriving home close to 1 am. He'd wake me to pump and set an alarm to wake up for Aidan's 4 am "feeding", after which I'd get a few more hours of sleep before waking up to pump & leave for UNC again.
So, the great news is Rex Hospital - where I had Aidan and also Nathaniel in 2006 - is only about 20 minutes away, not 45 minutes away. Parking is free, not $1.25 an hour. On the down side, they are closed for visitation from 6:30 - 7:45 both am & pm everyday, where UNC had been open for visitation 24 hours. The really big bummer is Nathaniel can not visit at all at Rex. =(
I called and spoke with his nurse for today at Rex, and he's arrived safe and sound. They had had to skip his noontime feeding because they were in transit. As soon as Corey is home today (he works 9-4 on Saturdays) and Nathaniel is up from a nap, we'll head over to see him at Rex! We'll take and post pictures of him in his new location soon! =)
Anyway, this move means two major things:
- The heart murmur is not overly concerning the UNC neonatal cardiologist. Rex does not have neonatal cardiology surgical capability, so after reading the ultrasound, s/he must be pretty sure Aidan's heart will not need surgery! =)
- The UNC hospital where he's been his first eighteen days of life is about 45 minutes away (out in Chapel Hill, for those of you not from 'round here). Corey and I were each doing this a hour and a half round trip daily. (No big deal - gas prices are so low nowadays and we have so much free time...)
While Corey and Nathaniel were still fast asleep, I would leave by 8 am visit the UNC Hospital in the morning. I have to pump milk every 3-4 hours, so I'd have to do that before I left. I'd try to make it by the time the doctors did the rounds, but that did not always happen, depending on the notorious I-40 traffic. The highlight was I'd get to do kangaroo care, including holding Aidan during his 11:00 - 11:30 feeding! =) I'd have to pump at the hospital, and make sure I left in time to meet Corey in a Rite Aid parking lot off Corey's I-540 Gym exit in order to take over care of Nathaniel so Corey could get to work by 2 pm.
Corey would work his 2-9 pm shift while Nathaniel and I would head back home to deal with dinner, bath & bed time, etc. Corey would then go after work to visit Aidan from 10 pm to around midnight or so, arriving home close to 1 am. He'd wake me to pump and set an alarm to wake up for Aidan's 4 am "feeding", after which I'd get a few more hours of sleep before waking up to pump & leave for UNC again.
So, the great news is Rex Hospital - where I had Aidan and also Nathaniel in 2006 - is only about 20 minutes away, not 45 minutes away. Parking is free, not $1.25 an hour. On the down side, they are closed for visitation from 6:30 - 7:45 both am & pm everyday, where UNC had been open for visitation 24 hours. The really big bummer is Nathaniel can not visit at all at Rex. =(
I called and spoke with his nurse for today at Rex, and he's arrived safe and sound. They had had to skip his noontime feeding because they were in transit. As soon as Corey is home today (he works 9-4 on Saturdays) and Nathaniel is up from a nap, we'll head over to see him at Rex! We'll take and post pictures of him in his new location soon! =)
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