Yesterday, we were actually on the verge of discharge. Not as a vague hypothetical, but scheduled in a few hours after the completion of the normal testing for the day. Part of that normal testing was an NST (nonstress test) which Lefty has been looking good on for about three weeks and Righty overall for a week. You guessed it, BOTH had late decels (3 or 4) and then they BOTH had a thirty-plus minute episode of tachycardia. One of the decels was interesting because they did it at the same time, but from different baselines, so perhaps they are already working on their synchronized swimming?
This was bad enough to get our discharge yesterday cancelled, but not bad enough to deliver right then (yeah!).
This morning the on-call OB came and actually made a plan clear. Part 1 of the plan is we will stay inpatient. Had we actually been discharged, they were going to have me come into the office Monday through Friday and up to L&D on Saturdays and Sundays, but the theory is it's easier to stay here than to have to get sent back, so might as well stay in. It also facilitates them delivering unscheduled.
That leads us to Part 2. There is a scheduled c-section at 37&1 (July 19) and they would prefer that date, but apparently the tolerance for decels will drop with each passing day and they will play it by ear, but very well may decide to section them ahead of that date based on a strip. She apparently was very close to delivering them yesterday and let them know that she would have if they had been 34 weeks (they were 33&5), so the girls are definitely on notice.
My OB is back on Monday, July 2. I think that's all the dates.
They had a growth scan today which also confirmed that my sensations are correct and instead of breech/breech, they are transverse/transverse. So Lefty is now more bottomy and Righty is now more toppy, but I'm sticking with Lefty and Righty. Lefty continues to be more petite than her sister, weighing in at 2077 grams (4lb, 9oz) while Righty is a hefty 2420 grams (5lb, 5oz). These are obviously ultrasound weights and have a large range of error, but it is safe to draw from these that they are good-sized! 4497 grams total!
While 34 is obviously great and awesome, more is better and I'm starting to get greedy and want more and more gestational time. I was playing with a prematurity risk calculator on perinatology.com and getting from 34 to 37 decreases the risk of respiratory distress syndrome from almost 20% to 3.5%! And the risk of NEC drops from 1.57% to 0% and the sepsis risk from 4.69% to 0%. The risk of grade III and IV IVHs already drops to 0% at 34 weeks, so I really feel comfortable and happy with any gestational age from here forward, but would LOVE them to make the July 19 date.
However, these girls will likely be leaving the hospital in diapers and the long-sleeve hospital white shirts if they do make it that long because the clothes are all organized and sorted in the garage rather than in the house or packed to bring to them or anything ;-).
Last thought is that it is really quite odd that I'm here on some level. I feel great and am really symptomless. If they'd let me, I'm still completely capable of walking, maneuvering and generally am still very mobile, flexible and all of that. I sleep fine, I'm not in pain, I'm not grumpy, I'm not swollen. I've got friends who are more like 20 weeks with singletons who seem much more uncomfortable and are having to waddle and dealing with pain and sleep issues and all that. So, excepting the whole being stuck in the hospital, I'm in great shape! We will see how well I handle going from two to three months of total bedrest to keeping up with four kids with an abdominal incision healing though...
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Tuesday, June 26, 2012
Friday, June 22, 2012
Passive Superstition Be Gone
I think I have not been posting through a mix of passive superstition, by not typing things it is totally logical that I'm not tempting fate (right?), and honestly just not wanting to process some thoughts. Neither of these was a conscious move, just kind of happened. But I got forced to a few thoughts, including realizing that I wasn't writing anything for silly/nonexistent reasons, so here I am.
First thought: at some point in the last week or so, my expectation has changed from this could result in 0, 1 or 2 babies to there will be 2. Yesterday morning, my OB was as usual sitting in the rocking chair beside my bed chatting and writing up my chart and when she finished she asked if I had anything else. And then said that she thought there was something else and that I sometimes get a look where she knows I'm thinking something, but she just doesn't know what it was. I felt oddly stressed, but couldn't identify what it was. In thinking after, I think it really was just that I'd made the transition to expecting 2, and thus exposing myself.
That's my big thought. Figure I should give a status update and summary now since I have been so non-communicative. However, just like with Chiron/Aurelia, I've actually done a good job through Facebook and it's hard to keep straight what I've said where, so figure I'll just go general here.
Two new things were declared by the OBs this week: next baby who pulls a hijink is getting born at that time and bring her sister with her and we are staying through delivery. Why, you ask? Well, Monday when we actually were at the point of considering discharge in the next couple days, Righty aka baby A, started having late decels followed by tachycardia on our normal morning strip. Initially responded with trying positional changes while a nurse got the oxygen setup in place. Then she called the OB and had her look at the strip just to be sure she knew what was going on and the OB told the nurse that we were going to c-section them and to start an IV, get labs drawn and get me moving towards L&D. Then in the thirty minutes all that was going on little miss behaved perfectly and so my OB backtracked and said we would do 24 hours of monitoring. No more incidents occurred after that, so was shipped back to stable antepartum, but it was declared that these two were out of chances.
Background: at 25 weeks, I had a cold and my body started contracting/dilating in response to there is stress on the system, lets do something to simplify. Stayed in-patient for ten days, things calmed down and was discharged to home bedrest at 26&2. Then at 28&5 I was at the perinatologist for normal BPP and Lefty, aka baby B, was having variable decelerations and some moderate bradycardia on her NST. He wasn't worried, but wanted to make sure that it stopped rather than continued and since it was 5 pm, sent me over to L&D for two hours of monitoring. Instead of discharge after two hours, I instead got another 2 rounds of steroid shots and was admitted. She continued having some of these events until the morning of 30&5 when there was some insane fetal motion and I again started having contractions. Had dilated more and so went over to L&D. By middle of the day, I was having beautiful, rhythmic contractions of mountains and values every 2.5 minutes and it looked like we were heading towards birth. Then it just petered out. Stayed in monitoring in L&D another day and a half and then back to stable antepartum. Good news of that event was the huge motion was Lefty moving from transverse to breech and as a result seemed to have gotten her leg or whatever out of the cord loop and we haven't seen variables at all, much less bradycardia from her since. Then on Monday, at 32&5 we had the late decels event with Righty.
So, now I'm back to hanging out in stable antepartum. Looking pretty stable and while I have a couple rounds of regularish contractions a day, nothing significant. Both babies are behaving on their strips and so we continue on. The delivery date barring someone misbehaving ahead of then is July 19 at 37&1. My OB, who you may remember is really amazing, competent and just a good human, just left my room and is heading out on vacation and will be out of town until July 2. Of course, there will be other OBs on call and I know them all, but I am spoiled and really prefer MY OB, so think behaving thoughts through at least July 2. That would also get us to 34&5, which I would count as pretty awesome.
That's my ramble and now some random pictures because captions are fun.
First thought: at some point in the last week or so, my expectation has changed from this could result in 0, 1 or 2 babies to there will be 2. Yesterday morning, my OB was as usual sitting in the rocking chair beside my bed chatting and writing up my chart and when she finished she asked if I had anything else. And then said that she thought there was something else and that I sometimes get a look where she knows I'm thinking something, but she just doesn't know what it was. I felt oddly stressed, but couldn't identify what it was. In thinking after, I think it really was just that I'd made the transition to expecting 2, and thus exposing myself.
That's my big thought. Figure I should give a status update and summary now since I have been so non-communicative. However, just like with Chiron/Aurelia, I've actually done a good job through Facebook and it's hard to keep straight what I've said where, so figure I'll just go general here.
Two new things were declared by the OBs this week: next baby who pulls a hijink is getting born at that time and bring her sister with her and we are staying through delivery. Why, you ask? Well, Monday when we actually were at the point of considering discharge in the next couple days, Righty aka baby A, started having late decels followed by tachycardia on our normal morning strip. Initially responded with trying positional changes while a nurse got the oxygen setup in place. Then she called the OB and had her look at the strip just to be sure she knew what was going on and the OB told the nurse that we were going to c-section them and to start an IV, get labs drawn and get me moving towards L&D. Then in the thirty minutes all that was going on little miss behaved perfectly and so my OB backtracked and said we would do 24 hours of monitoring. No more incidents occurred after that, so was shipped back to stable antepartum, but it was declared that these two were out of chances.
Background: at 25 weeks, I had a cold and my body started contracting/dilating in response to there is stress on the system, lets do something to simplify. Stayed in-patient for ten days, things calmed down and was discharged to home bedrest at 26&2. Then at 28&5 I was at the perinatologist for normal BPP and Lefty, aka baby B, was having variable decelerations and some moderate bradycardia on her NST. He wasn't worried, but wanted to make sure that it stopped rather than continued and since it was 5 pm, sent me over to L&D for two hours of monitoring. Instead of discharge after two hours, I instead got another 2 rounds of steroid shots and was admitted. She continued having some of these events until the morning of 30&5 when there was some insane fetal motion and I again started having contractions. Had dilated more and so went over to L&D. By middle of the day, I was having beautiful, rhythmic contractions of mountains and values every 2.5 minutes and it looked like we were heading towards birth. Then it just petered out. Stayed in monitoring in L&D another day and a half and then back to stable antepartum. Good news of that event was the huge motion was Lefty moving from transverse to breech and as a result seemed to have gotten her leg or whatever out of the cord loop and we haven't seen variables at all, much less bradycardia from her since. Then on Monday, at 32&5 we had the late decels event with Righty.
So, now I'm back to hanging out in stable antepartum. Looking pretty stable and while I have a couple rounds of regularish contractions a day, nothing significant. Both babies are behaving on their strips and so we continue on. The delivery date barring someone misbehaving ahead of then is July 19 at 37&1. My OB, who you may remember is really amazing, competent and just a good human, just left my room and is heading out on vacation and will be out of town until July 2. Of course, there will be other OBs on call and I know them all, but I am spoiled and really prefer MY OB, so think behaving thoughts through at least July 2. That would also get us to 34&5, which I would count as pretty awesome.
That's my ramble and now some random pictures because captions are fun.
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| Chiron playing around with one of the new strollers while hanging out at Trajan's swim lesson. |
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| Trajan is by the rail waiting at swim. |
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| Amusing nurses with hijinks and jocularity make the world better. |
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| So do nurses drawing fun pictures. |
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| And awesome coworkers who bring amusing things as well as folding zombies out of paper! |
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| And grandparents who come into town and amuse boys and generally help. |
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| As well as hold little boys with colds when the pass out. |
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| Friends coming by, talking, bringing food, amusement and even making a five-foot tall kangaroo makes the world a lot better as well. |
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| So do wonderful friends who I've actually never met in person who amuse me every single day on multiple occasions and have sent more surprises, notes and thoughts than I ever would have imagined. |
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| Even being challenged to a massive hamburger eating contest is pretty cool. And as a bonus, you see here the pictures that some amazing friends I work with thought to print and bring up (and some of the zombies!). |
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| This little man loves wandering around the hospital on our 30-minute wheelchair privileges and is amazing us with all he's mastered. |
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| This little man prefers to be silly and luckily there are some great nurses who go along with it! |
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| These three are pretty awesome and photographic evidence that Trajan may come here to play iPad almost as much as to see me. |
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| Happy, loving boys |
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| Everyone |
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| I don't have an innie or an outie now, I have a flattie. Also, tell the kids at home not to pierce their belly button because even if it's only for two days due to some impulsivity and fun with roommates, it will stretch to impressive size as a scar. And my first two skin marks ever appear below on diagonals on each side. |
Tuesday, June 12, 2012
8 lb, 4.5 oz of baby
Assuming accuracy of ultrasound weights (yes, I can hear you laughing from here), the girls now outweigh Trajan's birth weight collectively. I was not surprised by this as I also have a bit of stretch mark for the first time ever. Right now it's just two little red marks, but I bet that's just a start.
Righty, our presenting baby, came in at a petite 1719 grams (3lb, 12.6oz). Lefty is now our bruiser coming in at 2038 grams (4lb, 7.9oz), two kilos! So together they are 3757 grams (8lb, 4.5oz). Righty is at the 37th percentile while Lefty is at the 56th.
The margin of error at this age/size is about 300 grams for each of them, so their weights may not be as far apart as they look. It' a 15.7% size discordance and they apparently don't start to pay closer attention until 18-25%, so golden on that front as well. Today was 31 weeks, 6 days and those weights correspond with 31 weeks, 4 days and 32 weeks, 2 days, so the weight difference is only equivalent to 4 days growth of the fetus that is the perfect 50th percentile.
Both girls aced their BPPs as well which was reassuring as Lefty didn't get a reactive fetal strip in the appropriate amount of time this morning. She eventually did, but not within the time parameters for it to count as reactive.
Tomorrow is 32 weeks, so I think based on almost all measures, we have achieved big baby territory! Also, while their going breech-breech is a bit of a downer as it equals c-section for sure, one nice feature is being able to find each of their heads REALLY helps me to be able to discern what motion belongs to which baby which is reassuring and happy.
As requested, belly pictures demonstrating the collapse down into beer belly:
And yes, my stomach is very oddly veiny!
And a couple of the boys just because I like them:
Righty, our presenting baby, came in at a petite 1719 grams (3lb, 12.6oz). Lefty is now our bruiser coming in at 2038 grams (4lb, 7.9oz), two kilos! So together they are 3757 grams (8lb, 4.5oz). Righty is at the 37th percentile while Lefty is at the 56th.
The margin of error at this age/size is about 300 grams for each of them, so their weights may not be as far apart as they look. It' a 15.7% size discordance and they apparently don't start to pay closer attention until 18-25%, so golden on that front as well. Today was 31 weeks, 6 days and those weights correspond with 31 weeks, 4 days and 32 weeks, 2 days, so the weight difference is only equivalent to 4 days growth of the fetus that is the perfect 50th percentile.
Both girls aced their BPPs as well which was reassuring as Lefty didn't get a reactive fetal strip in the appropriate amount of time this morning. She eventually did, but not within the time parameters for it to count as reactive.
Tomorrow is 32 weeks, so I think based on almost all measures, we have achieved big baby territory! Also, while their going breech-breech is a bit of a downer as it equals c-section for sure, one nice feature is being able to find each of their heads REALLY helps me to be able to discern what motion belongs to which baby which is reassuring and happy.
As requested, belly pictures demonstrating the collapse down into beer belly:
And a couple of the boys just because I like them:
Monday, June 11, 2012
I got nothing...
I didn't mean to be dramatic by not posting, it's really just a question of I've really got nothing to say. And when I do say something, it seems to inappropriately tempt fate and I've developed an unhealthy superstitious attitude.
Still hanging out in patient. Was pretty much positive we were delivering within 24 hours last Monday. Dilated more, regular 2-3 minute contractions for hours and the like, but then it all stopped. OB, nurses, other OB and the like were all also convinced, so no clue what really happened, but I like it.
Good news is that the event that we think precipitated that preterm labor episode was the movement of Lefty from transverse to breech. And in the process, she seems to have fixed her cord issue. Free your leg and your heart will follow... We actually have not seen any of the recurrent variables or bradycardia episodes since that day and that has us at a week now. This is good news!
But with two cervix changing episodes to date and an irritable (the medicos for some reason don't agree with the term bitchy or even whiny) uterus that throws fits at such things as lying flat on back, too much fetal movement and not having a sufficiently empty bladder, they've still got me hanging here even with the improvement in the fetal strips.
We should have a growth ultrasound with their BPP tomorrow and I'll try to remember to be a good person and update with that. Because notoriously accurate ultrasound weights are fascinating, right? Does sarcasm convey in writing?
Other news is the movement on Lefty and then Righty deciding to get in the game and become breech as well (breech-breech for the win) has resulted in belly dropping from it's round ball appearance to looking like a true, sagging beer belly. Kinda fun. They are definitely bigger than I was when Trajan was induced at 38 weeks and this is pretty amazing to me.
Still getting a lot of work done for work here and I think that's crucial to my sanity. Seeing the boys and exercising half-hour wheelchair privileges with them to go on "adventures" is even more crucial to my sanity. An amazing and patient doctor plus some truly wonderful humans as nurses also can not be underappreciated.
So, life is going well. Not ideal, but good and we are blessed to be experiencing it.
Last thought: it's really starting to look like we may end up with four children. Four children living in our house. Four kids, really?!?
Still hanging out in patient. Was pretty much positive we were delivering within 24 hours last Monday. Dilated more, regular 2-3 minute contractions for hours and the like, but then it all stopped. OB, nurses, other OB and the like were all also convinced, so no clue what really happened, but I like it.
Good news is that the event that we think precipitated that preterm labor episode was the movement of Lefty from transverse to breech. And in the process, she seems to have fixed her cord issue. Free your leg and your heart will follow... We actually have not seen any of the recurrent variables or bradycardia episodes since that day and that has us at a week now. This is good news!
But with two cervix changing episodes to date and an irritable (the medicos for some reason don't agree with the term bitchy or even whiny) uterus that throws fits at such things as lying flat on back, too much fetal movement and not having a sufficiently empty bladder, they've still got me hanging here even with the improvement in the fetal strips.
We should have a growth ultrasound with their BPP tomorrow and I'll try to remember to be a good person and update with that. Because notoriously accurate ultrasound weights are fascinating, right? Does sarcasm convey in writing?
Other news is the movement on Lefty and then Righty deciding to get in the game and become breech as well (breech-breech for the win) has resulted in belly dropping from it's round ball appearance to looking like a true, sagging beer belly. Kinda fun. They are definitely bigger than I was when Trajan was induced at 38 weeks and this is pretty amazing to me.
Still getting a lot of work done for work here and I think that's crucial to my sanity. Seeing the boys and exercising half-hour wheelchair privileges with them to go on "adventures" is even more crucial to my sanity. An amazing and patient doctor plus some truly wonderful humans as nurses also can not be underappreciated.
So, life is going well. Not ideal, but good and we are blessed to be experiencing it.
Last thought: it's really starting to look like we may end up with four children. Four children living in our house. Four kids, really?!?
Wednesday, May 23, 2012
Someone tell me to shut my trap
Apparently I did not learn a life lesson from this post. Note that it was written on 12/21 and Chiron was born 12/23.
My putting into writing that she had had no more decels and just some slightly extended variances may have been a bad idea. I'm not really very superstitious by nature, but both L&D and the NICU kinda make me so.
So, can you guess what happened between the last post and now? More variances plus a couple decels. They were V's, not W's, which I'm reassured is very good and she recovered on her own each time and is still achieving accelerations and the like, but NOT what we are looking for. She got down to about 90 from 150 or 160 and then recovered back to 150 or 160 over a couple minute period on one of them and I didn't get the specific numbers on any others.
Her line does look crazy compared to her sister's.
Nothing has changed, just the clock to feel confident that her positioning has resolved itself and she is not at risk has reset. Nothing to be alarmed about. Nothing to overreact to, but seriously? Just STOP doing that, little miss lefty.
I am finding it much harder to actually work while monitoring, so I'm going to celebrate the positive side and declare this an opportunity to nearly guilt-free work on getting caught up on my blog reading!
Thank you all for keeping track of us and sharing your thoughts and jokes and experiences. Really does mean the world.
Oh, and Tanika, the uterus of bitching is totally behaving, so I think we may need to get a nickname for little miss attention magnet...
My putting into writing that she had had no more decels and just some slightly extended variances may have been a bad idea. I'm not really very superstitious by nature, but both L&D and the NICU kinda make me so.
So, can you guess what happened between the last post and now? More variances plus a couple decels. They were V's, not W's, which I'm reassured is very good and she recovered on her own each time and is still achieving accelerations and the like, but NOT what we are looking for. She got down to about 90 from 150 or 160 and then recovered back to 150 or 160 over a couple minute period on one of them and I didn't get the specific numbers on any others.
Her line does look crazy compared to her sister's.
Nothing has changed, just the clock to feel confident that her positioning has resolved itself and she is not at risk has reset. Nothing to be alarmed about. Nothing to overreact to, but seriously? Just STOP doing that, little miss lefty.
I am finding it much harder to actually work while monitoring, so I'm going to celebrate the positive side and declare this an opportunity to nearly guilt-free work on getting caught up on my blog reading!
Thank you all for keeping track of us and sharing your thoughts and jokes and experiences. Really does mean the world.
Oh, and Tanika, the uterus of bitching is totally behaving, so I think we may need to get a nickname for little miss attention magnet...
In which I ruminate...
I just turned off the alarm for the maternal heartbeat on my monitor. It's limits are set at 50 and 120 and I go up into the 120s pretty frequently, typically this is when talking to someone, and so it was a bit annoying. It's probably a bad sign that I'm more familiar with the machines around here than some of the nurses. I thought about changing the upper limit, but figured just turning it off would make for a simpler return to standard state, though I believe it does reset anytime it is unplugged as well.
Why I think this fact is worthy of sharing with you, I don't really know, but eh, I never claimed to make sense! And perhaps an even better question is why I think I need to share a picture of the monitor, but I do:
And in the style of live blogging, the whole story changes! The pulse ox cord apparently had some issues. I do like that none of us yesterday or last night thought to actually look at the clock and take my puse, we just accepted the 120s to 150s. My nurse today, who is a favorite and definitely one of the most competent, looked at me and declared that my pulse was not that high, took it by hand and changed out the part.
See, isn't my life fascinating?
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I have decided that the L&D floor is a time distortion field. Came in for three hours, stayed for 10 days. Right now, I'm still here from my two hours of monitoring Monday night. There had been some talk about letting me go this morning, but while there haven't been any deceleration events (which are apparently measured in minutes), there were more variables and with greater drops than the current on-call OB (who is the doctor I had for four weeks while mine was on maternity leave last time) is comfortable with. She sounded like she wasn't concerned per se, but isn't feeling sufficiently comfortable with Lefty's strips yet. It's now a different on-call doctor, my OB doesn't work Tuesday or Wednesday as she has three small children of her own, but today's doctor said that the next one may discharge me after 6am tomorrow
__________________________________________________
I know I'd mentioned that I found the changes in the NICU in the last 17 months kind of fascinating when the neonatologist came down to talk, but I've also discovered another interesting change in the obstetrics side of things. Last time, they didn't repeat steroids. In the last few months, they've aparently had their thinking come around to be more like a decade ago and they do repeat if it's been around four weeks or so and they think there's a reasonable chance of delivery in the next week or so (this time they were thinking possible c-section for distress instead of PTL. read as NOT MY FAULT for once). So, I had two more doses of Betamethasone Sodium Phosphate with Betamethasone Acetate Monday night and last night. It's possible they will do one more round if I were to go into labor or we were removing the babies for distreen reasons between about 32 and 34 weeks.
By the way, random note, but these shots are much more pleasant in the bum than in the thigh. Four of my six doses ever have been thigh and I highly recommend taking this route.
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I am on continuous monitoring until we are assured about Lefty's strips and I'm oddly proud of my ability to come and manage. Many people have a lot of trouble because you can't really get much continuous sleep as anytime a baby comes off the monitor, the nurses have to come in and put them back on. I am apparently very good at noticing them come in, confirming that they don't need me to reposition and then go back to sleep while they are moving straps and monitors and all of that. Having a real bed instead of the transformer delivery bed also makes a huge difference. When they were talking about running continuous monitoring, I in my own mind thought that I could probably only make it about 100 hours before I started to lose it, but I really don't think this is the case. I think I can stay on as long as necessary without too many issues.
Biggest problem is needing to keep the pulse ox on 24 hours a day as it makes it much harder to work on things for work or even play around on the computer/phone. However, one of the nurses said I could move it to my thumb and this makes the typing MUCH easier as I just use my right thumb exclusively fore the space bar and all is good.
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In my last thought, girls are 29 weeks now. Officially non-micros no matter what happens now! Still voting for them to stay put, but we are really coming along in terms of intraventricular (IVH) and NEC risks now. AND, they are big enough to serve as a tray when I have to eat lying down to keep them on the monitor:
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So, I think the summary version is that we are still here in the hospital, but all three of us seem to be doing pretty well. And no reason at this time to expect anything drastic to change.
Oh, and their last possible date is set, July 19. And since they did finally change from shoulder presentation presenting/transverse upper, to breech/transverse, looks like definitely going to be the c-section route.
Why I think this fact is worthy of sharing with you, I don't really know, but eh, I never claimed to make sense! And perhaps an even better question is why I think I need to share a picture of the monitor, but I do:
See, isn't my life fascinating?
__________________________________________________
I have decided that the L&D floor is a time distortion field. Came in for three hours, stayed for 10 days. Right now, I'm still here from my two hours of monitoring Monday night. There had been some talk about letting me go this morning, but while there haven't been any deceleration events (which are apparently measured in minutes), there were more variables and with greater drops than the current on-call OB (who is the doctor I had for four weeks while mine was on maternity leave last time) is comfortable with. She sounded like she wasn't concerned per se, but isn't feeling sufficiently comfortable with Lefty's strips yet. It's now a different on-call doctor, my OB doesn't work Tuesday or Wednesday as she has three small children of her own, but today's doctor said that the next one may discharge me after 6am tomorrow
__________________________________________________
I know I'd mentioned that I found the changes in the NICU in the last 17 months kind of fascinating when the neonatologist came down to talk, but I've also discovered another interesting change in the obstetrics side of things. Last time, they didn't repeat steroids. In the last few months, they've aparently had their thinking come around to be more like a decade ago and they do repeat if it's been around four weeks or so and they think there's a reasonable chance of delivery in the next week or so (this time they were thinking possible c-section for distress instead of PTL. read as NOT MY FAULT for once). So, I had two more doses of Betamethasone Sodium Phosphate with Betamethasone Acetate Monday night and last night. It's possible they will do one more round if I were to go into labor or we were removing the babies for distreen reasons between about 32 and 34 weeks.
__________________________________________________
I am on continuous monitoring until we are assured about Lefty's strips and I'm oddly proud of my ability to come and manage. Many people have a lot of trouble because you can't really get much continuous sleep as anytime a baby comes off the monitor, the nurses have to come in and put them back on. I am apparently very good at noticing them come in, confirming that they don't need me to reposition and then go back to sleep while they are moving straps and monitors and all of that. Having a real bed instead of the transformer delivery bed also makes a huge difference. When they were talking about running continuous monitoring, I in my own mind thought that I could probably only make it about 100 hours before I started to lose it, but I really don't think this is the case. I think I can stay on as long as necessary without too many issues.
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| Cool rag doll look! |
__________________________________________________
In my last thought, girls are 29 weeks now. Officially non-micros no matter what happens now! Still voting for them to stay put, but we are really coming along in terms of intraventricular (IVH) and NEC risks now. AND, they are big enough to serve as a tray when I have to eat lying down to keep them on the monitor:
So, I think the summary version is that we are still here in the hospital, but all three of us seem to be doing pretty well. And no reason at this time to expect anything drastic to change.
Oh, and their last possible date is set, July 19. And since they did finally change from shoulder presentation presenting/transverse upper, to breech/transverse, looks like definitely going to be the c-section route.
Tuesday, May 15, 2012
Overachieving Fetuses
I'm not sure my brain is qualified to keep track of what I've updated here versus Facebook versus what I've told people. But it does look like we are due for an update here.
With the exception of one 12-hour stint in L&D Sunday night/Monday morning, I've been successfully serving my bedrest at home. That was the product of a flareup of the uterus of bitching. I started contracting Sunday afternoon every 6-7 minutes which increased to every 5-6 minutes after a couple hours. They were only about 40-45 seconds in duration, so it seemed very unlikely that they were causing cervical change, but since we are still pretty early gestationally and they were regular, they had me come in to get checked and run additional IV fluids on top of my water chugging.
Thought 1 from that 12-hour visit: I was dubbed level-headed and rational for the fact that I took myself. My logic was that I was pretty sure that I was not having cervix changing contractions, it was bed time and it's much easier to deal with one of your parents leaving at bed time than both and barring an immediate emergency c-section, even in the worst case scenario we should have at least 2.5 hours of warning, so Paul could get up to the hospital. The nurse said that most moms are too flipped out to think about what will be best for their existing children, so apparently I'm calm as a cucumber.
Thought 2 from that 12-hour visit: if you let them give you 5 of Ambien, you can actually get some sleep on the L&D side!
Thought 3 from that 12-hour visit: I think I've come to an understanding of my uterus of bitching. It basically responds to anything being off or stressful on my body as a system by contracting. The actual cervix changing ones from a couple weeks ago I really think were just because of the cold I had. It does seem like a rational response from the body: body under stress, want to reduce stress, evict occupants. The destabilizing factor this time is a bit more embarrassing. I think I had a little constipation going on and that was enough to make my uterus declare that this wasn't what it signed up for and it was going to make things simpler! So, I think the grand conclusion is that I just need to keep things easy on my body and the uterus of bitching will keep its trap shut aka not contracting.
Got discharged at 5:30 am, so was able to hit my normal Monday morning perinatology appointment. The preterm nurse was out of town, so I didn't have to see her and went straight to the perinatologist which was very nice! This was our first week of doing biophysical profiles. The peri was willing to accept my statement that both achieved 15 by 15 accels during monitoring the night before, so we skipped the NST and just did the ultrasound part of it. Both got 8 out of 8, but it took quite a while to get Lefty to show her breathing practice.
My favorite ultrasound picture of this appointment was Righty's hand and Lefty's feet together:
Also got a shot of someone's tongue:
And someone yawning:
Because of the time waiting to get Lefty to show off her breathing, we also get profiles and face-on views of both babies. And confirmed they are both still girls!
Also confirmed that I don't have the gestational diabetes! But my vitamin D and calcium levels are low despite the supplementation, so we are stepping them up even more by tripling my vitamin D. No changes are necessary to my calcium amounts because the theory is that getting the vitamin D levels up will increase my uptake of what I am taking. And I need to take a belly shot as requested, but here's one from last weekend for now:
And this picture of Chiron sitting on Trajan amuses me and so I am passing it on:
Oh yeah, why did I call them overachieving fetuses? Well, biophysical profiles don't normally start until 32 weeks and they both got perfect scores at this 28 week appointment and also achieved accelerations of 15 by 15 (meaning 15 beats for 15 seconds) which also isn't normally looked for until 32 weeks. So, they are overachieving fetuses. Good girls!
And in one last celebration, hitting 28 weeks will mean that they while they may still end up being preemies, they will not be micropreemies! And even if they were born in the next few days (not the plan), they should be able to skip the Giraffe incubator phase in the NICU. So again, go girls!
With the exception of one 12-hour stint in L&D Sunday night/Monday morning, I've been successfully serving my bedrest at home. That was the product of a flareup of the uterus of bitching. I started contracting Sunday afternoon every 6-7 minutes which increased to every 5-6 minutes after a couple hours. They were only about 40-45 seconds in duration, so it seemed very unlikely that they were causing cervical change, but since we are still pretty early gestationally and they were regular, they had me come in to get checked and run additional IV fluids on top of my water chugging.
Thought 1 from that 12-hour visit: I was dubbed level-headed and rational for the fact that I took myself. My logic was that I was pretty sure that I was not having cervix changing contractions, it was bed time and it's much easier to deal with one of your parents leaving at bed time than both and barring an immediate emergency c-section, even in the worst case scenario we should have at least 2.5 hours of warning, so Paul could get up to the hospital. The nurse said that most moms are too flipped out to think about what will be best for their existing children, so apparently I'm calm as a cucumber.
Thought 2 from that 12-hour visit: if you let them give you 5 of Ambien, you can actually get some sleep on the L&D side!
Thought 3 from that 12-hour visit: I think I've come to an understanding of my uterus of bitching. It basically responds to anything being off or stressful on my body as a system by contracting. The actual cervix changing ones from a couple weeks ago I really think were just because of the cold I had. It does seem like a rational response from the body: body under stress, want to reduce stress, evict occupants. The destabilizing factor this time is a bit more embarrassing. I think I had a little constipation going on and that was enough to make my uterus declare that this wasn't what it signed up for and it was going to make things simpler! So, I think the grand conclusion is that I just need to keep things easy on my body and the uterus of bitching will keep its trap shut aka not contracting.
Got discharged at 5:30 am, so was able to hit my normal Monday morning perinatology appointment. The preterm nurse was out of town, so I didn't have to see her and went straight to the perinatologist which was very nice! This was our first week of doing biophysical profiles. The peri was willing to accept my statement that both achieved 15 by 15 accels during monitoring the night before, so we skipped the NST and just did the ultrasound part of it. Both got 8 out of 8, but it took quite a while to get Lefty to show her breathing practice.
My favorite ultrasound picture of this appointment was Righty's hand and Lefty's feet together:
Also got a shot of someone's tongue:
Because of the time waiting to get Lefty to show off her breathing, we also get profiles and face-on views of both babies. And confirmed they are both still girls!
Also confirmed that I don't have the gestational diabetes! But my vitamin D and calcium levels are low despite the supplementation, so we are stepping them up even more by tripling my vitamin D. No changes are necessary to my calcium amounts because the theory is that getting the vitamin D levels up will increase my uptake of what I am taking. And I need to take a belly shot as requested, but here's one from last weekend for now:
And this picture of Chiron sitting on Trajan amuses me and so I am passing it on:
Oh yeah, why did I call them overachieving fetuses? Well, biophysical profiles don't normally start until 32 weeks and they both got perfect scores at this 28 week appointment and also achieved accelerations of 15 by 15 (meaning 15 beats for 15 seconds) which also isn't normally looked for until 32 weeks. So, they are overachieving fetuses. Good girls!
And in one last celebration, hitting 28 weeks will mean that they while they may still end up being preemies, they will not be micropreemies! And even if they were born in the next few days (not the plan), they should be able to skip the Giraffe incubator phase in the NICU. So again, go girls!
Thursday, May 3, 2012
24 hours
If I can be good for 24 hours, discharge shall be mine, wahahahaha. By good, I mean that I have to stop bleeding and have no new bleeding, contract minimally on the monitor and I guess feel like I'm good and stable? We are theorizing that the bleeding was only due to a cervical ultrasound yesterday and so we went ahead and did a cervical exam today so I can have a calm cervix and get discharged.
I'm supposed to be good because my OB is leaving town and won't be back until Monday night and we established that I have a history of misbehaving when she is out (read maternity leave for her in version 2010). However, I argued that one event doesn't make a history! And so I can define a new trend.
I really think I am comfortable with the discharge. I don't feel like I'm in preterm labor. I feel like I have a pissy uterus that likes to express its displeasure with the world when anything doesn't quite go its way. But I think it's bark is likely much worse than it's bite. So maybe it's not a uterus of doom? Maybe it's just a uterus of bitching?
I'm supposed to be very limited in what I do at home. No lifting the boys in any time or condition. No stairs just for giggles. No housework. The oddest explicitly stated limited that she gave me was "no shopping". I'm taking this as meaning physically shopping, so don't worry dear friend Amazon! I can shower, bathe, go to the bathroom and go to doctor's appointments though and continue working from home similar to how I do in the hospital (and since the house is a mile from the office, this is MUCH easier if I need files or anything to be brought to me).
I think I forgot to mention here that in celebration of finishing mag I bought a stroller the other day! We have settled on a two-stroller solution to our stroller logistics and I purchased stroller number one. This is a Baby Jogger City Select with the second seat. I was feeling enthusiastic enough that I ordered the glider board thing as well. This stroller will take both of the Chicco Keyfit 30s, but I haven't ordered the adaptor bars yet. My theory for ordering this stroller now is multifaceted. One, it allows us to sell the Bugaboo and it's accoutrements on Craigslist while still allowing Poppins and Chiron to get out. Two, the weight limit on this stroller actually still includes Trajan, so he who has never really used a stroller much can get to play with it this summer and get that out of his system some before it gets into real use. Three, the 2012s are out and have been out for a while and the 2011s haven't dropped in price and since there were so few changes to the 2012 model, they probably won't anyway, so it made sense to be the stroller to buy.
If you're curious, the second part of our stroller logistics solution that we have settled on is a Valco Trimode Twin with a Joey Seat for Chiron. The BJCS will be more for Paul and I (who can sling or Ergo a third if necessary) and in the car while the Valco is mainly for leaving at the house and for Poppins to utilize. The model years on the Valco don't seem to be updated and I want to get more on top of it's product line development and history before I buy one. Also, the colors are giving me pause. I think we'd probably do best with just the Raven, but it doesn't seem to exist, so maybe the Arctic?
Have we noticed the leaps of faith I've taken? We are employing an entire person, I bought a stroller and we have girl clothing in our garage up to 3T. We also now have three crib mattresses and are moving towards figuring out bunk beds for Trajan so we can turn his full-size bed back into a crib.
And in other news, my subtle pity party has ended as scheduled this morning and I'm back on board conquering the world and generally being competent and in charge. It was a subtle pity party, but it still feels good to be over.
And for some random pictures because I think they are fun:
Chiron on the way to storytime with nanny yesterday in a picture she texted me:
I'm supposed to be good because my OB is leaving town and won't be back until Monday night and we established that I have a history of misbehaving when she is out (read maternity leave for her in version 2010). However, I argued that one event doesn't make a history! And so I can define a new trend.
I really think I am comfortable with the discharge. I don't feel like I'm in preterm labor. I feel like I have a pissy uterus that likes to express its displeasure with the world when anything doesn't quite go its way. But I think it's bark is likely much worse than it's bite. So maybe it's not a uterus of doom? Maybe it's just a uterus of bitching?
I'm supposed to be very limited in what I do at home. No lifting the boys in any time or condition. No stairs just for giggles. No housework. The oddest explicitly stated limited that she gave me was "no shopping". I'm taking this as meaning physically shopping, so don't worry dear friend Amazon! I can shower, bathe, go to the bathroom and go to doctor's appointments though and continue working from home similar to how I do in the hospital (and since the house is a mile from the office, this is MUCH easier if I need files or anything to be brought to me).
I think I forgot to mention here that in celebration of finishing mag I bought a stroller the other day! We have settled on a two-stroller solution to our stroller logistics and I purchased stroller number one. This is a Baby Jogger City Select with the second seat. I was feeling enthusiastic enough that I ordered the glider board thing as well. This stroller will take both of the Chicco Keyfit 30s, but I haven't ordered the adaptor bars yet. My theory for ordering this stroller now is multifaceted. One, it allows us to sell the Bugaboo and it's accoutrements on Craigslist while still allowing Poppins and Chiron to get out. Two, the weight limit on this stroller actually still includes Trajan, so he who has never really used a stroller much can get to play with it this summer and get that out of his system some before it gets into real use. Three, the 2012s are out and have been out for a while and the 2011s haven't dropped in price and since there were so few changes to the 2012 model, they probably won't anyway, so it made sense to be the stroller to buy.
If you're curious, the second part of our stroller logistics solution that we have settled on is a Valco Trimode Twin with a Joey Seat for Chiron. The BJCS will be more for Paul and I (who can sling or Ergo a third if necessary) and in the car while the Valco is mainly for leaving at the house and for Poppins to utilize. The model years on the Valco don't seem to be updated and I want to get more on top of it's product line development and history before I buy one. Also, the colors are giving me pause. I think we'd probably do best with just the Raven, but it doesn't seem to exist, so maybe the Arctic?
Have we noticed the leaps of faith I've taken? We are employing an entire person, I bought a stroller and we have girl clothing in our garage up to 3T. We also now have three crib mattresses and are moving towards figuring out bunk beds for Trajan so we can turn his full-size bed back into a crib.
And in other news, my subtle pity party has ended as scheduled this morning and I'm back on board conquering the world and generally being competent and in charge. It was a subtle pity party, but it still feels good to be over.
And for some random pictures because I think they are fun:
Chiron on the way to storytime with nanny yesterday in a picture she texted me:
The awesome alligator that one of my friend's fiance's crocheted and she brought to me. He does amazing work!
My bed stuck up high by the exuberant Trajan. He really does enjoy the hospital bed.
And my view, because well, ain't it awesome?
So, the conclusion is that my uterus and my cervix are both whiners and like to vent their agitation frequently, but they keep doing what they are supposed to do despite being big pansies. Keep it up guys.
Monday, April 30, 2012
No news news
No news is the best kind of news, right? Still hanging out at the Seton Spa and Resort, but am now ensconced in stable antepartum care. I saw my OB this morning and the plan is to evaluate Thursday. I was supposed to have my weekly growth/modified BPP scan today, but the perinatologist shifted it to tomorrow. If that is good, plus I look good on a cervical exam which my OB does on Thursday and I can commit that I can adhere to real bedrest at home, then I will be discharged Thursday. If any of these three conditions are not true, then I stay here.
Right now I'm trying to keep an open mind to either outcome. Being honest, I'd rather be at home. I really think between having Paul and Poppins, I should be able to be a good bedrester (and my mom is here for right now, but she has responsibilities out of town, so trying to plan without relying on her) and this would let me see the boys. And bedrest is much better with dogs than without!
There are nice features of hospital bedrest as well though. In particular, visitors! I think people are more comfortable dropping by the hospital than a house, so I get to see more folks which definitely helps the mood.
I luckily am able to work full-time from either the hospital or the house which I think is crucial to my good spirits. The house is a mile from the office while the hospital is 15 minutes or so, so the house would be a little more convenient to the poor soul whose job includes running me files, but she is a very good sport, so I'm sure she's happy to do either way. I am not having Paul bring my hospital printer up here to get setup in advance of Thursday. If they keep me Thursday, then I'll have him set it up.
It's odd being back in antepartum because I know the nurses and staff so well, but it is a nice familiarity and there is real sanity benefit in getting an NST every day and fetal heart tones every night.
It should be obvious from these last few paragraphs that I have no clear preference between being kept for the duration and being discharged. I think the real truth is I'm on board with whatever the OB and the perinatologist believe is best for the girls. If I could keep them out of the NICU for one week by being in a bed with my head slanted towards for the floor for a month, that would be more than a fair trade. Seriously, it is so much easier to be the patient than to watch your child as the tiny patient. Any hour we can decrease their stay in the NICU by is honestly an hour that's not just better for them, but for our entire family. So, stay put girls.
The boys basically come here to eat and read books. And Trajan likes to adjust all the bed buttons. And there's unlimited pudding. What's not to like?
Right now I'm trying to keep an open mind to either outcome. Being honest, I'd rather be at home. I really think between having Paul and Poppins, I should be able to be a good bedrester (and my mom is here for right now, but she has responsibilities out of town, so trying to plan without relying on her) and this would let me see the boys. And bedrest is much better with dogs than without!
There are nice features of hospital bedrest as well though. In particular, visitors! I think people are more comfortable dropping by the hospital than a house, so I get to see more folks which definitely helps the mood.
I luckily am able to work full-time from either the hospital or the house which I think is crucial to my good spirits. The house is a mile from the office while the hospital is 15 minutes or so, so the house would be a little more convenient to the poor soul whose job includes running me files, but she is a very good sport, so I'm sure she's happy to do either way. I am not having Paul bring my hospital printer up here to get setup in advance of Thursday. If they keep me Thursday, then I'll have him set it up.
It's odd being back in antepartum because I know the nurses and staff so well, but it is a nice familiarity and there is real sanity benefit in getting an NST every day and fetal heart tones every night.
It should be obvious from these last few paragraphs that I have no clear preference between being kept for the duration and being discharged. I think the real truth is I'm on board with whatever the OB and the perinatologist believe is best for the girls. If I could keep them out of the NICU for one week by being in a bed with my head slanted towards for the floor for a month, that would be more than a fair trade. Seriously, it is so much easier to be the patient than to watch your child as the tiny patient. Any hour we can decrease their stay in the NICU by is honestly an hour that's not just better for them, but for our entire family. So, stay put girls.
Saturday, April 28, 2012
All is good...
I really thought I posted something two days ago, but it turns out that perhaps I'm not the best phone blogger while on mag and I didn't put anything. So, the short version of it is that we are all doing well. Chiron has less fluid draining from his ears, Trajan apparently is the toughest, most resilient fella on the planet and was completely unfazed by the anaesthesia, the surgery, the pain, the hospital or anything. And the girls are both kicking butt and I'm getting the word "stable" applied to me.
Longer version:
Bless the commenter who pointed out that I should get a book about getting the tonsils/adenoids out and talk about it with Trajan. I did and the book said to think about your kid and the degree to tell him or her and I made the decision that he was the type who wanted to know everything that we knew included how he was be gassed, the kinds of tools that they would use to cut, that it would hurt, etc. He took one of his stuffed animals with him to the surgery, baby jaguar, and this friend also got to go back with him to surgery (since he needed his tonsils/adenoids out) and I'm told that Trajan did a fantastic job talking baby jaguar through what was going to happen.
This is his surly, presurgery pictury and I don't actually know the story on what the face is for. He LOVES the hospital socks. That's baby jaguar beside him. They happily went back through the doors to surgery by themselves, so we were two for two this week for our kids happily heading back with nurses they didn't know for surger :-).
This is his first post-surgery shot. He came up from the anaesthesia like a trooper (unlike little brother who fought the world like a tiger and was completely disoriented). He was in love with these rainbow popsicles. This is immediately after surgery, so he's still pretty high on the meds, but looking great and already explaining that it just feels like he's got a booboo in his throat and that getting your tonsils out is a good thing.
Pretty much immediately after that my mom (who went with Paul for part of the day, Paul stayed the whole day and night) asked Trajan if he wanted some quiet time. Trajan agreed and even put the nap mask on and was back asleep in less than a minute. When he woke up from this nap, he apparently seemed pretty much completely recovered. So, apparently my apprehension was all for nothing and I should have stuck with the half of me that knows my kid and is frankly time and again amazed by him. Trajan really is a superhero to me.
Just another example of him explaining things to baby jaguar. The IV is how you let your blood drink, pretty cool, huh, baby jaguar? Kid thought that getting to sleep at the surgery center was an awesome treat/trip reward. And then was discharged the next morning with no events!
Little brother has so far been to see me both days and I dub him my cutest visitor to date:
They both came yesterday and I'm going to need to get things set up with books and toys and all again to make this place a fun visiting spot. I'm highly confident I know what to do to make Trajan have a positive experience with my being here, but I'm much less confident with Chiron. Any tips to make a very attachd toddler understand visiting his mom in bed would be appreciated. So far, he's been very happy to just lay in bed with me, snuggle, read, talk and be. But I also think that he has a little stomach bug that may be slowing him down.
Trajan is still wearing his surgery socks and his arm band and really enjoyed realizing that I had a hospital band too!
I think my dad probably has some pictures of the boys visiting yesterday when they came with Poppins and my parents, but I was much more focused on enjoying them and the like, so all I've got is that shot that shows he has a band too :-).
I'll have an update on me and the girls sometime in the next few days, but I think I may wait until Tuesday when it sounds like we are going to have more of a conversation about "the plan". I was just moved from L&D to stable antepartum and am set up there. This gets me a real bed instead of a delivery bed, the right to short showers and the ability to wear clothes instead of a gown. It also shifts the girls to getting monitored once a day with an NST rather than the continuous or hourly monitoring that we've been doing.
I did have a conversation with a neonatologist the other day and it went pretty well. There actually have been some substantial improvements in just the 16 months since Chiron was born. Still hoping to go much longer, but it's a much rosier picture than the conversation I had at 24 weeks with a neonatologist last time.
Anything you want to know about the uterus of doom? About the girls? They've been doing great on monitoring, actually achieving 10 by 10 accels pretty often which is fantastic for 25 weekers and are doing everything we could ask of them.
That's my ramble, what should I update?
Longer version:
Bless the commenter who pointed out that I should get a book about getting the tonsils/adenoids out and talk about it with Trajan. I did and the book said to think about your kid and the degree to tell him or her and I made the decision that he was the type who wanted to know everything that we knew included how he was be gassed, the kinds of tools that they would use to cut, that it would hurt, etc. He took one of his stuffed animals with him to the surgery, baby jaguar, and this friend also got to go back with him to surgery (since he needed his tonsils/adenoids out) and I'm told that Trajan did a fantastic job talking baby jaguar through what was going to happen.
Little brother has so far been to see me both days and I dub him my cutest visitor to date:
They both came yesterday and I'm going to need to get things set up with books and toys and all again to make this place a fun visiting spot. I'm highly confident I know what to do to make Trajan have a positive experience with my being here, but I'm much less confident with Chiron. Any tips to make a very attachd toddler understand visiting his mom in bed would be appreciated. So far, he's been very happy to just lay in bed with me, snuggle, read, talk and be. But I also think that he has a little stomach bug that may be slowing him down.
Trajan is still wearing his surgery socks and his arm band and really enjoyed realizing that I had a hospital band too!
I'll have an update on me and the girls sometime in the next few days, but I think I may wait until Tuesday when it sounds like we are going to have more of a conversation about "the plan". I was just moved from L&D to stable antepartum and am set up there. This gets me a real bed instead of a delivery bed, the right to short showers and the ability to wear clothes instead of a gown. It also shifts the girls to getting monitored once a day with an NST rather than the continuous or hourly monitoring that we've been doing.
I did have a conversation with a neonatologist the other day and it went pretty well. There actually have been some substantial improvements in just the 16 months since Chiron was born. Still hoping to go much longer, but it's a much rosier picture than the conversation I had at 24 weeks with a neonatologist last time.
That's my ramble, what should I update?
Monday, April 2, 2012
Damn, fun with tonsils and adenoids
So, I was figuring I'd write a quick little post of the boys' getting haircuts yesterday, but instead it's surgery. Yes, for my kid who has had two fevers in his life and one stomach bug, because apparently life is too boring :-).
I'd made him an appointment with the ENT because his dentist had recommended that we have him evaluated by an ENT due to his mouth breathing, growing overbite and large tonsils. I really kind of expected the ENT to possibly scoff at us a little for being there and at most recommend a wait and see approach. Nope, not at all. He was in the room maybe three minutes and had asked Trajan some questions, looked in his throat and observed him and then asked me if I wanted the bad news then or in a few minutes. I voted for then and he said, "he's going to need both the adenoids and the tonsils out."
Apparently he pretty clearly has some obstruction due to his lymphatic tissue. The ENT said that it's not at all the size of the tonsils that makes him go to removal, but more the mouth breathing that is pretty much obligate. Apparently some notes in his chart from the allergist also supported the idea. He said that if we wanted, we could first schedule him for an overnight sleep study to document that he is having breathing events, but that he could pretty much guarantee that with Trajan a study would find episodes and that sleep studies are not a fun walk in the park either.
I'd already checked in with our primary and she sounded like removing them could be reasonable and did support that the ENT is a good one, so I figure let's do it.
He sent the nurse in to schedule it and her first comment was, "looking at you, I'm thinking we need to schedule this sooner or later. Do you have a couple weeks left?" Seriously woman, I'm 22 weeks. I realize I'm a bit large for 22 weeks, but I sure as heck don't look like 37 or anything! I for some reason have harsher standards for medical professionals. However, I did agree that sooner is better than later. Both because our world will get more crazy and because the younger you are, the easier this procedure is supposed to be. But he's ringbearing in a wedding on April 21, so we scheduled for April 26 as they apparently only do them on Thursdays.
It's a one-night stay and then lots of fun with fluids and soft things! They said that some kids are back out playing by the time they are discharged, but some take as long as 7-10 days. He has the week of the surgery off, so will hopefully just miss part of the next week of school. We are also hopeful that he will be better enough by the next the week that he may still need to lounge and "take it easy" (i'm translating to be allowed to watch unlimited tv and drink and eat things with lots of sugar), but will be good enough that he'll be okay staying with Poppins during the day.
The ENT said that most kids who present like him become much happier and are much better behavior-wise after the procedure as they aren't getting particularly restful sleep. As he's a generally pretty good and easy kid, I'm thinking this could make him absurdly easy if it's true! ;-) That said, he does definitely have his moments (Mr. Hyde) where it's like he's a completely different kid. It's probably being overly optimistic to think that this will help that, but a girl can dream, right?
The ENT also said that at this age no myofunctional or speech therapy will be necessary. He should simply revert to breathing through his nose as soon as the swelling has gone down since that is the body's "natural way". He mentioned the same thing the dentist did about this making oral surgery as a teen less likely and having been through that fun of having both jaws broken and being in the hospital five or six days, I think if there's a CHANCE this will allow him to escape that, it's worth it. I also still have no feeling in my chin or lower lip, so more reason to avoid that much more substantial surgery.
He sort of knows it is coming, but we will need to definitely have a discussion with him to make sure he knows what to expect. I'm thinking I can couple it with a special grocery trip to pick out things to eat and drink post-surgery. Any other tips, anyone?
I'd made him an appointment with the ENT because his dentist had recommended that we have him evaluated by an ENT due to his mouth breathing, growing overbite and large tonsils. I really kind of expected the ENT to possibly scoff at us a little for being there and at most recommend a wait and see approach. Nope, not at all. He was in the room maybe three minutes and had asked Trajan some questions, looked in his throat and observed him and then asked me if I wanted the bad news then or in a few minutes. I voted for then and he said, "he's going to need both the adenoids and the tonsils out."
Apparently he pretty clearly has some obstruction due to his lymphatic tissue. The ENT said that it's not at all the size of the tonsils that makes him go to removal, but more the mouth breathing that is pretty much obligate. Apparently some notes in his chart from the allergist also supported the idea. He said that if we wanted, we could first schedule him for an overnight sleep study to document that he is having breathing events, but that he could pretty much guarantee that with Trajan a study would find episodes and that sleep studies are not a fun walk in the park either.
I'd already checked in with our primary and she sounded like removing them could be reasonable and did support that the ENT is a good one, so I figure let's do it.
He sent the nurse in to schedule it and her first comment was, "looking at you, I'm thinking we need to schedule this sooner or later. Do you have a couple weeks left?" Seriously woman, I'm 22 weeks. I realize I'm a bit large for 22 weeks, but I sure as heck don't look like 37 or anything! I for some reason have harsher standards for medical professionals. However, I did agree that sooner is better than later. Both because our world will get more crazy and because the younger you are, the easier this procedure is supposed to be. But he's ringbearing in a wedding on April 21, so we scheduled for April 26 as they apparently only do them on Thursdays.
It's a one-night stay and then lots of fun with fluids and soft things! They said that some kids are back out playing by the time they are discharged, but some take as long as 7-10 days. He has the week of the surgery off, so will hopefully just miss part of the next week of school. We are also hopeful that he will be better enough by the next the week that he may still need to lounge and "take it easy" (i'm translating to be allowed to watch unlimited tv and drink and eat things with lots of sugar), but will be good enough that he'll be okay staying with Poppins during the day.
The ENT said that most kids who present like him become much happier and are much better behavior-wise after the procedure as they aren't getting particularly restful sleep. As he's a generally pretty good and easy kid, I'm thinking this could make him absurdly easy if it's true! ;-) That said, he does definitely have his moments (Mr. Hyde) where it's like he's a completely different kid. It's probably being overly optimistic to think that this will help that, but a girl can dream, right?
The ENT also said that at this age no myofunctional or speech therapy will be necessary. He should simply revert to breathing through his nose as soon as the swelling has gone down since that is the body's "natural way". He mentioned the same thing the dentist did about this making oral surgery as a teen less likely and having been through that fun of having both jaws broken and being in the hospital five or six days, I think if there's a CHANCE this will allow him to escape that, it's worth it. I also still have no feeling in my chin or lower lip, so more reason to avoid that much more substantial surgery.
He sort of knows it is coming, but we will need to definitely have a discussion with him to make sure he knows what to expect. I'm thinking I can couple it with a special grocery trip to pick out things to eat and drink post-surgery. Any other tips, anyone?
Tuesday, March 20, 2012
Rant and RSV
I wrote last week about Chiron's trip to the ER due to bronchiolitis and a fever on March 6. What I haven't written about is the aftermath of this trip in the week and a half after.
Quick context: I took him into the ER Tuesday evening of that week due to wheezing that was accompanied by a fever. We were seen, he was given some breathing treatments, some Zofran for his vomiting from the cough and was started on prednisone. Easy, right? Continue albuterol as it helps, give prednisone to help him beat this cold, keep fever down to keep respiratory rate down and all is well.
He was tested for RSV and flu in the ER. In fact, he was actually checked for RSV TWICE because we agreed he could be used in a trial for an even more rapid RSV test. This was actually one of the reasons that our primary pediatrician asked that I take him in that night rather than just managing his symptoms at home. However, when I asked the doctor caring for him in the ER what the results of the tests were, I was told "since we treat the same, I don't disclose RSV or flu results to parents as they do not know how to appropriate use this information." When I pushed her on this further, she told me that this was an "evidence-based medicine approach."
I probably should have pushed more and at least asked to see the attending, but in my head I decided that this most likely meant that his results were negative and she was worried about a parent putting too much credence in a possibly false negative result and that's why she wasn't telling me. I argued with her for a couple of minutes, but in retrospect, should definitely have pressed harder as I truly believe that as a parent I am the most constant factor in Chiron's care and really am the final arbiter of his continuity of care. That's where I messed up.
That said, I shouldn't have HAD to push to get this information.
He did all right over the next few days, but did continue with some fevers that spiked high (105 level) at the beginning of the next week and so we saw his primary care pediatrician on March 14 (a week after the ER essentially). She asked about his ER visit and acted utterly shocked when I told her that I did not know the results of his flu and RSV tests despite having asked and had in fact been told that it was policy that I COULDN'T know his test results as a "parent". She moved past shock towards anger/irritation and told me that she would call and work to get the results as not giving them to me was nonsensical to her in general and definitely inappropriate towards a parent who was discussing H&H values with the clinician and was very familiar with her child's medical record.
She called me within half an hour of our leaving. He did have RSV. The doctor KNEW this at the time, but not only did not tell me of her own accord, but actually REFUSED to give this information when I made a direct request for it.
I was a little agitated about this and posted the scenario to Facebook. In discourse with a number of friends, I realized that I was more than a little agitated. I really felt that this unwillingness to provide me with this information represented a serious issue. I have a friend who works at the hospital and she actually provided me with the contact information for the right person to address a letter to the hospital to and so I wrote a letter. I mailed it yesterday and will be interested to hear if I get a response.
To be clear, I am not concerned about the quality of medical care that he received there. Between his time on floor and in the ER, I have nothing but positive things to say about the medical care provided by this hospital. However, I feel that this communication failure is significant as it both communicates an attitude that parents are assumed to be incompetent and purposefully withholds information from the parents that could be used in decision making!
While the majority of parents are not medical professionals, they do represent the individuals who spend the most time with the child and are ultimately responsible for the child's continuity of care. If information is withheld from me, I can not effectively do this for him. And this unwillingness to communicate makes me feel, rightly or not, like she did not have the time to effectively communicate with me.
And last part of my rant: I really do believe that withholding this information from me represented a public health risk. RSV can be a very serious illness and particularly if transmitted to a very young baby or one who is immunocompromised can easily have lifelong health complications or even result in death. Luckily, we recognized that he wasn't feeling great with just the bronchiolitis and did not expose him to any newborns, but we were not given this critical information by the hospital. I acted on my gut and had Paul stay home with him rather than dragging him to Dallas and back, but I shouldn't have had to act on my gut. I should have KNOWN he had RSV.
It's a teaching hospital and so I'm going to take a positive attitude and hope that this can serve as a teachable moment. We were lucky and there were no serious repercussions from this incident, but there is no guarantee that this will be the case next time.
And as promised, a bloody ear picture. When I took him into the doctor because his fever had spiked back up, she started trying to scope his ear, but it was so inflamed that it started bleeding. It was obvious from that much that he had an infection there and thus a clear cause of his fever.
Last reflection: his fever actually was the highest in the two week period the night after we saw the pedi and the next day or so. He was on every 3 hour doses of Motrin alternating with Tylenol both at the weight specific higher dose rather than the general window. That night when he was still at 104.8 after a dose, I had two reflections. First, he is a MUCH better sport than I am with that high a fever. When I had mastitis a year ago January and was running in the 104s to 105s, I didn't want to do anything. He was still playing on. And the second reflection is that I had no desire to take him back to Dell and negotiated with the on-call nurse to keep waking him up and checking throughout the night rather than go back in. I think I would have wanted to take this course anyway, but it scares me that my feelings about the attitude of a resident might make me reticent to take my child in.
So, do you think I'm crazy to be bothered by the withholding of this information, or would you be upset too? I know it's a bit of a rant, but I really think it is based on a very real issue.
A friend who I work with who is competent at you know mailing things sent it for me yesterday. Since it's in town, they should have it today or tomorrow. I know that they have a written policy that they must reply, but I don't know what the time frame is. I feel like hearing something by middle of next week will help me feel as if they are taking the issue seriously. I expect that I'll update here regardless.
And I promise I'll revert back to normal cute pictures :-)
Quick context: I took him into the ER Tuesday evening of that week due to wheezing that was accompanied by a fever. We were seen, he was given some breathing treatments, some Zofran for his vomiting from the cough and was started on prednisone. Easy, right? Continue albuterol as it helps, give prednisone to help him beat this cold, keep fever down to keep respiratory rate down and all is well.
He was tested for RSV and flu in the ER. In fact, he was actually checked for RSV TWICE because we agreed he could be used in a trial for an even more rapid RSV test. This was actually one of the reasons that our primary pediatrician asked that I take him in that night rather than just managing his symptoms at home. However, when I asked the doctor caring for him in the ER what the results of the tests were, I was told "since we treat the same, I don't disclose RSV or flu results to parents as they do not know how to appropriate use this information." When I pushed her on this further, she told me that this was an "evidence-based medicine approach."
I probably should have pushed more and at least asked to see the attending, but in my head I decided that this most likely meant that his results were negative and she was worried about a parent putting too much credence in a possibly false negative result and that's why she wasn't telling me. I argued with her for a couple of minutes, but in retrospect, should definitely have pressed harder as I truly believe that as a parent I am the most constant factor in Chiron's care and really am the final arbiter of his continuity of care. That's where I messed up.
That said, I shouldn't have HAD to push to get this information.
He did all right over the next few days, but did continue with some fevers that spiked high (105 level) at the beginning of the next week and so we saw his primary care pediatrician on March 14 (a week after the ER essentially). She asked about his ER visit and acted utterly shocked when I told her that I did not know the results of his flu and RSV tests despite having asked and had in fact been told that it was policy that I COULDN'T know his test results as a "parent". She moved past shock towards anger/irritation and told me that she would call and work to get the results as not giving them to me was nonsensical to her in general and definitely inappropriate towards a parent who was discussing H&H values with the clinician and was very familiar with her child's medical record.
She called me within half an hour of our leaving. He did have RSV. The doctor KNEW this at the time, but not only did not tell me of her own accord, but actually REFUSED to give this information when I made a direct request for it.
I was a little agitated about this and posted the scenario to Facebook. In discourse with a number of friends, I realized that I was more than a little agitated. I really felt that this unwillingness to provide me with this information represented a serious issue. I have a friend who works at the hospital and she actually provided me with the contact information for the right person to address a letter to the hospital to and so I wrote a letter. I mailed it yesterday and will be interested to hear if I get a response.
To be clear, I am not concerned about the quality of medical care that he received there. Between his time on floor and in the ER, I have nothing but positive things to say about the medical care provided by this hospital. However, I feel that this communication failure is significant as it both communicates an attitude that parents are assumed to be incompetent and purposefully withholds information from the parents that could be used in decision making!
While the majority of parents are not medical professionals, they do represent the individuals who spend the most time with the child and are ultimately responsible for the child's continuity of care. If information is withheld from me, I can not effectively do this for him. And this unwillingness to communicate makes me feel, rightly or not, like she did not have the time to effectively communicate with me.
And last part of my rant: I really do believe that withholding this information from me represented a public health risk. RSV can be a very serious illness and particularly if transmitted to a very young baby or one who is immunocompromised can easily have lifelong health complications or even result in death. Luckily, we recognized that he wasn't feeling great with just the bronchiolitis and did not expose him to any newborns, but we were not given this critical information by the hospital. I acted on my gut and had Paul stay home with him rather than dragging him to Dallas and back, but I shouldn't have had to act on my gut. I should have KNOWN he had RSV.
It's a teaching hospital and so I'm going to take a positive attitude and hope that this can serve as a teachable moment. We were lucky and there were no serious repercussions from this incident, but there is no guarantee that this will be the case next time.
And as promised, a bloody ear picture. When I took him into the doctor because his fever had spiked back up, she started trying to scope his ear, but it was so inflamed that it started bleeding. It was obvious from that much that he had an infection there and thus a clear cause of his fever.
So, do you think I'm crazy to be bothered by the withholding of this information, or would you be upset too? I know it's a bit of a rant, but I really think it is based on a very real issue.
A friend who I work with who is competent at you know mailing things sent it for me yesterday. Since it's in town, they should have it today or tomorrow. I know that they have a written policy that they must reply, but I don't know what the time frame is. I feel like hearing something by middle of next week will help me feel as if they are taking the issue seriously. I expect that I'll update here regardless.
And I promise I'll revert back to normal cute pictures :-)
Monday, March 12, 2012
Unscheduled Fun with Doctors!
The theme of the last week or so was definitely unscheduled fun with doctors. First, I had a cold that led to some asthma type symptoms that landed me at the allergist and on steroids and albuterol. Doing much better now though and nicely recovered.
Then, Chiron picked up the cold. He went from fine when we dropped him off on Tuesday morning to not looking great when I picked him up at 5:15. They said he'd been coughing and seemed a little under the weather, but weren't alarmed. I figured it was a cold and we headed to pick up Trajan. As we were waiting for Trajan, Chiron seemed to get worse by the minute, so I hurried him up and we headed home. Decided to skip dinner for him and just head upstairs, get a temp, give him milk and put him to bed. The temperature was 102.4, so I put in a call to the pediatrician to get them to call in some Albuterol preventatively. Started feeding him and he started wheezing and coughing more. He was deteriorating as I watched and so headed back downstairs to start packing to go to the ER. While doing so, the pediatrician called and said to definitely take him in.
At this point he was wheezing loud enough that it sounded like a musical instrument. Driving to the ER with the stereo all the way off listening to him to make sure he kept wheezing was one of the most terrifying experiences of my life.
He continued his life-long achievement of not having to triage in the ER by wheezing pretty severely at the checkin assessment. His pulse ox wasn't bad at 96, but since I'm not above dropping the phrase "29-weeker" there, we got taken straight back. They tested him for RSV and flu, but the doctor we saw says she refuses to give this information as it doesn't impact what they do and can get parents worked up. I think I got a nurse to say both were negative, but I'm not 100% sure. Things like that just annoy me. If I am quoting you his H&H, I obviously have a bit more knowledge than average running around there and I promise not to overreact either way. I just like information.
However, I still like this doctor because she said that she sees very little improvement with kids this young with albeterol because they don't have sufficient smooth muscle or something like that. Since he had wheezing in the lower part of the lungs and crackling in the upper, she had an RT administer two nebs of albuterol over the time we were there and they both confirmed that it didn't seem to improve things. As a result, she said that we definitely don't have to wake him up to do albuterol and can really think about not doing it at all. As he screams and struggles throughout, this made me love her.
Isn't he the happiest looking fella (with the exception of the first picture)? And this is hours after his bedtime. I got him a 40-minute nap in the Ergo at one point, but that was it.
He was having problems with his cough causing him to vomit, but I got very good at catching it in the emesis basin. They got some Zofran into him though and that helped a lot and so we were able to get him started on oral steroids. His fever came down with Motrin to 101 and so they discharged us with a prescription for four days of prednisone, a just in case albuterol prescription refill and instructions to monitor.
He stayed home with Paul the next day, but really was doing better by Thursday, so we sent him to the majority of a day of school. And he's looking much better now.
Trajan's explanation of his medicine to one of his after-school counselors was kind of awesome. He touched a bug and so his soldiers have to fight it and we are giving him medicine that gives his soldiers armor so they can kill the bugs easier!
Chiron stayed home this weekend while I ran Trajan up to my parents for spring break just to give him a little more time to recuperate, but I'm happy to say that he's looking great and has no fever nor any wheezing at all.
However, to continue the fun of unscheduled medical appointments, I had one of my own this morning. Yesterday, I got back into town and walked down to the mailbox with Chiron. Our mailbox is at the entry to the street in a cluster. This was actually an auto-eliminate when we first started looking at houses, but our standards dropped and we live with it. There was a package and so I carried it, the mail and Chiron back. Within a few minutes of getting back I felt a gush type wet and I had had some sort of bleed. I laid down while he napped and it completely stopped and there wasn't even the old blood within two hours, so I waited until this morning to call. They had me come in just to check things.
The answer is it was almost certainly a placenta bleed from Righty. Her placenta started as a partial previa and I think is now a marginal that we are hoping might make it all the way to no Type of previa at all by the end. It was self-correcting and hasn't continued to bleed, so nothing too alarming. Because of the bleed, she went ahead and did an internal exam and my cervix is not only long, but is still closed, which is definitely a very good thing.
Both babies looked good at this twelfth ultrasound, but Right had a much lower heartrate than Lefty when we looked on the ultrasound so she checked them on the Doppler. Righty was easy to find and was in the 150s. Lefty is harder since she has the anterior placenta, but we were able to get a reading through the placenta and it was in the 130s, so also a perfectly acceptable value.
She said to go ahead and add a 25-pound weight limit to my life as the only modification for now. She also said she wanted me to keep my appointment for next week so she can do a one-week recheck. I also see the perinatologist that day, so will definitely be checked!
And just for giggles, the dog who thinks she's a cat:
Then, Chiron picked up the cold. He went from fine when we dropped him off on Tuesday morning to not looking great when I picked him up at 5:15. They said he'd been coughing and seemed a little under the weather, but weren't alarmed. I figured it was a cold and we headed to pick up Trajan. As we were waiting for Trajan, Chiron seemed to get worse by the minute, so I hurried him up and we headed home. Decided to skip dinner for him and just head upstairs, get a temp, give him milk and put him to bed. The temperature was 102.4, so I put in a call to the pediatrician to get them to call in some Albuterol preventatively. Started feeding him and he started wheezing and coughing more. He was deteriorating as I watched and so headed back downstairs to start packing to go to the ER. While doing so, the pediatrician called and said to definitely take him in.
At this point he was wheezing loud enough that it sounded like a musical instrument. Driving to the ER with the stereo all the way off listening to him to make sure he kept wheezing was one of the most terrifying experiences of my life.
He continued his life-long achievement of not having to triage in the ER by wheezing pretty severely at the checkin assessment. His pulse ox wasn't bad at 96, but since I'm not above dropping the phrase "29-weeker" there, we got taken straight back. They tested him for RSV and flu, but the doctor we saw says she refuses to give this information as it doesn't impact what they do and can get parents worked up. I think I got a nurse to say both were negative, but I'm not 100% sure. Things like that just annoy me. If I am quoting you his H&H, I obviously have a bit more knowledge than average running around there and I promise not to overreact either way. I just like information.
However, I still like this doctor because she said that she sees very little improvement with kids this young with albeterol because they don't have sufficient smooth muscle or something like that. Since he had wheezing in the lower part of the lungs and crackling in the upper, she had an RT administer two nebs of albuterol over the time we were there and they both confirmed that it didn't seem to improve things. As a result, she said that we definitely don't have to wake him up to do albuterol and can really think about not doing it at all. As he screams and struggles throughout, this made me love her.
Isn't he the happiest looking fella (with the exception of the first picture)? And this is hours after his bedtime. I got him a 40-minute nap in the Ergo at one point, but that was it.
He was having problems with his cough causing him to vomit, but I got very good at catching it in the emesis basin. They got some Zofran into him though and that helped a lot and so we were able to get him started on oral steroids. His fever came down with Motrin to 101 and so they discharged us with a prescription for four days of prednisone, a just in case albuterol prescription refill and instructions to monitor.
He stayed home with Paul the next day, but really was doing better by Thursday, so we sent him to the majority of a day of school. And he's looking much better now.
Trajan's explanation of his medicine to one of his after-school counselors was kind of awesome. He touched a bug and so his soldiers have to fight it and we are giving him medicine that gives his soldiers armor so they can kill the bugs easier!
Chiron stayed home this weekend while I ran Trajan up to my parents for spring break just to give him a little more time to recuperate, but I'm happy to say that he's looking great and has no fever nor any wheezing at all.
However, to continue the fun of unscheduled medical appointments, I had one of my own this morning. Yesterday, I got back into town and walked down to the mailbox with Chiron. Our mailbox is at the entry to the street in a cluster. This was actually an auto-eliminate when we first started looking at houses, but our standards dropped and we live with it. There was a package and so I carried it, the mail and Chiron back. Within a few minutes of getting back I felt a gush type wet and I had had some sort of bleed. I laid down while he napped and it completely stopped and there wasn't even the old blood within two hours, so I waited until this morning to call. They had me come in just to check things.
The answer is it was almost certainly a placenta bleed from Righty. Her placenta started as a partial previa and I think is now a marginal that we are hoping might make it all the way to no Type of previa at all by the end. It was self-correcting and hasn't continued to bleed, so nothing too alarming. Because of the bleed, she went ahead and did an internal exam and my cervix is not only long, but is still closed, which is definitely a very good thing.
Both babies looked good at this twelfth ultrasound, but Right had a much lower heartrate than Lefty when we looked on the ultrasound so she checked them on the Doppler. Righty was easy to find and was in the 150s. Lefty is harder since she has the anterior placenta, but we were able to get a reading through the placenta and it was in the 130s, so also a perfectly acceptable value.
She said to go ahead and add a 25-pound weight limit to my life as the only modification for now. She also said she wanted me to keep my appointment for next week so she can do a one-week recheck. I also see the perinatologist that day, so will definitely be checked!
And just for giggles, the dog who thinks she's a cat:
Friday, November 11, 2011
Remembrance Day
It's amazing how one little comment can change your attitude and realign your relationship with the world.
A good friend moved to the UK after meeting, marrying and loving an amazing man who happened to be from Manchester. She posted a message on my wall this morning that simply stated: "Did you know that in the UK, today is referred to as "Remembrance Day"?"
Basically the same idea as Veterans Day, but with a different label. And that label got me thinking. Mourning, while perhaps valid, doesn't really do anything good for anyone. Remembering and celebrating just seems so much better.
Remembrance Day also fits with what I've been thinking over the last few days. I at first thought it was very odd that I've been thinking about this recurrence of certain dates when the due date didn't phase me at all. I think it's because they are different. The due date was an arbitrary date. Now there are clues and reminders that take me back. From Halloween to Veteran's Day (going with the US name) with the coming of cool air and the time change. I'm remembering who we were, what we dreamed of and what we experienced.
We return back to the same place around the sun, but I am not the same.
Remembrance to me conveys celebrating the happy, the hopes and the significance that she had. Because while she may never have breathed, she did impact the world. So today is a day of celebration to our daughter. Remembering every single ultrasound resulting in some sort of comment about her beating the heck out of her brother. Remembering laughing about how she was in a typical singleton positioning in the uterus with her brother showed transverse across the top in a position more typically seen in triplet pregnancies. Remembering the dreams and hopes that we dreamed for her.
We sent popcorn to the antepartum and L&D part of the hospital today as part of our remembrance. It's amazing how long it took me to decide what to say on the quick little card. It's easy with the NICU because it's really just about Chiron, but this group of people includes those who cared for Aurelia and all of us while they were still in utero.
I went simply with "thank you for the care you showed Aurelia, Chiron, Trajan, Paul and myself during our time there" and signed it.
So if you have a moment this Remembrance Day, take a second to think of our daughter and join me in a smile for her. I'm glad she existed.
A good friend moved to the UK after meeting, marrying and loving an amazing man who happened to be from Manchester. She posted a message on my wall this morning that simply stated: "Did you know that in the UK, today is referred to as "Remembrance Day"?"
Basically the same idea as Veterans Day, but with a different label. And that label got me thinking. Mourning, while perhaps valid, doesn't really do anything good for anyone. Remembering and celebrating just seems so much better.
Remembrance Day also fits with what I've been thinking over the last few days. I at first thought it was very odd that I've been thinking about this recurrence of certain dates when the due date didn't phase me at all. I think it's because they are different. The due date was an arbitrary date. Now there are clues and reminders that take me back. From Halloween to Veteran's Day (going with the US name) with the coming of cool air and the time change. I'm remembering who we were, what we dreamed of and what we experienced.
We return back to the same place around the sun, but I am not the same.
Remembrance to me conveys celebrating the happy, the hopes and the significance that she had. Because while she may never have breathed, she did impact the world. So today is a day of celebration to our daughter. Remembering every single ultrasound resulting in some sort of comment about her beating the heck out of her brother. Remembering laughing about how she was in a typical singleton positioning in the uterus with her brother showed transverse across the top in a position more typically seen in triplet pregnancies. Remembering the dreams and hopes that we dreamed for her.
We sent popcorn to the antepartum and L&D part of the hospital today as part of our remembrance. It's amazing how long it took me to decide what to say on the quick little card. It's easy with the NICU because it's really just about Chiron, but this group of people includes those who cared for Aurelia and all of us while they were still in utero.
I went simply with "thank you for the care you showed Aurelia, Chiron, Trajan, Paul and myself during our time there" and signed it.
So if you have a moment this Remembrance Day, take a second to think of our daughter and join me in a smile for her. I'm glad she existed.
Thursday, September 22, 2011
Days 54-59 of hospital stay for Chiron's life
As I mentioned briefly, Chiron took a bonus six-day trip back to the hospital at the beginning of this month. I took him in because when Paul brought him home from daycare he was really lethargic and his daycare sheet indicated that he really hadn't eaten that day and had spent almost all of it asleep. My best, medically uneducated guess, was that maybe he had a little stomach bug that we weren't noticing with his GERD and he had gotten dehydrated. Checked in with doctor and they said to go ahead and take him into the ER where they might give him some fluids.
Chiron and I get to the hospital and he's asleep and so I decide to just leave him in his "bucket" (car seat carrier) rather than move him to a sling and carry him in that way. We are standing in line to get information to be able to go sit in the waiting room for triage when a nurse walks up to me. She asked if he's always that pale and I answered no. She started a sternum rub or something like that and he was not responding. Other nurse calls back that they have an unresponsive infant and so are bringing him straight back. My blood pressure starts to rise. I actually put a hand on him to confirm for myself that he had a respiratory rate. They rush him back and get into a room. He's still looking pale. He's still not responding. Then as soon as we unbuckled the straps he popped awake. A picked him out of the seat and he grabbed my fingers and stood on his foot and cooed at the nurses that were standing there. That's one way to skip a line.
They got the story, examined him and then said they would go ahead and draw some blood and give him some fluid. Unfortunately, he's awful to start an IV in. First person tries, no luck. They get the charge nurse, no luck. They get the floor supervisor, no luck. They get someone who apparently is the champion head sticker, no luck. They call up to the NICU and got one of the nurses and first poke she is in. And she looks at the amount of blood they need and declares that it makes sense just to do it with a heel stick.
Doctor comes in and says they're going to go ahead and admit him. In retrospect, I realize they didn't really tell me why. Apparently he looked off enough to me that I didn't question admitting him. Actually we were told they were admitting him somewhere around stick attempt number two, but we couldn't go up to the floor until the IV was in place.
Get up there and the on call resident tells me that he is severely anemic. Anemia at his age starts at 11 for hemoglobin and he was 6.8. She also said that seeing him reassured her because when she saw the number she was expecting a much sicker baby.
They rounded that morning. They came up with the theory that he had existing reflux that he'd gotten a minor stomach bug on top of and that explained things. His gastroenterologist came by and said they were going to schedule him for a scope (EGD) the next day first thing in the morning.
They cut him off from food at 4 am to prep for the scope that was scheduled for 9:30. 9:30 comes and something has come up and so they have to bump him to 3. They let him eat once right then just to avoid cruelty. They decide to get some additional bloodwork just for information. We take him down around two or so to the surgical floor to get started. Then they declare that his prothrombin time came back to long to do the surgery that day and we go back upstairs.
The doctors (it's a teaching hospital) all come upstairs and say he presents oddly. The "picture" apparently isn't fitting together, but they are going to start with treating the symptoms. They'd already started therapeutic iron doses and they moved him to the intermediate care unit so they could administer vitamin K. His gastroenterologist says that it is a really low likelihood, but wants to try him on a trial of Neocate to make sure this wasn't protein intolerance on top of reflux causing malabsorption. He was not presenting like a protein intolerance kid at all (no mucusy stools, no congestion, has never had an ear/sinus infection and doesn't have dermatological symptoms), but since his big brother did have multiple protein intolerances, seemed worth trying. I got told to keep pumping though because he was almost certainly going back to breastmilk.
That was Friday. They said that if he responded well to the vitamin K and iron, they would discharge him Sunday. Saturday afternoon he pulled out his IV and despite having the charge nurse, an NP from the PICU and the hospital manager all try, they couldn't get an IV started on him. They declared he could have his last two vitamin K doses as shots. This also resulted in another move change as he no longer needed to be in the intermediate care unit and so they took him up to the hematology floor.
I was supposed to have left town Friday for a conference, but I had rescheduled my flight to Sunday mid-day. They drew blood early in the morning of Sunday, but when it came back he was even more anemic (6.1 hemoglobin) and his reticulyte count was worse rather than better, so they decided to do a blood transfusion that afternoon. I still left. I knew Paul was competent. I knew the kid was stable even if in need of medical care. I knew they had a good plan, but it was still one of the hardest things I've ever done. I actually semi-cutoff someone at the Parking Spot and ended up in tears as I apologized to him!
They did the blood transfusion and it was amazing what the impact was on his energy and attitude. Happy baby with color in his cheeks!
This has rambled much longer than I intended, so I should probably find a conclusion. He was discharged the day following the transfusion. They decided that there likely was an element of protein intolerance and so left him on the Neocate. Neocate and the end of breastmilk are worthy of their own post, and hopefully I'll write it. We went to the gastroenterologist Monday of this week and he'd gained three ounces that week which is HUGE in a kid who had not gained weight since the beginning of August. And Monday his hemoglobin was 10.8 and hematocrit was 33.8, so much improved on the anemia front. They will repeat those tests in three weeks along with rechecking the prothrombin and other clotting tests. For now, we see no therapeutic reason to do the scope, so we are putting that off as well.
His gastroenterologist seems a bit frustrated and not necessarily convinced that he's got the whole picture completely figured out, but my philosophy is that as long as we can find actions to take that get him back on track to gaining weight and keep his blood from getting out of whack again, that's good enough.
And that's days 54-59 of hospital stay for a 274-day-old boy (as of today).
Chiron and I get to the hospital and he's asleep and so I decide to just leave him in his "bucket" (car seat carrier) rather than move him to a sling and carry him in that way. We are standing in line to get information to be able to go sit in the waiting room for triage when a nurse walks up to me. She asked if he's always that pale and I answered no. She started a sternum rub or something like that and he was not responding. Other nurse calls back that they have an unresponsive infant and so are bringing him straight back. My blood pressure starts to rise. I actually put a hand on him to confirm for myself that he had a respiratory rate. They rush him back and get into a room. He's still looking pale. He's still not responding. Then as soon as we unbuckled the straps he popped awake. A picked him out of the seat and he grabbed my fingers and stood on his foot and cooed at the nurses that were standing there. That's one way to skip a line.
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| He spit up a Longhorn, way to impress the medical staff in Austin, home of the University of Texas Longhorns |
They got the story, examined him and then said they would go ahead and draw some blood and give him some fluid. Unfortunately, he's awful to start an IV in. First person tries, no luck. They get the charge nurse, no luck. They get the floor supervisor, no luck. They get someone who apparently is the champion head sticker, no luck. They call up to the NICU and got one of the nurses and first poke she is in. And she looks at the amount of blood they need and declares that it makes sense just to do it with a heel stick.
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| Can you spot all four bandaids from the four attempts before the fifth was successful in starting an IV? |
Doctor comes in and says they're going to go ahead and admit him. In retrospect, I realize they didn't really tell me why. Apparently he looked off enough to me that I didn't question admitting him. Actually we were told they were admitting him somewhere around stick attempt number two, but we couldn't go up to the floor until the IV was in place.
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| Asleep after the IV was finally gotten, but before we headed up to the floor. Very pale. |
Get up there and the on call resident tells me that he is severely anemic. Anemia at his age starts at 11 for hemoglobin and he was 6.8. She also said that seeing him reassured her because when she saw the number she was expecting a much sicker baby.
They rounded that morning. They came up with the theory that he had existing reflux that he'd gotten a minor stomach bug on top of and that explained things. His gastroenterologist came by and said they were going to schedule him for a scope (EGD) the next day first thing in the morning.
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| Looking much better with a little hydration |
They cut him off from food at 4 am to prep for the scope that was scheduled for 9:30. 9:30 comes and something has come up and so they have to bump him to 3. They let him eat once right then just to avoid cruelty. They decide to get some additional bloodwork just for information. We take him down around two or so to the surgical floor to get started. Then they declare that his prothrombin time came back to long to do the surgery that day and we go back upstairs.
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| His one permitted feed between the two fast periods. Apparently being deprived of food pushed him to decide to take things into his own hands. |
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| Can we go home yet? |
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| Why are you waking me up in the middle of the night to change floors? |
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| Getting transfused. This is the picture Paul sent when my plane landed. Did not help with my guilt! |
This has rambled much longer than I intended, so I should probably find a conclusion. He was discharged the day following the transfusion. They decided that there likely was an element of protein intolerance and so left him on the Neocate. Neocate and the end of breastmilk are worthy of their own post, and hopefully I'll write it. We went to the gastroenterologist Monday of this week and he'd gained three ounces that week which is HUGE in a kid who had not gained weight since the beginning of August. And Monday his hemoglobin was 10.8 and hematocrit was 33.8, so much improved on the anemia front. They will repeat those tests in three weeks along with rechecking the prothrombin and other clotting tests. For now, we see no therapeutic reason to do the scope, so we are putting that off as well.
His gastroenterologist seems a bit frustrated and not necessarily convinced that he's got the whole picture completely figured out, but my philosophy is that as long as we can find actions to take that get him back on track to gaining weight and keep his blood from getting out of whack again, that's good enough.
And that's days 54-59 of hospital stay for a 274-day-old boy (as of today).
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| Feeling much better! (Big brother is exploring Chiron's temperature using himself as a control) |
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