Even though we haven't had any major crises with Eliza lately, things have been tough and its been a struggle to find the positives. It's been exhausting and overwhelming so we haven't done a good job of keeping the blog updated. A summary of the issues we have been dealing with..
+ Failure to thrive - you can get a good look at this in the chart Glenn previously posted. Eliza had one good week of growth and then has stagnated the last couple weeks. There are lots of hypotheses and reasons being discussed for this problem including: high metabolism (is she really my daughter??), too much energy being expended (having to work hard to breathe and keep warm due to her size), decreased absorption due to her ileostomy (though hers is very low in her small intestines so in theory this shouldn't be a significant factor), other complicated chemistry factors (ex. her sodium and potassium levels), and just the repeated needed pauses in feeds due to other treatments. (One possibility that was eliminated was low calorie milk -- they ran a test and found my breast milk to be 27 calories/ounce. This is quite high considering "normal" milk to be 20 calories.) Her weight gain issues seem to be a combination of all of the above and there are lots of things being tried and discussed to attempt to help but its such a complicated situation that no one really knows exactly what's needed to help her..........This problem is her single most significant issue since it is the linchpin for everything else getting better.
+ Osteopenia of prematurity - girl's got weak bones. This condition is another lesson in chemistry that I don't think I will go into great details at the moment. Basically it's related to her growth and mineral absorption...and so she's at a high risk for bone fractures.
+ Blood transfusions - at the beginning of her life she had several transfusions (which were expected) but now that she is older she should be starting to make her own blood cells. For the last 3 weeks she has needed a transfusion every week. Each time she receives one her body misses another chance to make its own cells and it puts excess iron into her system. Her feeds are also stopped for 12 hours and decreased for another 12. Without the transfusions though her heart has to work very hard and her kidneys don't function as well. One way to make this better? Growing!
+ Hydrocortisone - Baby's got a serious dependence. This is a steroid that her body should be making on its own but in preemies it has to be supplemented and, like the blood, the more you supplement the less the body makes. Her renal functions are dependent on the hydcortisone levels and as they try to wean, her kidneys stop functioning as well. High levels of the steroid inhibit growth.
So 100 points for you if you can spot the vicious cycle in all of this.
All of the issues make it difficult to grow and yet she needs to grow to get better. Awesome.
Thursday, November 11, 2010
Wednesday, November 10, 2010
Growing pains
We'll try and do a real post soon to cover some of the multitude of events, changes, and medical scares that Eliza has had over the last couple of weeks, but I wanted to go ahead and share this. We had a meeting with Eliza's care team (doctor, nurse practitioners, nurses, social worker, etc.) on Tuesday to discuss her care plan and get a better "big picture" understanding of where we're at and what needs to be done. While we covered a lot of important ground, this chart in particular really struck a chord with me. It shows how Eliza has grown (or not) since birth as compared to the typical development for babies.
One point of confusion for me (which I still haven't gotten a satisfactory answer to, unfortunately) is whether these growth curves are typical for micro-preemies for Eliza, as opposed to infants continuing to develop in the womb. The doctor said it was the same for both, but that just doesn't make sense to me - everything I've heard before says preemies just can't grow as well compared to staying in the womb for longer. I'd really like to see a similar set of charts that are specific to preemies... hopefully it wouldn't look as bad for Eliza?
One point of confusion for me (which I still haven't gotten a satisfactory answer to, unfortunately) is whether these growth curves are typical for micro-preemies for Eliza, as opposed to infants continuing to develop in the womb. The doctor said it was the same for both, but that just doesn't make sense to me - everything I've heard before says preemies just can't grow as well compared to staying in the womb for longer. I'd really like to see a similar set of charts that are specific to preemies... hopefully it wouldn't look as bad for Eliza?
Monday, November 1, 2010
It's been a month today
Since our Charlotte passed away. I've been thinking about her a lot and even called Eliza "Charlotte" to the nurse. That was painful.
It was so hard to go back to the hospital the day after she passed away and yet I think it would have been even harder not to. As difficult as it is being at the hospital day in and out, it's also where we spent all of our time with Charlotte and Oliver - and I get to feel a little closer to the memories of them by being there.
Last week the word "triplet" mysteriously dropped off of Eliza's list of "issues" that are read off every morning during rounds. That bothered me more than I would have guessed. She went from "24 week triplet" to "24 weeker." I mentioned that I wasn't a big fan of the change to one of the nurse practitioners and the omission was corrected. Now every morning when I hear "24 week triplet" it brings a small smile to my face knowing that Charlotte and Oliver won't be forgotten.
It was so hard to go back to the hospital the day after she passed away and yet I think it would have been even harder not to. As difficult as it is being at the hospital day in and out, it's also where we spent all of our time with Charlotte and Oliver - and I get to feel a little closer to the memories of them by being there.
Last week the word "triplet" mysteriously dropped off of Eliza's list of "issues" that are read off every morning during rounds. That bothered me more than I would have guessed. She went from "24 week triplet" to "24 weeker." I mentioned that I wasn't a big fan of the change to one of the nurse practitioners and the omission was corrected. Now every morning when I hear "24 week triplet" it brings a small smile to my face knowing that Charlotte and Oliver won't be forgotten.
Cuteness
A rare look at Eliza's uncovered face - she's giving us her best grumpy old man look.
And this is Eliza trying to figure out how to escape her assessment.
And kangarooing with Mama
Love that face!
Sunday, October 31, 2010
How IS baby doing?
Heather touched on this topic briefly in a previous post but I think it's worth talking about in more detail. It's unbelievably hard to answer people when they ask us "How is Eliza doing?" - or worse, for those that we haven't talked to in a while, "How are the girls doing?", "How are the babies doing?", or even "How is the pregnancy going?"
From so many people, this question seems intended in the same spirit as "What's up?" or "How are you today?" - no real honest answer is expected, rather a "Fine" or "Just great, thanks" is the norm. I've caught myself giving this kind of answer by reflex (mostly to near-strangers), but it makes me feel terrible afterward - I feel like such a liar for having said such a thing.
How much honesty is too much, though? When those who are reasonably up-to-date (co-workers, friends that we see regularly, etc.) ask, we try to give a bit more detail - "Eliza is having a good week, she's breathing well and they're increasing her food every day to get her to gain weight" - but even that is painting perhaps an overly optimistic picture. Sure, she's breathing well but they're concerned whether the CPAP mask is damaging her skin and lungs, they're increasing her food every day but they're concerned about the increased food input overloading her already compromised digestive system or possibly even causing NEC, her weight gain isn't as consistent as we'd all like (over the last two days she's lost 70 grams, for example...) we're concerned about the amount of hydrocortisone that she still needs on a daily basis to keep her blood pressure up and her kidney function strong................. but geez, if we answer an innocent question like that with all of the current issues, concerns, and fears that she still has, we're sure they'll never ask us again! They don't really want to know all that - they just want the good news, the rosy picture, the optimistic viewpoint, right?
It gets even worse when we're talking to someone who doesn't know about recent events (or not so recent - Charlotte died a month ago tomorrow...!?) - when someone asks "How are the babies doing?", when we break the news about Oliver and Charlotte, we can see the listener crumple, and we feel compelled to add "But Eliza's doing great so far!" or some similar upbeat conclusion just to offset the bombshell that we just dropped on them. Cause really, who wants to be responsible for completely shattering someone else's good mood?
It's very isolating, to be honest - it feels very difficult to talk openly to anyone else about how things are really going. We feel compelled to put on a brave face, to describe the situation with an optimism and generalization (or even distance) that we don't really feel. We know people care about us, but there's so much that we have to feel, experience and process every day, and so much that changes for Eliza each day, that it's simply not possible for us to explain in a few sentences to anyone who isn't already immersed in the situation.
At least the other parents in the ICN mostly get it. When we ask one another "How is baby X doing", the response is always appropriately qualified when it's good - "She's having a good day so far today" or "He's healthy and comfortable at the moment". They at least understand, as do we, that there's always storm clouds on the horizon, and things could change for the worse at a moment's notice.
From so many people, this question seems intended in the same spirit as "What's up?" or "How are you today?" - no real honest answer is expected, rather a "Fine" or "Just great, thanks" is the norm. I've caught myself giving this kind of answer by reflex (mostly to near-strangers), but it makes me feel terrible afterward - I feel like such a liar for having said such a thing.
How much honesty is too much, though? When those who are reasonably up-to-date (co-workers, friends that we see regularly, etc.) ask, we try to give a bit more detail - "Eliza is having a good week, she's breathing well and they're increasing her food every day to get her to gain weight" - but even that is painting perhaps an overly optimistic picture. Sure, she's breathing well but they're concerned whether the CPAP mask is damaging her skin and lungs, they're increasing her food every day but they're concerned about the increased food input overloading her already compromised digestive system or possibly even causing NEC, her weight gain isn't as consistent as we'd all like (over the last two days she's lost 70 grams, for example...) we're concerned about the amount of hydrocortisone that she still needs on a daily basis to keep her blood pressure up and her kidney function strong................. but geez, if we answer an innocent question like that with all of the current issues, concerns, and fears that she still has, we're sure they'll never ask us again! They don't really want to know all that - they just want the good news, the rosy picture, the optimistic viewpoint, right?
It gets even worse when we're talking to someone who doesn't know about recent events (or not so recent - Charlotte died a month ago tomorrow...!?) - when someone asks "How are the babies doing?", when we break the news about Oliver and Charlotte, we can see the listener crumple, and we feel compelled to add "But Eliza's doing great so far!" or some similar upbeat conclusion just to offset the bombshell that we just dropped on them. Cause really, who wants to be responsible for completely shattering someone else's good mood?
It's very isolating, to be honest - it feels very difficult to talk openly to anyone else about how things are really going. We feel compelled to put on a brave face, to describe the situation with an optimism and generalization (or even distance) that we don't really feel. We know people care about us, but there's so much that we have to feel, experience and process every day, and so much that changes for Eliza each day, that it's simply not possible for us to explain in a few sentences to anyone who isn't already immersed in the situation.
At least the other parents in the ICN mostly get it. When we ask one another "How is baby X doing", the response is always appropriately qualified when it's good - "She's having a good day so far today" or "He's healthy and comfortable at the moment". They at least understand, as do we, that there's always storm clouds on the horizon, and things could change for the worse at a moment's notice.
Wednesday, October 27, 2010
Monday, Monday
Dear Eliza,
Just because we talked about how great you were doing and bragged on you all weekend does not mean we think what you are doing is easy. You really don't have to demonstrate how hard you have it by having a truly terrible Monday. Getting a little less attention from the professionals because you are doing better really is a good thing (more food, less poking!), I promise.
All my love,
Mom
Eliza had quite a day on Monday. Basically she was running low on blood (all those heel sticks for lab work really add up) and really needed a transfusion. The nurses didn't clue in because she wasn't showing any of the typical signs of this (brady's and desats). This seems to be just how she is - even when she's been really sick before, she hasn't had too much of either of those. I knew something was wrong though because she had been very still all morning which is unusual for her since she is a feisty baby. Her color was also a little off and by the time her lunchtime assessment rolled around she was looking really bad to me. She was slack jaw and a nice shade of grey. I pointed this out to the nurse who agreed. Thankfully everyone jumped to action since when she starts to get sick she can progress to REALLY sick very fast. Her BP was plummeting so they had to almost max her out on dopamine (hypotension medication) to stabilize her until the blood arrived and the transfusion started to work.
Once the transfusion kicked in, they were able to start weaning her off the dopamine pretty quickly, and she was back off dopamine by 9:30 that evening. But she had to be NPO (no food!) for as long as she was on the dopamine, and for four hours after the transfusion too. When they checked again, her hematocrit (level of blood in her system) was still not real high so they gave her a second transfusion.
She finally started to look better Tuesday and much to Eliza's happiness they started her food back Tuesday night and will be ramping up to her previous amount over 24 hours.
This time I think Eliza made her point very clear and a few things have hopefully been learned by all:
Just because we talked about how great you were doing and bragged on you all weekend does not mean we think what you are doing is easy. You really don't have to demonstrate how hard you have it by having a truly terrible Monday. Getting a little less attention from the professionals because you are doing better really is a good thing (more food, less poking!), I promise.
All my love,
Mom
Eliza had quite a day on Monday. Basically she was running low on blood (all those heel sticks for lab work really add up) and really needed a transfusion. The nurses didn't clue in because she wasn't showing any of the typical signs of this (brady's and desats). This seems to be just how she is - even when she's been really sick before, she hasn't had too much of either of those. I knew something was wrong though because she had been very still all morning which is unusual for her since she is a feisty baby. Her color was also a little off and by the time her lunchtime assessment rolled around she was looking really bad to me. She was slack jaw and a nice shade of grey. I pointed this out to the nurse who agreed. Thankfully everyone jumped to action since when she starts to get sick she can progress to REALLY sick very fast. Her BP was plummeting so they had to almost max her out on dopamine (hypotension medication) to stabilize her until the blood arrived and the transfusion started to work.
Once the transfusion kicked in, they were able to start weaning her off the dopamine pretty quickly, and she was back off dopamine by 9:30 that evening. But she had to be NPO (no food!) for as long as she was on the dopamine, and for four hours after the transfusion too. When they checked again, her hematocrit (level of blood in her system) was still not real high so they gave her a second transfusion.
She finally started to look better Tuesday and much to Eliza's happiness they started her food back Tuesday night and will be ramping up to her previous amount over 24 hours.
This time I think Eliza made her point very clear and a few things have hopefully been learned by all:
- Girl likes her blood. Normally they only transfuse when the hematocrit gets below 30, but her last reading a few days ago was 31(but had dropped to 26 by the time they started the transfusion). So the new rule is when she gets below 35, she gets a transfusion. Maybe she gets to be a vampire for halloween ;-)
- Bradys and desats are her last resort to show that she's not feeling well. To catch things earlier, attention needs to be paid to activity level, color, and general appearance.
Monday, October 25, 2010
HIPAA foolishness
One of the more comical yet frustrating aspects of visiting the ICN has been this. Each room at the ICN holds up to 4 babies, so at any given time Eliza is sharing a room with two or three other babies, ranging from tiny micro-preemies like her, to near-full-term newborns who only stay for a few days, to older and bigger babies who are in for the long term due to severe health issues. Although there's a fair amount of turnover and occasional relocations from room to room, we more often than not have had a particular roommate for days to weeks at a time.
However! Despite spending hours a day in the same room with these babies for days, without even a partition or curtain between Eliza's incubator and theirs, the nurses cannot tell us anything about the other babies' health issues, current status, or recent milestones, due (I can only assume) to HIPAA privacy regulations. We can see at a glance the little info card on each bed (which shows their name, birth date, birth weight, and parents' contact information), and we can look at them and see that they're on bili lights at the moment, or connected to a ventilator today when they were on the CPAP yesterday, or see that the nurses have to put on disposable gowns when handling this baby (meaning this one has something contagious) - but we can't ask even the simplest questions like "How's that baby doing today" and expect an answer from the nurse.
I know I tend to be a curious (nosy?) person by nature, so perhaps my viewpoint is not typical, but I think it would often be comforting, or at least informative, to know what's happening with the other babies that we see every day. Are they having similar issues to what we've been through? Are the different issues that they're facing ones that Eliza will have to deal with in her future? Are they improving day to day, staying stable, or declining?
It's especially strange and disconcerting whenever we walk in to Eliza's room and find that where one of her roommates was yesterday, there's now only an empty berth or even a completely different baby. Did the other baby get to go home? Did they transfer it to a different room (for whatever obscure reasons they have for rearranging the babies - better feng shui?)? Or did something terrible happen? The nurses never say.
At least some of the babies have actively involved parents whose visiting schedules match ours, so we can talk with their parents, swap stories and medical updates, and learn about them that way. Some of Eliza's current roommates are lucky this way, and it's been very helpful to be able to have someone to talk to who's dealing with similar stuff as a parent. But it makes me wonder that much more about the babies whose parents we don't see or get a chance to talk to. What's their story?
However! Despite spending hours a day in the same room with these babies for days, without even a partition or curtain between Eliza's incubator and theirs, the nurses cannot tell us anything about the other babies' health issues, current status, or recent milestones, due (I can only assume) to HIPAA privacy regulations. We can see at a glance the little info card on each bed (which shows their name, birth date, birth weight, and parents' contact information), and we can look at them and see that they're on bili lights at the moment, or connected to a ventilator today when they were on the CPAP yesterday, or see that the nurses have to put on disposable gowns when handling this baby (meaning this one has something contagious) - but we can't ask even the simplest questions like "How's that baby doing today" and expect an answer from the nurse.
I know I tend to be a curious (nosy?) person by nature, so perhaps my viewpoint is not typical, but I think it would often be comforting, or at least informative, to know what's happening with the other babies that we see every day. Are they having similar issues to what we've been through? Are the different issues that they're facing ones that Eliza will have to deal with in her future? Are they improving day to day, staying stable, or declining?
It's especially strange and disconcerting whenever we walk in to Eliza's room and find that where one of her roommates was yesterday, there's now only an empty berth or even a completely different baby. Did the other baby get to go home? Did they transfer it to a different room (for whatever obscure reasons they have for rearranging the babies - better feng shui?)? Or did something terrible happen? The nurses never say.
At least some of the babies have actively involved parents whose visiting schedules match ours, so we can talk with their parents, swap stories and medical updates, and learn about them that way. Some of Eliza's current roommates are lucky this way, and it's been very helpful to be able to have someone to talk to who's dealing with similar stuff as a parent. But it makes me wonder that much more about the babies whose parents we don't see or get a chance to talk to. What's their story?
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