Today is the original due date (40 weeks gestation) for our babies. December 27. Eliza is now 110 days old, or zero days adjusted age. She weighs just shy of 3 and a half pounds today. It's a bittersweet day since we're happy that Eliza is here and doing as well as she is, but this milestone makes us especially miss Oliver and Charlotte and wonder what they would be like at this age.
The latest change in Eliza's plan seems to be working well for her. Previously, because she was not growing again, and kept dumping her food undigested out of her ostomy, they kept decreasing her food and increasing her TPN (intravenous) nutrition to give her more guaranteed calories and nutrients (since the TPN doesn't need to be digested and can't be dumped). But restricting her food intake so much was making her hungry and fussy, so she was burning extra calories by fussing, not the desired outcome!
On Christmas Day, one of our favorite nurse practitioners came up with a clever new approach - increase Eliza's TPN to where it provides all of her caloric and nutritional needs, and instead of giving her any fixed amount of food on a fixed schedule, just let her eat when she acts hungry, with food that gets successfully digested instead of dumped being a bonus rather than a part of her base nutritional requirements.
So far this new plan seems to be working really well. She's eating about every three hours, eating a LOT (nearly as much as she was being given before), acting content and sleeping a lot, and gaining weight fast. We hope it continues!
Monday, December 27, 2010
Saturday, December 25, 2010
Merry Christmas!
Merry Christmas from our little Christmas elf!
Thank you to all of our family and friends for all of your love and support this year. May your Christmas be a peaceful and joyous one.
Thank you to all of our family and friends for all of your love and support this year. May your Christmas be a peaceful and joyous one.
Thursday, December 23, 2010
Picture Time!
Eliza giving me the stink eye, wondering what I am about to do to her.
Her feet are so cute and tiny
her hands too.
Woops!
Hat over the eyes makes for an angry - yet adorable babe :)
First bath in a tub (at least as far as we know!) - Dec 18
Loving some cuddle time
Makes me giggle every time. Yeah, I know it's ridiculous :)
Always trying to stick her fingers in her eyes!
Just for comparison, check this out
How far she's come!!
Tuesday, December 21, 2010
You know, more of the same.
So the last post didn't get published until today even though Glenn wrote it last night, so of course there has been more changes since those words were written. The one thing consistent with this whole experience is just how much everything changes... constantly.
The attempt at the axillary PICC line last night was successful! This means no surgery tomorrow and she can get IV nutrition again. Hopefully this will change our 2 week streak of stagnant growth. Back when she was consistently gaining an ounce a day we had calculated out that the earliest she could come home was mid to late Feb. Now I hate to think how the current problems have impacted that - two more months is already more than I can bear to think about. Since she was continuing to dump, her food per day has been reduced and they'll be giving her more calories in the IV. I hate that for her since I think she already feels hungry with the amount she was on. More talk of changing her feeding cycle as well - from continuous to on two hours, off one (3 hour cycle)... which they say is a step towards a "term baby" eating pattern.
Speaking of term baby, Eliza practically is. Tomorrow she is 39 weeks gestational age - can you believe it? I can't!! Thinking about it brings on a whole new set of emotions and worries that I won't go into now. :)
Glenn's at the hospital for me today and requested I take the day off. I think he may be a little concerned for my sanity (me too, actually! ;) It's been really hard but I've managed to stay away from the hospital so far today. I was able to get my hair cut and get a massage (killer back pain lately... I really should stop being so stressed, huh?) My hair stylist was very thankful to Glenn as well since I've ended up canceling the last 2 appointments I had because of goings-on with Eliza. Making scheduled plans outside the hospital (or even in it, sometimes) is still an almost impossible thing with all that happens day to day. I rarely get to see friends because of this and miss them much!
Glenn just texted to say he'll stay at the hospital tonight and see me tomorrow since Eliza is only content when he holds the paci in her mouth..... she sounds like a real baby now doesn't she?
Will post pictures soon!
The attempt at the axillary PICC line last night was successful! This means no surgery tomorrow and she can get IV nutrition again. Hopefully this will change our 2 week streak of stagnant growth. Back when she was consistently gaining an ounce a day we had calculated out that the earliest she could come home was mid to late Feb. Now I hate to think how the current problems have impacted that - two more months is already more than I can bear to think about. Since she was continuing to dump, her food per day has been reduced and they'll be giving her more calories in the IV. I hate that for her since I think she already feels hungry with the amount she was on. More talk of changing her feeding cycle as well - from continuous to on two hours, off one (3 hour cycle)... which they say is a step towards a "term baby" eating pattern.
Speaking of term baby, Eliza practically is. Tomorrow she is 39 weeks gestational age - can you believe it? I can't!! Thinking about it brings on a whole new set of emotions and worries that I won't go into now. :)
Glenn's at the hospital for me today and requested I take the day off. I think he may be a little concerned for my sanity (me too, actually! ;) It's been really hard but I've managed to stay away from the hospital so far today. I was able to get my hair cut and get a massage (killer back pain lately... I really should stop being so stressed, huh?) My hair stylist was very thankful to Glenn as well since I've ended up canceling the last 2 appointments I had because of goings-on with Eliza. Making scheduled plans outside the hospital (or even in it, sometimes) is still an almost impossible thing with all that happens day to day. I rarely get to see friends because of this and miss them much!
Glenn just texted to say he'll stay at the hospital tonight and see me tomorrow since Eliza is only content when he holds the paci in her mouth..... she sounds like a real baby now doesn't she?
Will post pictures soon!
Monday, December 20, 2010
We hate PICCs and ostomies
The first few days after our last post went pretty well for Eliza. She started to get overheated in her isolette, so after some discussion, on the 10th, she was moved out of her isolette and into a big girl crib! She didn't like this very much at first (it's a lot noisier out in the open, especially in the TCN) but she soon adapted. It's really something seeing her out in the open now.
We have continued to work with Occupational Therapy and Speech Therapy on feeding Eliza from the bottle and the breast, and she's been a quick learner. She got her first "latch" on the 14th, and on almost every try with the bottle she's taken as much of it as they'll let her drink.
The two-week followup for Eliza's ROP showed that the laser procedure hadn't cleared everything up as well as they'd hoped, so she had to go through a second round of lasering on the 16th. She did pretty decently through the procedure and afterward, but we're definitely hoping that's the end of that.
While everything else was happening, Eliza started dumping (having high amounts of output from her ostomy) again, which is a problem since it means her food was passing through her system undigested. So they went down on her milk volume and increased her TPN (intravenous) input to compensate for it. This seemed to work for a while and she was continuing to grow reasonably well. But on the 15th, her PICC line got clotted and they weren't able to flush it clean, so out it came, and there she was - back on nothing but milk (plus the usual assortment of additives and supplements, of course).
Since we'd previously seen that milk alone just wasn't enough for her to grow, priority one was to try and get a new line put in, but unfortunately her veins are already in pretty rough shape from the amount of poking and prodding she's already been through in her short life so far. One of her nurses tried on day shift, but didn't have any luck. On night shift, another expert nurse was going to try for the PICC, but things hit an unexpected snag. She's one of the nurses that we had during Charlotte's stressful last nights, and we'd asked not to be assigned her as a caregiver again - but not because of any concerns about her technical skills, only her people skills. So we had no objections to her handling Eliza's PICC placement, especially after multiple people told us that she was absolutely the best person for the job.
Unfortunately, that apparently didn't get communicated to her, or something, as we found out when we called later in the shift to check in that she had bowed out of doing it and asked another nurse to do it instead. Supposedly this other nurse was just as experienced, but she had no luck either, and the next day, when we were checking on Eliza, we saw that she had at least a half dozen separate puncture marks, each of which was associated with a pretty bad bruise or vein blowout. We're still trying to chase down exactly what happened overnight, since we would have been fine with the original nurse trying, and each nurse is only supposed to try at most three times before giving up, and we have to wonder why Eliza had so many blowouts if the backup nurse truly was "just as good". We don't have the answers yet, though. We're starting to feel like "problem parents", but we won't let that stop us - Eliza's care comes first!
Since the PICC wasn't working out, it was decided to give her a few days with just the milk feeds to see how she could do. Eliza started to show signs of dumping again, so she got switched to continuous feeding (previously she'd been on on-2-hours/off-2-hours or on-3/off-1) to give her the food more slowly and hopefully digest better. She still kept dumping, so they replaced her "MCT oil" supplement with "microlipids", which are supposed to slow the passage of food through her digestive tract and give it more time to be absorbed.
Unfortunately, the microlipids are very slippery, and ever since that change was made, her ostomy bag simply would not stay attached to her skin for any length of time, and became very prone to leaking. When the bag leaks, it needs to be taken off and completely replaced at the next available opportunity, since semi-digested food on the skin is acidic and irritating. At its worst, she had to have her bag changed 4 times in one shift (it's normally only changed every 24-48 hours). So even though it was working to make her digest more thoroughly (and she did manage to gain a little weight last night after losing the previous two nights), we worry that the amount of stress she goes through with so many bag changes (it can be a lengthy process, and having stuff peeled off and then new stuff maneuvered into place and then glued to her skin really makes her mad) ends up sabotaging any gains she's making. Plus she's starting to have some skin irritation from all the bag attaching and detaching she's been through.
In short, she's back between a rock and a hard place again. Microlipids make her bag fall off, damage her skin, and stress her. TPN requires PICC access, which is proving very difficult to obtain and retain. If she gets neither microlipids nor TPN, then she can't get enough calories to grow with her digestive system the way it is. And until she grows a bunch more, they won't be willing to do the surgery to reconnect her bowels. So frustrating.
Tonight one of the nurse practitioners is going to try to put in a different type of PICC line (an axillary PICC, which goes in through the armpit instead of an arm or leg), which only NPs are permitted to try and insert. If that doesn't work, our next fallback option is surgery to put in a Broviac catheter. Surgery is obviously the less desirable option, so here's hoping the latest PICC attempt works.
We have continued to work with Occupational Therapy and Speech Therapy on feeding Eliza from the bottle and the breast, and she's been a quick learner. She got her first "latch" on the 14th, and on almost every try with the bottle she's taken as much of it as they'll let her drink.
The two-week followup for Eliza's ROP showed that the laser procedure hadn't cleared everything up as well as they'd hoped, so she had to go through a second round of lasering on the 16th. She did pretty decently through the procedure and afterward, but we're definitely hoping that's the end of that.
While everything else was happening, Eliza started dumping (having high amounts of output from her ostomy) again, which is a problem since it means her food was passing through her system undigested. So they went down on her milk volume and increased her TPN (intravenous) input to compensate for it. This seemed to work for a while and she was continuing to grow reasonably well. But on the 15th, her PICC line got clotted and they weren't able to flush it clean, so out it came, and there she was - back on nothing but milk (plus the usual assortment of additives and supplements, of course).
Since we'd previously seen that milk alone just wasn't enough for her to grow, priority one was to try and get a new line put in, but unfortunately her veins are already in pretty rough shape from the amount of poking and prodding she's already been through in her short life so far. One of her nurses tried on day shift, but didn't have any luck. On night shift, another expert nurse was going to try for the PICC, but things hit an unexpected snag. She's one of the nurses that we had during Charlotte's stressful last nights, and we'd asked not to be assigned her as a caregiver again - but not because of any concerns about her technical skills, only her people skills. So we had no objections to her handling Eliza's PICC placement, especially after multiple people told us that she was absolutely the best person for the job.
Unfortunately, that apparently didn't get communicated to her, or something, as we found out when we called later in the shift to check in that she had bowed out of doing it and asked another nurse to do it instead. Supposedly this other nurse was just as experienced, but she had no luck either, and the next day, when we were checking on Eliza, we saw that she had at least a half dozen separate puncture marks, each of which was associated with a pretty bad bruise or vein blowout. We're still trying to chase down exactly what happened overnight, since we would have been fine with the original nurse trying, and each nurse is only supposed to try at most three times before giving up, and we have to wonder why Eliza had so many blowouts if the backup nurse truly was "just as good". We don't have the answers yet, though. We're starting to feel like "problem parents", but we won't let that stop us - Eliza's care comes first!
Since the PICC wasn't working out, it was decided to give her a few days with just the milk feeds to see how she could do. Eliza started to show signs of dumping again, so she got switched to continuous feeding (previously she'd been on on-2-hours/off-2-hours or on-3/off-1) to give her the food more slowly and hopefully digest better. She still kept dumping, so they replaced her "MCT oil" supplement with "microlipids", which are supposed to slow the passage of food through her digestive tract and give it more time to be absorbed.
Unfortunately, the microlipids are very slippery, and ever since that change was made, her ostomy bag simply would not stay attached to her skin for any length of time, and became very prone to leaking. When the bag leaks, it needs to be taken off and completely replaced at the next available opportunity, since semi-digested food on the skin is acidic and irritating. At its worst, she had to have her bag changed 4 times in one shift (it's normally only changed every 24-48 hours). So even though it was working to make her digest more thoroughly (and she did manage to gain a little weight last night after losing the previous two nights), we worry that the amount of stress she goes through with so many bag changes (it can be a lengthy process, and having stuff peeled off and then new stuff maneuvered into place and then glued to her skin really makes her mad) ends up sabotaging any gains she's making. Plus she's starting to have some skin irritation from all the bag attaching and detaching she's been through.
In short, she's back between a rock and a hard place again. Microlipids make her bag fall off, damage her skin, and stress her. TPN requires PICC access, which is proving very difficult to obtain and retain. If she gets neither microlipids nor TPN, then she can't get enough calories to grow with her digestive system the way it is. And until she grows a bunch more, they won't be willing to do the surgery to reconnect her bowels. So frustrating.
Tonight one of the nurse practitioners is going to try to put in a different type of PICC line (an axillary PICC, which goes in through the armpit instead of an arm or leg), which only NPs are permitted to try and insert. If that doesn't work, our next fallback option is surgery to put in a Broviac catheter. Surgery is obviously the less desirable option, so here's hoping the latest PICC attempt works.
Wednesday, December 8, 2010
Another week past - that's all?!
I sat down to write this post thinking that it's been a long time since our last one, but I see now that it's only (?) been a week. Feels like a lot longer.
Eliza is three months old today. Just being able to say that makes me breathe a bit easier. Oliver died at three days old, and Charlotte at three weeks, so I couldn't help but worry as this date approached... you might say I'm being more than a bit superstitious, and you'd be absolutely right. I know it's crazy. But still, three months feels very significant to me.
Last Wednesday, Eliza got moved from the ICN (intensive care nursery) to the TCN (transitional care nursery). This is supposedly a good thing, both as a reflection of how stable and healthy she is (no longer considered critical) and as a big step closer to eventually coming home. We can't help but have mixed feelings about it, though, as TCN does mean she gets less individual attention from the nurses, and the babies are MUCH louder than the ICN babies. Hungry & big babies = lots of noise. Our first impressions were also unfortunately rather negative, as we had a TCN nurse on Thursday and Friday nights who completely failed to chart (i.e., record for future reference) some symptoms that Eliza was developing, even after Heather specifically called attention to them as being unusual for Eliza. By Saturday, she was having a lot of bradies and desats, and after a chest x-ray, it turned out that she was retaining fluid in her lungs again. This is clearing up fine after putting her back on diuretics, but if the TCN nurse had properly recorded things on Thursday and Friday we believe that it could have been caught earlier before it caused her so much stress. So all in all not the best first impression, but at least Eliza has been moved to a quieter corner now and we have had great nurses since the incident.
Since Eliza's been growing so much lately, her eyes have been developing too, and unfortunately we found last week that she had begun to develop significant ROP (retinopathy of prematurity). So on Friday she got laser eye surgery to correct it. It's too early to tell for sure whether that was enough to resolve it, but a follow-up exam this week showed no further degradation, which is a good sign in and of itself. Baby will have enough vision problems just being the child of me (extreme nearsightedness) and Heather (extreme astigmatism), she doesn't need anything else causing her eyes more trouble!
Other exciting events in Eliza's life - they (and we) have started trying to teach her to eat rather than just having all her food pumped down a tube into her stomach. Baby steps so far, just taking tiny amounts of milk from a bottle, but she seems to be doing pretty decently with it so far. It was really funny watching her reaction to Heather trying to burp her after one such feed - she was making faces that clearly said "What the heck is going on here?"
All of the growth and weight gain she's been having have made such a transformation of Eliza's appearance. She's looking like a small baby now instead of like a skinny, wrinkly old man. She's actually got some baby fat now (especially in her cheeks), and her arms and legs are getting chubby instead of being little skin-and-bones sticks. It's so good to see. They've even started letting her wear preemie clothes, although they're still too big for her so it's a pretty comical sight:
Eliza is three months old today. Just being able to say that makes me breathe a bit easier. Oliver died at three days old, and Charlotte at three weeks, so I couldn't help but worry as this date approached... you might say I'm being more than a bit superstitious, and you'd be absolutely right. I know it's crazy. But still, three months feels very significant to me.
Last Wednesday, Eliza got moved from the ICN (intensive care nursery) to the TCN (transitional care nursery). This is supposedly a good thing, both as a reflection of how stable and healthy she is (no longer considered critical) and as a big step closer to eventually coming home. We can't help but have mixed feelings about it, though, as TCN does mean she gets less individual attention from the nurses, and the babies are MUCH louder than the ICN babies. Hungry & big babies = lots of noise. Our first impressions were also unfortunately rather negative, as we had a TCN nurse on Thursday and Friday nights who completely failed to chart (i.e., record for future reference) some symptoms that Eliza was developing, even after Heather specifically called attention to them as being unusual for Eliza. By Saturday, she was having a lot of bradies and desats, and after a chest x-ray, it turned out that she was retaining fluid in her lungs again. This is clearing up fine after putting her back on diuretics, but if the TCN nurse had properly recorded things on Thursday and Friday we believe that it could have been caught earlier before it caused her so much stress. So all in all not the best first impression, but at least Eliza has been moved to a quieter corner now and we have had great nurses since the incident.
Since Eliza's been growing so much lately, her eyes have been developing too, and unfortunately we found last week that she had begun to develop significant ROP (retinopathy of prematurity). So on Friday she got laser eye surgery to correct it. It's too early to tell for sure whether that was enough to resolve it, but a follow-up exam this week showed no further degradation, which is a good sign in and of itself. Baby will have enough vision problems just being the child of me (extreme nearsightedness) and Heather (extreme astigmatism), she doesn't need anything else causing her eyes more trouble!
Other exciting events in Eliza's life - they (and we) have started trying to teach her to eat rather than just having all her food pumped down a tube into her stomach. Baby steps so far, just taking tiny amounts of milk from a bottle, but she seems to be doing pretty decently with it so far. It was really funny watching her reaction to Heather trying to burp her after one such feed - she was making faces that clearly said "What the heck is going on here?"
All of the growth and weight gain she's been having have made such a transformation of Eliza's appearance. She's looking like a small baby now instead of like a skinny, wrinkly old man. She's actually got some baby fat now (especially in her cheeks), and her arms and legs are getting chubby instead of being little skin-and-bones sticks. It's so good to see. They've even started letting her wear preemie clothes, although they're still too big for her so it's a pretty comical sight:
Wednesday, December 1, 2010
Turkey Day
We had a great Thanksgiving with our little turkey!
Much thanks to my family for coming up, bringing yummy food, and hanging out with us at the hospital. :)
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