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!
Tuesday, December 21, 2010
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. :)
Friday, November 26, 2010
Thankfulness
Some of the things I'm most thankful for:
- Our beautiful baby girl Eliza - every day with her is a treasure.
- My wonderful wife Heather, without whom I would have crashed and burned long ago.
- Eliza finally starting to grow again. Grow baby grow!
- The time we had with our babies Oliver and Charlotte (though I would rather have been thankful for them being here with us still...)
- All of our family, friends, co-workers, and neighbors who have stepped forward to help us through tough times with prayers, supportive words, and prepared meals.
- Our dog Pasha, antisocial and neurotic though she can be.
- Having a good job that lets me provide for our family, isn't too stressful, and gives me the flexibility to be at the hospital when I need to be.
- Health insurance. I don't know how anyone can put babies through the ICN without it.
- Home-made Thanksgiving dinner shared with family.
- The beginning of Christmas season...!
Monday, November 22, 2010
One Step Forward
Eliza is now 2 pounds!! It looks like for now they have finally worked out the magic concoction to get the baby to grow. Four days ago they started her on IV nutrition in addition to the milk and some other additives.. and she's gained over 100 grams since!
The tightness in my chest has relaxed some and it feels so good to be able to breathe easy for a moment.
My sister came to visit this weekend and brought her handy video camera. I think we will have to get one soon. :) Eliza's starting to enjoy touch and seems to be checking out her surroundings. I hope you share in our enjoyment of this moment. She's so magical to me. :)
Wednesday, November 17, 2010
Still trying to grow
I'm starting to feel like a broken record... lack of growth (aka failure to thrive) is still Eliza's #1 problem. After Monday's blood transfusion (only six days since the previous one...) and the associated 12 hours of no food followed by 12 hours of half food, Tuesday night found that Eliza had again lost all of the weight she'd gained recently. Her weight was right back to where it had been two weeks ago - very frustrating!
We had a lengthy discussion during rounds Wednesday morning, and a meeting with the new doctor that afternoon, and came out of it with several plans:
First, increased her feeding amount again - up to 180 mL/kg/day now, which should be enough to provide about one and a half times as many calories as a preemie normally needs to grow. This should really be enough food for her to grow on - so long as she can keep getting it consistently. Which brought us to part two of the plan. Blood transfusions are the main reason she has to go without food, so they started her on injections of erythropoietin, a hormone that stimulates blood cell production. Hopefully that will help her not need transfusions so often. When she does need transfusions, the plan was to put a PICC line back in so that she could switch over to full IV feeds for the day so as to continue getting plenty of calories.
So that was the plan, anyway. And I'm sure you all know by now just how well we and "plans" get along these days... so of course, overnight she started "dumping" - the increased feeds overloaded her digestive system and caused lots of the milk to just pass straight through her more or less undigested - not the effect we wanted! So we went on to "plan B" rather quicker than expected, reducing her feeds by a good bit and adding clear fluids and lipids (delivered by IV for now) to make up the difference.
They tried to put in a PICC line today (because a PICC can stay in a lot longer than an IV, and they can give more concentrated nutrients through it) but were unsuccessful. Apparently her veins are not in the best shape, whether from previous IVs, or something else - I'm not exactly sure. So we still don't have a fallback option for providing all of her nutrients when she next needs another transfusion. They're talking about trying to put in some other kind of central line tomorrow, but that's not definite yet - we'll see.
Waiting now for her 9 PM assessment to find out whether she's gained or lost weight today... here's hoping for some good news for a change!
We had a lengthy discussion during rounds Wednesday morning, and a meeting with the new doctor that afternoon, and came out of it with several plans:
First, increased her feeding amount again - up to 180 mL/kg/day now, which should be enough to provide about one and a half times as many calories as a preemie normally needs to grow. This should really be enough food for her to grow on - so long as she can keep getting it consistently. Which brought us to part two of the plan. Blood transfusions are the main reason she has to go without food, so they started her on injections of erythropoietin, a hormone that stimulates blood cell production. Hopefully that will help her not need transfusions so often. When she does need transfusions, the plan was to put a PICC line back in so that she could switch over to full IV feeds for the day so as to continue getting plenty of calories.
So that was the plan, anyway. And I'm sure you all know by now just how well we and "plans" get along these days... so of course, overnight she started "dumping" - the increased feeds overloaded her digestive system and caused lots of the milk to just pass straight through her more or less undigested - not the effect we wanted! So we went on to "plan B" rather quicker than expected, reducing her feeds by a good bit and adding clear fluids and lipids (delivered by IV for now) to make up the difference.
They tried to put in a PICC line today (because a PICC can stay in a lot longer than an IV, and they can give more concentrated nutrients through it) but were unsuccessful. Apparently her veins are not in the best shape, whether from previous IVs, or something else - I'm not exactly sure. So we still don't have a fallback option for providing all of her nutrients when she next needs another transfusion. They're talking about trying to put in some other kind of central line tomorrow, but that's not definite yet - we'll see.
Waiting now for her 9 PM assessment to find out whether she's gained or lost weight today... here's hoping for some good news for a change!
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