They keep on growing! As of tonight, Penny weighs 1680 grams (that's 3 lbs, 11 oz) and Isaak is 1460 grams (3 lbs, 3 oz). Little Miss Penny is now a half pound bigger than her brother!
Penny's practice breastfeeding has been going very well. She's been a very noisy eater since she is trying to latch on and suckle with a feeding tube in her mouth. I've affectionately named her "Piglette" because of the slurping! To help her become a more effective eater her nurse removed her orogastric tube and replaced it with a nasogastric tube this evening. We'll find out tomorrow if she will keep Piglette as her new nickname.
Both babies are on 2 liters of flow on their vapotherm. Isaak is usually at room air (21 percent oxygen). Penny varies from 23 to 28 percent oxygen. She was just bumped to 2 liters today in hopes that they could wean the amount of oxygen she needs and it seems to be working so far.
Isaak was on the Elecare for less than 24 hours as his output was much higher on the formula than on breast milk. Since he's been switched back to breast milk, his output has been anywhere from 9 to 13ml every 4 hours. That's still a little higher than they would like for it to be but it's much better than the 23ml of output he had with the formula.
That's all for now. Hopefully we'll get some new pictures up in the next few days.
Showing posts with label Vapotherm. Show all posts
Showing posts with label Vapotherm. Show all posts
Monday, June 21, 2010
Thursday, June 17, 2010
3lbs of Cute
...well, really a little more than that.
Both of the little guys have decided to go on a growth spurt the last few days. Penny finally surpassed her brother (having the advantage of her full intestinal tract and all). She is sitting at 1450g, or 3lbs 3oz while Isaak is at 1420g, or 3lbs 2oz. Penny has well more than doubled her birth weight of 650g and Isaak is working on his (780g), but has a ways more to go.
It's not all fun though. Today is a good news/bad news sort of day. Weight gain is good. Respiratory problems are bad. Maybe not BP oil spill bad but not good.
Isaak made it 2 days with no respiratory support but has decided to backtrack substantially and is now back on the vapotherm. In fact, the little fella is receiving a higher oxygen concentration than he was before coming off. He's also experiencing significantly more and higher severity apnea and bradycardia episodes, especially today. Scary? Yes. "Normal"? Maybe.
Two things are going on here: The first is simply that his hematocrit is likely fantastically low. It was down to 20 a couple of days ago and might be lower now. He's making his own red blood cells but apparently not enough to fully re-supply himself. Secondly, he appears to have developed a case of very dry and very thick secretions. Why? Who knows. He spent some time on oxygen from the wall (which is bubbled through water but not heated like the vapotherm). This might have dried him out. The vapotherm seems to be loosening things up a bit and the nurses are getting a lot of boogies out. His right nostril was stopped up or swollen enough they they could not get a catheter in to lavage or suction. Hopefully the swelling will go down overnight as they leave that side alone.
What are they doing to help him? Well, besides vapotherm again, they were finally able to figure out how to get enough iron in his TPN to begin Epo shots tonight (he's probably getting the first one as I type this). A transfusion was considered multiple times, but there are risks associated with those AND they would have had to stop all oral intake. It's very important that his intestines stay engaged and working right now so they decided to hold off on the transfusion in the hopes of trying epo. We would have liked to have seen something done a bit more aggressively, but these guys are so delicate and there are so many potential reactions to treatments, it's always a balancing act. The epo did wonders for Penny. It's a 10day course but hopefully we will see improvement in his situation fairly rapidly.
Something to remember here: These guys are both doing fantastically well by preemie standards. Ebbs and flows of condition (esp. respiratory) are to be expected. It's a little disheartening of course, but you learn to expect it and try not to dwell on it.
Penny is doing better breathing every day. We hope tomorrow brings even more improvement. She certainly has spells of A's and B's, but is growing more stable. The little princess might be off all support before long!
That's it for now. Oh, there are new pictures up. Click on Ollie up to the right and you'll see a new album. It's amazing how cute the little guys are getting ;)
G'nite.
Both of the little guys have decided to go on a growth spurt the last few days. Penny finally surpassed her brother (having the advantage of her full intestinal tract and all). She is sitting at 1450g, or 3lbs 3oz while Isaak is at 1420g, or 3lbs 2oz. Penny has well more than doubled her birth weight of 650g and Isaak is working on his (780g), but has a ways more to go.
It's not all fun though. Today is a good news/bad news sort of day. Weight gain is good. Respiratory problems are bad. Maybe not BP oil spill bad but not good.
Isaak made it 2 days with no respiratory support but has decided to backtrack substantially and is now back on the vapotherm. In fact, the little fella is receiving a higher oxygen concentration than he was before coming off. He's also experiencing significantly more and higher severity apnea and bradycardia episodes, especially today. Scary? Yes. "Normal"? Maybe.
Two things are going on here: The first is simply that his hematocrit is likely fantastically low. It was down to 20 a couple of days ago and might be lower now. He's making his own red blood cells but apparently not enough to fully re-supply himself. Secondly, he appears to have developed a case of very dry and very thick secretions. Why? Who knows. He spent some time on oxygen from the wall (which is bubbled through water but not heated like the vapotherm). This might have dried him out. The vapotherm seems to be loosening things up a bit and the nurses are getting a lot of boogies out. His right nostril was stopped up or swollen enough they they could not get a catheter in to lavage or suction. Hopefully the swelling will go down overnight as they leave that side alone.
What are they doing to help him? Well, besides vapotherm again, they were finally able to figure out how to get enough iron in his TPN to begin Epo shots tonight (he's probably getting the first one as I type this). A transfusion was considered multiple times, but there are risks associated with those AND they would have had to stop all oral intake. It's very important that his intestines stay engaged and working right now so they decided to hold off on the transfusion in the hopes of trying epo. We would have liked to have seen something done a bit more aggressively, but these guys are so delicate and there are so many potential reactions to treatments, it's always a balancing act. The epo did wonders for Penny. It's a 10day course but hopefully we will see improvement in his situation fairly rapidly.
Something to remember here: These guys are both doing fantastically well by preemie standards. Ebbs and flows of condition (esp. respiratory) are to be expected. It's a little disheartening of course, but you learn to expect it and try not to dwell on it.
Penny is doing better breathing every day. We hope tomorrow brings even more improvement. She certainly has spells of A's and B's, but is growing more stable. The little princess might be off all support before long!
That's it for now. Oh, there are new pictures up. Click on Ollie up to the right and you'll see a new album. It's amazing how cute the little guys are getting ;)
G'nite.
Monday, June 7, 2010
Penny and Isaak - June 6/7 Update
First off for the fun stuff...NEW PHOTOS!
Now to the updates:
Isaak is still at UNC and Penny is still at WakeMed. We will be continuing our discussions with the doctors and nurses at both hospitals to determine how to proceed from here. I think Bekka and I have decided after having the little monkeys in 2 locations for over 2 weeks, that it's time to get them to the same hospital lest we go insane. Now we just have to get all of the information we can and weigh the pros and cons to see where they wind up. This is not easy as there are medical, mental and practical issues all in the mix.
In terms of health, Penny is weighing in at 1080g and has been ramped up to 23ml every 3 hours on her feeds. She is continuing to do well on the Vapotherm at a flow rate of 1.5 lpm with an O2 concentration around 30-32%. They'd like to get her concentration down to room air (21%) but she's not quite able to do that yet. It may very well be due to her low hematocrit level. They considered a transfusion, but she is beginning to make her own red blood cells and so they have decided to try a round of Erythropoietin or "Epo". This drug helps promote the survival of red blood cells and so they hope it allows her bone marrow to catch up with her needs. (It was also famously used in cycling doping cases). The treatment course is 10 days long during which they will also be giving increased iron supplements. If all goes well, this will help her over the hump, after which she will be making enough of her own red blood cells. She has also been a little edemic over the last couple of days, so they have given her a dose of Lasix to help her get rid of fluid. This is not uncommon when the babies are getting O2 and are experiencing low red blood cell counts. Both of them have received doses of Lasix at varying times, especially post transfusion. There are many causes for edema in micro-preemies and no one is worried just yet.
Isaak is hanging in there. He is still being fed orally, if slowly. It appears they may have ramped up his feeds a little too fast at the end of the week, and he began "dumping" lightly processed milk out of his ostomy. They backed the rate down and he appears to be adapting well and is beginning to process the breast milk better. They have resumed increasing the volume, but will proceed more slowly. He weighed in this evening at 1152 grams. That's a good number, but we have to remember that they would really like for him to get as close as possible to 2kg before doing the ostomy repair surgery. It's not a hard and fast rule, but it can really help recovery. You will note that little sister is rapidly making up that 130g difference at birth! From a respiratory standpoint, he's doing very well and is now strictly on heated and humidified air (Vapotherm that they aren't calling Vapotherm) from a nasal cannula getting 2 lpm of flow at room air concentrations. No more head-squishing CPAP for the time being!
So all in all we are doing OK. The babies continue to sleep and grow and we continue to love them a little bit more every day.
Now to the updates:
Isaak is still at UNC and Penny is still at WakeMed. We will be continuing our discussions with the doctors and nurses at both hospitals to determine how to proceed from here. I think Bekka and I have decided after having the little monkeys in 2 locations for over 2 weeks, that it's time to get them to the same hospital lest we go insane. Now we just have to get all of the information we can and weigh the pros and cons to see where they wind up. This is not easy as there are medical, mental and practical issues all in the mix.
In terms of health, Penny is weighing in at 1080g and has been ramped up to 23ml every 3 hours on her feeds. She is continuing to do well on the Vapotherm at a flow rate of 1.5 lpm with an O2 concentration around 30-32%. They'd like to get her concentration down to room air (21%) but she's not quite able to do that yet. It may very well be due to her low hematocrit level. They considered a transfusion, but she is beginning to make her own red blood cells and so they have decided to try a round of Erythropoietin or "Epo". This drug helps promote the survival of red blood cells and so they hope it allows her bone marrow to catch up with her needs. (It was also famously used in cycling doping cases). The treatment course is 10 days long during which they will also be giving increased iron supplements. If all goes well, this will help her over the hump, after which she will be making enough of her own red blood cells. She has also been a little edemic over the last couple of days, so they have given her a dose of Lasix to help her get rid of fluid. This is not uncommon when the babies are getting O2 and are experiencing low red blood cell counts. Both of them have received doses of Lasix at varying times, especially post transfusion. There are many causes for edema in micro-preemies and no one is worried just yet.
Isaak is hanging in there. He is still being fed orally, if slowly. It appears they may have ramped up his feeds a little too fast at the end of the week, and he began "dumping" lightly processed milk out of his ostomy. They backed the rate down and he appears to be adapting well and is beginning to process the breast milk better. They have resumed increasing the volume, but will proceed more slowly. He weighed in this evening at 1152 grams. That's a good number, but we have to remember that they would really like for him to get as close as possible to 2kg before doing the ostomy repair surgery. It's not a hard and fast rule, but it can really help recovery. You will note that little sister is rapidly making up that 130g difference at birth! From a respiratory standpoint, he's doing very well and is now strictly on heated and humidified air (Vapotherm that they aren't calling Vapotherm) from a nasal cannula getting 2 lpm of flow at room air concentrations. No more head-squishing CPAP for the time being!
So all in all we are doing OK. The babies continue to sleep and grow and we continue to love them a little bit more every day.
Monday, May 31, 2010
Memorial Day Update
Yes, we know it's been 5 days since we last updated on our little guys. Let me tell you that overall that's been a good thing. Auntie Amanda was down last week helping us not go crazy and getting some things done in preparation for that so far away yet not too distant homecoming day (We already miss her. It was like old times). That left mommy and me to visit our babies and hold them and watch them grow. They have had a pretty good few days.
Health-wise, both are doing well. Isaak's recovery from surgery has been termed remarkable and they ended up cutting short his antibiotics and starting oral feeds on Friday (5/28), 3 days earlier than expected. He is up to 1041g (2lb 4oz) while Penelope might be up to 990g (they are a little suspicious of that number tonight so they will be weighing her again). Penny is getting 18ml of milk+HMF+Protein. Isaak seems to be tolerating his light feeds pretty well and is getting 1ml per hour on a continuous feed as they try to get his system restarted and monitor his outputs. He has to get up to 4+ lbs before they will attempt the repair surgery to reconnect his upper and lower intestines. The quicker this happens the better as it allows him to get less IV nutrition and reduces the chance for liver or kidney damage.
From a respiratory standpoint, Isaak may finally be outdoing his older (but smaller) sister. They are mixing and matching bubble CPAP and vapotherm with him. When he's on vapotherm, it's at 2 liter of flow with a room air mix. Penny is only on 1.5l of flow on vapotherm, but they can't seem to get her O2 mix down much below 28%. This happens sometimes with these little guys. Even at higher flow rates, she was wanting a similar level of oxygen.
I've put up new pictures. We have more than this on the other camera and I'm going to try to get some new pics of Penny tomorrow as the only ones I had available were a couple of weeks old. She looks so different now! You can see that Isaak is really a cutie and is growing in a head of soft, blond hair. It looks more than a little bit like his older brothers to be honest. That's a very bittersweet thing.
Health-wise, both are doing well. Isaak's recovery from surgery has been termed remarkable and they ended up cutting short his antibiotics and starting oral feeds on Friday (5/28), 3 days earlier than expected. He is up to 1041g (2lb 4oz) while Penelope might be up to 990g (they are a little suspicious of that number tonight so they will be weighing her again). Penny is getting 18ml of milk+HMF+Protein. Isaak seems to be tolerating his light feeds pretty well and is getting 1ml per hour on a continuous feed as they try to get his system restarted and monitor his outputs. He has to get up to 4+ lbs before they will attempt the repair surgery to reconnect his upper and lower intestines. The quicker this happens the better as it allows him to get less IV nutrition and reduces the chance for liver or kidney damage.
From a respiratory standpoint, Isaak may finally be outdoing his older (but smaller) sister. They are mixing and matching bubble CPAP and vapotherm with him. When he's on vapotherm, it's at 2 liter of flow with a room air mix. Penny is only on 1.5l of flow on vapotherm, but they can't seem to get her O2 mix down much below 28%. This happens sometimes with these little guys. Even at higher flow rates, she was wanting a similar level of oxygen.
I've put up new pictures. We have more than this on the other camera and I'm going to try to get some new pics of Penny tomorrow as the only ones I had available were a couple of weeks old. She looks so different now! You can see that Isaak is really a cutie and is growing in a head of soft, blond hair. It looks more than a little bit like his older brothers to be honest. That's a very bittersweet thing.
Wednesday, May 26, 2010
Many Thanks and an Update on our Little Troopers
So obviously this has been a crazy couple of weeks. I mean, it wasn't like it was normal before but Isaak's whirlwind transfer to UNC and sudden surgery have added a whole new element of insanity. Tomorrow marks one week since he was moved over there. Maintaining a presence at two hospitals, home and work has been...challenging. Bekka spent a couple of nights at the Ronald McDonald House and a couple with our friend Scott. I suspect both of us will be crashing his pad more than once as we try to split our time between our two beautiful babies. I spent the week working, visiting Penny and somehow squeezing trips to Chapel Hill into the equation.
So yeah. It's been nuts. We have some serious decisions to make as to where our babies should be and how we are going to manage all this. I'm sure it will become clear in due time.
After Ollie, we really had hoped to be the folks helping others rather than being helped. Never did we anticipate we'd be receiving kindness from so many, so soon. To everyone that has been helping out and checking in and just generally being useful: Thank You. From the bottoms of our hearts. Thanks Amanda M. for coordinating so many people and being the usual kind and caring person that you are. Thanks Amanda H. for coming down and helping us during this wacky week (love ya sis!). Many thanks for everyone trying to bring or provide meals - we have been here with such randomness that we've had to postpone many of them but I know we are going to need them and will enjoy them in the future. Finally, a big (40 gallon?) bag of gratitude for Lisa and Jenny for taming the lawn monster. Being away from home and getting 3 inches of rain had sorta turned the yard into a small pasture. Hopefully I can keep it under control now!
And now what you really tuned in for:
Penny continues to be a little rock star. She is doing well on Vapotherm and the nurses bump her oxygen up and down depending on how she is doing sat wise (and whether she is on her back or tummy - she really loves her tummy). She is tolerating feeds with no residuals and is now up to 17ml every 3 hours. Thanks to this eating regimen, she has managed to get up to 860g (1lb 14oz). She had been experiencing a bit of tachycardia this week so they decided to take her off caffeine to see how she responded. She responded by not only lowering her heart rate but by having almost no bradycardia episodes. It's pretty amazing for a 29 weeker to be off the juice, but she is.
Isaak continues to be a strong little fella. He has a long road ahead of him, but for now the doctors are astounded at how well he is doing recovering from the trauma of surgery. He really had been starting to turn a corner before the NEC set in and I think he just resumed that path afterwards. We won't have any idea on his long term prognosis for weeks yet, but in the short term he is a model patient. Of course, he is being fed exclusively intravenously right now, but has still managed to gain weight and is currently at 960g (2lb 2oz).
That's all for now. We'll have more updates this weekend and hopefully I'll have the time to get some new pictures up.
So yeah. It's been nuts. We have some serious decisions to make as to where our babies should be and how we are going to manage all this. I'm sure it will become clear in due time.
After Ollie, we really had hoped to be the folks helping others rather than being helped. Never did we anticipate we'd be receiving kindness from so many, so soon. To everyone that has been helping out and checking in and just generally being useful: Thank You. From the bottoms of our hearts. Thanks Amanda M. for coordinating so many people and being the usual kind and caring person that you are. Thanks Amanda H. for coming down and helping us during this wacky week (love ya sis!). Many thanks for everyone trying to bring or provide meals - we have been here with such randomness that we've had to postpone many of them but I know we are going to need them and will enjoy them in the future. Finally, a big (40 gallon?) bag of gratitude for Lisa and Jenny for taming the lawn monster. Being away from home and getting 3 inches of rain had sorta turned the yard into a small pasture. Hopefully I can keep it under control now!
And now what you really tuned in for:
Penny continues to be a little rock star. She is doing well on Vapotherm and the nurses bump her oxygen up and down depending on how she is doing sat wise (and whether she is on her back or tummy - she really loves her tummy). She is tolerating feeds with no residuals and is now up to 17ml every 3 hours. Thanks to this eating regimen, she has managed to get up to 860g (1lb 14oz). She had been experiencing a bit of tachycardia this week so they decided to take her off caffeine to see how she responded. She responded by not only lowering her heart rate but by having almost no bradycardia episodes. It's pretty amazing for a 29 weeker to be off the juice, but she is.
Isaak continues to be a strong little fella. He has a long road ahead of him, but for now the doctors are astounded at how well he is doing recovering from the trauma of surgery. He really had been starting to turn a corner before the NEC set in and I think he just resumed that path afterwards. We won't have any idea on his long term prognosis for weeks yet, but in the short term he is a model patient. Of course, he is being fed exclusively intravenously right now, but has still managed to gain weight and is currently at 960g (2lb 2oz).
That's all for now. We'll have more updates this weekend and hopefully I'll have the time to get some new pictures up.
Monday, May 24, 2010
Penny's Moved and Isaak's Improved
Things are starting to look up for Isaak. His respiratory status is improving hourly. They keep weaning him slowly from the ventilator and hope to extubate him soon. He'll go back to bubble CPAP. His pain medication is also being weaned and that will likely help with extubation as many pain meds are respiratory depressants. They put a new PICC line in so that he can get more dextrose to plump him up. (Currently, he weighs in at 940g.) And he's making lots of wet diapers - another good sign. He's still receiving antibiotics and IV nutrition.
Neil visited Penelope on Sunday and her big news is that she's moved to an "intermediate" nursery since she is doing so well. Her apnea and bradycardia episodes are minimal and largely all self-resolved. She is still on Vapotherm and her rate was lowered from 3 liters to 2.5 liters. Her weight is up to 780g (which is what Isaak weighed at birth).
That's all for now, but hopefully there will be more good news to come. We still have a long road ahead of us. There's a lot of uncertainty especially where Isaak is concerned. So please continue to keep us in your thoughts and prayers.
Neil visited Penelope on Sunday and her big news is that she's moved to an "intermediate" nursery since she is doing so well. Her apnea and bradycardia episodes are minimal and largely all self-resolved. She is still on Vapotherm and her rate was lowered from 3 liters to 2.5 liters. Her weight is up to 780g (which is what Isaak weighed at birth).
That's all for now, but hopefully there will be more good news to come. We still have a long road ahead of us. There's a lot of uncertainty especially where Isaak is concerned. So please continue to keep us in your thoughts and prayers.
Monday, May 17, 2010
Just a Tiny Update
Hehe. OK, so both of the little guys had a great day. Penelope is now on a device called a Vapotherm. It's essentially a heated and thoroughly humidified oxygen feed through a tiny nasal cannula. Frankly, that is absolutely amazing. She may very well wind up back on the CPAP but in the meantime she is enjoying a bit of time with a lot less bulk on her head. You can actually see her little face all the time now.
Isaak had a followup echocardiogram this evening to examine his Patent Ductus Arteriosus. The results reveal that he still has a small PDA. Yep, small. Previously it was classified as large so this is definite improvement. Little guy does not have any of the most concerning symptoms so the plan is to observe him and hope that A) It does not grow and B) It heals on its own. If symptoms worsen, the possibilities include another round of neoprofen treatment or, as mentioned before, surgery. He is still on SiPAP but is doing very well and is pretty much staying on room air concentrations. The transfusion really did wonders for these little guys. They will probably need another in a week or two, but it's really nice to visit them and not have constant monitor alarms going off.
Both babies are back on breast milk. Penny is up to 14ml and they have doubled the HMF in her feeds. This provides extra vitamins and calories and hopefully will spur additional weight gain. Isaak was already back up to 7ml this evening (remember that stopped his feeds for the neoprofen dosing) and will likely be bumped again tomorrow.
Isaak had a followup echocardiogram this evening to examine his Patent Ductus Arteriosus. The results reveal that he still has a small PDA. Yep, small. Previously it was classified as large so this is definite improvement. Little guy does not have any of the most concerning symptoms so the plan is to observe him and hope that A) It does not grow and B) It heals on its own. If symptoms worsen, the possibilities include another round of neoprofen treatment or, as mentioned before, surgery. He is still on SiPAP but is doing very well and is pretty much staying on room air concentrations. The transfusion really did wonders for these little guys. They will probably need another in a week or two, but it's really nice to visit them and not have constant monitor alarms going off.
Both babies are back on breast milk. Penny is up to 14ml and they have doubled the HMF in her feeds. This provides extra vitamins and calories and hopefully will spur additional weight gain. Isaak was already back up to 7ml this evening (remember that stopped his feeds for the neoprofen dosing) and will likely be bumped again tomorrow.
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