When last we left our intrepid band of preemies, Penny had been discharged but Isaak was having complications and was getting all kinds of workups for infections. I'm happy to report that (as daddy suspected) he appears to have just been very cold. Nothing has grown in any of the cultures, including the lumbar puncture. They will continue to watch the cultures, but so far nada. Now, it's not good that he gets cold so easily and we have no idea why he is having so much trouble regulating his temperature, other than because he's a preemie. It's concerning, but all we can do is keep him well wrapped and check his temp more frequently to avoid a recurrence and hope he grows out of it as he gets bigger.
Today was exciting as he's hit 10ml per hour via g-tube feeds. He has started pooping, but no signs of "dumping" yet. What might be the difference between pooping and dumping, one might logically ask? "Dumping" in this context means that very little of the oral/g-tube intake is being processed. It's essentially shooting straight through the GI tract. What's worse, it may actually pull additional fluid out. So maybe you had an intake of 10ml per hour, but are outputting 15ml per hour. That is not a good scenario and is one of the more common issues with short-gut patients. The challenge is finding that upper limit.
10ml was the main target so that he would be getting the majority of his nutrition and fluids enterally rather than via TPN. Right now, due to reduced fluid intake, he's getting over 70% of his feeds as breast milk. That is good for Isaak and very very good for his liver. His bilirubin counts have gradually begun to drop as he's getting less TPN. As he gains weight, the TPN percentage will go up a bit as his digestive system might not be able to tolerate significant increases in volume just yet. If we can keep him over 50% oral/g-tube intake, he'll be in a good place.
Little guy is still having problems with edema (thus the reduced fluid intake) and started a second 3-day course of Lasix yesterday morning. He was looking quite good in the evening and appears to be excreting a bit more so there is hope he will begin regulating his own fluids shortly. It's not uncommon for preemies to have issues with edema, nor is it uncommon for anyone that has had abdominal/GI surgery - so Isaak is experiencing the old double whammy.
Hopefully, control of his fluid levels will also help his other remaining issue - oxygen addiction - he loves the wall juice. What's weird is how little he is actually getting. They have him on a flow rate of 0.05 lpm - an absurdly low number - but if they try to drop to 0.025 lpm, he starts desatting. It really is crazy. Part of this may be an issue with hematocrit. His numbers are dropping again and they are doing a blood count, including reticulocytes, to see if he is making a reasonable number of blood cells. If he is, the question then becomes: What is eating the mature cells? Why isn't he having a net gain? It may (hopefully is) just be something he has to mature past and only time will take care of that.
So on to Miss Penelope!
How is it having a baby in the house again? FANTASTIC (and exhausting). I don't think Bekka and I will be used to just picking her up and squeezing her (gently) anytime we want for weeks yet. After watching her grow from that tiny little newborn to her current petite, but relatively huge size, and only seeing her for a few hours a day, it's wonderful to have her there all the time. We have discovered that if we want to get any sleep at night, we have to feed her a big bottle of mom's milk fortified with extra calories from formula. Otherwise, she wants to feed about every 2 hours and that is tough on mom and dad. Nursing is hard work for babies, and while she is good at it, she just can't get as much food that way before she's tuckered out as she can with a bottle. With time, she'll get better and better at nursing.
That's all for now.
Showing posts with label Hematocrit. Show all posts
Showing posts with label Hematocrit. Show all posts
Tuesday, July 27, 2010
Sunday, June 27, 2010
8 Weeks, 2 Days and Growing Like Weeds
Well, it's been almost a week since the last post, so I figure the twins' adoring public deserves another update. Overall, it's a happy thing we haven't posted as the news is almost all positive. So the old "no news is good news" adage applies here. Mostly, I figure you want more pictures, and we have those right here!
Isaak finished up his course of Epogen this week, and boy what a difference it made. He had been doing quite well from a respiratory standpoint but began showing signs of breathing difficulties before they started the treatment. He was also pale as a ghost. They didn't want to transfuse because of the various risks associated with the procedure. Almost as importantly, severe anemia tends to jump start red blood cell production and a transfusion can stop that process cold. They began the Epogen course and hoped that it would kick in before a transfusion was absolutely required. It appears to have worked. They won't do another reticulocyte or hematocrit count for a couple of days, but visually, he is like a different baby. He spends most of his time at room air concentrations with about 2 lpm of flow. With luck, they will begin turning down his flow a little bit at a time.
The biggest concern with Isaak has really been his weight gain (or lack thereof). He has been getting a mix of oral and IV nutrition but had nearly stopped gaining weight. You could see that he was longer, but just wasn't getting much heavier. Each time he would gain a few ounces, he'd give back half of that in a couple days. This was likely caused by a combination of the "dumping" he was experiencing from his ostomy and possibly the anemia (the body has to work harder to cover for the low hematocrit). Even after the dumping improved dramatically he still wasn't gaining as quickly as needed to hit his targets in preparation for the surgery on July 13. Remember, they really want him at or as close to 2kg (4lb 6.5oz) as possible. The doctors and NPs spent quite a lot of time brainstorming over the weekend and made several adjustments including lowering his oral intake to allow for increased TPN.
It appears to have worked like a charm.
Little guy has gone from 1500g (3lb 5oz) two days ago to 1720g (3lb 13oz) tonight. His ostomy output is now very, very good. After the first night of gain, we all held our breath as we were afraid it was a fluke, but it's occurred two nights in a row. He's not puffy at all so no one thinks it's just water weight. The TPN is doing it's job right now, but of course, we hope that once his ostomy is repaired, they will be able to dramatically reduce the TPN quantity. There are many complications resulting from extended use of parenteral nutrition. The good news for him is that getting any oral food at all has been shown to have a really good protective effect on the liver and other organs.
Penny's biggest challenge has certainly not been gaining weight. The little piglet (or piglette, as her mama likes to call her) is now getting 38ml of breast milk per feed and weighed in at 1841g (4lbs 1oz) tonight! Her primary issue has been breathing. She'd been outpacing Isaak for so long, but took a slide early in the week. They ended up bumping her flow to 2 lpm (from 1 lpm a couple of weeks ago). The concern was that even at the increased flow rate, she was still needing between 28 and 30% oxygen. That is not a particularly high concentration, but we really want to be weaning them off all respiratory support. The solution was a dose of Lasix. She had begun to look puffy and edema can cause major issues with breathing since the lungs are one of the first places that fluid tends to go. After the dose, she lost almost 100g in water weight and then proceeded to get right back on track with what looks like real, solid gains.
Oh, I almost forgot, if you haven't cheated and looked at the pictures first, Penny is in a big girl crib! No more isolette for her. They began having a hard time keeping her cool enough so early Sunday morning she got a bed change. If Isaak gets a little bigger and demonstrates he can also regulate his body temp, he'll join her soon (literally, the little guys will be hanging out in the same spot for the first time since they were born).
Isaak finished up his course of Epogen this week, and boy what a difference it made. He had been doing quite well from a respiratory standpoint but began showing signs of breathing difficulties before they started the treatment. He was also pale as a ghost. They didn't want to transfuse because of the various risks associated with the procedure. Almost as importantly, severe anemia tends to jump start red blood cell production and a transfusion can stop that process cold. They began the Epogen course and hoped that it would kick in before a transfusion was absolutely required. It appears to have worked. They won't do another reticulocyte or hematocrit count for a couple of days, but visually, he is like a different baby. He spends most of his time at room air concentrations with about 2 lpm of flow. With luck, they will begin turning down his flow a little bit at a time.
The biggest concern with Isaak has really been his weight gain (or lack thereof). He has been getting a mix of oral and IV nutrition but had nearly stopped gaining weight. You could see that he was longer, but just wasn't getting much heavier. Each time he would gain a few ounces, he'd give back half of that in a couple days. This was likely caused by a combination of the "dumping" he was experiencing from his ostomy and possibly the anemia (the body has to work harder to cover for the low hematocrit). Even after the dumping improved dramatically he still wasn't gaining as quickly as needed to hit his targets in preparation for the surgery on July 13. Remember, they really want him at or as close to 2kg (4lb 6.5oz) as possible. The doctors and NPs spent quite a lot of time brainstorming over the weekend and made several adjustments including lowering his oral intake to allow for increased TPN.
It appears to have worked like a charm.
Little guy has gone from 1500g (3lb 5oz) two days ago to 1720g (3lb 13oz) tonight. His ostomy output is now very, very good. After the first night of gain, we all held our breath as we were afraid it was a fluke, but it's occurred two nights in a row. He's not puffy at all so no one thinks it's just water weight. The TPN is doing it's job right now, but of course, we hope that once his ostomy is repaired, they will be able to dramatically reduce the TPN quantity. There are many complications resulting from extended use of parenteral nutrition. The good news for him is that getting any oral food at all has been shown to have a really good protective effect on the liver and other organs.
Penny's biggest challenge has certainly not been gaining weight. The little piglet (or piglette, as her mama likes to call her) is now getting 38ml of breast milk per feed and weighed in at 1841g (4lbs 1oz) tonight! Her primary issue has been breathing. She'd been outpacing Isaak for so long, but took a slide early in the week. They ended up bumping her flow to 2 lpm (from 1 lpm a couple of weeks ago). The concern was that even at the increased flow rate, she was still needing between 28 and 30% oxygen. That is not a particularly high concentration, but we really want to be weaning them off all respiratory support. The solution was a dose of Lasix. She had begun to look puffy and edema can cause major issues with breathing since the lungs are one of the first places that fluid tends to go. After the dose, she lost almost 100g in water weight and then proceeded to get right back on track with what looks like real, solid gains.
Oh, I almost forgot, if you haven't cheated and looked at the pictures first, Penny is in a big girl crib! No more isolette for her. They began having a hard time keeping her cool enough so early Sunday morning she got a bed change. If Isaak gets a little bigger and demonstrates he can also regulate his body temp, he'll join her soon (literally, the little guys will be hanging out in the same spot for the first time since they were born).
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.
Subscribe to:
Posts (Atom)
Posts
