...and Isaak is on his way to get his stoma closed. Finally.
His surgery is scheduled for ~7am and Bekka and Isaak are supposed to be at UNC by 6:30. Our wonderful, fantastic, incredible, (for)giving friend Cathy is baby sitting Penny, as I have a work engagement. Unbeknownst to Cathy until this afternoon, I have to be at work at 7am. Which means she has to be here by 6:30. Normally, 8am suffices, but not today.
Thank you! Your diet Cokes have chilled overnight in the fridge.
As to the actual procedure, we are ecstatic this is finally happening. As excited as we were by the incredible symbol of Isaak's improving health having his g-tube removal was - we would rather that sucker had stayed in. 2 1/2 weeks of constant gauze/maxi/tape/duoderm to no apparent effect on his stoma site has been frustrating and worrisome. A couple of quick stitches tomorrow should make this a fading memory and will be one more step towards a "normal" life for a special little boy and his worn-out parents.
Showing posts with label UNC. Show all posts
Showing posts with label UNC. Show all posts
Thursday, April 14, 2011
Thursday, March 31, 2011
Ding-Dong, the G-Tube's Gone!
Yes. Yes. You aren't seeing things - this *is* the third post in March.
Oh, you meant the headline? (Of course you did!)
This was a potentially life-altering week for Isaak. On Monday, Bekka took him to UNC for what we thought was going to be a pre-op appointment with the surgeon to schedule removal of the g-tube and closure of the stoma. Previously, there was evidence that the gastric mucosa (stomach lining, basically) was growing up and out of the stoma site. On this visit, they decided it wasn't and went ahead and pulled the tube!
This was/is very exciting.
It's also very messy.
You see, the closure process basically involves letting the stoma close on its own, much like an earring hole. During this process, Isaak still has to eat and drink...and this has a disturbingly frequent tendency to result in a mess. Daddy came up with a method to help control the mess - maxi pads taped to his stomach - but it's by no means 100% effective. We still get milk geysers when changing the dressing once in awhile...
The stoma site is slowly closing and already looks much better. It is supposed to close in 2-3 weeks (!?!). Sometimes we think doctors don't quite know what we have to deal with at home...
In other news, we had a visit at Duke Eye Center last week. This visit was not nearly as exciting as the UNC visit because the news was not all good. Isaak's right eye still looks great, but the left has developed new issues. There is a bit of new bleeding and also some sort of lipid deposits around the macula. To add to the concern, the pressure is elevated in the eye whereas it had previously been fine. Sooooo....we have another appointment at Duke on April 11 to reevaluate the pressure levels and sometime soon after Isaak will have yet another exam under anesthesia. It's possible (possibly even likely) that Isaak will require further surgical intervention in the eye. We certainly hope not, but we'll go with it day by day.
In the meantime, this is the first time we've had a cordless little boy since Ollie was 7 months old. This is significant for us on so many levels. It really hasn't fully sunk in yet and probably won't until we no longer have to have bandages/maxi-pads on his tummy.
There is so much more to discuss regarding their development and new-found ability to say dadadadadadadadadee, but that will have to wait for another post - perhaps the post that will have the epic video of attempted green bean feeding. (Hint: it did not go well)
I can leave you with a few numbers this evening: Both kids are basically 28 inches long. Penny weighs a tick over 21lbs and Isaak a little over 20. Such a long, long way from 1lb 7 and 1lb 11 and under a foot long.
What is amazing is how deep they both are into the "normal" baby growth curve. Penny is sitting right at the 50th percentile while Isaak is around the 25th. If you adjust for their prematurity, Penny is over 90% and Isaak over 50. Amazing little guys.
Oh, you meant the headline? (Of course you did!)
This was a potentially life-altering week for Isaak. On Monday, Bekka took him to UNC for what we thought was going to be a pre-op appointment with the surgeon to schedule removal of the g-tube and closure of the stoma. Previously, there was evidence that the gastric mucosa (stomach lining, basically) was growing up and out of the stoma site. On this visit, they decided it wasn't and went ahead and pulled the tube!
This was/is very exciting.
It's also very messy.
You see, the closure process basically involves letting the stoma close on its own, much like an earring hole. During this process, Isaak still has to eat and drink...and this has a disturbingly frequent tendency to result in a mess. Daddy came up with a method to help control the mess - maxi pads taped to his stomach - but it's by no means 100% effective. We still get milk geysers when changing the dressing once in awhile...
The stoma site is slowly closing and already looks much better. It is supposed to close in 2-3 weeks (!?!). Sometimes we think doctors don't quite know what we have to deal with at home...
In other news, we had a visit at Duke Eye Center last week. This visit was not nearly as exciting as the UNC visit because the news was not all good. Isaak's right eye still looks great, but the left has developed new issues. There is a bit of new bleeding and also some sort of lipid deposits around the macula. To add to the concern, the pressure is elevated in the eye whereas it had previously been fine. Sooooo....we have another appointment at Duke on April 11 to reevaluate the pressure levels and sometime soon after Isaak will have yet another exam under anesthesia. It's possible (possibly even likely) that Isaak will require further surgical intervention in the eye. We certainly hope not, but we'll go with it day by day.
In the meantime, this is the first time we've had a cordless little boy since Ollie was 7 months old. This is significant for us on so many levels. It really hasn't fully sunk in yet and probably won't until we no longer have to have bandages/maxi-pads on his tummy.
There is so much more to discuss regarding their development and new-found ability to say dadadadadadadadadee, but that will have to wait for another post - perhaps the post that will have the epic video of attempted green bean feeding. (Hint: it did not go well)
I can leave you with a few numbers this evening: Both kids are basically 28 inches long. Penny weighs a tick over 21lbs and Isaak a little over 20. Such a long, long way from 1lb 7 and 1lb 11 and under a foot long.
What is amazing is how deep they both are into the "normal" baby growth curve. Penny is sitting right at the 50th percentile while Isaak is around the 25th. If you adjust for their prematurity, Penny is over 90% and Isaak over 50. Amazing little guys.
Wednesday, August 18, 2010
Sound Medical Advice (and an update on the Twins)
First, to get this out of the way:
So now you know! And catheter safety is paramount (really).
One of the biggest risks with a central line is infection and another risk is some sort of trauma caused by tugging or moving the catheter. But just wow! I suppose these videos are geared for kids and their parents and not so much little ones, but now Bekka and I can better resist the temptation to start jumping rope once we get him home.
Now on to the babies:
Isaak is doing pretty darn well. Some of you may have been updated via other means that Isaak was moved to a regular pediatric room last Wednesday. The way it happened was...interesting. We'd been debating making the move for a few days, a new attending came on in the NICU and pretty quickly decided that Isaak really should go to the floor. He no longer has preemie problems (save for a bit of anemia) and the doc had decided that the GI folks could better handle the feed situation. We did not disagree.
Anyway, on Wednesday, Bekka decided to take a day off from the environs of the NICU as she knew Isaak would be well cared for by all the nurses. She'd been told it would be "2 or 3 days" before a room would open up on the regular pediatric floor. That was the status at 3pm on 8/11. At 6, she gets a call that says "we will be moving him in a hour". So not only do we get to hurry to the hospital, we have to pack for Bekka to spend some time there. So we did. We finally made it to the hospital to find him zonked out in the bed and sucking merrily on his paci. That was a hectic evening.
Ever since, he's been ensconced on the 6th floor of the North Carolina Children's Hospital under the watchful eyes of his mommy. Little sister has been there with them every night save one, when daddy and Nana and Papaw brought her home so mommy could sleep without having baby grunting in stereo running all night long. (Apparently it's tiring. Who knew?)
Medically he seems to be rapidly improving since Friday. He was on 10ml per hour via g-tube for a week as they monitored the level of "reducing substance" in his stool. (Poop. You KNEW there was going to be poop, right?). This test measures the body's ability to absorb sugar in the intestinal tract and is an important indicator of bowel function. For several days, he was running high values (0.5 or greater g/dL). Yesterday, he finally dropped down to 0.25. Now, this doesn't mean that he wasn't processing fats and proteins, just sugars but it's a good test looking at how things are going. Since he hit 0.25 for 2 days in a row, on Monday they upped him to 12ml/hr of 50% milk and 50% Elecare (an elemental formula). If he has a good test tomorrow, he will likely get bumped to 13. They left his TPN where it is so he could get a few more fluids.
He's gaining weight well at roughly an ounce a day, and that's a good indicator he is also getting nutrition from the g-tube feeds. If he wasn't absorbing something, the TPN doesn't have enough calories to keep him growing. Do we think he'll be off TPN before coming home? Probably not. We are at the point though where we'd like to get our little guy to the home and used to be being in a non-hospital environment. He would likely be looking at many months before getting to strictly oral feeds, but you never know. The next big step for him will be trying small bolus feeds, both via g-tube and orally. Ideally, when he comes home, we'd be able to feed him orally during the day and then have g-tube feeds overnight.
His poop is looking better, too. A little color has started showing up in it and that corresponds with a sudden change in his overall color. He's still jaundiced, but the change from Friday to Saturday was pretty stunning. Apparently, much of the color in poop is the body ridding itself of bilirubin (I did not know that) and we hope that his body has decided to get better at doing just that. The TPN is still not good for his liver, but he'll be so much better off if he can dump the bili.
In other news, Isaak's edema seems to have completely disappeared. Much like Penny, he just started peeing a couple of weeks ago and hasn't stopped. This is excellent since he has the IV in all the time. He also appears to be working through the anemia (At last! We hope.) His last hematocrit was only 0.1 lower than the previous (so effectively the same). Hopefully his next will trend higher. Also, his eye exams are starting to look gradually better. The left eye is still the most concerning, partly because there is a hemorrhage concealing the retina in a couple of places. Hopefully that clears up more this week so they can confirm that the eye is still maturing.
Penny has been her usual rambunctious self. We'd like her to be gaining weight a bit faster, so we have just upped the quantity she is getting in her bottles to almost 3 oz. She gets 3 of these a day, all fortified with formula to 24 calorie. Bekka also reports that she is getting better and better at nursing. We have to remind ourselves that these little guys have to practice and get stronger and that they were only due last week! Her only other issue is a worsening of the RoP in her right eye. It's a little unusual for that to be happening at this age and stage of development so she'll be back next week for another checkup. Hopefully nothing to worry about but it's important to stay on top of that issue.
I think Bekka and I are mostly staying sane. She's spending all her time at the hospital save for Penny's appointments and when I spirit her away to escape for a bit. It's very challenging taking care of two babies but there is something to be said for not having to drive back and forth to the hospital every day and getting to stay in the same space at night.
In a complete aside, did you know that at the state's preeminent public hospital (PUBLIC), patients have to pay $8 a day to park. WakeMed was FREE for patients and Duke was only $2 a day when we were there with Ollie. Just amazing. They have their excuses and they all suck. I can only imagine how many patients can't actually afford that. Serving the state well there Carolina...
So now you know! And catheter safety is paramount (really).
One of the biggest risks with a central line is infection and another risk is some sort of trauma caused by tugging or moving the catheter. But just wow! I suppose these videos are geared for kids and their parents and not so much little ones, but now Bekka and I can better resist the temptation to start jumping rope once we get him home.
Now on to the babies:
Isaak is doing pretty darn well. Some of you may have been updated via other means that Isaak was moved to a regular pediatric room last Wednesday. The way it happened was...interesting. We'd been debating making the move for a few days, a new attending came on in the NICU and pretty quickly decided that Isaak really should go to the floor. He no longer has preemie problems (save for a bit of anemia) and the doc had decided that the GI folks could better handle the feed situation. We did not disagree.
Anyway, on Wednesday, Bekka decided to take a day off from the environs of the NICU as she knew Isaak would be well cared for by all the nurses. She'd been told it would be "2 or 3 days" before a room would open up on the regular pediatric floor. That was the status at 3pm on 8/11. At 6, she gets a call that says "we will be moving him in a hour". So not only do we get to hurry to the hospital, we have to pack for Bekka to spend some time there. So we did. We finally made it to the hospital to find him zonked out in the bed and sucking merrily on his paci. That was a hectic evening.
Ever since, he's been ensconced on the 6th floor of the North Carolina Children's Hospital under the watchful eyes of his mommy. Little sister has been there with them every night save one, when daddy and Nana and Papaw brought her home so mommy could sleep without having baby grunting in stereo running all night long. (Apparently it's tiring. Who knew?)
Medically he seems to be rapidly improving since Friday. He was on 10ml per hour via g-tube for a week as they monitored the level of "reducing substance" in his stool. (Poop. You KNEW there was going to be poop, right?). This test measures the body's ability to absorb sugar in the intestinal tract and is an important indicator of bowel function. For several days, he was running high values (0.5 or greater g/dL). Yesterday, he finally dropped down to 0.25. Now, this doesn't mean that he wasn't processing fats and proteins, just sugars but it's a good test looking at how things are going. Since he hit 0.25 for 2 days in a row, on Monday they upped him to 12ml/hr of 50% milk and 50% Elecare (an elemental formula). If he has a good test tomorrow, he will likely get bumped to 13. They left his TPN where it is so he could get a few more fluids.
He's gaining weight well at roughly an ounce a day, and that's a good indicator he is also getting nutrition from the g-tube feeds. If he wasn't absorbing something, the TPN doesn't have enough calories to keep him growing. Do we think he'll be off TPN before coming home? Probably not. We are at the point though where we'd like to get our little guy to the home and used to be being in a non-hospital environment. He would likely be looking at many months before getting to strictly oral feeds, but you never know. The next big step for him will be trying small bolus feeds, both via g-tube and orally. Ideally, when he comes home, we'd be able to feed him orally during the day and then have g-tube feeds overnight.
His poop is looking better, too. A little color has started showing up in it and that corresponds with a sudden change in his overall color. He's still jaundiced, but the change from Friday to Saturday was pretty stunning. Apparently, much of the color in poop is the body ridding itself of bilirubin (I did not know that) and we hope that his body has decided to get better at doing just that. The TPN is still not good for his liver, but he'll be so much better off if he can dump the bili.
In other news, Isaak's edema seems to have completely disappeared. Much like Penny, he just started peeing a couple of weeks ago and hasn't stopped. This is excellent since he has the IV in all the time. He also appears to be working through the anemia (At last! We hope.) His last hematocrit was only 0.1 lower than the previous (so effectively the same). Hopefully his next will trend higher. Also, his eye exams are starting to look gradually better. The left eye is still the most concerning, partly because there is a hemorrhage concealing the retina in a couple of places. Hopefully that clears up more this week so they can confirm that the eye is still maturing.
Penny has been her usual rambunctious self. We'd like her to be gaining weight a bit faster, so we have just upped the quantity she is getting in her bottles to almost 3 oz. She gets 3 of these a day, all fortified with formula to 24 calorie. Bekka also reports that she is getting better and better at nursing. We have to remind ourselves that these little guys have to practice and get stronger and that they were only due last week! Her only other issue is a worsening of the RoP in her right eye. It's a little unusual for that to be happening at this age and stage of development so she'll be back next week for another checkup. Hopefully nothing to worry about but it's important to stay on top of that issue.
I think Bekka and I are mostly staying sane. She's spending all her time at the hospital save for Penny's appointments and when I spirit her away to escape for a bit. It's very challenging taking care of two babies but there is something to be said for not having to drive back and forth to the hospital every day and getting to stay in the same space at night.
In a complete aside, did you know that at the state's preeminent public hospital (PUBLIC), patients have to pay $8 a day to park. WakeMed was FREE for patients and Duke was only $2 a day when we were there with Ollie. Just amazing. They have their excuses and they all suck. I can only imagine how many patients can't actually afford that. Serving the state well there Carolina...
Tuesday, August 10, 2010
There is a reason for cautious optimism in our posts! Also: Warning, poop ahead!
So, the day *after* the big update regarding Isaak and all his good news, he decides to have the predicted setback in his feeding progress. When we were visiting on Sunday, he had a little spit up (completely new event) and also a big poopy diaper that was much looser than they had been. (Sorry, poop is the topic of conversation of lots of baby parents, but especially ours ;)
On Monday, he had an even bigger diaper that was definitely too liquid. Lab analysis indicated that he was not processing carbohydrates well at all. This is where you have to step back, retrench and re-evaluate.
The docs immediately dropped his oral feeds down to 10ml/hr (from 16). He will resume TPN (grrr) this evening to make up for the missing calories (he was on dextrose and electrolytes overnight). We hate to see the resumption of TPN, but it's critical he get the calories to continue growing and developing in other ways right now.
The good news? He hasn't pooped since yesterday evening and this probably means the drop in volume really has helped him slow down his food transit time. Sometime in the next couple of days, they will run labs on his stool again to make sure everything is OK and he is processing well. Also, his electrolytes and glucose still looked good. If a baby is truly "dumping", those usually get out of whack really fast. It's great that he's still able to get a fairly substantial amount of enteral feeds as that is so so important to intestinal development and growth.
Over the next few days, they will begin increasing his feeds again and we'll see how far he gets this time. I suspect things will go a little bit slower and more cautiously. We absolutely want to maximize the amount of enteral feeding he gets so we can minimize TPN, but we also have to keep him growing and developing. There is a good chance they will also begin increasing the percentage of his feeds that are based on an elemental formula (say 50/50 formula and breast milk) as those are often more readily absorbed.
That's it for now.
On Monday, he had an even bigger diaper that was definitely too liquid. Lab analysis indicated that he was not processing carbohydrates well at all. This is where you have to step back, retrench and re-evaluate.
The docs immediately dropped his oral feeds down to 10ml/hr (from 16). He will resume TPN (grrr) this evening to make up for the missing calories (he was on dextrose and electrolytes overnight). We hate to see the resumption of TPN, but it's critical he get the calories to continue growing and developing in other ways right now.
The good news? He hasn't pooped since yesterday evening and this probably means the drop in volume really has helped him slow down his food transit time. Sometime in the next couple of days, they will run labs on his stool again to make sure everything is OK and he is processing well. Also, his electrolytes and glucose still looked good. If a baby is truly "dumping", those usually get out of whack really fast. It's great that he's still able to get a fairly substantial amount of enteral feeds as that is so so important to intestinal development and growth.
Over the next few days, they will begin increasing his feeds again and we'll see how far he gets this time. I suspect things will go a little bit slower and more cautiously. We absolutely want to maximize the amount of enteral feeding he gets so we can minimize TPN, but we also have to keep him growing and developing. There is a good chance they will also begin increasing the percentage of his feeds that are based on an elemental formula (say 50/50 formula and breast milk) as those are often more readily absorbed.
That's it for now.
Sunday, August 8, 2010
Isaak's big Update
I'm going to try to make this relatively short. Isaak is doing great this week. Fantastic even.
Early in the week they made another effort to get him off supplemental oxygen, and so far, 5 days later, he's been a little champ.
First off, new pictures: Here and There
Now on to the update.
Here's a bulleted list of Isaak info:
Early in the week they made another effort to get him off supplemental oxygen, and so far, 5 days later, he's been a little champ.
First off, new pictures: Here and There
Now on to the update.
Here's a bulleted list of Isaak info:
- Now weighs 7lbs 5oz.
- Off oxygen
- Still anemic but his reticulocyte count is improving. There is still a chance he will need a transfusion again and they'll be checking his blood-work again in a couple of days. Hopefully he's bottomed out on the anemia and will show signs of improvement. This makes the fact he's not using oxygen all the more remarkable.
- Off IV nutrition (TPN) for now. He's tolerating g-tube feeds really well and if he gets up a couple of more notches, there is a chance he will not need to go back on TPN.
- RoP has improved quite a bit. Ophthalmologist was optimistic after the exam on Friday. His eyes have begun maturing and the hemorrhages that were present have begun shrinking. By no means is he out of the woods, but it surely is looking better (no pun intended there).
- We might move him to a regular pediatric ward. He doesn't really have any preemie problems right now (apneas and bradys) and Bekka could room-in with him and bring Penny along. Of course, there is a big safety net in the NICU if something suddenly occurs, so it's not an easy decision.
- Moving to a regular floor was definitely the plan when we were positive he was coming home on TPN. He would need to be on GI service so we could get TPN training and get his mixture calibrated. Staying there may still help the GI folks assist us in getting him used to bolus feeding (and he might also need TPN if he has any problems over the next few days).
If he really doesn't come home with TPN (double yay!), he will hopefully be getting bolus feeds (bottles and nursing) during the day and then continuous feeds overnight. This will help make sure his system isn't overwhelmed and that he gets enough calories and nutrients. Again, a lot is still up in the air. He is doing significantly better than anyone expected at this point and some small setbacks are to be expected but he is a tough little hombre.
Not that much to report on Penny. She continues to light up her parents' days and is now up to a whopping 6lbs 4oz. Tiny, but much bigger than she was. Big enough for a regular car seat even! We don't have length measurements on either of these little tykes. We'll try to get those soon. She's a spunky little girl (hmm, wonder where that comes from?) and seems to have inherited her mom's sleeping patterns.
Tuesday, July 27, 2010
A Weekend with Penny and an Update on Isaak
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.
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.
Saturday, July 24, 2010
Penny goes Home! (and Isaak has a scare)
In the biggest news of their short lives so far, one of the little monkeys has made it home. Penny decided a couple of weeks ago that, yes, she was about ready to go and pulled her own oxygen off. It took a bit to get her to completely oral feeds, but she got there this week. Mom roomed in with her a couple of nights and all went well, so here we are. Her first night was a little challenging as she decided to wake up a couple of times - and apparently has learned to cry finally. Mommy and I are a little tired but very happy (nay ECSTATIC) to have our little girl at home.
Proof is in the pictures!
Thanks to Amanda M. for getting the great pictures at UNC. We silly people had forgotten our camera. You will note in the pictures that her first outside world stop was the cafeteria at UNC - we didn't quite get to leave when we wanted as little brother decided drama was in order (maybe to keep his twin nearby?)
So Isaak...he had a rough evening yesterday. In the late afternoon, probably around 5, I noticed that his heart rate was really low. It often goes low when he's sleeping, but this was around 130 rather than the 140 that is normal. I mentioned it to the nurse and she immediately took his temperature and it was way too cool. He also wasn't really moving much at all. Next thing I know, there were 6 nurses, nurse practitioners and doctors in the room, all while I was standing there holding Penny. Poor mommy wasn't there because she was getting Penny's car bed ready out in the parking deck (little girl is not quite ready for a seat) so I had to text her what was going on.
First order of business was a warmer to get his temp back up and then they took a bunch of cultures looking for infection. We won't know anything about that for 3-5 days. Unfortunately for the little guy, one of the cultures they decided to take was via lumbar puncture. We weren't terribly keen on that particular procedure, but the docs indicated that one infection that can cause a temp drop rather than a fever is meningitis and that we would want to catch that right now rather than wait. One of the other infections that can cause a drop is sepsis, so that's just scary as crap all the way around.
On the positive side, he either responded well to the antibiotics or to the warmer and by the time we left (11pm - 8 1/2 hours after Penny's "discharge") he was acting much better. He was wiggly and vocalizing so we are crossing our fingers this is just a blip.
We haven't been to see him yet today, but the nurse reports that he is pretty active this morning and was fighting back during assessment. That's a good sign. Let me tell you, this whole thing points out how important it is for a parent to know their child's normal behavior, even at this early age.
Proof is in the pictures!
Thanks to Amanda M. for getting the great pictures at UNC. We silly people had forgotten our camera. You will note in the pictures that her first outside world stop was the cafeteria at UNC - we didn't quite get to leave when we wanted as little brother decided drama was in order (maybe to keep his twin nearby?)
So Isaak...he had a rough evening yesterday. In the late afternoon, probably around 5, I noticed that his heart rate was really low. It often goes low when he's sleeping, but this was around 130 rather than the 140 that is normal. I mentioned it to the nurse and she immediately took his temperature and it was way too cool. He also wasn't really moving much at all. Next thing I know, there were 6 nurses, nurse practitioners and doctors in the room, all while I was standing there holding Penny. Poor mommy wasn't there because she was getting Penny's car bed ready out in the parking deck (little girl is not quite ready for a seat) so I had to text her what was going on.
First order of business was a warmer to get his temp back up and then they took a bunch of cultures looking for infection. We won't know anything about that for 3-5 days. Unfortunately for the little guy, one of the cultures they decided to take was via lumbar puncture. We weren't terribly keen on that particular procedure, but the docs indicated that one infection that can cause a temp drop rather than a fever is meningitis and that we would want to catch that right now rather than wait. One of the other infections that can cause a drop is sepsis, so that's just scary as crap all the way around.
On the positive side, he either responded well to the antibiotics or to the warmer and by the time we left (11pm - 8 1/2 hours after Penny's "discharge") he was acting much better. He was wiggly and vocalizing so we are crossing our fingers this is just a blip.
We haven't been to see him yet today, but the nurse reports that he is pretty active this morning and was fighting back during assessment. That's a good sign. Let me tell you, this whole thing points out how important it is for a parent to know their child's normal behavior, even at this early age.
Monday, July 19, 2010
Exciting Day
Since we all know that the main reason ya'll check in so regularly is to see new pictures, I'll let you know that you can find some here and there. =)
(Edit: And now we have one more set. These were pictures taken almost 3 weeks ago by Nurse Katy at WakeMed when Penny and Isaak moved in together. It's amazing how cute they are and also how different they look! -Neil)
Now on to the update...
Isaak is "eating" again! His g-tube feeds began today around 11am at 2ml per hour continuously. He's been tolerating them well thus far. I think he's still feeling hungry though. Every hour or so he gets pretty riled up for around 5 minutes then settles down again. Sometimes his pacifier helps; sometimes holding him helps. Even though he's in the NICU, he is just a baby with baby needs.
Other exciting news in Isaak's world: poop! While I was changing his diaper this evening, he squirmed and grunted and pooped...right in the nice, clean, fresh diaper. But his nurse and I were so excited we just about did a jig right there. This is great and hopefully there will be more to come.
Penny is nursing well and we are having a sleep over of sorts tonight. They had parent sleep rooms on the floor with a pull out bed and spots to hook up monitors, Neopuff, suction, etc. This will allow me to nurse Penny throughout the evening and night. Eating and gaining weight are really all she needs to master in order to go home. Assuming she does well, we'll introduce her to bottles tomorrow or the next day.
That's your quick update for today. Right now Penny's grunting for me. Happiness!
(Edit: And now we have one more set. These were pictures taken almost 3 weeks ago by Nurse Katy at WakeMed when Penny and Isaak moved in together. It's amazing how cute they are and also how different they look! -Neil)
Now on to the update...
Isaak is "eating" again! His g-tube feeds began today around 11am at 2ml per hour continuously. He's been tolerating them well thus far. I think he's still feeling hungry though. Every hour or so he gets pretty riled up for around 5 minutes then settles down again. Sometimes his pacifier helps; sometimes holding him helps. Even though he's in the NICU, he is just a baby with baby needs.
Other exciting news in Isaak's world: poop! While I was changing his diaper this evening, he squirmed and grunted and pooped...right in the nice, clean, fresh diaper. But his nurse and I were so excited we just about did a jig right there. This is great and hopefully there will be more to come.
Penny is nursing well and we are having a sleep over of sorts tonight. They had parent sleep rooms on the floor with a pull out bed and spots to hook up monitors, Neopuff, suction, etc. This will allow me to nurse Penny throughout the evening and night. Eating and gaining weight are really all she needs to master in order to go home. Assuming she does well, we'll introduce her to bottles tomorrow or the next day.
That's your quick update for today. Right now Penny's grunting for me. Happiness!
Sunday, July 18, 2010
The Latest and Greatest from the Land of Light Blue
Today we have a mixed bag of news to report but overall things are going well. The only real negatives are Isaak's retention of fluid and the fact the little guy hasn't gotten to eat yet. It had really seemed that today would be the day they would resume light feeds via g-tube, but it was not to be. During his evaluation this morning, the surgeon thought he was a little too distended in the abdomen, so the little guy is still NPO. He received a dose of Lasix this evening and everyone is hoping this helps him finally get rid of the extra fluid he has carried since surgery and by extension make it more likely he eats tomorrow! The worst part for mommy and me is that he decided today was the day he would get mad when he was hungry. You can tell he is feeling much better and is more energetic. He was using this new found energy to get very angry and squall away if one did not keep the paci firmly in place. It breaks your heart, it really does.
In very positive news in Isaak's world, he spent the entire day sans supplemental oxygen. He has tried this a couple of times before but it sure seems that this attempt is more serious. It would be a big milestone if he can keep it up. His sister is entering her second week without supplemental support.
Miss Penny is doing quite well. Bekka is attempting to nurse her 2-4 times a day. She is now consistently eating more than 50% of the required feed volume with each attempt and sometimes eats the full amount. What she doesn't eat they make up for via the NG tube. This is really her last milestone. Once she is feeding exclusively by nursing and/or bottle AND gaining weight, she'll be ready to try the car seat test and hopefully begin living with mommy and daddy. Doesn't seem real in some ways. This is my 1lb 7oz girl here!
Speaking of weights, they both continue to trend up. Penny has plateaued a bit, but was at 2551g last night (no weight yet this evening for either of them). That translates to 5lb 10oz, almost 4 times her birth weight. Isaak's weight is in flux. He weighed in at 2750g last night (6lb 1oz) but that number is likely way too high due to the fluid retention. We'd really like to see him drop about 100g at tonight's assessment.
I know we haven't posted much in the way of pics lately, but we have a ton and I will try to take care of that this week. That is all to report for now. Hopefully the next time one of us posts an update, Isaak will be progressing nicely with his feeds.
In very positive news in Isaak's world, he spent the entire day sans supplemental oxygen. He has tried this a couple of times before but it sure seems that this attempt is more serious. It would be a big milestone if he can keep it up. His sister is entering her second week without supplemental support.
Miss Penny is doing quite well. Bekka is attempting to nurse her 2-4 times a day. She is now consistently eating more than 50% of the required feed volume with each attempt and sometimes eats the full amount. What she doesn't eat they make up for via the NG tube. This is really her last milestone. Once she is feeding exclusively by nursing and/or bottle AND gaining weight, she'll be ready to try the car seat test and hopefully begin living with mommy and daddy. Doesn't seem real in some ways. This is my 1lb 7oz girl here!
Speaking of weights, they both continue to trend up. Penny has plateaued a bit, but was at 2551g last night (no weight yet this evening for either of them). That translates to 5lb 10oz, almost 4 times her birth weight. Isaak's weight is in flux. He weighed in at 2750g last night (6lb 1oz) but that number is likely way too high due to the fluid retention. We'd really like to see him drop about 100g at tonight's assessment.
I know we haven't posted much in the way of pics lately, but we have a ton and I will try to take care of that this week. That is all to report for now. Hopefully the next time one of us posts an update, Isaak will be progressing nicely with his feeds.
Thursday, July 15, 2010
Penny and Isaak - Together Again (again)
No pics available, but Penny was transported to UNC this afternoon. Thanks so much to our friends at WakeMed for taking care of our little guys for so long. We wish we were able to finish our stay there, but little girl has to nurse and Isaak has to be where he is to get the GI care he needs. We had a wonderful stay and could not have asked for kinder, gentler care of both our babies and ourselves.
In big news, Isaak was successfully extubated today. He wasn't really all that happy about it and was initially on a fairly high CPAP pressure and O2 level. (Just a nasal cannula was not going to be sufficient for him given the issue he was having riding the vent). However, when the surgeon came by for a visit, he suggested they remove the vacuum tube from his esophagus and vent his stomach as needed through his g-tube.
That did two things: 1) Royally ticked him off and 2) Took a fairly large obstacle out of his throat. Since then, they have been able to gradually reduce his O2 levels. They also restarted caffeine to get him through the next few days and assist with the breathing and heart rate. We'll be watching for improvement.
Otherwise, he is doing pretty well. His abdomen is a little swollen and red, but the surgeon was not overly concerned and indicated it looked normal. After all, he's had pretty major slicing and dicing down there. Now we anxiously await the first bowel sounds so that he can begin getting limited amounts orally. He's a tough little guy.
In big news, Isaak was successfully extubated today. He wasn't really all that happy about it and was initially on a fairly high CPAP pressure and O2 level. (Just a nasal cannula was not going to be sufficient for him given the issue he was having riding the vent). However, when the surgeon came by for a visit, he suggested they remove the vacuum tube from his esophagus and vent his stomach as needed through his g-tube.
That did two things: 1) Royally ticked him off and 2) Took a fairly large obstacle out of his throat. Since then, they have been able to gradually reduce his O2 levels. They also restarted caffeine to get him through the next few days and assist with the breathing and heart rate. We'll be watching for improvement.
Otherwise, he is doing pretty well. His abdomen is a little swollen and red, but the surgeon was not overly concerned and indicated it looked normal. After all, he's had pretty major slicing and dicing down there. Now we anxiously await the first bowel sounds so that he can begin getting limited amounts orally. He's a tough little guy.
Tuesday, July 13, 2010
The only constant is change...
Isaak's surgery has been moved up. We're on our way to the hospital now. He'll likely go back around 9:30-ish.
Surgery Day is Here
Today is Isaak's big day. The little fella is scheduled for 3 surgical procedures.
Yes, it's a lot for such a tiny guy to go through but there is a reason for it all.
The reanastomosis is obviously the big one. An upper and lower GI contrast dye study was conducted today and the results were encouraging. Isaak had no visible strictures. Now the big question is will everything be healthy when they open him up. They may have to do small resections at the ends of the remaining intestinal tissue to make sure they are connecting the healthiest, most viable tissue back together.
The Broviac Catheter will allow the continuation of parenteral nutrition and is typically easier to maintain, longer lasting and with fewer infections than the PICC lines they have been using so far. It is almost certain he will need to continue parenteral nutrition for weeks to months to help him continue to grow while his gut adapts and develops.
The g-tube. That's a tough one. We really struggled with that decision as waves of memories of Ollie came crashing down with each discussion. In the end, conversations with doctors at both UNC and WakeMed helped convince us it was the best course for Isaak. With a g-tube in place, they can feed him continuously and help encourage bowel development, but without the potential negative assocations that might occur with the use of an OG or NG tube for an extended period. He'll still be able to eat orally, but they can increase the quantity and spread out the feeds using the g-tube. All in all, he should get home earlier this way and have a better outcome to boot.
If we are very lucky, the g-tube combined with oral feeds might mean he can go home sans TPN, but it's not likely. He will most likely be getting a mix of enteral and parenteral nutrition for some time to come. Gradually, his gut should adapt and he'll go off the TPN. This would be good for his liver as extended use of parenteral nutrition places a strain on multiple organs.
Surgery is scheduled between 10 and 1. Really, it's like the cable guy or something. The surgeon has several smaller cases he wants to finish up in the morning before taking on Isaak's. He'll be in good hands.
We will have a single running post tomorrow to keep the world up to speed as we know something. He was sleeping very peacefully this evening so hopefully he gets a good night's rest. Something I'm about to try to do.
Penny is doing well. We are trying to get her to UNC so Bekka can nurse. The more she can do that, the faster Penny will get home. She really is so close. She needs to desat a little less and move to completely oral feeds.
Both of the little guys seem so big now. Isaak cracked 2500g tonight (5.5 lbs) and Penny is just under 2400g (5lbs 5oz). He's 17.5 inches long and she is just over 16.5. It's amazing to look at these chunky little monkeys and think about where we were 73 days ago. We were so worried about getting him to even 1800g a few weeks ago. Those guys at WakeMed did a great job of fattening him up!
- Reanastomosis of his upper and lower intestines and repair of his ostomy
- A Broviac Catheter (smaller version of a Hickman Line).
- Placement of a g-tube, likely with a Mic-Key button
Yes, it's a lot for such a tiny guy to go through but there is a reason for it all.
The reanastomosis is obviously the big one. An upper and lower GI contrast dye study was conducted today and the results were encouraging. Isaak had no visible strictures. Now the big question is will everything be healthy when they open him up. They may have to do small resections at the ends of the remaining intestinal tissue to make sure they are connecting the healthiest, most viable tissue back together.
The Broviac Catheter will allow the continuation of parenteral nutrition and is typically easier to maintain, longer lasting and with fewer infections than the PICC lines they have been using so far. It is almost certain he will need to continue parenteral nutrition for weeks to months to help him continue to grow while his gut adapts and develops.
The g-tube. That's a tough one. We really struggled with that decision as waves of memories of Ollie came crashing down with each discussion. In the end, conversations with doctors at both UNC and WakeMed helped convince us it was the best course for Isaak. With a g-tube in place, they can feed him continuously and help encourage bowel development, but without the potential negative assocations that might occur with the use of an OG or NG tube for an extended period. He'll still be able to eat orally, but they can increase the quantity and spread out the feeds using the g-tube. All in all, he should get home earlier this way and have a better outcome to boot.
If we are very lucky, the g-tube combined with oral feeds might mean he can go home sans TPN, but it's not likely. He will most likely be getting a mix of enteral and parenteral nutrition for some time to come. Gradually, his gut should adapt and he'll go off the TPN. This would be good for his liver as extended use of parenteral nutrition places a strain on multiple organs.
Surgery is scheduled between 10 and 1. Really, it's like the cable guy or something. The surgeon has several smaller cases he wants to finish up in the morning before taking on Isaak's. He'll be in good hands.
We will have a single running post tomorrow to keep the world up to speed as we know something. He was sleeping very peacefully this evening so hopefully he gets a good night's rest. Something I'm about to try to do.
Penny is doing well. We are trying to get her to UNC so Bekka can nurse. The more she can do that, the faster Penny will get home. She really is so close. She needs to desat a little less and move to completely oral feeds.
Both of the little guys seem so big now. Isaak cracked 2500g tonight (5.5 lbs) and Penny is just under 2400g (5lbs 5oz). He's 17.5 inches long and she is just over 16.5. It's amazing to look at these chunky little monkeys and think about where we were 73 days ago. We were so worried about getting him to even 1800g a few weeks ago. Those guys at WakeMed did a great job of fattening him up!
Friday, July 9, 2010
Improvements and Departures
Well, let's start with the good news, shall we?
Isaak's transfusions helped him tremendously. His skin tone became nice and pink again. His breathing improved. His temperature and its regulation also improved. And his blood tests? They grew nothing - no bacteria and no fungus. CRP levels dropped. So they've stopped the antibiotics, antifungal and caffeine. He is on heated and humidified oxygen (at 21% or room air concentrations) at a flow rate of 1 lpm. (As Neil would say, Isaak likes the "wall juice.") He also ditched the isolette (again).
Penny remains sans respiratory support. And it is SO much easier to get her out of the crib. She has occasional desats but usually recovers quickly on her own. A few times she's been given blow-by oxygen (another phrase we learned with Ollie and had hoped never to use again.) They've slowly gotten her back to full feeds (about 45ml) - her first full feed will be given tonight at 11pm. And we've been working on breastfeeding. Each time she does better than the last time. It's not an exact science figuring out how much she's gotten, but we're fairly certain that she got about 40ml when she nursed at 5:30pm today. On the whole, though, she's doing really well.
Isaak's surgery is Tuesday. While we're excited that he's going to get reconnected, it's scary to think of him going under the knife...again. Before Isaak was back-transferred to WakeMed, the surgeon mentioned that we should think about having a g-tube put in at the same time as the reconnect. With a g-tube, Isaak could get continuous feeds overnight. (Gee, there are a couple more phrases we'd hoped to never use again.) The goal of doing continuous feeds is to maximize the adaptation of the bowels.
In preparation for his surgery date, Isaak will be transferred to UNC on Sunday. And, if there is space available, Penny will, too. We are very sad to leave our ICN family at WakeMed. This was a hard decision, but things will be stressful enough without the added stress of children in different hospitals.
Speaking of hard decisions and stressful situations...
It's coming. Ollie's first angel anniversary on August 3rd and what would have been his second birthday, August 5th. Neil and I have both been talking about where we were this time last year. July 4th of last year we were at the ER with Oliver and I had just broken both elbows. July 7th, 8th and 9th of last year we decided (again) that bipap was not for us and left the PICU at Duke. July 19th of last year we made our last trip to the ER with Ollie - we knew our time with him was growing very short. And August 3rd of last year...he was gone.
We love you, Ollie Bear! And we still miss you terribly.
Isaak's transfusions helped him tremendously. His skin tone became nice and pink again. His breathing improved. His temperature and its regulation also improved. And his blood tests? They grew nothing - no bacteria and no fungus. CRP levels dropped. So they've stopped the antibiotics, antifungal and caffeine. He is on heated and humidified oxygen (at 21% or room air concentrations) at a flow rate of 1 lpm. (As Neil would say, Isaak likes the "wall juice.") He also ditched the isolette (again).
Penny remains sans respiratory support. And it is SO much easier to get her out of the crib. She has occasional desats but usually recovers quickly on her own. A few times she's been given blow-by oxygen (another phrase we learned with Ollie and had hoped never to use again.) They've slowly gotten her back to full feeds (about 45ml) - her first full feed will be given tonight at 11pm. And we've been working on breastfeeding. Each time she does better than the last time. It's not an exact science figuring out how much she's gotten, but we're fairly certain that she got about 40ml when she nursed at 5:30pm today. On the whole, though, she's doing really well.
Isaak's surgery is Tuesday. While we're excited that he's going to get reconnected, it's scary to think of him going under the knife...again. Before Isaak was back-transferred to WakeMed, the surgeon mentioned that we should think about having a g-tube put in at the same time as the reconnect. With a g-tube, Isaak could get continuous feeds overnight. (Gee, there are a couple more phrases we'd hoped to never use again.) The goal of doing continuous feeds is to maximize the adaptation of the bowels.
In preparation for his surgery date, Isaak will be transferred to UNC on Sunday. And, if there is space available, Penny will, too. We are very sad to leave our ICN family at WakeMed. This was a hard decision, but things will be stressful enough without the added stress of children in different hospitals.
Speaking of hard decisions and stressful situations...
It's coming. Ollie's first angel anniversary on August 3rd and what would have been his second birthday, August 5th. Neil and I have both been talking about where we were this time last year. July 4th of last year we were at the ER with Oliver and I had just broken both elbows. July 7th, 8th and 9th of last year we decided (again) that bipap was not for us and left the PICU at Duke. July 19th of last year we made our last trip to the ER with Ollie - we knew our time with him was growing very short. And August 3rd of last year...he was gone.
We love you, Ollie Bear! And we still miss you terribly.
Tuesday, June 8, 2010
Isaak is back at WakeMed
So after much discussion with many doctors, and after hours of agonizing between ourselves, Bekka and I made the decision to move little guy back to WakeMed. That transfer occurred today and he is now ensconsced in an isolette right next to his sister. We are, of course, ecstatic to have them together again and close to home. It was tough being daddy and not being able to easily see my little guy whenever I wanted, and mommy had a really difficult time being in Chapel Hill and not seeing Penelope every day. Their nurses at WakeMed were almost as excited as we were to see him again and that was very touching. It's still scary when you do this type of transfer on a baby that is so small and delicate, but we felt it was the right thing to do for us and for Isaak. Now we wait and watch them grow (together!) and hopefully stay healthy.
We must give many thanks to the doctors and nurses at UNC. Their efforts saved his little life and they have been caring for him well these last 2 1/2 weeks. Isaak isn't done with UNC, of course. He is tentatively scheduled to have surgery on Tuesday, July 13 to repair his ostomy. He'll probably be transferred back to UNC a couple of days before that and he will be there 1 to 2 weeks for recovery and GI services as they calibrate his TPN levels and feeds before coming home.
Of course, to complicate this, if Penny stays on schedule, she will probably be coming home right about the same time. Luckily we've no shortage of volunteer grandmas, aunts and friends willing to step in and babysit. Funny that.
They both had pretty good days. Isaak's was perhaps a bit better. As mentioned in the last post, Penny is experiencing anemia right now and she's been having a few more cases of "A's and B's" as the nurses call them (Apnea and bradycardia episodes). She had a couple of deep de-sats while we were there this evening. No neo-puff was needed but it was pulled out. That isn't like her at all so they'll be keeping an extra close eye out. She really hasn't been herself today - much more lethargic than normal. One thing we keep telling ourselves is this is a process with steps both forward and back. They are only 31 weeks gestational age as of today and that is pretty tiny. Little girl has also been off caffeine for about 2 weeks, which is significantly earlier than normal so she's been way ahead of the curve. We'll see how this goes.
In other news, Grandma (Bekka's mom) arrived from Oklahoma today. She couldn't wait any longer to see the babies again. She'll be with us through Saturday. (Well, I say us, but really with the little ones :)
That's all the news that is fit to print for now....
We must give many thanks to the doctors and nurses at UNC. Their efforts saved his little life and they have been caring for him well these last 2 1/2 weeks. Isaak isn't done with UNC, of course. He is tentatively scheduled to have surgery on Tuesday, July 13 to repair his ostomy. He'll probably be transferred back to UNC a couple of days before that and he will be there 1 to 2 weeks for recovery and GI services as they calibrate his TPN levels and feeds before coming home.
Of course, to complicate this, if Penny stays on schedule, she will probably be coming home right about the same time. Luckily we've no shortage of volunteer grandmas, aunts and friends willing to step in and babysit. Funny that.
They both had pretty good days. Isaak's was perhaps a bit better. As mentioned in the last post, Penny is experiencing anemia right now and she's been having a few more cases of "A's and B's" as the nurses call them (Apnea and bradycardia episodes). She had a couple of deep de-sats while we were there this evening. No neo-puff was needed but it was pulled out. That isn't like her at all so they'll be keeping an extra close eye out. She really hasn't been herself today - much more lethargic than normal. One thing we keep telling ourselves is this is a process with steps both forward and back. They are only 31 weeks gestational age as of today and that is pretty tiny. Little girl has also been off caffeine for about 2 weeks, which is significantly earlier than normal so she's been way ahead of the curve. We'll see how this goes.
In other news, Grandma (Bekka's mom) arrived from Oklahoma today. She couldn't wait any longer to see the babies again. She'll be with us through Saturday. (Well, I say us, but really with the little ones :)
That's all the news that is fit to print for now....
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.
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.
Friday, May 21, 2010
Update on Isaak's Surgery
Today was a very tough day. Our little boy had to go under the knife and we didn't know what the outcome would be. Unfortunately, it was neither as simple nor as positive as we'd hoped.
It turns out that Isaak was indeed suffering from NEC. It had the courtesy to wall itself off from the rest of his body such that no air leaks had ever occurred to tip them off on the x-ray. When the surgeons opened him him up, they saw white intestines - a sure sign that the tissue was dead.
In the end, they removed over 50% of his intestinal track above his colon.
The good news (!?!) is that his colon was not affected and neither were his uppermost small intestines. They also had to perform an ostomy to allow his bowel the time and environment to heal. In 7-10 days, if he's doing well, he will begin receiving small amounts of food and they will monitor how it looks when it passes out of the ostomy. In a few weeks, they will reconnect his upper and lower intestines and hope that all goes well. Before all of that, the first order of business will be keeping him comfortable and infection free over the next few days. Bowel surgery is always risky and even more so when you are talking about a micro-preemie.
Isaak is currently heavily sedated (and will be for several days) but was alert enough to open up an eye and look at his mommy while she was holding his hand. He is still on a ventilator, but they are looking at lowering his setting as his lungs are no longer being compressed by his guts. I have to say that he certainly looks a lot more comfortable than he did the last few days before the procedure. These are small things, but they are the things at which we grasp.
The surgeons are confident they removed all of the necrotized tissue. The scary thing is there is no guarantee that it won't come back. The chances aren't really high, but NEC is very poorly understood. Apparently, in terms of the likelihood of a recurrence, it is better that they operate after the necrosis has essentially stabilized than to do it too early.
The long term prognosis really is a mystery. In some ways it was good that this happened at such an early gestational age as the body has amazing ways of adapting and repairing itself. It's unknown if he will be able to absorb enough nutrition from strictly oral intake in the relatively near term. There is a chance he could leave the hospital in a few weeks only receiving oral food, there is chance he might need oral AND IV nutrition (likely I think) and there is chance that he will be strictly IV. The hope is that things improve gradually and consistently. During normal gestation, much of the growth in the bowels occurs in the last trimester. Hopefully he gets an extra shot of growth with what he has left.
I will not lie, this has been extraordinarily difficult for Bekka and myself. We have been through so many things in the last two years with Oliver and now these little guys. This ranks up there as one of the toughest days we've ever had. To be this powerless as a parent and to see such a tiny little baby in so much distress is inconceivably heart-wrenching. No one ever said that being a parent would be easy, but I'll be damned if we expected it to be this hard.
We love you Isaak.
It turns out that Isaak was indeed suffering from NEC. It had the courtesy to wall itself off from the rest of his body such that no air leaks had ever occurred to tip them off on the x-ray. When the surgeons opened him him up, they saw white intestines - a sure sign that the tissue was dead.
In the end, they removed over 50% of his intestinal track above his colon.
The good news (!?!) is that his colon was not affected and neither were his uppermost small intestines. They also had to perform an ostomy to allow his bowel the time and environment to heal. In 7-10 days, if he's doing well, he will begin receiving small amounts of food and they will monitor how it looks when it passes out of the ostomy. In a few weeks, they will reconnect his upper and lower intestines and hope that all goes well. Before all of that, the first order of business will be keeping him comfortable and infection free over the next few days. Bowel surgery is always risky and even more so when you are talking about a micro-preemie.
Isaak is currently heavily sedated (and will be for several days) but was alert enough to open up an eye and look at his mommy while she was holding his hand. He is still on a ventilator, but they are looking at lowering his setting as his lungs are no longer being compressed by his guts. I have to say that he certainly looks a lot more comfortable than he did the last few days before the procedure. These are small things, but they are the things at which we grasp.
The surgeons are confident they removed all of the necrotized tissue. The scary thing is there is no guarantee that it won't come back. The chances aren't really high, but NEC is very poorly understood. Apparently, in terms of the likelihood of a recurrence, it is better that they operate after the necrosis has essentially stabilized than to do it too early.
The long term prognosis really is a mystery. In some ways it was good that this happened at such an early gestational age as the body has amazing ways of adapting and repairing itself. It's unknown if he will be able to absorb enough nutrition from strictly oral intake in the relatively near term. There is a chance he could leave the hospital in a few weeks only receiving oral food, there is chance he might need oral AND IV nutrition (likely I think) and there is chance that he will be strictly IV. The hope is that things improve gradually and consistently. During normal gestation, much of the growth in the bowels occurs in the last trimester. Hopefully he gets an extra shot of growth with what he has left.
I will not lie, this has been extraordinarily difficult for Bekka and myself. We have been through so many things in the last two years with Oliver and now these little guys. This ranks up there as one of the toughest days we've ever had. To be this powerless as a parent and to see such a tiny little baby in so much distress is inconceivably heart-wrenching. No one ever said that being a parent would be easy, but I'll be damned if we expected it to be this hard.
We love you Isaak.
Thursday, May 20, 2010
(Hopefully) No Surgery for Isaak
So, Isaak's transfer to UNC was pretty painless. That's not to say that it is easy having Isaak at UNC and Penny at WakeMed. Or that it's easy to see Isaak so sick. It is most definitely *not* easy.
Isaak's x-rays have not shown any changes. Nothing has worsened, but nothing has improved either. His bloodwork and clinical symptoms point to NEC, or "neck" in medical parlance for Necrotizing Enterocolitis. Sadly, Isaak certainly had a lot of the risk factors for NEC. And this is not the diagnosis we wanted. It is very serious and they will be closely monitoring him. X-rays and bloodwork will be done every 6 hours (at 2am, 8am, 2pm and 8pm).
Right now, since he does not have a bowel perforation, he will not be having surgery. However, he will be examined by the surgical staff in the event he does need surgery. The plan, though, is to treat him with antibiotics and continue the "watchful waiting" that we have become so good at. (Not that we ever wanted to be this good at it. Sigh.)
The doctor placed an arterial line shortly after Isaak arrived so that they can monitor his blood pressure in "real-time" and so they don't have to stick him every 6 hours for blood. And since he'll be having lots of blood drawn for bloodwork, we anticipate more blood transfusions. Again, this is fairly normal and expected with sick preemies.
Neil and I both noted today that the poor little guy is more lethargic than he was yesterday. We can tell that he's tired and just plain wiped out. He's letting the vent do most of the work for him. Only occasionally does he actually breathe "over" the vent - taking more than the 30 or 40 breaths per minute that the vent is giving him.
Isaak's little belly is taut and shiny and reddish. It looks uncomfortable. We both commented today that he reminds us of Ollie right now. Because his tummy is so distended, his chest and abdomen have that bell shape that became so familiar. And his hair has that same reddish-blonde hue as his big brother's.
Talking about those similarities today brought tears to my eyes. I think this is the first time since I was admitted to the hospital in early April that I have let my emotions have the better of me. It won't likely be the last.
I never would have expected that all three of my children - my two sons and my daughter - would have to fight so hard to live and breathe.
Please keep praying for Isaak and Penny.
Isaak's x-rays have not shown any changes. Nothing has worsened, but nothing has improved either. His bloodwork and clinical symptoms point to NEC, or "neck" in medical parlance for Necrotizing Enterocolitis. Sadly, Isaak certainly had a lot of the risk factors for NEC. And this is not the diagnosis we wanted. It is very serious and they will be closely monitoring him. X-rays and bloodwork will be done every 6 hours (at 2am, 8am, 2pm and 8pm).
Right now, since he does not have a bowel perforation, he will not be having surgery. However, he will be examined by the surgical staff in the event he does need surgery. The plan, though, is to treat him with antibiotics and continue the "watchful waiting" that we have become so good at. (Not that we ever wanted to be this good at it. Sigh.)
The doctor placed an arterial line shortly after Isaak arrived so that they can monitor his blood pressure in "real-time" and so they don't have to stick him every 6 hours for blood. And since he'll be having lots of blood drawn for bloodwork, we anticipate more blood transfusions. Again, this is fairly normal and expected with sick preemies.
Neil and I both noted today that the poor little guy is more lethargic than he was yesterday. We can tell that he's tired and just plain wiped out. He's letting the vent do most of the work for him. Only occasionally does he actually breathe "over" the vent - taking more than the 30 or 40 breaths per minute that the vent is giving him.
Isaak's little belly is taut and shiny and reddish. It looks uncomfortable. We both commented today that he reminds us of Ollie right now. Because his tummy is so distended, his chest and abdomen have that bell shape that became so familiar. And his hair has that same reddish-blonde hue as his big brother's.
Talking about those similarities today brought tears to my eyes. I think this is the first time since I was admitted to the hospital in early April that I have let my emotions have the better of me. It won't likely be the last.
I never would have expected that all three of my children - my two sons and my daughter - would have to fight so hard to live and breathe.
Please keep praying for Isaak and Penny.
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