Yes. Had.
He's lost it already.
Where?
We don't know. It's even possible the thing is still in his eye and we just can't find it.
Why does he have one, you ask?
His left eye is now aphakic, that is, missing the lens. You may recall it was removed during the retina surgery in December 2010. The only way to reasonably correct aphakia is via an intraocular lens replacement or by wearing a specially designed contact. Isaak is too young for a new lens due to his still growing eye and an increased risk of scar tissue. So they gave him an extended wear (7 day) contact.
And he lost it.
Before 24 hours were even up.
He had it when he went to bed, but it was gone this morning. We guess he just rubbed his eye randomly and popped it out. We looked in the bed, in the blankets, in diapers and on the floor all around. Did he eat it? Did he throw it out of the crib somehow? Or, it it really still in the eye somewhere? His eye isn't tearing and he doesn't seem to be rubbing it a lot but does seem kind of cranky and clingy today, according to Mom.
Did I mention these things cost $260 a pop. For ONE contact lens.
Clearly he will need to be trained.
Outside of the saga of the contact lens, his followup yesterday was very good. The main reason for his visit was to make sure the pressure was acceptable in the left eye after being off Azopt for 36 hours. It was in excess of 40 just 3 weeks ago. Yesterday, it was 9 (under 20 is normal).
Penny also had a 6 month checkup and here eyes look fantastic. No need for an exam under anesthesia for her. The only issue she has to track is very very mild veiling at the outer edges of her retinas. Leftover artifacts from the RoP. She'll be seen in a year. Way to go little girl.
Showing posts with label RoP. Show all posts
Showing posts with label RoP. Show all posts
Tuesday, April 12, 2011
Sunday, December 19, 2010
Arrrrrrr, matey...or what the &?#! is on my eye...
Isaak's surgery, besides being SIGNIFICANTLY more involved than we had hoped, went pretty well. This is little guy on Friday when he came home. He was grumpy and mostly very sleepy as the anesthesia worked it's way out of his system, but overall well behaved.
He went to the clinic for a followup yesterday morning to have the patch removed and make sure everything was stable. Below is a shot from the afternoon. Honestly, his eye looked much better than we expected. Up close, it looks pretty rough with substantial blood and you can see the gas bubble they injected (it looks like a bubble level for a tripod). You really can't tell that his lens is gone.
So for the next few days, we have to follow a strict regimen of 3 different eye drops (dilator, steroid and pressure) and antibiotic ointment. Some of them are applied up to 4 times a day. Fun? Not really. Though he does seem to be getting a bit better at tolerating the application.
Overnight, he gets to wear an eye patch to keep him from scratching at his eye. He's not a bad little patient at all. (Cute too).
Thursday is the follow up appointment at Duke and we'll see where we go from there.
He went to the clinic for a followup yesterday morning to have the patch removed and make sure everything was stable. Below is a shot from the afternoon. Honestly, his eye looked much better than we expected. Up close, it looks pretty rough with substantial blood and you can see the gas bubble they injected (it looks like a bubble level for a tripod). You really can't tell that his lens is gone.
So for the next few days, we have to follow a strict regimen of 3 different eye drops (dilator, steroid and pressure) and antibiotic ointment. Some of them are applied up to 4 times a day. Fun? Not really. Though he does seem to be getting a bit better at tolerating the application.
Overnight, he gets to wear an eye patch to keep him from scratching at his eye. He's not a bad little patient at all. (Cute too).
Thursday is the follow up appointment at Duke and we'll see where we go from there.
Friday, December 17, 2010
Eye Surgery, Part 2
UPDATE: Neil here - Isaak came through surgery fine and Bekka is with him in recovery. (I'm at home with Penny, long story).
So Isaak had about as much done as one could. It was a mess in his left eye. Blood vessels were dragging nerves around and growing in strange ways and there was quite a lot of scar tissue. Something had to be done or complete detachment was highly likely.
So what did they do?
Little guy has certainly had a challenging time of it in his short life. RoP rarely gets to this advanced stage these days, but in his case, too much hidden damage appears to have led to this situation. This was particularly frustrating as his eye appeared to have stabilized several time before suddenly worsening.
He's a trooper though and just keeps smiling through it all.
--------------------------------------
Isaak was taken back to the OR at 7:30 this morning. (We've been here since 6am, which meant I had to get the poor little guy out of bed at 5am.) He spent his time talking, smiling and flirting while we waited.
The retinal specialist came out to talk with me a few minutes ago. She will also be doing some additional laser ablation on Isaak's right eye as there is still some abnormal blood vessel growth. Her main concern with his left eye is that the tugging on the retina caused by the fibrous tissue could cause a hole to tear in the retina. If that happened, the vitreous fluid could get behind the retina and cause a full detachment. Full detachment would mean no functional vision in that eye.
I'll post more updates as I have time and more info.
So Isaak had about as much done as one could. It was a mess in his left eye. Blood vessels were dragging nerves around and growing in strange ways and there was quite a lot of scar tissue. Something had to be done or complete detachment was highly likely.
So what did they do?
- Removed the lens (he will wear a contact lens from here forward)
- Cut most of the scar and fibrous tissue pulling on his retina. They were not able to get to all of it, but were able to to get to most.
- Placed a scleral buckle around the eye. This helps to relieve tension on the retina. It might be permanent but will be in place for years in any case. It will have to be periodically loosened to allow for growth.
- Performed more laser surgery in his right eye. A couple of areas had started showing abnormal blood vessel growth. Unfortunately, RoP is a lifelong disease and we will have to stay on top of this. Overall his right eye is still doing really well.
Little guy has certainly had a challenging time of it in his short life. RoP rarely gets to this advanced stage these days, but in his case, too much hidden damage appears to have led to this situation. This was particularly frustrating as his eye appeared to have stabilized several time before suddenly worsening.
He's a trooper though and just keeps smiling through it all.
--------------------------------------
Isaak was taken back to the OR at 7:30 this morning. (We've been here since 6am, which meant I had to get the poor little guy out of bed at 5am.) He spent his time talking, smiling and flirting while we waited.
The retinal specialist came out to talk with me a few minutes ago. She will also be doing some additional laser ablation on Isaak's right eye as there is still some abnormal blood vessel growth. Her main concern with his left eye is that the tugging on the retina caused by the fibrous tissue could cause a hole to tear in the retina. If that happened, the vitreous fluid could get behind the retina and cause a full detachment. Full detachment would mean no functional vision in that eye.
I'll post more updates as I have time and more info.
Wednesday, December 15, 2010
So Long TPN – Don’t let the door hit you on the way out!
First the good: Today is Isaak’s last day on TPN! His Broviac catheter will be left in place for another month in case we have to backtrack and put him back on some sort of IV, but we are thinking positively on this one. He’s done very well on the low volume over the last week. Until removal, we will only have to flush the line daily and change the clave/connector twice a week
In news almost as exciting, he will now have a 4 hour gap in continuous feeds. He’s getting the same volume through his g-tube but over 20 hours instead of 24. This means we have 4 hours of a cordless baby! This is going to be a good thing for Isaak and mommy and daddy.
Both of the little guys continue to grow at an astounding rate. On Monday, Isaak weighed in at 14lbs even and Penny at 15 lbs 4oz. Amazing. Isaak has really taken off since they began allowing us to feed him on demand and Penny just keeps on trucking. She is such a chubby monkey now with little leg rolls and arm rolls and the biggest cheeks you have ever seen. We’ll have to get some diaper only pictures soon for the world to see ;)
Now the not so good: Isaak had a physical therapy evaluation on Monday. They were very happy with the neuromuscular side of things and he seems to be developing fine motor control reasonably well (such as passing an object from hand to hand) – BUT – his gross motor skills are lagging. That would include head control and attempting to sit up or roll over. We have certainly noticed a gap compared to his sister and mentioned as much during the SICC visit. As such, we’ll be looking at getting weekly PT visits to help him along as well as focusing our attention on helping him work towards goals.
We think that some of this may be because he just hasn’t had the same opportunities as his sister. He’s been hooked up to IVs and feeding tubes so much that our interaction has been more limited and we’ve been unable to hold him or place him in certain positions. Now that he is cordless for a few hours it will be much easier to work with him. We have no idea at this point if this anything other than developmental lag. We really hope so.
Now the downright bad: Isaak had an eye exam last Thursday and the results were not encouraging for his left eye. When last we visited Duke Eye Center, we thought everything was going to be pretty stable but the doctors let us know that nothing was predictable in these situations. It now appears that additional fibrous tissue is growing around the retina and is causing more tugging, greatly increasing the risk of full detachment.
We may have reached a point where surgical intervention will be required to try to preserve the vision he has in that eye. On Friday (12/17), he will be undergoing a detailed exam under anesthesia, and depending on the results, they will progress immediately to surgery. If surgery is necessary, odds are good that he will lose the lens in his left eye and will have to wear a contact lens to protect it and allow proper focusing.
The left has been of great concern since a massive hemorrhage back in the summer. It appeared that it had cleared up and stabilized but apparently damage was caused that might have been behind the retina and this has led to the continued problems. No question this is a big disappointment. Little guy has seen enough of OR for a lifetime, much less for a baby not even 8 months old yet.
On the plus side, his right eye is doing really well and is essentially mature.
That's it for now (quite a lot, really) and we'll have more information on Friday regarding surgery (or hopefully lack thereof).
Sunday, November 21, 2010
Babies and Stuff
OK, so to be fair, that is almost always the topic of entries on this blog. If I'm about to drop a treatise on the current state of Sino-Russian relations and their impact on the international mineral trade, I'll be sure to let you know so you can avoid reading it. (Except Roy, he probably would be MORE likely to read that ;)
We will have VERY cute pictures and video up later this month. Both of these little guys are changing so much, we often wake up with different babies than the ones we went to bed with. This week they have moved to a whole new level of personal interaction. More smiles, more giggles, better following of objects and people. Over the last couple of days they have started reaching for and grabbing objects consistently. It's really amazing to watch. Penny is a little ahead from a head control and body control point of view, but they are both doing so well.
Not much (thankfully) to report on the medical front. Isaak had his followup with the eye docs at Duke last week and everything looked pretty stable. His right eye is "fantastic" to quote one of the docs and his left looks about the same (it's NOT going to get better, we just don't want it to get worse). There is some concern as there is still blood in the eye but they aren't sure if it's old blood from the big hemorrhage this summer or if it's fresh. We have another visit scheduled in December when he'll be examined under mild anesthesia so they can get a more detailed look. We should also be hearing from the fine folks at the Governor Morehead school so we make sure we are doing all we can to help him adapt to his peculiar vision issues.
Let's see - anything else...Oh yes, Isaak now weighs well over 12 lbs. This past week saw a weight of 5.57 kilos or 12lb 4.5oz. He gained about 12 oz in one week! We would not be surprised if he tops 13 this week. Penny was 13lbs almost 3 weeks ago and we will try to weigh her this week. It would not be shocking to see her in excess of 14lbs at this point. They are such amazing little guys and Isaak's steady weight gain points to really good adaptations occurring in his GI tract.
Finally, just a reminder/request to help out victims of genetic disease. Alternating Hemiplegia of Childhood is a disease so poorly understood that they don't really even understand what causes it. Everyone out there has been so fantastic voting in the Pepsi Refresh campaign for SMA causes, we hope you feel comfortable voting for AHC in this current cycle. Click on the link below and you vote via facebook login, create an account or send text messages. AHC is currently in 3rd place and needs your help to get to #2 (a money slot). Thanks so much!
http://www.refresheverything.com/cureahc
We will have VERY cute pictures and video up later this month. Both of these little guys are changing so much, we often wake up with different babies than the ones we went to bed with. This week they have moved to a whole new level of personal interaction. More smiles, more giggles, better following of objects and people. Over the last couple of days they have started reaching for and grabbing objects consistently. It's really amazing to watch. Penny is a little ahead from a head control and body control point of view, but they are both doing so well.
Not much (thankfully) to report on the medical front. Isaak had his followup with the eye docs at Duke last week and everything looked pretty stable. His right eye is "fantastic" to quote one of the docs and his left looks about the same (it's NOT going to get better, we just don't want it to get worse). There is some concern as there is still blood in the eye but they aren't sure if it's old blood from the big hemorrhage this summer or if it's fresh. We have another visit scheduled in December when he'll be examined under mild anesthesia so they can get a more detailed look. We should also be hearing from the fine folks at the Governor Morehead school so we make sure we are doing all we can to help him adapt to his peculiar vision issues.
Let's see - anything else...Oh yes, Isaak now weighs well over 12 lbs. This past week saw a weight of 5.57 kilos or 12lb 4.5oz. He gained about 12 oz in one week! We would not be surprised if he tops 13 this week. Penny was 13lbs almost 3 weeks ago and we will try to weigh her this week. It would not be shocking to see her in excess of 14lbs at this point. They are such amazing little guys and Isaak's steady weight gain points to really good adaptations occurring in his GI tract.
Finally, just a reminder/request to help out victims of genetic disease. Alternating Hemiplegia of Childhood is a disease so poorly understood that they don't really even understand what causes it. Everyone out there has been so fantastic voting in the Pepsi Refresh campaign for SMA causes, we hope you feel comfortable voting for AHC in this current cycle. Click on the link below and you vote via facebook login, create an account or send text messages. AHC is currently in 3rd place and needs your help to get to #2 (a money slot). Thanks so much!
http://www.refresheverything.com/cureahc
Wednesday, November 10, 2010
6 Month Check-Ups
This will be brief, but it is an update! =)
Both babies went to the pediatrician for their 6 month check-up last week. Of course that also meant - gasp! - shots. And while they got the "regular" 6 month immunizations (2 injections), they also got flu and RSV shots (2 more injections). Isaak didn't start crying until halfway through the second injection. Penny started about the time the cap came off of the first needle! Neither one of them cried for very long, but it was heartbreaking nonetheless.
So, I'm guessing you all want statistics. Well, tooooooo bad!
Just kidding!
Penny weighed a whopping 12 pounds, 10 ounces. Her head circumference was 41 cm and her length was 23.25 inches. At birth, she weighed a mere 1 pound, 7 ounces and was just 12 inches long. *Updated info* As of Tuesday, Nov. 9th, she weighed 13 pounds even according to the home baby scale we have.
Isaak weighed 11 pounds, 3 ounces. His head circumference was 40.5 cm and his length was the same as his big sister's. He was just 1 pound, 11 ounces and 12 1/4 inches long at birth. *Updated info* As of Tuesday, Nov. 9th, he weighed 11 pounds, 8 ounces according to the home scale.
Penny had an eye appointment last Thursday and her RoP has resolved! The blood vessels in her eyes have finished growing all the way out to the retina! She won't have another eye appointment for 6 months. Yippee!
Isaak's next eye appointment at Duke is on Monday (11/15). Hopefully, his RoP is almost resolved and there's not any more detachment of his retina. (Fingers, toes, and, yes, eyes crossed!)
That's all the time I have for now!
P.S. Thank you to those of you that have voted for the AHC Foundation in the Pepsi Refresh Project! Your votes are making a difference as they have moved into 4th place...BUT they need to be in 1st or 2nd in order to win the grant money. Please keep voting daily! In addition to voting online, don't forget you can vote by text message as well. That's 2 votes daily!
Both babies went to the pediatrician for their 6 month check-up last week. Of course that also meant - gasp! - shots. And while they got the "regular" 6 month immunizations (2 injections), they also got flu and RSV shots (2 more injections). Isaak didn't start crying until halfway through the second injection. Penny started about the time the cap came off of the first needle! Neither one of them cried for very long, but it was heartbreaking nonetheless.
So, I'm guessing you all want statistics. Well, tooooooo bad!
Just kidding!
Penny weighed a whopping 12 pounds, 10 ounces. Her head circumference was 41 cm and her length was 23.25 inches. At birth, she weighed a mere 1 pound, 7 ounces and was just 12 inches long. *Updated info* As of Tuesday, Nov. 9th, she weighed 13 pounds even according to the home baby scale we have.
Isaak weighed 11 pounds, 3 ounces. His head circumference was 40.5 cm and his length was the same as his big sister's. He was just 1 pound, 11 ounces and 12 1/4 inches long at birth. *Updated info* As of Tuesday, Nov. 9th, he weighed 11 pounds, 8 ounces according to the home scale.
Penny had an eye appointment last Thursday and her RoP has resolved! The blood vessels in her eyes have finished growing all the way out to the retina! She won't have another eye appointment for 6 months. Yippee!
Isaak's next eye appointment at Duke is on Monday (11/15). Hopefully, his RoP is almost resolved and there's not any more detachment of his retina. (Fingers, toes, and, yes, eyes crossed!)
That's all the time I have for now!
P.S. Thank you to those of you that have voted for the AHC Foundation in the Pepsi Refresh Project! Your votes are making a difference as they have moved into 4th place...BUT they need to be in 1st or 2nd in order to win the grant money. Please keep voting daily! In addition to voting online, don't forget you can vote by text message as well. That's 2 votes daily!
Tuesday, October 26, 2010
Isaak's Eye Follow-up and other Weighty Matters
Bekka will have more to follow with details on Isaak's vision and the like, but I thought I'd drop a quick note.
His exam with Dr. Freedman at Duke went really well. The right eye responded to the laser treatment and the vascular growth appears to be normalizing. The left eye did not show any additional retinal detachment and the couple of spots that were hit with the laser also looked like they were doing well. She is optimistic that the left eye will stabilize and there will be minimal or no further detachment. This is not guaranteed of course. Anytime you get retinal detachment, the situation can worsen.
One bit of potentially positive news regards his field of vision. Because his brain is still learning how to see, it should adapt well to the available vision so that it uses the right eye for the central image and merges the left eye's partial vision in a fairly natural way. An adult would probably perceive an actual blank spot in their vision.
We also weighed both kids today. Isaak clocked in at 10lbs and just shy of 6 ounces. That's pretty dang good for his situation and he gained about 5 ounces since last week. Penny, well, that is another story altogether. Our little piglet is up to 12lbs 1oz. It's hard to believe she was 1lb 7oz when she was born and barely 5 when we brought her home. Our little girl is growing up!
His exam with Dr. Freedman at Duke went really well. The right eye responded to the laser treatment and the vascular growth appears to be normalizing. The left eye did not show any additional retinal detachment and the couple of spots that were hit with the laser also looked like they were doing well. She is optimistic that the left eye will stabilize and there will be minimal or no further detachment. This is not guaranteed of course. Anytime you get retinal detachment, the situation can worsen.
One bit of potentially positive news regards his field of vision. Because his brain is still learning how to see, it should adapt well to the available vision so that it uses the right eye for the central image and merges the left eye's partial vision in a fairly natural way. An adult would probably perceive an actual blank spot in their vision.
We also weighed both kids today. Isaak clocked in at 10lbs and just shy of 6 ounces. That's pretty dang good for his situation and he gained about 5 ounces since last week. Penny, well, that is another story altogether. Our little piglet is up to 12lbs 1oz. It's hard to believe she was 1lb 7oz when she was born and barely 5 when we brought her home. Our little girl is growing up!
Monday, October 25, 2010
Isaak and the Big Field of Vision
A quick couple of links that I've found helpful in understanding Isaak's vision loss.
The first is from Wikipedia and shows photos of visual field loss.
Second is a vision field test from St Paul’s Eye Unit, Royal Liverpool University Hospital.
Lastly, a graphic from Brown University.
The first is from Wikipedia and shows photos of visual field loss.
Second is a vision field test from St Paul’s Eye Unit, Royal Liverpool University Hospital.
Lastly, a graphic from Brown University.
 | |
| Depiction of Visual Field from Brown University |
Saturday, October 23, 2010
Just in Case You Were Wondering...
...Isaak is, in fact, at home and doing well. His stay on the pediatric floor at Duke was just a formality and he was discharged after one night with no fanfare (though he did make friends with the nurses).
We really won't have an update on the situation with his eyes until Monday morning. He has a follow up appointment at Duke Eye Center with the surgeons.
Otherwise, everybody is doing pretty well. The last official weights we had on these two, Penny was just shy of 11 and 1/2 pounds (I bet she is closer to 12 and 1/2 now) and Isaak was just a tick over 10. So "Little Bit", as I had taken to calling her, really isn't anymore. She appears to be taking full advantage of that intact digestive tract she is sporting to pack on the pounds and inches. Isaak is jealous. Honestly though, if we didn't have Penny to compare him to, I think his growth would look great to us and according to the doctors, his growth really is quite good given his disadvantages.
He had a visit with the GI Docs, GI Surgeons and Speech Therapist at UNC last Wednesday and everyone was pleased with how well he's doing. Amazed really. The surgeons increased the size of his G-tube (since he was a tiny tyke that didn't even weigh 5 lbs when he had his reanastomosis) and were otherwise happy with the way everything looked.
The GI docs have been very happy with his feeding progress and he's now getting 5, 45ml (1.5oz) bottles a day. This is quite an increase from the 3x10ml he was getting when he came home. He's still getting TPN via his Broviac but there is hope we can start tapering that down soon since he's doing so well with his g-tube and oral feeds. They have decreased the amount of dextrose in his TPN and that, combined with the oral feeds, has been great for his liver. His total bilirubin is down to 5.3 compared to 11.6 not long after he came home from the hospital. Remarkably, he barely even looks jaundiced now. Ideally, the bili level would be below 1.2 mg/DL, but we'll take what we are getting now, yes sir!
The speech therapist was making sure he was doing OK with his feeds. When we first began increasing bottle feeds, he was having some trouble developing suction. Apparently, that was just due to inexperience and he is now doing a great job and they did not have any concerns.
I took my first extended trip out of town since last spring...and nothing terrible happened. Things like that really ride in the back of your mind. Grandma Karla is in town too, so that made it a little easier on everyone. I wouldn't have taken off if Bekka was by herself that entire time.
Look for an update on Isaak's eyes later this week and new photos by the end of the month. I'm going to start uploading photos about once a month just so I'm not chasing my tail all the time trying to keep up.
We really won't have an update on the situation with his eyes until Monday morning. He has a follow up appointment at Duke Eye Center with the surgeons.
Otherwise, everybody is doing pretty well. The last official weights we had on these two, Penny was just shy of 11 and 1/2 pounds (I bet she is closer to 12 and 1/2 now) and Isaak was just a tick over 10. So "Little Bit", as I had taken to calling her, really isn't anymore. She appears to be taking full advantage of that intact digestive tract she is sporting to pack on the pounds and inches. Isaak is jealous. Honestly though, if we didn't have Penny to compare him to, I think his growth would look great to us and according to the doctors, his growth really is quite good given his disadvantages.
He had a visit with the GI Docs, GI Surgeons and Speech Therapist at UNC last Wednesday and everyone was pleased with how well he's doing. Amazed really. The surgeons increased the size of his G-tube (since he was a tiny tyke that didn't even weigh 5 lbs when he had his reanastomosis) and were otherwise happy with the way everything looked.
The GI docs have been very happy with his feeding progress and he's now getting 5, 45ml (1.5oz) bottles a day. This is quite an increase from the 3x10ml he was getting when he came home. He's still getting TPN via his Broviac but there is hope we can start tapering that down soon since he's doing so well with his g-tube and oral feeds. They have decreased the amount of dextrose in his TPN and that, combined with the oral feeds, has been great for his liver. His total bilirubin is down to 5.3 compared to 11.6 not long after he came home from the hospital. Remarkably, he barely even looks jaundiced now. Ideally, the bili level would be below 1.2 mg/DL, but we'll take what we are getting now, yes sir!
The speech therapist was making sure he was doing OK with his feeds. When we first began increasing bottle feeds, he was having some trouble developing suction. Apparently, that was just due to inexperience and he is now doing a great job and they did not have any concerns.
I took my first extended trip out of town since last spring...and nothing terrible happened. Things like that really ride in the back of your mind. Grandma Karla is in town too, so that made it a little easier on everyone. I wouldn't have taken off if Bekka was by herself that entire time.
Look for an update on Isaak's eyes later this week and new photos by the end of the month. I'm going to start uploading photos about once a month just so I'm not chasing my tail all the time trying to keep up.
Wednesday, October 13, 2010
Isaak's Eyeballs Open Post
Good morning!
We'll keep this open with occasional updates today. Right now (8:35), we are finished with preop and waiting for them to take Isaak back. He's currently asleep in Bekka's arms so I'd classify that as doing OK ;)
To recap: They will be conducting a detailed exam of both eyes while he is under anesthesia. More than likely, they will perform laser ablation surgery on his right eye to help with the RoP issues and to direct retina development into a more normal pattern. Based on the exam, they may also laser areas in the left eye in the hopes of stabilizing the situation and salvaging as much vision as possible. We'll have a much better idea where we stand.
Update (10:00am): We just met with the retinal specialist. The news confirms the pre-op diagnoses. The right eye looks healthy, if a bit underdeveloped for his age. The surgeon is in the process of lasering that eye to dry up a couple of small bleeds to prevent them from expanding and keep his right eye on track.
The left was, if anything, a bit worse than anticipated. They were able to conduct a much more detailed scan of the eye which showed how large the fold was and indicated that there is definite retinal detachment at the center andin a line across the eye back towards the nose. (Ok, had that backwards, it's actually towards the outside of the eye. He is going to have decent outer vision because the inside of the eye is what looks out.)
This is apparently classic stage 4-B RoP. Most of the periphery of the retina is attached, and he should have good outside peripheral vision. The doctor indicated that were this an older person who had developed the same problem, they would almost certainly have performed surgery. In the case of Isaak, this has been going on long enough that he has not developed the neural pathways to learn to see, and the risk associated with cutting the eye open and possibly having to take out the lens is not worth it. We do not know for sure if they are going to laser anything on that side.
Interestingly, he will have to have glasses as he gets mobile mostly to protect his very valuable right eye.We'll have more after meeting with the surgeon.
Update (11:00am): Just met with the surgeon. Everything went swimmingly. His right eye looked good and she hit a few spots of concern (but nothing dire) with the laser. She was very happy with the vascular development in the left eye outside of the folded area and only hit a couple of spots there. She confirmed that both she and the retinal specialist concurred that surgery on the left eye carried far more risk than benefit, especially considering how well attached and developed the unaffected retina is. We will see her again a week from Monday for a follow-up. In the meantime, we apply two different types of eye drops for the next 5 days. That is pretty much it for post-op care.
Bekka is back in recovery with Isaak and I'm waiting for them to move to a normal post-op spot so I can join. After that, we'll wait while they find us a spot in the main hospital tower and go from there. His stay in the hospital is strictly to observe for any lingering effects of anesthesia, from an eye standpoint, he is good to go.
Update (Afternoon): Little guy is happily ensconced in a room on the 5th floor at Duke. Once he was awake, you've never seen a baby so eager to get a bottle of milk! Poor guy had not had formula or g-tube feeds since midnight, only some pedialyte overnight (just like grownups and anesthesia, he couldn't eat). This afternoon, he's mostly been napping. I'm sure the stress of the surgery plus the lingering effects of being put under have zapped him but good.
Assuming no issues, we'll be outta here first thing in the morning.
We'll keep this open with occasional updates today. Right now (8:35), we are finished with preop and waiting for them to take Isaak back. He's currently asleep in Bekka's arms so I'd classify that as doing OK ;)
To recap: They will be conducting a detailed exam of both eyes while he is under anesthesia. More than likely, they will perform laser ablation surgery on his right eye to help with the RoP issues and to direct retina development into a more normal pattern. Based on the exam, they may also laser areas in the left eye in the hopes of stabilizing the situation and salvaging as much vision as possible. We'll have a much better idea where we stand.
Update (10:00am): We just met with the retinal specialist. The news confirms the pre-op diagnoses. The right eye looks healthy, if a bit underdeveloped for his age. The surgeon is in the process of lasering that eye to dry up a couple of small bleeds to prevent them from expanding and keep his right eye on track.
The left was, if anything, a bit worse than anticipated. They were able to conduct a much more detailed scan of the eye which showed how large the fold was and indicated that there is definite retinal detachment at the center and
This is apparently classic stage 4-B RoP. Most of the periphery of the retina is attached, and he should have good outside peripheral vision. The doctor indicated that were this an older person who had developed the same problem, they would almost certainly have performed surgery. In the case of Isaak, this has been going on long enough that he has not developed the neural pathways to learn to see, and the risk associated with cutting the eye open and possibly having to take out the lens is not worth it. We do not know for sure if they are going to laser anything on that side.
Interestingly, he will have to have glasses as he gets mobile mostly to protect his very valuable right eye.We'll have more after meeting with the surgeon.
Update (11:00am): Just met with the surgeon. Everything went swimmingly. His right eye looked good and she hit a few spots of concern (but nothing dire) with the laser. She was very happy with the vascular development in the left eye outside of the folded area and only hit a couple of spots there. She confirmed that both she and the retinal specialist concurred that surgery on the left eye carried far more risk than benefit, especially considering how well attached and developed the unaffected retina is. We will see her again a week from Monday for a follow-up. In the meantime, we apply two different types of eye drops for the next 5 days. That is pretty much it for post-op care.
Bekka is back in recovery with Isaak and I'm waiting for them to move to a normal post-op spot so I can join. After that, we'll wait while they find us a spot in the main hospital tower and go from there. His stay in the hospital is strictly to observe for any lingering effects of anesthesia, from an eye standpoint, he is good to go.
Update (Afternoon): Little guy is happily ensconced in a room on the 5th floor at Duke. Once he was awake, you've never seen a baby so eager to get a bottle of milk! Poor guy had not had formula or g-tube feeds since midnight, only some pedialyte overnight (just like grownups and anesthesia, he couldn't eat). This afternoon, he's mostly been napping. I'm sure the stress of the surgery plus the lingering effects of being put under have zapped him but good.
Assuming no issues, we'll be outta here first thing in the morning.
Tuesday, October 12, 2010
Isaak's Eyes are not Smiling Today
Yesterday, we received tough news regarding Isaak. His left eye has sustained damage that likely means he will have little or no central vision in that eye. With a little luck, he will have peripheral vision but that depends on how development occurs and whether the damage progresses.
Last week, his weekly eye exam revealed a fold in the retina of the left eye. This was new, and the doctor in Raleigh immediately scheduled a visit to the Duke Eye Center. We had that visit yesterday and the doctor indicated that the fold went from the outer edge of the retina into the macula. The fold is essentially a ridge of blood vessels and scar tissue that have pulled the retina up.
The macula is critical to central vision (you may be familiar with the condition of macular degeneration). It appears there really is nothing they can do to guarantee improved vision in the eye without putting the overall health of the eye at even greater risk. You also have to take into account the risk of 2+ hours under anesthesia for any potential procedure given his relatively delicate state and young age. If his right eye was also in equally bad shape, they might recommend taking the risks involved to try and salvage more vision.
His left eye has been more problematic from the beginning, and he experienced a large hemorrhage a couple of months ago. It's not unlikely that whatever caused the hemorrhage event led to this situation.
The right eye is doing reasonably well. However, he still shows signs of Stage 3 RoP, and that is concerning at this late age. To that end, they have scheduled a detailed eye exam under anesthesia with likely laser ablation surgery. It's also quite possible they will perform laser surgery on the left eye to help reduce the likelihood of total vision loss. This is scheduled for Wednesday (10/13). Time under anesthesia is pretty short for these procedures (vs. full-on surgery).
Yep, that's tomorrow. Life moves fast when you have preemies.
We cannot lie: This sucks.
Isaak has some of the biggest, most soulful eyes we've seen this side of Ollie and he's been through so much already. It is terrible that this is happening to him on top of everything else. Unfortunately, he seems to be following the path that many boy preemies take: That of most difficulty.
Last week, his weekly eye exam revealed a fold in the retina of the left eye. This was new, and the doctor in Raleigh immediately scheduled a visit to the Duke Eye Center. We had that visit yesterday and the doctor indicated that the fold went from the outer edge of the retina into the macula. The fold is essentially a ridge of blood vessels and scar tissue that have pulled the retina up.
The macula is critical to central vision (you may be familiar with the condition of macular degeneration). It appears there really is nothing they can do to guarantee improved vision in the eye without putting the overall health of the eye at even greater risk. You also have to take into account the risk of 2+ hours under anesthesia for any potential procedure given his relatively delicate state and young age. If his right eye was also in equally bad shape, they might recommend taking the risks involved to try and salvage more vision.
His left eye has been more problematic from the beginning, and he experienced a large hemorrhage a couple of months ago. It's not unlikely that whatever caused the hemorrhage event led to this situation.
Yep, that's tomorrow. Life moves fast when you have preemies.
We cannot lie: This sucks.
Isaak has some of the biggest, most soulful eyes we've seen this side of Ollie and he's been through so much already. It is terrible that this is happening to him on top of everything else. Unfortunately, he seems to be following the path that many boy preemies take: That of most difficulty.
Sunday, September 26, 2010
Which the Chicken and Which the Egg?
So Penny has her first cold.
So does Daddy.
Question is: Who gave it to who? Or did we both pick it up at the same time?
So far, she's been doing great and the only real signs are a snuffly nose (for which the terrible, awful, evil bulb syringe offers relief) and she is sleeping a LOT. I mean, a LOT, even for a 6 week old (which she and her brother will be on Tuesday based on adjusted ages). We will be staying on top of this, as even a simple cold can be dangerous for preemies. Their lungs just aren't fully developed until they are almost 2 years of age so potential respiratory issues don't go away for a long, long time.
Both are doing well overall. Last week was very busy with appointments including GI for Isaak and Ophthalmology and preemie clinic visits for both. The GI visit was very positive. It resulted in Isaak getting increased oral feeds - from 3 x 10ml bottles to 4 x 20ml bottles. Based on how well he's doing, that should go to 4 x 30ml bottles beginning tomorrow. A whole ounce! 4 times a day! Way to go little guy. They also stopped IV lipids. He's still getting TPN but that will likely be reduced further if we increase feeds on Monday. Stopping the lipids should really help his liver begin recovering. We'll have to see how he does weight gain wise over the next couple of weeks and whether he can stay off.
The eye doc visit was also encouraging. Isaak's eye development has finally progressed to "Zone 3", meaning that they are maturing. Penny's eye that had suddenly started worsening is back on track. Oh, Isaak's hemorrhage is also clearing up. He's had that for months but it's much better just recently.
The preemie clinic (or Special Infant Care) was their first official visit back to WakeMed since they left. It's essentially to allow a neonatalogist to follow them and watch out for all those potential preemie pitfalls. Overall, it too was positive. The only instructions we came away with were for a few stretches to help increase their flexibility and a follow-up with a speech therapist for Isaak. Why you ask? As he has started eating more, we have noticed that he really gums the bottle nipple and swallows rather than truly sucking. He also doesn't keep a pacifier in well (if at all some days). We want to head off any significant problems with early intervention therapy. He eats really well, just not quite correctly.
We'll be back in a couple of months for another follow up with our friends at WakeMed.
On a sadder note, I'd appreciate any prayers and kind thoughts you feel like throwing my maternal grandfather's way. He had a significant stroke last week and is currently at Baptist Hospital in Winston-Salem. He seems to be medically stable right now but has lost a lot of his speech ability and has limited movement on the right side of his body. He hasn't been able to meet his new great-grandchildren yet but we hope it can happen soon.
That is all the news from lake Wobegon - until later....
So does Daddy.
Question is: Who gave it to who? Or did we both pick it up at the same time?
So far, she's been doing great and the only real signs are a snuffly nose (for which the terrible, awful, evil bulb syringe offers relief) and she is sleeping a LOT. I mean, a LOT, even for a 6 week old (which she and her brother will be on Tuesday based on adjusted ages). We will be staying on top of this, as even a simple cold can be dangerous for preemies. Their lungs just aren't fully developed until they are almost 2 years of age so potential respiratory issues don't go away for a long, long time.
Both are doing well overall. Last week was very busy with appointments including GI for Isaak and Ophthalmology and preemie clinic visits for both. The GI visit was very positive. It resulted in Isaak getting increased oral feeds - from 3 x 10ml bottles to 4 x 20ml bottles. Based on how well he's doing, that should go to 4 x 30ml bottles beginning tomorrow. A whole ounce! 4 times a day! Way to go little guy. They also stopped IV lipids. He's still getting TPN but that will likely be reduced further if we increase feeds on Monday. Stopping the lipids should really help his liver begin recovering. We'll have to see how he does weight gain wise over the next couple of weeks and whether he can stay off.
The eye doc visit was also encouraging. Isaak's eye development has finally progressed to "Zone 3", meaning that they are maturing. Penny's eye that had suddenly started worsening is back on track. Oh, Isaak's hemorrhage is also clearing up. He's had that for months but it's much better just recently.
The preemie clinic (or Special Infant Care) was their first official visit back to WakeMed since they left. It's essentially to allow a neonatalogist to follow them and watch out for all those potential preemie pitfalls. Overall, it too was positive. The only instructions we came away with were for a few stretches to help increase their flexibility and a follow-up with a speech therapist for Isaak. Why you ask? As he has started eating more, we have noticed that he really gums the bottle nipple and swallows rather than truly sucking. He also doesn't keep a pacifier in well (if at all some days). We want to head off any significant problems with early intervention therapy. He eats really well, just not quite correctly.
We'll be back in a couple of months for another follow up with our friends at WakeMed.
On a sadder note, I'd appreciate any prayers and kind thoughts you feel like throwing my maternal grandfather's way. He had a significant stroke last week and is currently at Baptist Hospital in Winston-Salem. He seems to be medically stable right now but has lost a lot of his speech ability and has limited movement on the right side of his body. He hasn't been able to meet his new great-grandchildren yet but we hope it can happen soon.
That is all the news from lake Wobegon - until later....
Thursday, September 9, 2010
New Photos and a Word about Eyeballs
It's been a mostly uneventful week since the last post. I finally managed to upload some photos (3 new albums) and video of Isaak and his binky. Click on Ollie and go take a look-see.
Both munchkins had their eyeballs probed today and things appear to be progressing. The hemorhage in Isaak's left eye is finally clearing up (after almost two months!) and while they both have some RoP present, it appears that progress is occurring. Penny really isn't far away from being "normal" at all.
The only other thing we have medically to report is that Isaak's bloodwork is looking pretty stable. He's still a little anemic and his bilirubin is still elevated but hasn't gone up anymore.
Other than that, sleep is the only thing we are lacking. Having a baby can be a challenge. Having TWO babies is a bigger one. One of those babies having medical issues...well, just makes life all that much more exciting.
Both munchkins had their eyeballs probed today and things appear to be progressing. The hemorhage in Isaak's left eye is finally clearing up (after almost two months!) and while they both have some RoP present, it appears that progress is occurring. Penny really isn't far away from being "normal" at all.
The only other thing we have medically to report is that Isaak's bloodwork is looking pretty stable. He's still a little anemic and his bilirubin is still elevated but hasn't gone up anymore.
Other than that, sleep is the only thing we are lacking. Having a baby can be a challenge. Having TWO babies is a bigger one. One of those babies having medical issues...well, just makes life all that much more exciting.
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...
Subscribe to:
Posts (Atom)
Posts
