Friday, February 24, 2012
Post Op
Went well. He was Stage 3, zone 1 with plus disease by the time he went to the OR. So very blessed we did this surgery today. Pray he gets to keep eyesight in both eyes. They are telling us that is the optimistic point of view.
Thursday, February 23, 2012
Surgery
So the ROP discussed earlier was a little incorrectly conveyed to us. We spoke with the ophthalmologist directly, and he indicated that Biggun has ROP in zone 1 at stage one, which isn't a big deal, but because he has plus disease that progressed rapidly, they had to do emergency surgery to prevent total blindness.
To make matters worse, he will lost all his peripheral vision and night vision. He will have 10% of his vision at best if the surgery is completely successful and will undoubtedly be put in glasses to correct near sightedness. We ha to make the decision quickly, because based on the rate of progression, his retina would have likely detached entirely by Saturday.
This is a major setback and extremely disappointing because of the loss of quality of life to Biggun. He will never be a pilot or astronaut, he will have issues seeing danger on a street, and he will likely not be able to drive at night. But this will at least give him a chance to see, and that's the important goal we are trying to achieve now.
Short term, he has to go back on a ventilator and IV, which was poor timing since they anticipated moving him into the intermediate nursery by March and that is not going to happen now since he will need constant observation again. But he's a fighter, so I know if anyone can do it, he can.
One of the nurses we spoke to said she saw ROP surgery numerous times in her twenty years of nursing, but never this particular procedure. That felt a little anxious, but we are hopeful that this doctor is excellent. I googled him, Dr. Darius Moshfeghi, and he is the top ophthalmologist in the US and continues to contribute relevant research to ROP care.
Waiting for Biggun to get out of surgery now. Will keep everyone posted.
Much Love,
Rachel and Joshua
To make matters worse, he will lost all his peripheral vision and night vision. He will have 10% of his vision at best if the surgery is completely successful and will undoubtedly be put in glasses to correct near sightedness. We ha to make the decision quickly, because based on the rate of progression, his retina would have likely detached entirely by Saturday.
This is a major setback and extremely disappointing because of the loss of quality of life to Biggun. He will never be a pilot or astronaut, he will have issues seeing danger on a street, and he will likely not be able to drive at night. But this will at least give him a chance to see, and that's the important goal we are trying to achieve now.
Short term, he has to go back on a ventilator and IV, which was poor timing since they anticipated moving him into the intermediate nursery by March and that is not going to happen now since he will need constant observation again. But he's a fighter, so I know if anyone can do it, he can.
One of the nurses we spoke to said she saw ROP surgery numerous times in her twenty years of nursing, but never this particular procedure. That felt a little anxious, but we are hopeful that this doctor is excellent. I googled him, Dr. Darius Moshfeghi, and he is the top ophthalmologist in the US and continues to contribute relevant research to ROP care.
Waiting for Biggun to get out of surgery now. Will keep everyone posted.
Much Love,
Rachel and Joshua
ROP
So we've had a slew of great days with Biggun, and there was even discussion of moving him to an intermediate nursery. Grandma came into town and got to hold him for the first time and his progress was great.
This morning during his eye exam, they found his eyesight deteriorated rapidly and his cornea began to separate from his orbit from an excess growth of cells around the cornea that affect peripheral vision and eventually lead to blindness.
The causes of ROP are prematurity and high intake of oxygen. Because he had both, it's likely that is the cause, but this seemed to blind side his doctor.
On the positive side, Dr. Penn came back on as his attending physician, and she is such a rockstar. She has managed to proactively catch a number of issues and get him taken care of. We are going to have to buy that woman a bouquet of flowers when he finally gets discharged!
Long term, it's likely he'll have excessively poor eyesight that won't allow him to be a candidate for LASIK surgery to resolve, but this will give him the best chance to avoid blindness.
So he will need to go back on a ventilator, and he has to be put back in an isolette (he had graduated TODAY to an open bed), and he will need an IV put in, so this is an unfortunate and significant set back, but he's a fighter and I have no doubt he will overcome it rapidly like he has these last few weeks. They expect significant weight loss and recovery, so please send prayers.
Much Love,
Rachel and Joshua
This morning during his eye exam, they found his eyesight deteriorated rapidly and his cornea began to separate from his orbit from an excess growth of cells around the cornea that affect peripheral vision and eventually lead to blindness.
The causes of ROP are prematurity and high intake of oxygen. Because he had both, it's likely that is the cause, but this seemed to blind side his doctor.
On the positive side, Dr. Penn came back on as his attending physician, and she is such a rockstar. She has managed to proactively catch a number of issues and get him taken care of. We are going to have to buy that woman a bouquet of flowers when he finally gets discharged!
Long term, it's likely he'll have excessively poor eyesight that won't allow him to be a candidate for LASIK surgery to resolve, but this will give him the best chance to avoid blindness.
So he will need to go back on a ventilator, and he has to be put back in an isolette (he had graduated TODAY to an open bed), and he will need an IV put in, so this is an unfortunate and significant set back, but he's a fighter and I have no doubt he will overcome it rapidly like he has these last few weeks. They expect significant weight loss and recovery, so please send prayers.
Much Love,
Rachel and Joshua
Sunday, February 19, 2012
Big Day for Biggun!
We had kind of a chaotic day yesterday. First, we arrived at the hospital with Nana, and I was eager to hold Biggun. His nurse was gone, and the other nurse kind of blew us off, and when our nurse came in, she said "I think mom wants to hold baby."
They didn't want to at first, but he finally curled up against me. There was so much noise in the background, that I was trying to shield his eyes and ears without success. He kept desatting, and when I asked to put him back, she said "Are you sure? He looks so relaxed and comfy." But there were three kids in the room that were laughing and playing, and one of the nurses was showing them games on the computer, so I opted to put Biggun back to calm him down.
We asked some questions about his upcoming MRI, and the nurse wasn't familiar with Biggun so she called a doctor. The new doctor came and said she didn't know much about his case, but that he would get an MRI at 35 weeks gestation (three weeks from now). We asked about his desats, and she didn't know the answer so she paged one of the doctors. We waited for a bit, and she came back to check to see if the doctor arrived and we told her no. We couldn't wait any longer, so we left, but on our way out we saw the doctor we were waiting on chit chatting with a nurse.
I was really upset, so we came back later for grandma to hold. When we got there, we had to wait 30 minutes for shift change to finish. So by the time we got back, his nurse told us we had already held him today and she was leaving for lunch. I asked when she would be back, and she said 30 minutes. I explained we wanted to hold him and she said because we had already held him, she had another admission she needed to handle, and because "skin to skin caused him to desat earlier today" that we couldn't hold him again.
I was pretty devastated. Joshua ended up calling the nurse supervisor to clarify, where they assured us that holding him is never a reason for desat and they would look into it.
It was a disappointing visit day, and so we thought today would be the same. But when we came in, I told the nurse we wanted to wait to hold him until the evening when things were calmer in the room, but she insisted that he's doing amazing and we would get to hold him again tonight. So his Nama held him today!
It was made much easier by the fact HE IS NO LONGER ON CPAP!! This is a HUGE milestone, because it means his breathing is great.
He is also now a whopping 3 lbs! Growing by leaps and bounds!
We aren't sure if they'll let us hold him tonight, but since we have been able to hold him skin to skin multiple times in a day before, it shouldn't be an issue.
So now we just want him to keep up the rockstar breathing and weight gaining, and he will be out of here in to time!
Keep the prayers coming
Much Love,
Rachel and Joshua
They didn't want to at first, but he finally curled up against me. There was so much noise in the background, that I was trying to shield his eyes and ears without success. He kept desatting, and when I asked to put him back, she said "Are you sure? He looks so relaxed and comfy." But there were three kids in the room that were laughing and playing, and one of the nurses was showing them games on the computer, so I opted to put Biggun back to calm him down.
We asked some questions about his upcoming MRI, and the nurse wasn't familiar with Biggun so she called a doctor. The new doctor came and said she didn't know much about his case, but that he would get an MRI at 35 weeks gestation (three weeks from now). We asked about his desats, and she didn't know the answer so she paged one of the doctors. We waited for a bit, and she came back to check to see if the doctor arrived and we told her no. We couldn't wait any longer, so we left, but on our way out we saw the doctor we were waiting on chit chatting with a nurse.
I was really upset, so we came back later for grandma to hold. When we got there, we had to wait 30 minutes for shift change to finish. So by the time we got back, his nurse told us we had already held him today and she was leaving for lunch. I asked when she would be back, and she said 30 minutes. I explained we wanted to hold him and she said because we had already held him, she had another admission she needed to handle, and because "skin to skin caused him to desat earlier today" that we couldn't hold him again.
I was pretty devastated. Joshua ended up calling the nurse supervisor to clarify, where they assured us that holding him is never a reason for desat and they would look into it.
It was a disappointing visit day, and so we thought today would be the same. But when we came in, I told the nurse we wanted to wait to hold him until the evening when things were calmer in the room, but she insisted that he's doing amazing and we would get to hold him again tonight. So his Nama held him today!
It was made much easier by the fact HE IS NO LONGER ON CPAP!! This is a HUGE milestone, because it means his breathing is great.
He is also now a whopping 3 lbs! Growing by leaps and bounds!
We aren't sure if they'll let us hold him tonight, but since we have been able to hold him skin to skin multiple times in a day before, it shouldn't be an issue.
So now we just want him to keep up the rockstar breathing and weight gaining, and he will be out of here in to time!
Keep the prayers coming
Much Love,
Rachel and Joshua
Thursday, February 16, 2012
Post-Valentines weight gain
So Biggun is going through the usual post b-day weight gain, only we hope he doesn't lose it! He's now an astounding 2 lbs 11 oz! They started fortifying breast milk with formula to add calories, which seems to be working very well. He is still having issues with reflux, and the medication is helping prevent desats, but it seems to happen like clockwork with every feeding.
His eye exam was the same. Still about an inch from his face, which they say is normal for his age. They are going to recheck in a week.
So now we just want him to grow! He seems to be putting on weight, and he looks so much better. No IVs, and his color is amazing.
Keep the prayers coming!
P.S. He has graduated to clothes!
Much Love,
Rachel and Joshua
His eye exam was the same. Still about an inch from his face, which they say is normal for his age. They are going to recheck in a week.
So now we just want him to grow! He seems to be putting on weight, and he looks so much better. No IVs, and his color is amazing.
Keep the prayers coming!
P.S. He has graduated to clothes!
Much Love,
Rachel and Joshua
Monday, February 13, 2012
Happy Birthday, Dad!
Today is daddy Biggun's birthday! Biggun decided he wasn't super thrilled with kangaroo care because he was wet, but he kept stealing glances at me. I would talk, sing and coo to him and he just looked at me with those beautiful eyes. He really is so AWARE.
He is now a whopping 2 lbs 10 oz. they have him on genkomyacin for acid reflux. He was bumped up to 26 ml per feeding, but he still has issues keeping it all down.
He is responding well on CPAP, so we are thinking he might get to stay on that until he's big enough to have it removed completely! Hematocrit is still low, but they continue to compensate with blood transfusions.
Keep the prayers coming!
Much Love,
Rachel and Joshua
He is now a whopping 2 lbs 10 oz. they have him on genkomyacin for acid reflux. He was bumped up to 26 ml per feeding, but he still has issues keeping it all down.
He is responding well on CPAP, so we are thinking he might get to stay on that until he's big enough to have it removed completely! Hematocrit is still low, but they continue to compensate with blood transfusions.
Keep the prayers coming!
Much Love,
Rachel and Joshua
Saturday, February 11, 2012
Growing
So I am currently sitting at the hospital, with a little Biggun in my arms, and I swear I can FEEL him growing! He's nuzzled right into my shirt against my chest and peeking around at anything and everything. While his eyesight isn't great, he's still managing to try!
They said he will still need a blood transfusion because his hematocrit is low, and they still have not determined his blood type because he was receiving so many blood transfusions that it made the read inaccurate.
Next week he is due for a thyroid test , scheduled for another eye exam. He is also starting vitamins and iron to help him grow. His cries sound like the most precious squeaks I've ever heard. But to hear him cry is music to my ears.
They are just now changing his isolate and he got a nice bath, so everything is clean and fresh. They are a little concerned about a hernia in his intestine due to straining while trying to potty. He looks like he is developing one and they say it's more common in boys.
But otherwise, he is growing famously! Please keep up the prayers! They are so obviously working!
Much Love,
Rachel and Joshua
They said he will still need a blood transfusion because his hematocrit is low, and they still have not determined his blood type because he was receiving so many blood transfusions that it made the read inaccurate.
Next week he is due for a thyroid test , scheduled for another eye exam. He is also starting vitamins and iron to help him grow. His cries sound like the most precious squeaks I've ever heard. But to hear him cry is music to my ears.
They are just now changing his isolate and he got a nice bath, so everything is clean and fresh. They are a little concerned about a hernia in his intestine due to straining while trying to potty. He looks like he is developing one and they say it's more common in boys.
But otherwise, he is growing famously! Please keep up the prayers! They are so obviously working!
Much Love,
Rachel and Joshua
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