Avastin

So laser treatment hasn't had an opportunity to work, and Biggun's plus disease has accelerated rapidly. He's now at stage 3, and inevitably, hi retina will detach if nothing is done.
Our doctor intends to inject Avastin into his eyes in an effort to halt the plus disease. From the top opthamologist in the country, we asked him how many times he's done this, and his response was never. Never has a baby needed this procedure in his 23 years of experience.
We will know in two days if this drug can stop the plus disease from detaching his retina and give the laser time to work the way it needs to. The likely outcome is that Biggun will be blind, and at this point we are looking at ways to raise a blind baby.

To add to it, his left lung partially collapsed yesterday, further injuring his already scarred lungs. They've diagnosed him with moderate chronic lung disease and much more trauma to his lungs will make it that much more likely that he will need more assistance with breathing.

They tried to put in a PICC line again, but it was unsuccessful. They will try again this afternoon, but the concern is he is quickly running out of IV sites.

Please send prayers.

Much Love,
Rachel and Joshua

P.S. green eyes and presence of plus disease

Re-intubated

Biggun is still having some issues recovering from surgery. Most prominent is his inability to tolerate feeds. They gave him 5 ML at 10 am, then another 5 at 1 PM, and by 4 PM, they noticed he had not digested 6 ML of the 10 they fed him. So his stomach is still waking up from being under anesthesia.

They had an issue where they noticed him getting very puffy after two blood transfusions. They gave him LASIK, a drug that acts as a diuretic, and that seemed to help the swelling go down, but he is still retaining quite a bit of fluid. Usually, he gains 20-30 grams of weight per day, and he has been gaining 100 grams. Which isn't a good thing. It means he is retaining a high amount of fluid.

He also threw up this morning. When they looked, they found his stomach distended to 4 cm due to his ventilator tube going down into his stomach and essentially filling his stomach with air. They pulled the tube immediately and replaced it with a larger one, but he had air in his stomach and intestines, and vomit in his lungs. They have removed most of the air from his stomach, but some still leaked into his intestines, so he's going to have gas pains. They did a chest x-ray to determine how much vomit leaked into his lungs and figure out if they will need to go in and remove any excess. It was an unfortunate circumstance and it explains why he wasn't tolerating his feeds very well.

He is supposed to be removed from his ventilator tomorrow and be put back onto the CPAP and eventually on the nasal cannula, but being back on the ventilator has caused some major distress to his body. We are still being told not to touch him or talk much to him so he can get as much rest as possible, which is really frustrating. Cathy called me on Saturday night to tell me if I wanted to come sit bedside and read for a bit, she thought that would be okay. It made me feel SO much better to be able to help change his diaper, take his temperature and see him with the top off his isolette. So far, she has been the saving grace of the nursing care.

Keep the prayers coming. Tomorrow, Dr. Moshfeghi will return and tell us what his eyes are going to look like long term and whether the ROP is getting worse or better. Hopefully good news!

Much Love,
Rachel and Joshua

Post Op from Dr. Moshfeghi

So the doctor came to look at Biggun this morning, and the GREAT news is that he can see from both eyes. Definitely a positive thing!
The one thing he was concerned about was that in one eye, he had plus disease, but only in two quadrants of the eye. Usually it happens in all four. He seemed genuinely concerned about that and so he is going to see him again on Tuesday. I guess it's uncommon to check them so early because the eyes are so swollen from being lasered that checking them is fairly complicated because getting the eye open is difficult. But I'm glad we have a confident doctor who is watching everything closely.
At this point, we know we cannot preserve his peripheral or night vision. That is gone indefinitely. But we can continue to watch him and ensure the 10 degrees of vision in front of his body is the best and most preserved it can be.
He hadn't woken up from anesthia as of last night. This morning he was moving around a bit, but it's difficult to tell because he cannot open his eyes. We saw him at 4 am and he still hadn't eaten since 6 am on Thursday morning, which really bothered me. They are giving him fluids and ensuring he continues to receive nutrients. But he's lost quite a bit of weight and is still very out of it without any sedation or pain medication. It's all self induced sedation on his part where he has slept non-stop since the surgery. Part of me worries that he's hurting or fallen into a coma, but the doctors only seem concerned that he hasn't woken up yet.

We will continue to know more as time progresses. Please keep the prayers coming!

Much Love,
Rachel and Joshua

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.

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

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

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