Hike for Heroes

Hey guys! Long time!

But it's because it's nothing but good news! Biggun is on room air, no tube, and they are just working on getting him to take a bottle! He is now a whopping 4 lbs 8 oz. and growing! I'm now able to hold him as much as I want and he is getting so big!
The word on his eyesight was that everything looked good. It appears the Avastin worked its charm and he will get that 10 degrees of vision in front. He may still need glasses, but if he can see, who cares?! Woo!

I wanted to make a notable mention of an organization that helped us through this crisis. As you all know, I quit my
job the minute the baby was born so that I could be close to him. As a result, it put us in a dire financial situation. They swooped in and paid for a months worth of bills for us to take the edge off our financial debt. We owe a lot to them and I wanted to say thank you. Their website is www.activeheroes.org so if you get a chance to see how wonderful they are, I recommend taking a peek.

Thank you to all those who have been with me through this. I pray everyday the worst is over, and so far it's working. I couldn't have done it without the tremendous support from everyone here and the outpouring of love we have received. Thank you so much, from the bottom of my heart.

Much Love,
Rachel and Joshua

Graduated

So Biggun was moved to the intermediate nursery on Sunday. If we had any worry that it was too soon, we were relieved of that today!
He has graduated to an open crib, which means no more staring at him through glass! His temperature is a little low, but he should acclimate to it without issue in no time!
He also hasn't had a single desat, brady, or apnea episode! He had his oxygen tube removed and is officially on room air! They can put it back on it he needs it, but he seems to be ready to grow!
He is gaining 30-50 grams a day, so his weight is really picking up. They are giving him 32 ml of breast milk fortified with prolactive to make it higher in calories.
I've been in Utah seeing my two older boys this week, so Biggun decided he needed to get big and strong before I got back.
He still has issues with nippling, and he has minor desats when he's eating because he has not yet mastered the suck, swallow breathe routine yet, but he's learning fast.
Dr. Moshfeghi came by today. I wasn't able to speak with him personally, but he made it clear that he was very pleased with the progress and he felt really good about Biggun's progress.

Keep the prayers up! They are working!

Much Love,
Rachel and Joshua

Eye follow up

Good news! Avastin seems to be working!!!
Biggun has no plus in his left eye and mild pre plus in his right. So we have bought time for the laser to work AND we saved one if not both eyes!

This is the best news we have heard in some time!

Thank you for the prayers... Apparently, God is listening!

Much Love,
Rachel and Joshua

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.