CPAP

Today was another good day. Biggun's lungs have done really well healing, and his oxygen intake is tapering down. They are trying to ween him on amplitude on the oscillator and if all goes well, he will be on a CPAP before the end of the week. For those who aren't familiar, that is no tube and a hose under the nose to help with oxygen instead! Which is one step closer to being able to hold him in our arms!

His feedings are going well. He's getting 2 CCs every four hours for four days and then he will move to feedings every three hours.

They are monitoring is carbon dioxide intake through the skin now instead of through a blood gas so there is no continual poking him later. They are also trying to ween him off his heated blanket to try to help him regulate his body temperature.

He is still on Versed to help with keeping him calm and still, but everything else is looking great. Even his x-rays are coming back indicating the PIE is almost resolved.

Keep the prayers coming!

Much Love,
Rachel and Joshua

First feeding

We have had an amazing day so far. Papa watched little Biggun grow this morning while Josh and I went up to Seaside to turn in my badge and blackberry for work. By the time we got back, Biggun had his first poop and was deemed healthy enough to begin feelings! So he now has a feeding tube and gets a whole 2 CCs every four hours of breastmilk.
When the NP for his case came by this morning, she said this was a complete 180 from Friday and they were excited by his progress. His oxygen is down, his dopamine is almost completely weened, and his lungs look good.
We were told he still had a large pocket of air in his lungs, but because his oxygen was so good, they consider it progress. They also didn't want to make any changes when he has been doing so well.
They still have him on versed because he doesn't like stimulation much at all. His lungs still have cystic pockets of air and they think they are a bit hazy, but he seems to respond to lasiks as a fix.
We talked to them about long term care. If he gets ROP, they will readily respond with surgery, and if he gets chronic lung disease, it's uncommon to send the babies home with oxygen. The nurse was very reassuring that no matter his long term issues, he is fighting and that's what they like to see.

Keep praying for us! It seems to be helping!

Much Love,
Rachel and Joshua

PS - pics of his first feeding!

Papa Greg is here

After a pretty blunt and grim conference with the doctor and staff, I called the person I could think of when things go wrong... Papa Greg.

And all day his stats have been stable and no interventions were necessary to sustain him. Joshua Sr. and I took turns reading Harry Potter to him, and he likes it so much his oxygen saturation kept above 95 and they had to keep turning his oxygen down. By the time we left, it was right below 40%, down 30% from the start of the day. They had to put ear muffs on him because he is super sensitive to sound and gets upset at loud noises.

The only negative thing that happened was while we were messing with him... Changing his diaper, suctioning his mouth, taking his temperature, rubbing aquafor on him, he was crying. He can't cry out loud because of the tubes in his lungs, so I had to watch him silently cry which seemed more heartbreaking.

But the day was 100 times better than yesterday. I have to wonder if maybe he was just waiting for his Papa to come see him. Hopefully he continues to have a set of good days. Pray for us!

Much Love,
Rachel and Joshua

Doctor wrap up

We had to have a meeting with Doctor Penn to wrap up how things have gone since Biggun got to the hospital. It's blunt, but here it is:

His PIE leak resolved but then another developed which suggests continued scarring of the lungs. He's also developed a pneumothorax in his right lung which is causing difficulty in treating the PIE. Right now they have him laying on his left side, but they warned us that if the lung collapses as they want it to, then he will be extremely unstable while his body recovers. But right now I watched him struggle at 90% oxygen with both lungs.
The x-rays have been hazy, indicating there is fluid in the lungs. They are keeping him off IV fluids and giving him Lasiks which is a diuretic to pull some of that out.
The site of the IV infiltrate will not have long term damage, but they've lost it as a site for IV for now.
His IVH bleed hasn't changed, which is good news. No blood has physically touched brain tissue, so they are optimistic.
Because he hasn't eaten yet, they are very worried about infection in his intestine. He has no "good" enzymes developed yet because my milk would have stimulated their creation, and they can't feed him yet because of the medication he has been on. So it's another wait and see.
They also tell us he will likely suffer ROP.. Which is a form of detachment of the retina from high doses of oxygen. He may need glasses, or he might just be blind. We won't know for awhile on that either.

She mentioned he is at greater risk for pulmonary hypertension and he will most definitely likely suffer from chronic lung disease at this point.

She also said we are still between morbidity and mortality. That we are still in danger of his stats being unstable and him taking a turn for the worse. He's a fighter, and constantly wiggling, which is good. But they give him Versed and morphine to calm him. Versed, if I spelled that right, is what they give to surgery patients who have anxiety before a procedure. So he's at least feeling pretty dang happy.

Please pray for us. She is being blunt and honest, but it still was very sobering to know we are still in a dangerous statistic zone.

Picture of the little guy doing a leg lift!

Much love,
Rachel and Joshua

Baptism

Little Biggun was baptized as Joshua Daniel today at 1:30 pm with dad and Ms. Amanda Samford present. It was a beautiful ceremony and he is doing well.

His update hasn't changed much. He's getting plasma right now, and his hand looks a little better. Still pretty puffy and they are treating the skin wound with antibiotic ointment.
He is still needing suction of his lungs because he can't cough up mucus. They are having issues getting a pulse ox from his left foot for some reason, but his toes are wiggling and he moves that foot, so they aren't sure why.

Oxygen is around 52%, and his BP is needing dopamine to stabilize again, but he is currently being weened off that in the hopes they can take him off it.

Sending love from California!

Much Love,
Rachel and Joshua

IV infiltrate

Biggun has had an off day, starting out at 68% oxygen and he is getting another head ultrasound tomorrow so that the doctor can follow up with us on Friday. The doctors do two weeks on, and his current doctor finishes her two weeks and wants to ensure she leaves us with a good cover of his condition and the last two weeks.

He also had an IV infiltrate during a plasma transfusion and they didn't realize it because of the tape so the plasma went into his arm for awhile before they realized what was going on. But when the nurse went to take the tape off to look at it, it pulled his skin off. The IV location can't be reutilized so they had to use one in his head.
We are heading back to the hospital just to check up on him, but just wanted to write a quick update.

Much love,
Rachel and Joshua

Post surgery recovery

Biggun is having some difficulty recovering from surgery. They have him on the oscillator again and he does really great for awhile and manages more at 21%, but then his oxygen saturation bottoms out and they have to bump him back to 60%. They say this is a result of recovering from surgery.
The PIE is slowly doing better. They gave him a diuretic to help clear up some of the haziness in his lungs, and the progress is already apparent. He's having x-rays every 12 hours to monitor the fluid build up in his lungs.
Nothing more on the IVH level 2. His follow up ultrasound is Friday, but they will do one sooner if his head circumference changes.
They gave him Ativan tonight to help with moving him. Every 12 hours they flip him in the bed so his head doesn't get stuck in one position.

He was pretty comatose while we were there, but he was on pain medication and Ativan. Hopefully time will make him feel better.

Pray for a speedy recovery!

Much love,
Rachel and Joshua

Note: on the photo, you can see the tiny incision under his arm. They spread his ribs to put the titanium clamp in.