No big reports, so I'm going to let the pictures do the talking!!
Much Love,
Rachel and Joshua
Saturday, January 28, 2012
Kangaroo kare!
Biggun had an amazing day!
No big reports, so I'm going to let the pictures do the talking!!
Much Love,
Rachel and Joshua
No big reports, so I'm going to let the pictures do the talking!!
Much Love,
Rachel and Joshua
Friday, January 27, 2012
Big day for Biggun!
I may have been quarantined from the hospital for a few days, but that hasn't stopped Biggun from being a rock star! This morning with Papa as witness, little Biggun had his tube removed from his throat and was switched to a CPAP line instead.
That means as soon as he shows he has responded well to the transition, we can HOLD him. They are telling us as early as tomorrow!
His x-ray looked fantastic. Still some unusual pockets of air, but the PIE appears resolved and his lungs look so dramatically better than they did even a week ago.
His feelings are now every 3 hours instead of every 6, which is also a huge change. As he tolerates it, they will increase the volume (and fatten that baby up!).
I hope my next update includes us holding him! Keep him in your prayers!
Much Love,
Rachel and Joshua
That means as soon as he shows he has responded well to the transition, we can HOLD him. They are telling us as early as tomorrow!
His x-ray looked fantastic. Still some unusual pockets of air, but the PIE appears resolved and his lungs look so dramatically better than they did even a week ago.
His feelings are now every 3 hours instead of every 6, which is also a huge change. As he tolerates it, they will increase the volume (and fatten that baby up!).
I hope my next update includes us holding him! Keep him in your prayers!
Much Love,
Rachel and Joshua
Wednesday, January 25, 2012
No being sick!
Well, I did that thing you're not supposed to. I managed to get sick while Biggun is in the hospital, and because it is viral, I've been banned from the NICU until Saturday and only if I am better by then. Everything is okay.. I had to go to the ER this morning (thank you Papa for taking me) because I was severely dehydrated and having some tachycardia, so they hydrated me and I requested to go home so I could rest.
Papa Greg is ensuring Biggun has someone to watch over him. So far, Biggun has been on 22% oxygen and very nearly off the oscillator. The last X-Ray that came back was showing a partial lung collapse, so it sounds like they might not be able to take him off the oscillator as soon as they had hoped, but he is still responding very well to lowering the amplitude and percentage of oxygen he is receiving.
They are still weening him off the versed and hoping to supplement ativan as needed when they need to keep him calm. He's also tolerating the breast milk really well, and the ultrasound they did on his kidneys show they are in perfect functioning order.
Missing the bug so much, but Papa has been sending me pictures to keep me company. It's definitely harder when I'm not there to see and hear all the latest news, and calling for an update isn't nearly as effective.
Thank you for the continual prayers.
Much Love,
Rachel and Joshua
Papa Greg is ensuring Biggun has someone to watch over him. So far, Biggun has been on 22% oxygen and very nearly off the oscillator. The last X-Ray that came back was showing a partial lung collapse, so it sounds like they might not be able to take him off the oscillator as soon as they had hoped, but he is still responding very well to lowering the amplitude and percentage of oxygen he is receiving.
They are still weening him off the versed and hoping to supplement ativan as needed when they need to keep him calm. He's also tolerating the breast milk really well, and the ultrasound they did on his kidneys show they are in perfect functioning order.
Missing the bug so much, but Papa has been sending me pictures to keep me company. It's definitely harder when I'm not there to see and hear all the latest news, and calling for an update isn't nearly as effective.
Thank you for the continual prayers.
Much Love,
Rachel and Joshua
Tuesday, January 24, 2012
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
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
Monday, January 23, 2012
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!
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!
Saturday, January 21, 2012
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
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
Friday, January 20, 2012
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
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
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