Saturday, January 14, 2012
Nana hands
Had to post a picture of his Nana giving him love. She's been so hesitant to touch him, afraid she will hurt him. It was a big step for her to touch him!
Blood Pressure (and other stuff)
Update this morning...
Biggun is having another rough day. The nurse let me know that this isn't unexpected and they are prepared for this, but it still troubles us to see little JD in distress.
His Oscillator settings had to be increased again and he's now on 48% oxygen. They can't physically hear for the murmur with him on this specific machine, so they have to do it based on the blood pressure. Right now his systolic and diastolic pressure has a huge gap. I didn't know much about this, so here's a brief explanation.
The systolic and diastolic pressures are used to determine the "maximum" and "minimum" flow. Systolic is the maximum flow of blood pressure as it travels through the body and the diastolic is the minimum pressure of blood. So when they look at his systolic pressure versus his diastolic, the gap between the two is large. Right now, it varies, but say for instance it was 48/19 - They would look at the gap between the two numbers and how large it is to determine whether he still has a murmur. Anything greater than 25 is what they look for on a murmur.
They were able to ween down on the dopamine, which is great. And his fluid intake looks good as well. The nurse also told me a fun fact - the oscillator machine was designed by a doctor who saw his dog panting and wondered how he was able to do that and not fall over. It was found that the sharp intake of breath repeatedly was beneficial to premature lung development and they use it to simulate the way a dog pants to promote lung health. I thought that was a cute fact.. So next time you look at your dog, know that they inspired a major advancement in medical science!
Right now, Biggun is expected to have ups and downs. Today is a down day, and his stats are looking pretty dismal. We are hopeful that he will bounce back, and they are going to do another round of Indocin to see if they can get that flap closed, but it's looking more and more like Biggun is going to have heart surgery to resolve the flap issue. Keep your fingers crossed and us in your prayers that it isn't necessary.
Thank you for the love and support. We were recently able to pay for our stay here for another two weeks because of the generosity of some people out there, and I cannot even begin to express how thankful we are to you for allowing us to do that. We are stronger because of the people who stand with us.
Please keep the prayers coming!
Much Love,
Rachel and Joshua
Biggun is having another rough day. The nurse let me know that this isn't unexpected and they are prepared for this, but it still troubles us to see little JD in distress.
His Oscillator settings had to be increased again and he's now on 48% oxygen. They can't physically hear for the murmur with him on this specific machine, so they have to do it based on the blood pressure. Right now his systolic and diastolic pressure has a huge gap. I didn't know much about this, so here's a brief explanation.
The systolic and diastolic pressures are used to determine the "maximum" and "minimum" flow. Systolic is the maximum flow of blood pressure as it travels through the body and the diastolic is the minimum pressure of blood. So when they look at his systolic pressure versus his diastolic, the gap between the two is large. Right now, it varies, but say for instance it was 48/19 - They would look at the gap between the two numbers and how large it is to determine whether he still has a murmur. Anything greater than 25 is what they look for on a murmur.
They were able to ween down on the dopamine, which is great. And his fluid intake looks good as well. The nurse also told me a fun fact - the oscillator machine was designed by a doctor who saw his dog panting and wondered how he was able to do that and not fall over. It was found that the sharp intake of breath repeatedly was beneficial to premature lung development and they use it to simulate the way a dog pants to promote lung health. I thought that was a cute fact.. So next time you look at your dog, know that they inspired a major advancement in medical science!
Right now, Biggun is expected to have ups and downs. Today is a down day, and his stats are looking pretty dismal. We are hopeful that he will bounce back, and they are going to do another round of Indocin to see if they can get that flap closed, but it's looking more and more like Biggun is going to have heart surgery to resolve the flap issue. Keep your fingers crossed and us in your prayers that it isn't necessary.
Thank you for the love and support. We were recently able to pay for our stay here for another two weeks because of the generosity of some people out there, and I cannot even begin to express how thankful we are to you for allowing us to do that. We are stronger because of the people who stand with us.
Please keep the prayers coming!
Much Love,
Rachel and Joshua
Friday, January 13, 2012
Day Wrap Up
Today was a rough day for Biggun. They confirmed the intraventricular hemhorrage level II officially and the doctor informed us they are continuing the Indocin to see if that finishes closing up the PDA. They monitor the bleed by doing measurements of head circumfrence for variations in head size.
He got another blood transfusion to work out the issue with his blood pressure, and his fluids are up a little, so they are giving him caffeine to try to get some of the liquid out. That one struck me as a little strange... Biggun being on morphine (to help keep him still on the ventilator), caffeine (but not the great Coka Cola kind) and Ativan (also to keep him calm, but not in a groovy way).
They went up again on the rate of his breathing on the ventilator. I'm not sure how much more they can go up with that. He'll get checked repeatedly through the night on his murmur to see where that is.
So keep your prayers in. I am hoping tomorrow morning fares better than this morning did, but if not, we'll come prepared.
Much Love,
Rachel and Joshua
He got another blood transfusion to work out the issue with his blood pressure, and his fluids are up a little, so they are giving him caffeine to try to get some of the liquid out. That one struck me as a little strange... Biggun being on morphine (to help keep him still on the ventilator), caffeine (but not the great Coka Cola kind) and Ativan (also to keep him calm, but not in a groovy way).
They went up again on the rate of his breathing on the ventilator. I'm not sure how much more they can go up with that. He'll get checked repeatedly through the night on his murmur to see where that is.
So keep your prayers in. I am hoping tomorrow morning fares better than this morning did, but if not, we'll come prepared.
Much Love,
Rachel and Joshua
intraventricular hemorrhage level 2
When we came in, Biggun was back on the oscillator vent. He was given triple the dopamine for his size that he should have received, and he has a intraventricular hemorrhage level 2 bleed on his right ventricle.
We have a lot of unanswered questions right now, but please send us your prayers. They cant do anything about the bleed, and we hope it just goes away. We will not know long term effects until he hits developmental milestones.
Please send prayers
Much Love,
Rachel and Joshua
We have a lot of unanswered questions right now, but please send us your prayers. They cant do anything about the bleed, and we hope it just goes away. We will not know long term effects until he hits developmental milestones.
Please send prayers
Much Love,
Rachel and Joshua
Thursday, January 12, 2012
Where ARE you?
So another status update..
Had a little bit of a rough morning. I went to call the NICU this morning to ask how little Biggun was doing, and the nurse told me that he was okay, had issues on the ventilator, and then when I asked about Indocin and how he was taking the medication, her response was that it was something I should discuss with the doctor the next time I was there. So I said okie dokie! Ate some breakfast, ran upstairs and insisted we go to the hospital at 7 am (to mom and daddy Josh).
Here's where it gets a little silly...
I'm trying to wake Josh up.. "Josh, you need to know I'm leaving. You need to know where I'm going."
"Uggghhh... Okay.... Got it..........." (zzzzz)
"No, really, Josh, you need to listen."
"...Uh huh..." (zzzzzz)
So I resigned myself to a passed out husband, got dressed and roused mom to take me to the hospital (still can't drive just yet). And right before I leave, I'm explaining to Josh-
"The nurse said I needed to talk to the doctor about the Indocin. I don't know why she didn't tell me over the phone, but I told her I'm coming in. I don't know what's going on."
Again, still the sound of soft snores, so I kissed him and left.
I went downstairs, mom got a cup of coffee, and then we went out front to wait for the shuttle. It's supposed to come every 15 minutes, but I'm an idiot who read the paper wrong, and we're waiting outside in the cold for awhile. We tried to get back in, but Josh has the key to get inside and into the room. Our only choice was to wait until 7 am when the gate opens up to the garage for us to get to the car and then mom can physically drive me.
So we make it to the car, and we're driving down the road, and I get a phone call from Josh.
"Hello?"
"Hey, where are you?"
And, I might have flipped out a little bit....
"What do you MEAN, where am I? I TOLD you I'm heading to the hospital!"
"Wait, what? I know. I'm AT the hospital. Where are YOU?"
So my husband, shortly after I walked out, managed to wake up, realize the situation, throw on his ABUs and race to the hospital... Meanwhile, passing us by the front of the hospital while we stupidly waited for the shuttle that never came.
By the time I got to the hospital, it was found the nurse just meant I needed to talk to the doctor about his medication, but nothing serious was going on with the medication. Josh was a little upset about that, and told her she really scared me and never to do that to me again. (Gooooo hubby!)
So after THAT little scare...
He still has a murmur. The medication SEEMS to be working, but not at the speed with which they would like. Tonight (in under an hour), he gets his last dose of Indocin and then tomorrow he will have a head ultrasound to determine how much if any the flap has shrunk. If it hasn't, they would consider surgery. If it has, they might determine if another round of medication is enough. It sounds like the doctor is hopeful the medication will work, though. He seems to be responding really well to medication treatments.
I asked to speak to the doctor today, and she explained the heart issue is a big deal, and we'll get that resolved tomorrow one way or another. The other big issue is his lungs. They want to put him into a study about nitrous oxide gas and with a double-blind, how it affects long term effects of lung damage. Josh wasn't there for that explanation, so the doctor will explain it to him, and we were considering allowing it since it doesn't seem to hurt anything. But the ventilator he is on seems to only be increasing, not decreasing. The rate of his breathing is going up, not down. We're hoping the issues with his heart resolve this, but for now, it's a concern that the rate is having to be increased so much.
Everything else seems to be going good. It's been a crazy day for us, and I'll never forget arriving to the hospital this morning. Hopped on the elevator after mom dropped me off, raced upstairs, and when the elevator doors opened, there is Joshua in his ABUs, waiting for me after having beat me to the hospital. I have never been more proud in my life!
Thanks for the continued prayers and support. Baby Biggun needs them!
Much Love,
Rachel and Joshua
Had a little bit of a rough morning. I went to call the NICU this morning to ask how little Biggun was doing, and the nurse told me that he was okay, had issues on the ventilator, and then when I asked about Indocin and how he was taking the medication, her response was that it was something I should discuss with the doctor the next time I was there. So I said okie dokie! Ate some breakfast, ran upstairs and insisted we go to the hospital at 7 am (to mom and daddy Josh).
Here's where it gets a little silly...
I'm trying to wake Josh up.. "Josh, you need to know I'm leaving. You need to know where I'm going."
"Uggghhh... Okay.... Got it..........." (zzzzz)
"No, really, Josh, you need to listen."
"...Uh huh..." (zzzzzz)
So I resigned myself to a passed out husband, got dressed and roused mom to take me to the hospital (still can't drive just yet). And right before I leave, I'm explaining to Josh-
"The nurse said I needed to talk to the doctor about the Indocin. I don't know why she didn't tell me over the phone, but I told her I'm coming in. I don't know what's going on."
Again, still the sound of soft snores, so I kissed him and left.
I went downstairs, mom got a cup of coffee, and then we went out front to wait for the shuttle. It's supposed to come every 15 minutes, but I'm an idiot who read the paper wrong, and we're waiting outside in the cold for awhile. We tried to get back in, but Josh has the key to get inside and into the room. Our only choice was to wait until 7 am when the gate opens up to the garage for us to get to the car and then mom can physically drive me.
So we make it to the car, and we're driving down the road, and I get a phone call from Josh.
"Hello?"
"Hey, where are you?"
And, I might have flipped out a little bit....
"What do you MEAN, where am I? I TOLD you I'm heading to the hospital!"
"Wait, what? I know. I'm AT the hospital. Where are YOU?"
So my husband, shortly after I walked out, managed to wake up, realize the situation, throw on his ABUs and race to the hospital... Meanwhile, passing us by the front of the hospital while we stupidly waited for the shuttle that never came.
By the time I got to the hospital, it was found the nurse just meant I needed to talk to the doctor about his medication, but nothing serious was going on with the medication. Josh was a little upset about that, and told her she really scared me and never to do that to me again. (Gooooo hubby!)
So after THAT little scare...
He still has a murmur. The medication SEEMS to be working, but not at the speed with which they would like. Tonight (in under an hour), he gets his last dose of Indocin and then tomorrow he will have a head ultrasound to determine how much if any the flap has shrunk. If it hasn't, they would consider surgery. If it has, they might determine if another round of medication is enough. It sounds like the doctor is hopeful the medication will work, though. He seems to be responding really well to medication treatments.
I asked to speak to the doctor today, and she explained the heart issue is a big deal, and we'll get that resolved tomorrow one way or another. The other big issue is his lungs. They want to put him into a study about nitrous oxide gas and with a double-blind, how it affects long term effects of lung damage. Josh wasn't there for that explanation, so the doctor will explain it to him, and we were considering allowing it since it doesn't seem to hurt anything. But the ventilator he is on seems to only be increasing, not decreasing. The rate of his breathing is going up, not down. We're hoping the issues with his heart resolve this, but for now, it's a concern that the rate is having to be increased so much.
Everything else seems to be going good. It's been a crazy day for us, and I'll never forget arriving to the hospital this morning. Hopped on the elevator after mom dropped me off, raced upstairs, and when the elevator doors opened, there is Joshua in his ABUs, waiting for me after having beat me to the hospital. I have never been more proud in my life!
Thanks for the continued prayers and support. Baby Biggun needs them!
Much Love,
Rachel and Joshua
Wednesday, January 11, 2012
Status Update for January 11th
Update on little Biggun-
The results of the ultrasound came back and the murmur is very present. They started him on Indocin tonight, he'll get another course in 12 hours and then the last course tomorrow night. They checked to see if the medication was working, and so far it isn't, but they will keep hoping.
They will try Indocin treatments twice, and if that doesn't work, we are looking at surgery. They will do that surgery bedside, but we are hoping to avoid it.
His blood transfusion went well. His hematocrit numbers are back up, and they seem to be working well at keeping his blood pressure in check. His respiration is still holding too much carbon dioxide, so they've increased the rate on his ventilator. Currently he's at 45, and they keep increasing it to counteract the carbon dioxide in his blood.
Right now, we're looking for lots of prayers. Please keep Biggun in yours for the next few days. We would really appreciate it!
Much Love,
Rachel and Joshua
The results of the ultrasound came back and the murmur is very present. They started him on Indocin tonight, he'll get another course in 12 hours and then the last course tomorrow night. They checked to see if the medication was working, and so far it isn't, but they will keep hoping.
They will try Indocin treatments twice, and if that doesn't work, we are looking at surgery. They will do that surgery bedside, but we are hoping to avoid it.
His blood transfusion went well. His hematocrit numbers are back up, and they seem to be working well at keeping his blood pressure in check. His respiration is still holding too much carbon dioxide, so they've increased the rate on his ventilator. Currently he's at 45, and they keep increasing it to counteract the carbon dioxide in his blood.
Right now, we're looking for lots of prayers. Please keep Biggun in yours for the next few days. We would really appreciate it!
Much Love,
Rachel and Joshua
Honeymoon
Looks like biggun had a rough night. The nurse said the honeymoon phase is over.
His systolic pressure is severely low, and they hope it's because his PDA valve is still open. He had an ultrasound this morning to determine whether that was the case. If so, they will try to treat with medicine to close that valve. If not, they will have to close it surgically.
Right now, because of the open valve, that duct is allowing blood to freely flow into his lungs. Its making his pressure low and his body work harder. So he had to be put on higher oxygen on the ventilator because his body can't keep up. The hope is that steroids will be enough to close that valve.
In the meantime, he cannot eat. So we expect him to lose even more weight. They will have to give him Indocin for blood pressure and right now he is getting another blood transfusion.
Please send prayers. Little Biggun is definitely going to need them today.
Much Love,
Rachel and Joshua
His systolic pressure is severely low, and they hope it's because his PDA valve is still open. He had an ultrasound this morning to determine whether that was the case. If so, they will try to treat with medicine to close that valve. If not, they will have to close it surgically.
Right now, because of the open valve, that duct is allowing blood to freely flow into his lungs. Its making his pressure low and his body work harder. So he had to be put on higher oxygen on the ventilator because his body can't keep up. The hope is that steroids will be enough to close that valve.
In the meantime, he cannot eat. So we expect him to lose even more weight. They will have to give him Indocin for blood pressure and right now he is getting another blood transfusion.
Please send prayers. Little Biggun is definitely going to need them today.
Much Love,
Rachel and Joshua
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