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

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

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

January 10th

Was able to see the pipsqueak again today, faring well.

He's still on a ventilator, and while they were keeping him at room oxygen, they moved him up to 34% right before I left because he had too much carbon dioxide in his system. They're trying to encourage him to breathe harder, so they raised it just a bit.

He is still losing weight, although they say that is normal.

Bilirubin is back up, so he'll be under some UV lights again tomorrow. His body is also tolerating breast milk well, and he has been having wet diapers, which is a GREAT sign for his digestion.

Keep the prayers coming! He has a couple set backs, but they are the good, fixable kinds! The doctor is concerned about the flap on his heart, and believes they may need to look at permanently fixing that, and I'm hoping God will find a way to resolve that through medication and not surgery. Cross your fingers for us!

Much Love,
Rachel and Joshua

Size Matters

Love eternally...

Little Biggun is wearing dad's wedding ring to show his love~

Stable

Last 24 hours have been awesome. Biggun is on room air and doing well. No d-statting, so no immediate counter measures in the last 24 hours. His weight dropped again so he's now 780 grams, or 1 lb 11 oz. They assure me this is normal and expected.

Keep the prayers coming! They are obviously working!

Much Love,
Rachel and Joshua

Ronald McDonald

Just got the call. Ronald McDonald house made room available for us. Looks like we now have a place to stay while little Biggun is fighting! We are so lucky to be so blessed. Keep the prayers coming, they are obviously working!

Much Love,
Rachel and Joshua