Improvement!

FRIDAY, APRIL 9, 2010 9:23 AM, CDT

Liam had a break-through seizure so they've raised his dose of phenobarbital.

FRIDAY, APRIL 9, 2010 12:35 PM, CDT

Well I got quite a surprise when I got to the hospital (especially since I talked to the nurse before I left the house)...they got in to do Liam's CPT and breathing treatment and discovered his nasal prongs were around his chin. The nurse didn't even know because he was sat-ing 98. So, they're trying him without any CPAP or ventilation! His bed is on 29% oxygen but he has no cannula or anything and he appears to be doing well. This leads them to believe the two "incidents" yesterday were, indeed, seizures.

So, I got to see him for the very first time without a bunch of tape on his face or something in his nose/mouth (except the OG tubes) and he looks EXACTLY like Shane as a baby except with much more hair...

Two Steps Forward, One Step Back

THURSDAY, APRIL 8, 2010 2:26 PM, CDT

Two steps forward, one step back. I'm now convinced I'm not allowed to get any extra sleep. Every time I sleep in then come to the hospital, something happens.

Liam has had two really good days since coming off the ventilator. And I got to hold him again yesterday for another 2.5 hours. But, this morning, he dropped his o2 sats and heartrate too low - low enough they had to bag him. So, they turned up the settings on the CPAP machine from 4 to 6. He did really good until 11:00 (right after I got here) when he had his CPT - he again dropped his o2 sats and his heartrate, this time lower than this morning. I was in here for the whole episode. His o2 was in the teens and twenties and he was a purple-y blue grey color and struggling. This time they bagged him for several minutes before his sats came back up. The head neo came in and spoke with us and they took him off the CPAP and put him on Nasal-Prong Ventilation. This is where he is on a ventilator but it goes through prongs in his nose, rather than a breathing tube down his throat. If he has any more "episodes," they'll re-intubate him and put him back on the regular ventilator. So, Shane and I are sitting here with him, hoping to avoid the ventilator. He is also now getting aerosol breathing treatments - one to reduce the inflammation and wheezing in his lungs and the other to reduce the swelling in his throat.

Now, how on Earth am I supposed to go back to work on Monday?

April 6, 2010

TUESDAY, APRIL 6, 2010 7:27 PM, CDT

Liam is doing well on CPAP, still. And today, after 23 days of life here on earth, I got to hold him for the very first time! I did cuddle care (aka kangaroo care) with him for 2 1/2 hours! He did really well and his oxygen was turned down lower than it's been since being put on CPAP.

April 5, 2010

MONDAY, APRIL 5, 2010 3:02 PM, CDT

Liam is off the vent! He is now on CPAP and seems to be tolerating it well. They're taking his PICC line out after this round of antibiotics finishes infusing. As long as his blood gas at 5:00 PM is good, they'll take the UAC line out of his belly button tonight... then I can hold him tomorrow (they said they like to wait 6 hours before holding after the UAC comes out). Oh, and I got to hear him cry today! Yes, I know this is normally not a good thing, but it was music to my ears to hear his soft little cry!

April 4, 2010

SUNDAY, APRIL 4, 2010 2:42 PM, CDT

Sorry for no update yesterday.

Yesterday and today (so far) have been quiet days for Liam. They're slowly weaning down the ventilator settings right now rather than pulling the vent to see if he'll sink or swim.

He is 3 weeks old today! I'm still anxiously waiting to be able to hold him for the first time. The UAC line should come out in the next couple days and as long as he's stable enough, I MIGHT be able to hold him - it can't come soon enough, though, because 21 days without holding your child seems like a lifetime!

April 2, 2010

FRIDAY, APRIL 2, 2010 10:56 PM, CDT

Aside from being a "touch-me-not" today, Liam had a pretty good day. His o2 sats were good all day unless someone touched him - then they'd drop big time, so they had to sedate him a few times today. They are turning off all his fluids at midnight tonight and he'll be getting his nourishment from milk.

April Fool's Day

THURSDAY, APRIL 1, 2010 6:30 PM, CDT

Today was a MUCH better day for us...Liam is feeling so much better...so good that he pulled his ET Tube out and they had to put a new one in! Anyway, we got the results of his head ultrasound from yesterday. He had a Grade 1 Brain Bleed that showed up on an earlier ultrasound and this ultrasound showed it has improved slightly. Grade 1 is the smallest brain bleed - the nurse said it's like a bruise on the brain. The doctor did say this is NOT what's causing his seizures, especially if it's improved.