Wednesday, May 18, 2011

Family of Five

On May 2 Linus graduated out of the CVICU and downstairs on the cardiac floor. While down there, he started teething and went on a bottle strike. Suddenly he went from eating so fast he vomited, to seeing the bottle and crying and arching his back to get away from it. Luckily he was still progressing with the other aspects of his recovery. Physical therapy was going well & his head and trunk strength was improving. The doctors started weaning him onto a protocol he could come home on. After a few scary bumps and adjustments, he started thriving. On Mother's Day he popped both of his lower front teeth. We hoped teething pain was causing his oral aversion and that he would start eating again. No such luck. The doctors decided that feeding issues would not keep him in the hospital and just focused on his meds. He was almost released on Wed, May 11, but he was sweaty, breathing 100/min, grumpy and agitated. These are symptoms of both withdrawal and unmanaged heart failure so tests had to be done to figure out which it was. "Luckily" it was determined to be withdrawals. They tweaked his meds and he was discharged the next day. After 2 open heart surgeries and 74 days in the hospital, our boy is finally home where he belongs.

Life has been pretty crazy around here. Luckily we were able to transfer Linus from a 3hr schedule to a 4 hour schedule without any major hassle so it meshes better with the big boys. Now he has a 2 hour tube feed every 4 hours instead of an hour and a half feed every 3 hrs. Still doesn't give us a ton of time in between, but it helps. He's down to only 6 meds and 2 of those, Methadone & Ativan, are slowly being weaned. Since he's been home, he's had a pediatrician's appointment and a cardiology follow up. Both went very well. He's 16lbs6oz and 26.25" long. His lungs are clear and his liver is less enlarged. Here's hoping he gets to stay home for a long long time.

Linus is not going to be fun to sleep with when he's older. Look at how this kid spreads out!
This naughty boy is chewing on his PICC line. He's lucky he's so cute.
I nearly had a heart attack when his alarms started going off saying he had a crazy fast and irregular heart rate. When I jumped up I saw he had pulled one of his EKG leads off and put it in his mouth. Brat.
My sweet little oxygen-free cherub.
Less wires and more energy meant it was time to reintroduce the jumper. He had a blast for about 5 minutes. Then he took a loooong nap.
The big boys and I decided it was high time to visit Linus and Mommy at the hospital. Linus was super grumpy and could've cared less that they were there, so they just amused themselves on a pallet.
Linus decided he would much rather wear cute clothes like his brothers instead of this creepy clown hospital gown.
So the next day he got his act together and came home .

Last night after a 2 week feeding strike, Linus not only drank from a bottle, he also held it by himself! We had literally talked the night before and decided he just wasn't going to drink from a bottle ever again and hoped he would take solids when the time was right.
Dex holding his bottle like a big boy.
Simon glaring at me for interrupting his soothing dinner time with stupid camera flashes.
Scenes like this prompted us to figure out a way to contain the babies. Why does he want to break the only 2 teeth he has by chewing metal?
The baby cage was then constructed.
Yay, for containment!
My happy boys. I freaking LOVE these kids!
Seeing them play together warms my heart. There were too many times when I truly believed this would never happen.
Dexter: "Um, I don't wanna chew on this giraffe, lets trade!"
Dexter: "Here, you take this one and you get this one...perfect!"
Simon recently found his toes.
Dexter found his, too.
Linus's tummy-time looks a lot like nap time. Poor kid can't lift his head even one millimeter off the mat. Practice makes perfect, though, so we'll just keep working at it.
See? He's not sleeping, I swear. :)
Linus thinks that baby in the mirror is mighty handsome.
After baby food we're giving the big boys a few sips of water from a little cup. They love it!
I'd say about half of Simon's drools out, but he still has a good time with it.
Dexter is really good at it and smiles so big when he's finished.
Linus got his first taste of avacado today. We can only put a teeny smear in his mouth since he has zero oral coordination. We're just so glad he's taking anything by mouth. I can't tell you what a huge accomplishment that is for him.
I love this kid's smile. He has the sweetest face!
He decided getting onto his knees is kinda fun after all. He's even done some rocking.
Not to be outdone, Simon has started getting on his hands and tip toes.

The other day I put Simon down on his belly and when I went back to him, he was sitting on his butt. We missed it the first few times, but I finally caught him in action.

Look at that proud face.