Wednesday, April 17, 2013

Finding a new normal

I was so glad to be home after being with Christian in the hospital for two weeks.  Everything has made me nervous, but he has done great.  We have portable oxygen tanks so we can go to Grammy and Papa's or in the car (which we try not to do very much since he doesn't breathe as well in the carseat).  And we've been trying to keep him at home as much as possible.  We didn't want him getting sick before his surgery.  We haven't really had visitors since we came home from Primary's.  We wanted to keep this boy healthy!

{All of our portable oxygen tanks}

{The oxygen machine he was on at home}

{The 50 foot long tubing that was connected from the oxygen machine to Christian's nasal cannula - we had to drag it all around the house! It was a big pain}

{We kept finding him like this :)  He'd pull it down from his nose to his mouth}
The doctors originally said they wanted to wait six weeks for Christian's surgery (actually, it went from 4-6 weeks to two weeks to them not wanting us to even leave the hospital before his surgery and then back to six weeks).  He had been eating a lot better since I had been mostly pumping and feeding him through a bottle.  I would nurse two or three times a day so he wouldn't "forget" how to nurse.  But bottle feeding was so much easier for him.  For the most part, he wouldn't get sweaty when he ate through a bottle, only when he nursed.
Christian would have crying episodes that would just wipe him out.  Crying would take so much energy from him and nothing would calm him down except holding and bouncing him.  But after these episodes, he would crash and need to sleep.  His blood was just pumping so hard when he'd get worked up and since his aorta was narrow, it was hard for his heart to pump that blood.

{Asleep with his arms up in the air!  Can you tell he was taking most of his naps in the swing?}
One good thing was that Christian continued to grow and gain weight while we were home.  Heart babies usually have a hard time gaining weight.  But I think since he was mostly eating from a bottle, it was helping him eat more.  We saw  Dr. Newbold weekly while we were home so he could keep a close eye on him and make sure everything looked good.
We saw Dr. Etheridge, a Cardiologist from Primary's that comes down to St. George monthly, the beginning of April.  They did an EKG and an echo and then we saw the doctor.  She said that, looking at his chart, she was not expecting to see such a healthy looking baby.  That was really relieving and comforting to us.  She said that since he was doing so well, she didn't see any reason to wait any longer for the surgery.  I was so ready to stop thinking about this surgery and to put it behind us.  I wanted my baby to feel better, even though he didn't even know any different.

{Getting his echo done in St. George}

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