Tuesday, December 20, 2011

Leah is 3!

Sorry, Lori, no pictures of the boy today.  I'm waiting until he doesn't have the NG tube anymore, and that should be in the next day or two.  I haven't fed him anything through it since Sunday, so give me a few more days of good bottle feeding and I will take it out and take some more pictures of him.

It was Leah's 3rd biurthday on December 3rd.  She wanted a Cinderella cake, and since we are simplifying everything around here because we don't sleep much, I just used a plastic princess that we got on a cake a few years ago instead of the Barbie that I usually use.  I did make an ice-cream cake for her, though.  She had a fun party with just us and one friend.  They had macaroni and cheese (by FAR Leah's favorite), ate cake, played dress-ups, and watched a movie.  Happy birthday cute girl!  Here she is blowing out her candles. (Yes, I finally figured out how to post videos again.  For some reason now, I have to "finalize" the video by saving it to my computer from the camera, opening it with Windows Live Movie Maker, and save it in there.  Kind of weird, but it works!)

video

Saturday, December 10, 2011

Being Home

Christopher has been home since the day before Thanksgiving.  I went to the hospital to get him and spent all day there learning how to feed him and give him his meds and everything.   As soon as we got home we had the oxygen delivered, the feeding equipment delivered, and a nurse came and taught me how to use the pump for the feeding tube.  It was a pretty overwhelming day!  He came home on 6 different medications, so for the first few days I was very busy.  I had to refill his food bag every four hours, pump every 3 hours, give him aspirin once a day, lasix and zantac twice a day, propranolol 3 times a day, and I weaned him off of his methadone and ativan over the next four days.  Plus I had to change his diaper and console him whenever he cried.  We aren't supposed to let him cry very much because it wastes calories that he needs very much.  Babies after this surgery burn 150 times more calories than "regular" babies, so in order for him to grow he needs to burn as few as possible with things like crying and shivering.  I also have to mix Progestimil with my breast milk to add more calories that way.

   
He is currently being fed through an NJ tube, which goes right into his intestines.  They start this way in order to slowly introduce food and to make sure they don't aspirate anything because the swallow reflex is still weak.  Christopher's cry was so weak when he left the hospital that they didn't even bother with a swallow study because they are pretty confident that he would have failed.  Apparently the nerve that makes the vocal cords work is the same nerve we use to swallow, and that nerve very commonly becomes inflammed after aortic arch repair.  His cry has slowly gotten stronger (although it's still pretty weak), and he is scheduled for a swallow study on the 12th of December.  A speech therapist has been working with him and she thinks he is doing really well and will be able to pass.  She put a few drops of breast milk on his binkie to get him to salivate and practice swallowing, and you should have seen his smile!  Anyway, if all goes well on Monday the tube will be pulled back to his stomach so that we can start introducing food slowly that way, then eventually it will be removed and he will be able to bottle feed.  I really wish I could just breast feed him, but he needs the added calories of the formula, so I will continue to pump.
The girls have been begging to hold him, so after having them wash their hands really well, we let them hold him for a minute.  They were in heaven.  They just adore their little brother.

 
He had his first follow-up appointment on Wednesday of this week and everything looked great.  They took him off the oxygen (yay for fewer tubes!).  They also had me go down to once a day on the lasix, and I gave him his last propranolol this morning.  The first night off the oxygen his sats got a little low, so I put it back on him, but since then he has been right where he should be on room air.
  Here his is after his sponge bath today in his Christmas outfit that a friend gave us.  Pretty handsome!  (Lori--I squeeze him now.  It doesn't hurt him, I promise.)