Cardiologist appointment

...Darla Jane is doing well. She is at just over 8 lbs and the Dr is happy with her weight gain. They are keeping an eye on her aortic arch where they did the enlargement. There might be slight narrowing there, but so far things look ok. They will just monitor it and she will have a sedated echo cardiogram at her next appointment in a month. They generally check that with an upper and lower extremity blood pressure comparison but little miss wasn't giving up a blood pressure today. Her lower pulses were strong so they felt comfortable with things for now.
And her oxygen saturations we in the 78-82 range.

She continues to be a "supergirl"!

look mom! no tube.

i'm not sure what happend to those other posts, they drifted off into cyber space. but little darla jane is doing great with her bottle feeding. the tube has been out since yesterday, but she has been drinking from the bottle since monday. we are happy to get that last tube out and keep her tube free for a few months.
we have a cardiologist appointment on monday, so we will be able to check and make sure she is still on track with her weight gain. the effort it takes her to drink the bottle burns more calories than the tube feeding did. so that might slow the weight gain a little. if only we all had that problem.
but she is healthy and looking great!

look mom! no tube.

beautiful face. happy day.

now we need to hope that drinking from a bottle isn't burning too many calories and that darla jane is still doing well with her weight gain. we have a cardiologist appointment on monday. so we will see.

rumor has it.

that if darla jane keeps up with her bottle chugging than the feeding tube will come out tomorrow!

let's pray for that. ready. go.

look at how big i am!

when the nurse came on monday she was 7lb 13 oz~
and not only is she growing but...
Darla Jane is drinking from a bottle!! We haven't gotten to where she is exclusively bottle fed yet. It makes her a bit tired sometimes when she's drinking so her tube will stay in until she can exclusively bottle feed for a few days straight. Then we will know she won't need the tube. She had her first bottle on Saturday and drank about 1 ounce. Then she needed a nap. Sunday she tried a bottle 2 times, at about an ounce each time.
...full belly girl.

OK! so...I started writing this post on Monday morning, before the o.t. came to help with Darla Jane's feedings. When she came, we fed darla jane 1 ounce and she gulped it! ...no problem. The o.t. asked if we felt comfortable switch to on demand feeding with the bottle! ok. i was a bit nervous but little miss has done great! I am now updating this post at 11:30 on Tuesday and since the o.t. was here we have only done one tube feeding and that was because it was the middle of the night and I didn't want to have to wake her up to eat. So darla jane has been eating about 2 oz every three hours FROM A BOTTLE!!

post-op visit.

Darla Jane and I went up to primary children's today for her post op. visit. And you might be surprised about this, but she did great! The dr. said that she was looking good. Her oxygen saturation was even at 91. Because this is the critical time between now and when she has her second operation (the glenn) we will be meeting with either the cardiologist or our pediatrician at least every 2 weeks. So we set up an appointment with the cardiologist for 2 weeks from now.
The only thing that the dr. was concerned about was that she isn't gaining enough weight. Don't we all wish we had that problem. So, we have now bumped her feeds up to 20ccs an hour, from 17.
AND - she passed her swallow study so now we are working towards bottle feeding her. The NP switched her feeding tube to NG, where it now goes into her stomach. We will see how she tolerates that. Because she has never had milk in her stomach we need to slowly work up to it. We start on 24 hours of continues feed and after the first 24 hours we will switch to 2 hour bolus feeds, Where she gets 2 hours worth at once. If that is tolerated then the 24 hours after that will be 3 hour increments. Then...we can work on a bottle. Because it might tire her out, she could be bottle and tube for a little while until she can work up to 60 ccs or 2oz at a time every 3 hours. Step by step we'll climb the highest mountain... Go Darla Jane, Go!

The nurse had to look for the right tubing, so after the NJ tube came out I was able to snap a quick picture of Darla Jane completely tube free... Although she was mad and I couldn't get one without her binky.
the NP tried to place the tube in the other side of her nose this time to give the left side a break, but couldn't get it place. Poor little face... hopefully soon we will be able to take the tube out and her little cheek will be happier.

all clean.

incision is healing nicely.darla jane has some awesome hair!

and she didn't sleep well last night, maybe tonight.