I took Gracie in to the pediatrician on Friday. She weighed 11 lbs. 12 oz. (8th percentile) and 24 inches long (37th percentile). She is doing well. We are now on a monthly basis seeing either the cardiologist or the pediatrician once a month, which is wonderful! Thanks for all the advice on giving Gracie a bottle. I have a few problems as to why I don't think she will come off the feeding tube anytime soon. The main one is that she gets about 8 ounces of milk in the night on her continuous feed and I don't think she would take a bolus feed in the night to even come close to that. I can't make up for that during the day either because of her reflux. Also, I know she wouldn't be able to take her meds by mouth, at least until she gets the whole swallowing thing down. So in the meantime, I try a little everyday but she hates it. I think I am going to make an appointment with a Speech Therapist in Sandy and take everyone's ideas with me and see what we can figure out.
p.s. I forgot to say that Gracie got 5 shots for her immunizations!! (the ones she should've gotten at 2 months old) She cried a little but what are 5 shots to her? Nothin!
8 comments:
So glad to hear she is gaining weight and growing tall!! That's the most important part. The feeding thing will come (at least that's what I keep hearing). I also hear "just be patient, it takes time"..so we can be patient together. Owen is also on continuous during the night because there is no way I'm going to get up and down all night long with the pump. He also can't go up on volume in the day or else he would be refluxing even moreso than usual. Oh.. these babies are giving us a run for our money.
Good luck with speech... they always have fantastic ideas to work with.
Andrea
Always nice to have a successful check up and know things are going well.
Wow! 11 lbs...that was Ainsley at 1 month old!! Good news...she gets to be a baby longer! Sometimes it seems like it goes by too darn fast. Sounds like all is going well, just don't let the speech therapist teach her how to talk quite yet!! Good luck.
Kristin
So much good news, with the exception of bottle feeding. But keep on trying!! One of these days, Gracie will surprise you no doubt. Great pictures, Max. And will Callie "lovin' up" on Gracie, I can see Gracie will get used to that too!
I am getting use to the feeding tube taped to her face. She looks cute with it, I would miss it if it was gone.
Ok, if you cant make up positive stuff, then what else can we do.
Wow, I read through a few previous posts. It brought back lots of memories. Jack was also on oxygen and feeding tube between the first 2 surgeries. What a pain. But remember, it's temporary. The feeding issues are frustrating. Just keep plugging away. It'll get better. Jack just had his 10th birthday. You can see pics of him on my blog. Have a great week!
What a tiny baby girl. I like what someone else said, at least she gets to stay a baby longer :) Glad she is growing. Hopefully speech has some helpful hints for you.
Oh... One more thing... Sorry...
Noah's Doctors wanted Noah on a continuous feed during the night too. It wasn't until we stopped that and switched to only bolus feeds that he started to eat more (and be able to tolerate larger quantities at one time). His Transplant Coordinator told me that a lot of kids have a hard time when they are getting continuous feeds. These kids just tend to do better on Bolus Only...
Either way... good luck again. I just adore Gracie. I've followed her story since the beginning.
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