Appointment Update

We brought Drew to see Dr. Bob today. He said she looked wonderful! He also said it looks like surgery will be when she is about1. It just depends on if the doctors think they can get to the spot where the hole is without causing damage to other parts of her heart. The hole is in the hardest spot in the heart to get to. So if the surgeons think it is still too hard to get to we will just wait and see.
Dr. Bob did say that another heart cath will be needed but not until right before the surgery.
We go in 2 months to do and echo and they will review it with the surgeons and we will know more then.

Pictures

1 POUND!!!!!!!!!!!!!!!!!!

We had Drew's appointment yesterday with Dr. Dalal and she gained 1 pound in 2 weeks! I was so excited. Drew still has to have surgery just not this month. The doc said they would do the surgery when she was 1. Ummm.... I immediately said I am not sure if I like that idea. I told her thant was hurricane season and I did not want to be back in New Orleans then. She said we will do it this summer. So I guess June or July????
We meet with Dr. Bob on Monday so we will see what he has to say also.
Thank you to all of you who keep up with this blog. Sometimes I just ramble to get it it all out of my head. You are ALL great!

Happy Easter!

Easter Pictures

a quickr pickr post

More Pics!

Update

Drew's appointment was okay. She only gained 4 ounces in 2 weeks which is still not so great. The dr. said if she does not gain much more in a month we will for sure have to do a surgery soon. We have an another appt. on the 19th so we will see if she gained any weight by then.

More!

This was the very 1st time she ever held her bottle!!!!!!!

Pictures!

She is 3!!!

Happy Birthday Rylie!!
She is 3 already. How sad is that? They grow up way too fast.

Update

Steve got a call from Dr. Bob yesterday. He had changed around some of her meds Monday and called to say to change them back. He talked to her cardiologist Dr. Dalal here in town and she wanted her put back on the meds.
Anyway, Dr. Bob said that she is in more congestive heart failure right now then she was before. Which is news to us b/c every visit we go to they say she looks great and good etc. Which means surgery in a month or 2. So unless she starts gaining lots of weight really soon she will be in surgery in a month or two. I am not ready. She really looks like she is normal and healthy. I just dont get it. They said she may look good now but when it hits her it will be fast and they want to do surgery when she is healthier rather than when she is sicker. Why does my baby have to go through all of this? I just want to have a normal life. I mean we knew she would have to have surgery in 3-6 months but that seemed so far away. And then there is the whole thing with how well she can handle surgery. We almost lost her in this last surgery.
My heart is so heavy.
Please pray she starts gaining weight really fast.

Weekly update

We had Drew's appt. today with Dr. Bob. He changed around some of her meds which was good for me. I now don't have to worry about giving her one of her meds at 6 am. He said she looks great and was very social. She is not gaining weight so hopefully by changing the meds she will start to gain now.

She is doing great!!! She has started to roll over alot more and is even sitting up on her own for a good while. Her feeding are still the same, she does LOVE to eat her baby food. If she could do without the formula she definately would and have no problem with eating just baby food. :)

Still no word on when her next surgery would be it is just another waiting game.

Weekly update

No appointments this week.
She does feel like she is getting heavier so it will be nice to see how much she weighs next week.
She has an appointment with Dr. Bob on monday. He does clinics in Lafayette once a month and we were able to get an appointment.
I will update next week.

Pictures!

Weekly update

Since not much is going on with Drew right now, thank goodness, I am going to post once a week.
She had her Pediatric Cardiologists check yesterday. She looked great and she gained 5 ounces in 2 weeks. Not much but it is something. She is finally staring to get a bit of her voice back and the coughing has subsided. She is also back to sleeping all the way through the night, YAY!
I will try to post some pictures today or tomorrow.

Pictures

Here are a few pictures of Miss Rylie Roo.

Update

Drew is doing great!
She is still hoarse and is coughing alot but other than that everything is fine.
She is starting to eat more out of her bottle and now eats 1 whole jar of babyfood at a sitting. She is now up to 12 pounds 8 ounces. She was at 11 pounds 13 ounces when she was discharged a couple weeks ago.

2 OUNCES!!!!

She drank 2 ounces yesterday!!!!!! That is the most she has ever drank. I sure hope she keeps it up.
She is doing great with her baby food too. She is up to half the jar.
Keep up the great work Drew!

Had her first bite of food

She did not care for it too much. She refuses to eat the rice cereal so we went straight to veggies. She LOVES peas. Still not doing good with the bottle though. I am hoping that after eating for a bit that she will realize it is okay.

WE ARE HOME!

They released us around 2 pm yesterday.
Rylie was so extremely excited when we walked in to get her and then she saw Drew and could barely contain herself.
Once again thank you all for the support!