More pictures

It has been requested that I show pictures of the family.
Here you go!

Heart Cath finally scheduled

It is scheduled for January 13 at 9 am in New Orleans. We have to be there at 7 am so we will most probably leave the night before.
Please keep Drew in your prayers, thank you.

Some more cute pictures

Happy Birthday to me!!

Drew rolled completely over today for the first time, happy birthday to me. That was a great present!
Then she fell asleep. LOL!
We had a great christmas, lots of toys for both girls.
Her next surgery is approaching pretty quick, January 23. I am getting quite nervous but it will be a relief once it is all over with.

Have a Great New Years!

Weekly appt. update

Drew saw Dr. Bares (pedi) on thursday. She gained 1 1/2 pounds since her last visit there 2 weeks before. :O
She is doing great! Rylie had a little cold and it was quite hard to keep her away from her baby sister.
All is well and we are awaiting Christmas. We are so blessed to have our baby girl home for Christmas.

MERRY CHRISTMAS!!!!!!!!

Weekly Appointment

Drew had her appt. today with the pediatric cardiolgist.
She checked out good. She lost a liitle bit of weight but not much.
Thanks for checking in on Drew.
Have a Happy Holiday!!!!

She is growing too fast

I put Drew in her jumper and she loved it. She is also her way to rolling onto her tummy.
She has an appointment the the Pediatric Cardiologist on Friday. I will update more then. Hopefully she has gained some more weight.

The heart cath will most probably the first week in January.

Address Request

I am sending out Christmas Cards and I don't have everyone's address. Could you please email me your address if you would like a christmas card with a pic of the girls.
brandy@compfx.com

Drew update:
She is doing great! She lost a little bit of weight but that may have been because it was a different doctors scale. Drew goes back on Friday to her Pediatric cardiolgist. We will see what she has to say. We still have not scheduled her heart cath. Dr. Bob wants to do it in January closer to her surgery.

Have a great holiday season.

Drew's first follow-up visit

We met with the new Pediatric Cardiologist on Friday, Dr. Dalal. She is very nice, although I was there for 3 hours. She did an echo (u/s), and EKG and also made me go and get updated xrays of her chest. Hopefully all of her other appointments don't take that long.
Drew has gained 1 pound in 2 weeks, which is great. She said she looked good and she would see in in a few weeks. We go to the pedi on thursday for another check up. I think just to make sure she is gaining properly.
Drew is such a great baby. She is still sleeping completely through the night and has laughed out loud for us on occasion.
We still have not made the appointment for the heart cath yet, just waiting on them to give us a call.

2nd major surgery scheduled

I talked to the surgeons yesterday and they have Drew scheduled to repair her VSD (hole in her heart). It is set for January 23, 2006. It is not set in stone. We have to go and get a heart cath done in New Orleans sometime in December. It is an in and out procedure so no staying overnight. YAY!!! SO, if the heart cath presents no more problems and she gains the weight she needs to then we will keep the surgery date.

Drew is adjusting great!

This pic was on the way home from New Orleans.



I asked Rylie to please put Drew's socks in her room and this is where I found them a few minutes later.






















Drew stares at Rylie all day long, she loves her big sis.
She sleeps ALL night long and is pretty laid back like Rylie was at her age.

WE ARE HOME!!!!!!!!!!!!!

Drew was released from the hospital yesterday!
The two docotrs came in yesterday and asked Steve and I when we would like to go home and we looked at each other and both said NOW at the same time. LOL
We wasted no time and got out of there before they had a chance to change their minds. :)
The clot is still there but they are not concerned about it at all. It will be removed when she has her next surgery at the beginning of next year. We have about 2 months of being at home and then we have to head back to New Orleans. Oh well we will enjoy every second of her being at home till then.
Thank you to everyone for all of your prayers and support which got us where we are today. We love you all Thank you!

G-Tube

Drew had surgery yesterday.... Everything went well. She was in some pain last night and throughout the day. They will try to feed her tomorrow and hopefully give us an indication when we can go home.

We look forward to enjoying out little miracle at home for the holidays before we go through her final surgery early next year.

Thanks for your prayers and support...We will keep you posted.

surgery cancelled

Well only until monday.
This past monday we gave the doctors the go ahead to do the surgery for the g tube.
Well since she was on asprin they could not do it till yesterday. They came to get her and shortly after that they told us that there was a scheduling problem and we would have to wait till tomorrow.
We wake up this morning at around 7 to get ready for her surgery. At 8:30 we still had not heard anything. Mind you they stopped her feedings at 1 am this morning so she was not a happy camper. Well the nurse calls surgery and they said she wasn't on the schedule till 3 pm. Umm.....Hello people she has not eaten since 1 am. So they decided to feed her at 9. We waited all day again she was starving come 3 o'clock. The doctor comes in at 4 pm and says they can't do the surgery today b/c surgery is backed up. I almost hit the roof! The only reason we are still here is to get that surgery. The surgery is for Monday now b/c they don't do them on weekends. The doctor mentioned maybe tomorrow if they can get the staff here but that probably won't happen.
Sorry for the vent but I am just so frustrated and ready to move on.

We moved

Drew was moved to pediatrics on the 6th floor. She is no longer hooked up to monitors, which is a good thing but made for a very restless night for Steve and I. LOL She has her own room where Steve and I can stay with her 24/7.
She is still not eating very much at all, only around 10 cc's each time.
On Monday the doctors are going to take the next step which is probably going to be inserting a g-tube. That way we can go home alot sooner. They said if she was close to taking in all of her feedings they would let us go home with the tube in her nose. Since she is not we will have to have the surgery done to get a g tube put in. We keep battling in ours minds on if this is the right decision or not. I hate to put her through another surgery (very minor surgery) but it may just have to be done.
Please keep her in your prayers and pray that we make the right decision.

Video Swallow Study (VSS)

What is a video swallow study?
A video swallow study uses X-rays to take pictures of your child's throat while he / she is eating and drinking. It lets the doctor and therapist take a careful look at how your child swallows.

Before the test
Before you come to the hospital, explain to your child what will happen. For young children, use simple words and explain what will happen, only shortly before the test.
Your child may not eat or drink anything for 4 hours before the test, including gum, mints or candy. If your child receives tube feedings, they should be stopped 4 hours prior to the test.
Remember to bring your child's eating utensils and favorite food / beverage choices. Please bring a food or drink your child has trouble swallowing.

During the test

Your child will be put into a special chair that will adjust to a similar position he / she normally eats or drinks in at home (i.e., sitting, lying). Your child's food will be mixed with a strawberry or fruit-flavored liquid called barium. It is necessary to mix the barium with the food or liquid so that it will highlight your child's throat on the X-rays.
A parent or family member may be asked to feed your child the barium-prepared items so that your child is more comfortable during the test. A therapist will be there during the test. The therapist may ask your child to change position or to try different textured foods / liquids to help find the safest and best way for your child to eat.
This test does not hurt, but your child may dislike the taste of the food or liquid. You are encouraged to stay with your child during the test. Children are often more cooperative and less apprehensive when a loved one is with them. If you are pregnant, you will have to leave the room during the pictures. It is helpful to have another caregiver watch the child's siblings so you can be with your child.
The test usually takes about 30-45 minutes.
It is possible that during the procedure your child may experience some discomfort. Please tell the doctor, nurse or technologist if pain occurs so it can be evaluated.

After the test
When all the X-ray pictures are taken, the radiologist and the therapist may review the tape with you, if time allows. The technologist or therapist will tell you when you may leave. Your child may return to normal daily activities. A written report of the results will be available to your child's doctor within 24 hours. He / she will contact you about the results.
It is possible that your child's stool may appear to be whitish in color for 24-48 hours after the test due to the barium that he / she has swallowed. Whitish stool is not cause for concern. Encouraging your child to drink fluids will allow his / her stool to return to normal within a short time.

Quick Update

Drew has been slowing down on her eatings during the past few days. She is having a "swallowing study" perfomed today to see if she has problems swallowing or reflux issues.

Drew was able to eat!

Drew ate 25 cc's on her first try yesterday... She ate 65 cc's today. She is slowly working her way up...

Coming Home Soon!

We are back in New Orleans at Childrens Hospital, Drew is doing great.

We met with the surgeons and cardiologists this morning and they are all in agreement with Drew's future plans. They want to get her off antiboditics immediatly and take another blood culture in a few days. They would like to wait to perform surgery to close her VSD in a couple months allowing her to get bigger and stronger.

They are not concerned at all about the clot in her heart. It is attatched well to the wall of her heart, they feel there is a small chance that it would dislodge.

We are meeting with a Occupational Theraopist tomorrow to try to get Drew to start feeding.

Once her blood cultures come back negative for infection and she re-learns how to feed, we will be coming home.

Thank you for all your prayers and support...
Please pray Drew starts to feed without any complications..

Back to New Orleans

Drew is being transported back to New Orleans tomorrow.
She will be at Children's Hospital in New Orleans, close to the zoo. We will be doing a consult with Dr. Bob before anything is set in stone. He was Drew's doctor at Tulane. He is going to consult with the surgeon and see if Drew can go through another surgery.
The clot in her heart is still there and the docotr here wants it removed. There is a bit of arguement as to wether or not the clot needs to be removed. The VSD is still in a tricky spot and Dr. Bob does not want the surgery to be done on the clot if the can't do the VSD surgery. So either both surgery's will be done or none at all.
Steve and I will be staying at the hospital in an empty hospital room being there are no hotels readily available.
Please keep us in your prayers.
We will update when we can. I am not sure if we will be able to get internet access.