Update #2

They took one of the paralizing drugs off today so the sedation is wearing off. We can't let Drew see us b/c they want her to have minmal stimulation.We didn't get to stay in the unit much today. If she sees us she will get worked up so we just left b/c it was too much for me to see her like that and not be able to do anything about it. :( She is still doing good as far as everything else goes. They will probably extubate her in the morning.

Monday Update

Drew had another good night. She had an echo done this morning, the surgeons are pleased with her VSD and PA repair.

Hopefully they will try to extabate her today and remove her chest tubes.

Sunday update

Drew is doing great!
Dr. Caspi said they will extabate her tomorrow and see how she does.
I think Steve put up a few pictures on Flickr if you want to see her.
Thank you, thank you, and thank you for all of your prayers. Our Baby Drew is doing so well. If we get anymore information we will update the blog… Check back tomorrow for more.

Saturday Morning Update

Drew had a good night. She is well on her way to a speedy recovery.

ICU

Hi everyone, Amber again. Brandy just called, Drew is out of surgery and in ICU. When they first took her off of bypass, her heart would not start because she still had a little hole. But now the VSD (defect) is closed and she is in ICU. The next 24 hours are critical, so please continue to pray for her. Brandy said that her & Steve were about to go in and see her and that she would call tomorrow, so I will update again after talking to her!

Drew Still In Surgery

Hi everyone! This is Amber updating for Brandy & Steve. They don't have internet access right now. Brandy said that they are on their second attempt to take Drew of off bypass & hopefully close her chest up. They are saying an hour and a half longer which is about 5:30 pm. Keep lifting her up in prayer. Will update again when I find out more, so please check back!

Time Flies

Wow this last week week has flown by.
I have a few more things to pack up and we will be heading out the door in a couple of hours.
We will update the blog as soon as possible or we will get someone to do it for us. The normal VSD closer is about a 4 hour surgery but to get through scar tissue and also to repair the pulmonary artery where the band was will take some extra time. We are looking at around 6 hours maybe longer. Please pray that everything goes smoothly in surgery tomorrow and that she is able to easily come back off of bypass with no problems.
Thank you all for your support and prayers.

Update

Drew is doing great! She is eating sooo much it is crazy.
I talked to the surgeon's nurse today and they are going to admit us on Thursday at 2 pm and have Drew stay over night on the peds floor. We would have had to leave here at around 3:30 am and she said that was crazy, I agree.

Please keep Drew in your prayers. Her surgery is at 8 am on Friday morning. And please pray that she doesn't have the complications she had with the last surgery and that the surgery goes as planned with no kinks.

Pictures

More Photo's

Photo's

We have a surgery date

When we got home yesterday we had a message from Deb (surgeons nurse) that her surgery is scheduled for next friday July 28. The surgery time is 8am which means we have to be there at 6 am. We will have to leave home at 3:30am YIKES!!!! Man that is going to be a super long day. They don't want us to stay overnight in a hotel b/c no telling what kind of germs are lingering there.
Drew is doing great today, she bounced right back. I am having the hardest time keeping still she is all over the place.
So once again we will be on lockdown until her surgery.
I will post some more pics once I can get them off the camera onto the computer.

Drew's Heart Cath Update

Drew’s heart cath went well, The Doctors where really encouraged with her overall recovery. The cath showed excellent blood flow and the surgeon feels her vsd should be relatively easy to close. We still don’t have a surgery date; it should be scheduled within the month.

Cath date and time

The head nurse just called and gave me the cath information. The cath is this Wednesday at 1:00 pm. We have to be there at 11am so this will make it easier on us not having to wake up at 4 am to drive to New Orleans.

Please keep Drew in your prayers.

New cath and surgery date

First of all let me tell you all about the latest drama. I took Drew to the ER the week before her surgery b/c she had that virus, they gave her fluids and sent her home. We go to do the heart cath and they cancel b/c of her weight lose and her not looking her best. Well last wednesday A nurse from Children's called and said to take her to the ER to check and see if she needed more fluids. I took her and the ER Doc did bloodwork and said she was fine and sent us home. We went friday to her pediatrician to just go and do a routine check after you have gone to the ER. The pediatrician was out of ton and the Doc taking his place was the ER doc from the first visit 2 weeks ago. I told her Drew had diarrhea still and she wanted to admit Drew to the hospital b/c of that. They said that was the only way to stop it. I did not feel comfortable with making that kind of decision so I made a couple phone calls to the cardiologists and they said to hold off on that until Monday. I just could not make that decision, I was somewhat confused b/c if they should have done that 2 days before when we were in the ER (different doc). I am so glad we decided to wait b/c she is completely fine now and eating EVERYTHING! She is now back to her original weight or actually 1 ounce shy but still that is awesome. She still only weighs 14 pounds 10 ounces but that is way better than the 13 lbs. 08 ounces that she had dropped down to.

Drew's heart cath is being scheduled for sometime during the day on Wednesday and her open heart surgery will be on July 28. Dr. Bob rathered to 2 procedures be spaced apart to give her time to rest which I totally agree with. The heart cath should be an in and out procedure so we won't need to stay overnight, but you never know and they may want to keep her for just one night.

We are now on lockdown so Drew doesn't catch any germs, sorry for missing any parties and such we can't take a chance.

Thank you all for your prayers, we apprecite each and every one of them.

We are home

We drove to New Orleans last night and got to the hospital at 6:45 this morning. Drew was admitted and had bloodwork and x-rays done before she was going to go for the cath. Dr. Bob came to get us to sign the consent forms and I told him all what Drew had gone through. He was very troubled and ended up cancelling both the cath and the surgery. He said the cath would have been okay to do but there was no point in putting her through the stress when it wasn't necessary until a few days before surgery.
His biggest concern was that she lost 1 pound and 3 ounces in a week and a half, which is basically 10% of her body weight. Can you imagine yourself losing that much weight in only a little over a week?????
What we did not know and now do is that when she had diahrea (sp?) we should have stopped the Lasix (a dieuretic). That just made her lose weight even faster. It had crossed my mind a few days back but let it go b/c the ER doctor and her pediatrician did not saying anything about stopping the medication. Just goes to show you should always listen to your instincts.
We are now scheduled to go back to New Orleans on August 21 for the cath and the 22nd for the surgery. That was the soonest they had avaiable. For this next month we will not be getting out of the house with Drew very much it is too risky with all the viruses roaming around town.
Oh and her party will not be till October. :( I don't want to chance her getting sick if we do a party before the surgery and recovery is 6 weeks. Which this is the least of our woories but thought I would let you all now since my last post was about her party.

Thank you all for your support and prayers. We love you all!

Drew's birthday party

Drew's birthday is on August 10. Since she will still be recovering form her surgery then I am planning on pushing her party back to September. For some reason I am having a hard time figuring out which saturday to do it. The 3 dates I am trying to decide on is September 9, 16, 23. Since everyone is invited maybe you can all help me come to a decision. You can email me at brandy@compfx.com. Just let me know which weekend would or wouldn't work and I will make my decision based on that.
And if you want to come let me know b/c I keep trying to make a list and my stressed out brain won't let me do it. Pease add your address to the reply to. Thanks everyone. I know this is kind of tacky but just please oblige me. :) Like I said everyone is invited.

Surgery is still on

I called the surgeons nurse today to let her know how drew was doing and she said we will keep the sugery date as is.
Drew is still throwing up once at night but not b/c she is sick, or this is my theory anyway. She wakes up at night and coughs to get our attention and makes herself throw up. This is not unusual for her she has done it before. So I am just going to switch her feeds to day time and just a few ounces at night. Today she has already had 4 ounces by mouth and she has only been awake for a couple of hours. If I can get her to drink a lot more today we should be fine.

So the heart cath is tuesday and the open heart surgery to close her VSD is Thursday.

Please please please pray for Drew to have an easy cath, successful surgery, and fast recovery.

ER trip this morning

Rylie caught the nasty bug on friday night that has been going around and of course we ALL ended up with it. Drew got sick on saturday night and has not quite recouped from it. She has thrown up once every night since then but is fine during the day. I think that her stomach shrunk and she is just not able to tolerate her night feeds. She went from getting to 24 ounces a day to barely 12.

She woke us up this morning at 5:45 throwing up and I noticed her diaper was completely dry so I started to worry that she might be dehydrated. Normally she wakes up with a soaking wet diaper and her diaper I changed before I put her to bed was only a tiny bit wet. So I took her to the ER at 6:30 this morning. All her bloodwork came back fine and just showed she had a virus. She was not dehydrated and they said she was fine. They have her 30 cc's of fluids in her IV and sent us home. I probably over reacted but I did not want to take any chances with her being her surgery is next week.
If she is not completely better by Friday we will have to cancel the surgery and won't be able to get another surgery date until August.

Please pray that she gets completely healthy and strong for her upcoming surgery.