Heart Cath Images

Before & After coarc surgery!

Finally! NO MORE SURGERIES!

The surgeon came in today and said goodbye and that we won't see him again that his job was done. Man it was so good to hear that. I don't ever want to go to New Orleans again.
Drew is doing fabulous! We got home today at around 5 and wouldn't you know it we got stuck on the long bridge again. This time for 2 1/2 hours at a stand still. :(
We are now home and settling in. DRew thinks nothing is different and is crawling around everywhere. She even tried to climb on top of favorite spot, the treadmill.
ANother great thing is she drank 18 ounces of milk today!!!!!!!!!!! That is the most ever. It is like a switch went off instantly. Now that her heart is fixed she doesn't have to work so hard to drink her milk.

God is good! Thank you for all of your support and prayers.

We're Home!

Drew was released this afternoon.... Thanks for all the thoughts, prayers and support.

PEDS Floor

Drew is now on the PEDS floor, she was sent up around noon today. It looks like we will get to go home early next week!

No more chest tubes!

Drew's chest tubes were removed this morning... She may be moved to the PEDS floor tomorow... Hopefully we can go home on Monday!

Wednesday Update

Drew had another great day today! She is up to full feeds, They plan to take out her chest tubes tomorrow!

Drew

Breathing tube is out!

And boy when she saw us it was like complete meltdown time. She wanted to leave immediately she has a little bit of a voice back and she pointed and sais by-bye. :(
She cried for a bit and we got her calmed down and played with her for a while until she got so tired that she was a mess. She wouldn't fall asleep so they gave her some sleepy medicine and she fell right to sleep.
Her biggest thing right now is the oxygen cannula in her nose. If any of you know Drew well you know she hates bows in her hair, well this was along the same lines. We spent most of our time trying to distract her so she would not rip the tape off of her face. They might take it off today if her oxygen levels are fine, not sure yet.
Okay we are off to see our baby girl.

Tuesday Update

Drew's mid chest tube was removed early this morning. She wakes up periodically and looks around. If she sees us she immediately starts to cry. Brandy and I finally had to leave so she could sleep. They removed her breathing tube this afternoon around 2:45. Hopefully they will remove the rest of the chest tubes tomorrow. The unit is closed while they are admitting another patient… We can’t wait to see her without her breathing tube…

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.

Photo Gallery

Drew's appointment today

She is still not gaining weight, she only gained 3 ounces in 6 weeks. :(
Drew now weighs 14 pounds 11 ounces. Any ideas on how to fatten her up in the next 2 weeks would be appreciated.
Her surgery is scheduled forJuly 13th.
The cardiologist said she looked great but the not gaining weight thing is scareing her. She really does eat alot so I don't know what else to do. She gets 24 ounces of formula which is more concentrated to give her more calories. She eats at least a half of an avocado a day along with cheese and plain potatoes and lots more.
I mean maybe if the girl would stay still for 1/2 a second she might save some calories. I spend ALL day following her around, I wish I could lose the weight instead. LOL
Just please keep our little munchkin in your prayers.

Pictures!

Surgery time

We had a message on the answering machine while we were on vacation. Drew's heart cath is scheduled for July 11th and her surgery is at 7:15 am on July 13th. While we are no where near ready to hand Drew over to the surgeons again we have no choice. :( God will protect our sweet little girl and she will be in good hands. They say the surgery will last about 6 hours. Please start praying for a great surgery and fast recovery.

On a happier note we had a blast on vacation. We ended up going to Disney World. Drew had the best time. She cut a tooth and learned to point. The entire trip she was pointing at something, mainly balloons. :) She was so entertained with all the new sites that she never wanted to nap. Rylie loved the whole trip too. She kept telling Steve "Daddy this is the best ducation eber" . LOL We ended the trip by going to Destin for one day. All Drew wanted to do was eat the sand, Rylie was not a huge fan of the sand and ocean either but still had fun! Now just 2 weeks till her next surgery. :(

HI

We will be on vacation so i will probably not post much. We will be out of town so Drew's cardiologist appointment has been moved to July 28 instead of the 21st.

We did get a call from the surgeons nurse Deb in New Orleans. Drew will be having surgery in July between the 11th and the 20th. They could not give a definate date as they were still working on getting all the teams to coordinate a certain date.
Please keep Drew in your prayers. At least it is early in the season for hurricanes. :)

Summertime Fun!

Look at me!

Bath Time

Into and on top of everything

Update

Drew is doing good.
The girl is full of life and energy, she never stops moving. Since she has started crawling she thinks she can go anywhere including climbing on top of the treadmill and pulling up and anything and everything. She throughly enjoys playing in the pool which is a great way to cool her down since it is soooo hot outside.

Her next cardiologist appointment is June 21. I also have a call out to the surgeons to see if they reviewed her echo yet. Just waiting for the call back.

I will get some more pictures up soon.

Little stinker

First off Drew is officially crawling!!!!
Rylie has yet to understand that everything needs to be picked up off the floor.
Earlier today Drew crawled to Rylie's colors and threw a fit when i took them away.
She just found another one little stinker. The evidence is on her face.

Drew's first time in a pool

The water has finally warmed up enough. She had so much fun and was not happy when I took her out. I guess we will be spending lots of time outside this summer.

It won't be too much longer now. Drew is almost crawling, kinda like a catapillar crawl and an army crawl. She is one determined little girl!
NO word yet from the cardiologist , still waiting.

Today's Appointment

First off Drew gained just shy of another pound in the last month. WOOHOO!!!!!
The cardiologist was so surprised to see how great she looked right away.
They did an echo on her and the VSD (hole) has closed up a little bit but nothing significant.
The dr. is more worried at this point about her pulmonary artery, that was where they put a band to reduce blood flow. Well when they did her last surgery they snipped it but could not remove it b/c the pulmonary artery grew around the band. So basically what it comes down to is that area is not growing b/c of the band. So what is going to happen now is Dr. Dalal is going to call Dr. Caspi (surgeon at Children's) and send him the echo. They will discuss it and she will call me when they have a plan of action.
So we will just wait for news now.

Check back in tomorrow

Drew has a cardiologist appointment tomorrow. I will update with more info tomorrow.

Fun Saturday

Today's Appointment

I took Drew to the pediatrican today for a weight check. She is now 14 pounds! WOOHOO!!!!!
He said she looked great!

Rylie also had her 3 year old check up and was none too thrilled when the nurse had to poke her finger to get some blood to check for anemia. It took some convincing and a few stickers later for her to agree. LOL!

A Rylie Funny

Rylie walked up to me and said her butt hurt. (No telling why???)
About 10 minutes later I was in the kitchen and she walks in and says "Mama I need some gatorade, it will make my butt feel better."
She is such a nut! The things she says crack me up.

Drew has a pediatrician appt. tomorrow for a weight check. Hopefully she has gained a bit more.

Rylie and Drew

A little TOO much easter chocolate!

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!