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!

Finally!

After 3 long weeks.
They are releasing Drew tomorrow! The doctor came in today and took out her last iv line and her stitches. She is back to her self and sleeping great at night.
Rylie is also so ready for us to come home. Every night when we talk to her on the phone she asks if we are coming to bring her home “tomorrow”. We are so ready to get to something more normal.
Drew’s next surgery will not be for at least 3 more months, not very long. They will just keep an eye on her till then and decide whether or not she needs the last surgery at that time.
A big THANKS to all of you who have followed us down this road with Drew. Your prayers and support mean the world to us.

Trying again

Drew's doctor came in today and said they will try to send us up to the PEDS floor tomorrow morning. So please pray she stays healthy. We may possibly go home Sunday or Monday!!
Drew is doing great and ALL smiles all day long. They took out her oxygen cannula and that made her so happy, she was a whole different child compared to the past week.

Please keep us in your prayers. Thank you!

Heart Cath Images

Thursday

We will not be going to the peds floors today. Yesterday the general surgeon changed out her feeding tube in her stomach to a different tube. She had a little bleeding on the outside of her stomach early in the day. The rest of the day she seemed kind of restless and at 6 pm she threw up about a liter of old blood. It was just pooling in her stomach till she finally couldn’t stand it anymore. She is fine now and shortly after the whole episode she was smiling and feeling MUCH better. That just pushed our stay a while longer b/c they had to stop her feeds. We are just ready to be home.

Tuesday Update

We were able to hold Drew this morning. The Doctor informed us that we would be going to the PEDS floor with Drew on Thursday. Hopefully we will be able to go home early next week.

Her X-ray’s have been clear and she has been holding her feeds well.

Sunday Update

Drew was intubated again on Thursday night; she was having a problem clearing the fluid in her lungs. Her tube is being pulled out this morning.

Edited to say-
They extubated her this morning and she is doing great. They put her back on oxygen and she is not happy about it. They did another xray at 4 pm today and it was still clear. It has to stay clear for quite a few days before they will take anymore steps forward.

Her breathingtube is out!!!!

They took her breathing tube out yesterday morning. I would have updated sooner but Drew has been keeping us very busy. They had to put a cannula in her nose to give her oxygen so she is not thrilled in the least to still have something on her face. She has been super fussy these last few days. We are still not able to hold her b/c of some of her iv lines and she is to young to understand why. Hopefully in the next few days we can hold her. They finally also started feeding her today.
Steve and I had a talk with her doctor last night and he said we may go home as soon as this coming Monday. We were shocked that we may go home sooner than we thought.
Besides the fussiness she is doing GREAT!!!!

Sunday Update

When we went to visit Drew this morning they had already removed her chest tubes! She looks so much better. They also took her off the paralyzing medication and by 3:00 PM she was completely awake. Drew was excited to see us after the week long nap she has taken… She was confused and started to cry at first but settled down and was very content as she looked back and forth between us. They may wean her of the ventilator as soon as tomorrow.

One step closer

The surgeons came in today and have decided that they are going to take out Drew's chest tubes tomorrow.
We are now one step closer to going home! I will update more after the procedure is done.

Friday Update

They were able to clear out quite a bit fluid in Drew's lungs by moving her lines. Her new X-ray looks much better. We will keep you posted.

YAY!!!

Drew's chest is now closed up!
The doctor is keeping an eye on her for the next 30 minutes. He said everything went well and that she is doing fine.
No word on the fluid on her lungs as of yet.
When we hear more we will update.

New Update

The surgeons made us sign a consent form today to close up her chest tomorrow (friday). She was doing great all day today until tonight. One side of her lungs is holding fluids so they had to up her meds and started giving her breathing treatments. We are praying that by tomorrow morning her lungs will be completely clear. She also having problems with her eyes. She is not able to close them all they way and I guess they are drying up a little bit and it looks like blisters in the corner of her eyeball. It is common and not a major problems but it still bugs me.
We are looking at about 3 more days after they close up her chest for her to be on the ventilator. That is if her lungs clear up. The longer they hold fluids the longer she stays on the vent.
Please keep praying for Drew. We love you all and thank you for all of your support.

SURGERY UPDATE

Sorry it took so long to update the blog, we have to been trying to spend every minute we can with Drew. The surgery Monday took 7 hours to complete and then she stayed in the operating room for an extra 5 hours. Drew had a hard time coming off of heart bypass, they tried 3 times. They were very concerned; she didn’t have any pulses in her legs so they put her on some serious blood pressure medicine and finally go a pulse. They couldn’t close up her chest until she stopped bleeding. Her chest was left open incase they have to go back in and do an emergency surgery. The surgeons stayed with her for 5 hours to make sure they didn’t have to hook her up to a heart & lung bypass machine. Thank you Lord for answering our prayers, we are so thankful she didn’t have to be put on the heart & lung bypass.

The surgeons were only able to repair her co-arctation due to the extensive scar tissue that took 2 hours to get through. The VSD surgery will have to wait till a later date, possibly in 2 months. They were also able to remove the PA banding.

They moved Drew to PICU around 10:30 and we were able to see her around 11:00. She really looks good. The first 48 hours are very critical and she is pulling through by the grace of God, Drew is a strong girl. The surgeon was completely amazed at how well she is doing. He said that there was no reason that she should have been alive after her first surgery. She only had a string size of blood flow going through her aorta on the right side of her heart and the PA band on the left side which constricted blood flow. Drew is our miracle baby!

Drew is doing very well considering the complications. Thank you for all your prayers and support. We will keep you posted. Right now they are keeping a close eye on her and will probably close her up in a few days. Her recovery will take at least three weeks.

Let me elaborate a little more

The heart cath procedure went great, no problems with the procedure. We did get some not so great news though. The surgery Drew had done when she was 2 weeks old needs to be redone. :( Which so far right now means instead of doing the VSD closer this monday the are going to do the coarctation repair instead. That means we will still have another surgery after this one. This is not what we wanted to hear at all. The 2 surgeries can be done together but this surgeon doesnt want to. So we either need to find a new surgeon or go ahead with this surgery on monday. Please keep us in your prayers and pray we make the right decision.

Heart Cath Update

The Heart Cath went well, Drew is doing good. They decided not to pursue a balloon on Drew's aorta, they will reconstruct her aorta when they repair the VSD.

We will stay tonight in the PEDS floor with Drew and go home tomorrow.

Thanks for all your prayers and support...

Change of plans

We are still leaving tonight to get the heart cath done tomorrow. The pedi gave her the go ahead, meaning she is not sick.
Dr. Bob decided he was going to do a ballon on her Aorta also. The first surgery they did right after she was born was to repair the arch of the arota well it is still kinda tight with not a great flow as they would have liked so the are going to put a ballon to stretch it a bit. Which means at least a one night stay in the PICU at Children's in New Orelans. Please keep Drew in your prayers as she will need all you can give her.

Heart cath

Is this friday. We decided to leave on Thursday night. The cath is scheduled for 9 am and they want us there for 7 am. It is an outpatient procedure so we will be coming home friday evening. Please pray that all goes well and we get back great results.

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.