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.

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.

Video of Rylie and Drew

Just click below

Video of Rylie & Drew

nothing

No new updates as of yet. They are supossed to do an ecocardiogram (ultrasound) today on her heart to see if the clot has changed.
I will update later when we get the results.

pictures!

I have come to the realization that I may never get a good picture with 2 kids. Someone is always moving.

Getting bigger

Drew now weighs 9 pounds 10 ounces!!!
She is starting to coo more and smile lots. She is sooooo adorable! She is such a happy baby.
Hopefully this week the doctor says that we can start trying to feed her out of a bottle. Her respiratory rate has gone down considerably. It used to be in the 80's and it is now in the 50's and even in the 40's and 30's at times.
So please pray the dcotor gives the go ahead on her feedings.

SAD :(

I don't even know where to start.
The doctor came and told us Monday that Drew was going to be coming home Thursday. This is exciting news right????
Well I slept there Monday night and learned how to use all of her equipment and how to give her meds and all. The doctor comes back yesterday and says that there has been a change of plans. He talked to the Infectious Disease doctor and she said Drew needs to have surgery to have the clot in her heart removed. Which was a big shock to us b/c the cardiologist never seemed worried about it, but that is a whole other story. So…. her doctor said they are not going to do an open heart surgery just for that that they might as well repair her hole in her heart too. I am okay with that, what I am not okay with is he wants to send us back to New Orleans. I do NOT want to go back there at all. We would be going to Children’s hospital which was not affected by the hurricane but still. He said they will have Children’s setup to do pediatric surgery in a few weeks. I can’t send my baby girl there. We are going to talk to the doctor about it and express how we feel and see if we can go somewhere else. He wants us to go to NO because that is where this “great” surgeon will be.
We will be camping out at women’s for the next month and then off to surgery and staying at that hospital for recovery for another month after that.
Could you all pray that this clot just dissolves so Drew doesn’t have to go through all of this.
The surgery for the whole in her heart can wait for a while as long as that clot dissolves.

Picture Overload

Drew's haircut

I finally am getting a chance to show off some pictures. I cut Drew's hair 2 weeks ago. The buzz cut the ER gave her was driving me nuts. I just cut off the rooster thingy she had going on on the top of her head. LOL!

Before:


After:

Almost there

Drew is almost 9 pounds. The nurse weighed her last night and she is now 8 pounds 15 ounces. The doc predicted that at 9 pounds the PA band should start working much better. Let's hope and pray that is true. Her respiratory rate is getting better little by little.
She is getting better with her days and nights. She stays awake for most of the day with short naps in between and goes to bed at around midnight. She is such a sweetheart. And she knows exactly what she wants. She has to have someone in the room with her at all times. I could be sitting in the room where she can not see me and right after I walk out she starts crying. She does it to the nurses too. LOL She is also now addicted to her mobile, she stares it down till we turn it on.
Thank you for continuing to pray for our baby girl. We love you all!

Thursday

Drew is doing good. She is staying at a steady 8 pounds 8 ounces and is really starting to fill out.

She had a MRI done yesterday and we got the results today. They found a small infart on the right side of her brain which mean she possibly had a small stroke the night we took her to the ER. They are not too worried about it because she has shown no signs of developmental delays. We will wait until she is older to follow up with a neurologist.

She tried rolling over today and is smiling alot. She still sleeps all day long and is awake most of the night, we will have to figure that one out soon before she comes home. Her respiratory rate is going down finally, showing she is on the right path. I will start posting pictures as soon as Steve shows me how. Haha!

Update

Sorry it took a while to give an update. Steve stayed with Drew during the hurricane. They lost power but had generators so everything kicked back on right away. Rylie and I stayed at my parents where the electricity went out at 2 am. Steve called us at 9 am and said that we had electricity at our house so we all packed up and headed to my house for a/c. Everyone is fine but a few family members of ours who lived where the hurricane hit have lost everything. :(
We have been trying to help them out the past couple of days.

I was finally able to go and see Drew yesterday. We bought her a bouncy seat and she was in heaven. My little sweet pea needed something else to do besides just lay there.
Dr Guietrez said he is going to do an MRI on her this week maybe tomorrow to check to make sure all of her brain function is okay due to the hard hit she took the night we brought her to the ER.
We did find out a few things about the night in the Er that we were never told until recently. The doctor told us she was "null of life" after they got an IV run in her and the breathing machine was the only reason she was alive. All of her numbers were so low that it was basically impossible for her to be alive. Thank you God for letting us keep our baby girl. She is a complete miracle.
Drew still has a bit of a road ahead of her so please keep her in your prayers.
The doctor said we will discuss things again when she reaches 9 pounds. Her weight is still up and down but she is almost there.

2 Hurricanes and she is only 6 weeks old

Drew is doing good. She slept most of the day yesterday.
I have to stay away from the hospital because I am sick with a head cold. I am not taking any chances on getting her sick. The nurses told us that Steve, Rylie, and I could all stay at the hospital if wanted to. If Rylie and I can stay in a seperate room then we might go and Steve would stay in Drew's room.
The hospital Drew is at has no plans to evacuate at this moment. The are working on figuring out an evacuation plan if need be but this time Drew would be on the bottom of the list because there are alot more babies in NICU sicker than her. We are just praying the hurricane doesn't turn to the right.

Update

Drew had surgery yesterday, everything went well. She now has a PIC line for future use. Now we don't have to worry about her loosing any more IV's.

She is doing really well. We are letting the antibodics finish their course. When her blood cultures come back negative for infection and she starts feeding better, she should be able to go home. (2-4 Weeks)

We will perform her final surgery once she get's a little stonger, giving this recent trama some time...(3-8 Months)

Picture

She is a pin cushion

My poor little Drew has turned into a pin cushion. :( They tried all last night to get a new iv line on Drew. Her little veins keep rolling over. They have now decided to do a central line which lasts longer than the previous lines which only last a few days because her veins keep blowing. They called the nurse who was certified in doing pic lines (central lines). She finally came around 3:30 today and tried 2 times while little Drew was screaming her head off. The whole process lasted 30 minutes and she could not get her vein. They decided to give her something to sedate her. Well, she threw that up but she still got enough to knock her out. They tried again, still nothing.
I just called there and the nurse said they were going to try again in an hour. Please pray that it works because if not she will have to have a surgery to get the line put in. And even then they won't be able to do that until Wednesday. They said the next step will be to shave her head and try and get a line there. Her hair finally just starting growing longer.
And just to top everything off now they have a potential hurricane headed our way.

Saturday Update

Well we got the wrong info. The clot is still there but the doctor is not too worried about it as long as it is not growing.
They were going to take her off of one of the antibiotics but her cutures came back with bacteria still growing. So they are going to do some more bloodwork.
The doctor told us today that she may have to have surgery in the next few weeks if she does not grow into that band on her artery. So right now we just need prayer that she starts gaining alot more weight.

Update

Drew is doing awesome; they removed her heart line with no complications. There also are no signs of a blood clot, and all her blood cultures came back negative for infection. She currently weights 8.5lbs. and her heart rate is dropping little by little each day. God is faithful to his Word, He has made Drew very strong… every obstacle that Drew faces, she overcomes. Thank you for your support & prayers...

Psalm 91

Psalm 91 - The Message
You who sit down in the High God's presence, spend the night in Shaddai's shadow, Say this: "GOD, you're my refuge. I trust in you and I'm safe!" That's right--He rescues you from hidden traps, shields you from deadly hazards. His huge outstretched arms protect you-- under them you're perfectly safe; his arms fend off all harm. Fear nothing--not wild wolves in the night, not flying arrows in the day, Not disease that prowls through the darkness, not disaster that erupts at high noon. Even though others succumb all around, drop like flies right and left, no harm will even graze you. You'll stand untouched, watch it all from a distance, watch the wicked turn into corpses. Yes, because GOD's your refuge, the High God your very own home, Evil can't get close to you, harm can't get through the door. He ordered his angels to guard you wherever you go. If you stumble, they'll catch you; their job is to keep you from falling. You'll walk unharmed among lions and snakes, and kick young lions and serpents from the path. "If you'll hold on to me for dear life," says GOD, "I'll get you out of any trouble. I'll give you the best of care if you'll only get to know and trust me. Call me and I'll answer, be at your side in bad times; I'll rescue you, then throw you a party. I'll give you a long life, give you a long drink of salvation!" A Sabbath song

Wednesday Update

Drew is having her heart line pulled out today; the doctor doesn't seem to be concerned about the clot or infection around the line.

She lost a little bit of weight overnight and is still breathing fast, Drew is strong and will gain the weight required… It just takes time.

Thank you for all the prayers and support…

Tuesday Update

Drew is going good! She has gained 7oz. in the past 24 hours.

Steve as a baby!

Drew is doing good, she gained 1 oz today...
Everyone is trying to decide who she looks like, so here is a picture of me as a baby. Please ignore the bedspread & outfit... Sorry Mom!

I will upload a picture of Brandy as soon I find one...

Sunday Update

Drew is looking good, she now has a full size crib in her hospital room! She is full of smiles and told me she is ready to come home! I spoke to Dr. Gutierrez this morning; all Drew's blood cultures came back negative for infection. They are keeping her on antibiotics for the next 3 weeks to make sure nothing comes back. Right now she needs to grow into the pulmonary band on her heart. If she doesn't gain weight she may have to have an additional surgery to adjust the banding. Let’s pray that she tolerates her feeds and gains some weight to allow the pulmanory band to do it's job...

Drew Schaaf

Friday Update

We were called to the hospital this morning. Drew is having some heart failure. They think the pulmonary band is to loose and want her to grow into it. She also has an infection in her heart (Endocarditis). They are giving her some antibotics and keeping a close eye on her. Please keep her in your prayers... Thank you for all the support

Tuesday Update

Drew is doing well, she is so sweet. I was able to hold her tonight; she kept looking me up and down the whole time.

Dr. Gutierrez, her cardiologist called and said she had a urinary track infection. He also mentioned that she has a small clot at the end of the catheter in her heart. He is worried about it enlarging or dislodging into her lungs. We are praying it will dissolve and not create any complications.

Brandy and I want to express our gratitude for everyone’s prayers and support. Thank you for helping us in providing food, furniture, clothing and shelter to our new friends from Tulane.

• Charlotte, Drew's nurse at Tulane found an apartment and moved in today.
• Baby Jackson's mom found a job and a place to live.
• The other doctors and nurses have found refuge with family and friends, and a few have purchased homes in the area.

Thanks again for pulling together and lending a hand.

Steve & Brandy Schaaf
215 Belle Maison Dr.
Lafayette, LA 70506

I’d rather 1% of 100 people’s effort than 100% of my own.
J. Paul Getty

Drew Schaaf

Monday update

She is now off of oxygen too. So no more tubes anywhere on her face. YAY!!!!
We went to see her today for a bit and she was sleeping so we did not stay that long because she needed to rest and get better and any little noise we made irritated her and woke her up. But she is doing good. The next hurdle we have to face is getting her to eat out of a bottle. If she does not do well with the bottle they will have to put a "button" on her which is a tube from her stomach and I will have to feed her through that. So please pray that she starts to eat on her own and can be released out of the hospital with a perfect bill of health.
The doctor told us today that she will remain in the hospital for at least another 8 days. So we will be working on her feedings for the next 8 days.
Drew looks absolutely great and so beautiful.
Thank you to everyone for all of your support.

Tulane doctor recounts chaos

Tulane doctor recounts chaos, uncertainty, eventual escape
By NED RANDOLPHnrandolph@theadvocate.com

Advocate business writer Tulane surgeon David Yu reported to work last Sunday with a pair of "scrubs" and a couple of changes of clothes. As most New Orleanians, he expected to be home in a few days.
Katrina developed into the most destructive hurricane to strike the United States, sending 135 mph winds pounding against the walls of Tulane University Hospital and Clinic where Yu spent most of the week.
His is one story of the thousands of people stranded in the chaos of what was once New Orleans.
When he went to bed Monday night, New Orleans was intact.
Five days later, the second-year resident had lost his house, was shot at while in a National Guard truck, and declined an airlift out of New Orleans to stay with his patients.
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Monday
The winds had knocked the power out, but Tulane Hospital was open, humming along on diesel generators.
The streets were dry, and some staff went home. The 150 patients and 300 to 400 staff members were safe, Yu said.
The Monday night breach of the 17th Street Canal changed the character of the storm and New Orleans forever.
"We woke up Tuesday morning, and the water was there," Yu said Saturday. "We lost generator power when the water rose."
The hospital's parent company, Columbia/HCA, ordered -- at it's own expense -- an airlift to remove the patients.
The critically-ill were lifted from the hospital's garage rooftop, as the streets filled with stranded people.
New Orleans residents waded through cruddy, waist-deep water, carrying belongings over their heads and looking for higher ground.
"There were thousands of people on the I-10 ramp on Tuesday and Wednesday, just standing out on the highway, waiting for someone to come get them," he said.
The hospital's emergency phones and lobby pay phones offered sporadic contact with Charity Hospital down the street. No one could reach University Hospital.
"We had no idea what was going on. We heard University had already evacuated," he said.
Tuesday night
In the darkness, nothing seemed to move. "It was surreal."
With only hand-held flashlights in the uncertain darkness, the staff and family members waited.
"Other than Tulane getting people out by private means, we didn't see any evacuation effort," he said.
Yu knew people were at the Superdome from pictures before the storm, but he couldn't see them. And then there were rumors of unrest.
That night, the airlift resumed.
Wednesday morning
"Every day from Wednesday to Friday, I don't know if it was rumors, but we were being told specifically that the Army was coming," he said.
On Wednesday night, they could see bus headlights on the interstate.
"We couldn't do anything after dark because of security," he said. "You could hear gunshots."
Yu and his colleagues were armed only with stethoscopes.
"Every morning I woke up expecting to see the Army in the streets. But no one came."
A National Guard unit on the ground was securing the Dome and "helping where they could," Yu said.
Critical patients were moved from Charity to the Tulane airlift.
"They told us Charity had 200 to 300 patients and almost 1,000 people. They hadn't had any central power or running water since the hurricane hit Monday morning," he said. "They were getting along with just a few generators hooked up to important equipment."
Even when Tulane airlifted away its staff members, Yu stayed behind with some others. They took all of Tulane's food and medicine to Charity by truck.
"Charity was in worse shape. They had much more critical injuries and more people … and less security," he said.
The place stunk of human waste. A stairwell was being used to store bodies after the basement morgue flooded, he said.
Department of Wildlife and Fisheries airboats started arriving with news of people stranded throughout the city.
By airboat, Yu delivered a Nextel two-way radio to the University Hospital surgery staff, where he saw the conditions were even worse than at Charity.
"They had the most patients and people. There were 300 to 400 patients and 1,100 staff and family members," he said.
"The building is much more closed in; it was hotter. The stench was worse," he said. "And they were surrounded by 10 to 12 feet of water because they're in a lower area."
Smoke from a fire filled the air.
"Fortunately, we didn't know the full devastation of the city," he said.
Thursday night
Another night and the worst for many. Mayor Ray Nagin gave a scathing interview on WWL-TV about the inadequate response by the federal government to save his city.
The president held a news conference, and reinforcements arrived.
Boats were landing at University Hospital, and helicopters touched down on its rooftop. "By 1 p.m. or 2 p.m. on Friday we got a call from University that they were clear," he said. "Eleven-hundred people had been evacuated in a half day."
Then the Army turned to Charity. Yu and other doctors carried patients on makeshift stretchers, tabletops and cubicle walls down the building's stairs, and loaded them onto air boats and trucks bound for the Tulane helipad.
Two at a time, patients were loaded onto a pickup truck, driven to the rooftop and loaded onto helicopters.
"They wanted four patients at a time, but we couldn't load them fast enough," he said.
At 6 p.m., Yu and the remaining staff were loaded unto boats and taken to buses. That's when he saw the crowds at the Convention Center.
"We knew there were large groups of people at the Dome and Convention Center … but going over the Crescent City Connection, I saw the crowd," he said. "It was unbelievable. Literally the length of the center, five or six blocks, there were just thousands of people."
Yu arrived in Baton Rouge Friday night and took his first shower in a week. Back in civilization, the Tulane college and medical school graduate joined a growing diaspora of displaced New Orleanians.
"I think I saw the best in people, certainly at the hospitals," he said. "Everyone at the hospitals and staff and family members there were concerned about someone. We were all in the same boat."

Her Breathing Tube is Out!

Drew was throwing up all last night because she was gagging on her breathing tube. So they either needed to sedate her again or take it out. Obviously the choice was to take it out. Her numbers are all good right now.
We could not see her all morning because any noise aggrivated her and she was moving around to much so we had to stay away. The nurse called around noon and said they took her tube out so Steve and I rushed to the hospital. So was so sweet. Just looking around at us and not fussing or irritated at all. I can't wait to be able to take my sweet baby girl home with us one day.

Our next hurdle will be getting her to eat out of a bottle. She has had a feeding tube this whole time so she may have forgot how to suck, swallow and breath all at the same time.

Please comtinue to keep Drew in your prayers.
Thank you!

More help needed

First of all Drew is doing good.

I have a few more needs to add to Steve's list.
The other family that has a baby in PICU has lost everything. We are asking any of you to try and go through your closets and donate clothes. Baby Jackson (above) may be released from the hospital soon so he needs clothes, diapers and baby essentials. We have recieved a crib for baby Jackson. Thank you Patty and all of her coworkers at Oilfield International for donating all the stuff for this family.
I am just going to give the sizes I know of and we can go from there.
Womens size 6 and 7/8 and shirts size medium.
Mens size 32/32 and shirts size medium.
Baby clothes sizes 0-3 and 3-6 months.
I will get more clothes sizes today from some other families and update later.
THANK YOU!!!!

Friday Update

Dear Family and Friends,

I am sorry I haven’t called everyone and updated you on our survival story. I promise we will update you soon. It is nothing short of miraculous the way God removed us from harms way.

Thank you for your support during this time of need. Our entire family is overwhelmed by the contributions of compassion that have been bestowed upon us by our family and friends.

Everyone is asking us what they can do to help…
Here is my list of problems to solve... Please help in any way you can.

I need to find an apartment for our nurse from Tulane. She has a 3 year old daughter and is taking a job at women’s and children’s hospital. I need to book an apartment before everything is taken up in the Lafayette area. Please work your connections and try to find something for her. Even if you can only call around for me and put it on hold with my credit information.

I also need to find a place for a family from New Orleans to stay. They have a son that is in the same condition as Drew except they have no friends and family supporting them. I need to find temporary shelter for them and their family.

We are waiting to hear from the staff at Tulane. A number of employees that have helped take care of Drew will be in this area soon and be in need a place of shelter until they can get back on their feet. Please let us know of any possible solutions.

For those requesting banking information, you can use the paypal link to support our efforts in helping these families. You can also deposit funds into BANKONE Account 7101336717.

Thanks again
Steve Schaaf

Thursday

Sorry that no update was given yesterday. Things are a bit crazy.
Drew is still doing good. They are now going to try and dehydrate her to get all the fluid off of her lungs because they will not dry up they are still too wet. Which means if she stays wet the breathing tube stays in. They need to be able to suction her out and the only way to do that is through the breathing tube. They did start her back on breastmilk yesterday and will keep her on it so she can get some nutrition while in the process of being dehydrated. I will try and get another update in tonight after we visit her today.

A Special Thanks

Brandy and I would like to extend our gratitude to Acadian Ambulance for their fast thinking, professionalism, strength and wisdom in rescuing Drew from harms way.


We would also like to extend our gratitude to Air Logistics for delivering generators to Tulane and bringing us home to safety.