My Hairy Monster

And NO I am not going to get her a hair cut. :) I am trying to just let it grow out. We fight all day long with bows and barrets. She is obviously more stubborn than me. LOL

It is hard to see but that is where drew's tube was. It looks even better than that now. The other picture is what was in her stomach. The bubble part was inside. Sorry the picture is so blurry.

Sorry I forgot to post yesterday.
Drew's appointment went fine. The doctor said she looked great and also did another echo (u/s) on her. She did say that there were a couple of places on her heart that we need to keep an eye on. I did not ask much about it because honestly I just don't want to know. They were not overly concerned and said they would just watch her. We just need to pray that her4 heart heals 100% perfectly.
We borrowed a walker from a friend today and within 3 miutes of her being in it she decided she was done and climbed almost all of the way out of it before Steve caught her. Good thing I didn't spend money to buy her one, crazy girl. I thought maybe it would help her to get some balance, I guess we will do it the old fashioned way. :)

Shots :(

I took Drew for her 1st set of shots today. She only cried for a minute and told the nurse bye-bye so she would leave. lol
She is sleeping now and doing well. She has a cardiologist appointment tomorrow so i will update again then.

Can you tell they are sister..LOL

If you click on the picture it will enlarge it and you can see Drew's bottom 2 teeth.
There is absolutely no doub that they are sisters. :)

No more feeding tube

To make a really long story short Drew no longer has her feeding tube.
It was quite traumatic how it happened, maybe more so for me than her. Her tube attachment got caught under the side of the door and I picked up and did not notice and pulled it out of her stomach. She cried for like 30 seconds and was completely fine and still is.
We rushed to the ER and they could not get it back in so they gave me 2 choices, either send her to New Orleans to go into surgery to put it back in or leave it out. I instantly opted for leaving it out. I called Dr. Bob and he also said to leave it out. They were going to take it out in 5 months anyway so why put her through another surgery. The hole has completely closed up already. They said it takes like 24-48 hours. Hers closed up in one hour. I was at the Er within 15 minutes but I guess still not fast enough.
It was totally my fault and I feel awful for having to put her through all of that but it ended up working in her favor. NO MORE TUBE!
We were not sleeping well at night worried that she would strangle herself witht he feeding tube cord. We would wake up several times a night with it wrapped around her neck. :O
She has been eating most of her milk and lots of table food by mouth. She was just getting like 9 ounces of milk from her tube while she slept. We had planned on taking her off completely friday night so this is just 2 days earlier.
Drew is doing great and drinking more milk today than she ever has. WOOHOO!

More appointments

Drew has an appointment on Tuesday to start getting her immunization shots that we have put off for the last year. Hopefully she will do well.
She also has an appointment on wednesday with the cardiologist here. She just wants to see her for herself even though we are seeing Dr. Bob.
I am pretty sure Drew has gained some weight, she feels so much more solid.

Drew is fussing to be held, I will type more later.

I think I have finally decided on doing Drew's birthday party on September 9th so don't make any plans for this day. Still have to make invitations. I still need addresses from some of you so if you don't think I have it email it to me please. Thank you.

Presents!

Birthday Cake!

The middle picture is Dr. Bob.

Drew's appointment yesterday was good. She gained a few ounces. He took her off one of her meds and now all she is on is lasix which is the diuretic once a day. We have another appointment in a month with him in Baton Rouge.

The best thing about today is DREW IS ONE YEAR OLD!!!!!!!!!!!!!!!!!!

Happy Birthday my sweet Baby Drew!

A few more pics in the hospital

These are from the last 2 days in the hospital.
I need to take some of Rylie and drew together but that is like an act of congress to get one good picture of the both of them together. Also I got Drew's pics taken at Penney's right before her surgery and will get Steve to scan them when he gets a chance.

The pic with the 3 guys are The Zeyphers baseball team in New Orleans. They came to visit each patient there and gave drew a bat, baseball, and glove.

A little explination of the cath images below for those who don't have MD degrees. Lol.
The first was was taken in January right before her surgery when she was 6 months old. It shows what the surgeon at Tulane did to repair her coarction of the Aorta when she was 2 weeks old. It kinda looks like a nub.
The 2nd is the cath we did a few weeks ago right before this last surgery. It shows more of a ball shape to the Aorta. That is what they did in January for her second surgery to rerepair the Aorta. They did a complete repair and reshape of the Aorta, which is why her surgery in January took longer for her to recover from. And also the reason they could not do the VSD repair. They did a lot to her little heart on that surgery.

Thank you God that she is all fixed now.

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…