Shots Today!

Today Viola had to get her next dose of Synagis and her last dose of flu.  She is not happy!  Poor thing got a total of three needles.  A little screaming but after that she was smiling.  Lets see if the RX company can get it right next month.

Can you believe it!  Viola will be ONE this Sunday!!!  Wow, time flies.  I remember the day so well.  My dad spent the whole day with me saying "Lisa, DONT go into labor while I'm here" over and over again, and that night I went into labor.  He missed it by a few hours!  It would have been so funny if I went into labor while he was here..He would have called 911 and left me--HAHAHA!  Anyways...

Happy First Birthday Viola!

More "Insurance" Issues....

Well Viola is due for another Synagis shot (these are every 28 days) and I get a call from the RX company that I will owe them 2K!  I called my insurance company who said this is approved why are they charging you...and I said "I DONT KNOW..they said YOU said to charge me..."   3 hours later it seems to be resolved.  Cant blame BCBS, its the company that is sending the meds to my docotrs office.  So this week she will be getting her 2nd Synagis shot, her flu shot and her stitches from her chest tube pulled out.  Poor girl, such a busy week for her!  She needs a break away from doctors!

On another note, sad news for another heart family.  Baby Aiden lost his amazing fight after 15 hard days of life.  His story can be read here: http://www.babyaidensjourney.com/.  RIP Aiden, you have no idea how many lives you have touched!

Todays Doctor's Appointment...

Today Viola went for a follow up with Dr. Fehtke.  We went in for the echo first and she wanted no part of it.  She was kicking and moving around so much.  We finally got her calmed down enough to get the pictures we needed.  That was the easy part.  Then came the EKG.  It took three of us dancing like fools to get her to stand still for 2 mins!  I am TIRED!  Once the doctor came in he gave me great news!  Her heart has already shrunk to almost normal size (it was a little more then double the size before surgery!)  Wow, can you talk about fast recovery!  He has reduced some of her meds to once a day.  Now, all we have to do is montior her value.  If it leaks the way it is leaking now thats ok.  It could also get better, or worst.  The only way to tell now is with time.  I have about 4 doctor's appointments in the next 2 weeks so I will be sure to keep everyone updated!  But, the good news is right now, SHE IS DOING GREAT!

Day 2 at Home

Day 1 went so well, I just assumed day 2 would be just as easy...WRONG!  She was up most of the night and just not having it today!  Anyone have any tips to get her to take her Meds....  I think this is why she isnt eating so well b/c she thinks she is getting the "yuckie" meds!  I did get a spoonful of squash in her mouth at one point (after about 10 tries) and her eyes opened real wide and she smiled.....She ate most of that jar.  Mostly she just has been drinking bottles of formula and sometimes juice.  My poor girl, she has every right to have a 'tude!  We go see Dr. Fethke on Thursday for an EKG & Echo.  Guess we will see how she is doing after all these tests.  I assume she wont sit as still as she did last time, she is not happy with any one in the medical field right now (but I am!).  We also have a f/u with Dr. Weinstein on Oct 30.  I keep everyone posted.

Q's for the other heart parents...How long til your child got his/her appetite back after surgery???  Also, any tips on getting her to take her meds....I end up with more of it on me then in her mouth!  Also any after surgery tips that I need...anything, PLEASE HELP!

Home Sweet Home

So we are home!  Spent the night in our own bed!  Viola did well!  She slept til about 2am and after I little backrub she went back to sleep til about 6am.  She started crawling around but did stop (I think it hurts her).  So she is being spoiled by me today!  Rite Aid called to say they wont get her meds in today, but then later called me back to say they will have them after all.  Let me just say...THEY BETTER HAVE IT or call the police NOW!  So far so good at home.  She is eating better, but not as good as she used to.  I have a follow up appointment later in the week to check her out.  I an still in shock she had heart surgery last week and now we are at home playing with her toys!  She is AMAZING!  We still have to try and limited her activity and have a list of things to be on the look out for.  Again...I cant thank everyone enough for the emails and comments.  It helped so much (and helped pass time in the hospital) knowing everyone was praying for Viola!  And thank you to those that didnt come visit!  The less of a chance of her getting sick they better!  Sorry to be so "up tight" about it, but if you have a problem with it talk to my bouncer (GET THEM ANNIE!)  LOL!!   I also want to say The Childrens Hospital at Montefiore (The Bronx) is AMAZING!  The doctors, nurses, housekeeping, food service...EVERYONE were so nice.  And it wasnt that "fake nice" you get...it was real.  They LOVED Viola (how could you not!)  And lots of them were sad to see her go home b/c they will miss her!  As much as I like being home, I do miss all of them now!

In the car

We are on our way home now passing Mclean ave (hi anna).
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Homeward bound

Viola has done so well over night that we will be leaving TODAY! Her blood work and xray were good. She has no fever and eating like a champ! We all can't wait to leave. We are just waiting on dr weinsteins team to give the final ok
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Someone is hungry

Wow someone is feeling better! No fever and her last feeding she drank 11oz! Woohoo! She slept great thru the night (accepted when they came to do blood work). I say this is her way of telling us she wants to go home. Waiting to here from the doctors the results of her blood and xray. Hopefully she can go to the playroom today too! She deserves it!
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The come back!

She is starting to eat!
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Still in the ICU

Well her fever is back and she is not eating. They will start IV soon if she doesn't eat. Aghhhh my poor princess! Here is a pic with her and grandpa. Come on guys I know u have another prayer left in you...pray for her speedy recovery!
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Daddys turn....nap time

Well it looks like we might be staying for the whole weekend now. Viola just isn't eating and she has fluid in her lungs. Right now we r still in the ICU. We were told we should be going to infant care today (but they will decide that I guess!). I should not complain because the bed isn't so bad but boy I would love to be in my own home. Viola is way more uncomfortable then me so like I said I can't complain.
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Nap time.

Looks like we will be leaving the ICU today! Viola is doing great buy she needs to start eating better. Her oxygen level and last blood test are good. They are going to start weening her off the stronger meds.
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Sitting up!

Look at her this morning....sitting up and rocking back and forth. We should be out of the ICU today (we hope). ...and sorry about the last update. I forgot to hit send last night.
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Playing

Well we are staying in the ICU another night but Viola is doing much better. Still watching her oxygen and her blood count. Every one at this hospital has been so wonderful and caring. Julio and I are also are part of a research study to be done by the hospital. They took samples of our blood and Violas. Research is needed to better understand CHDS. Hopefully our case will help other families. Anyways back to watching the Yankees game with my viola(we can see the stadium from her room!).
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Now she is comfortable!

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Chest Tube is out!

Today is a busy day here! We might be out of the ICU today!
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Finally...

Got to hold her!
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Update...

So her echo looks good, fever is gone, and her blood work is good so they are talking about removing her tubes within the hour. They will sedate her to remove all the wires. After that our last two issues are her oxygen level and her blood count. If all goes well we can be looking at going home Sunday. Good news today is we can hold her later on today! Thanks everyone foe the comments and emails...it does help pass the time even if I can't write everyone back. And since ur ready praying for Viola, please also pray for her heart buddy baby aiden. Visit www.babyaidensjourney.com for his story! Thanks again everyone.
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good morning

Well after an "active " night Violas fever broke. She fell asleep with one foot up in the air on the bed....too funny! She is currently watching elmos world (her eyes are open but she is looking down at the dvd player). More to come once I see the doctor.
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Who lives in a pineapple under the sea...

Can you believe that is one of the doctors with the sponge bob costume! Lol.....viola did give him a good look over (but she is still a little dazed!) Still in the ICU. And her fever dropped a little. We r just waiting now. Hopefully tomorrow we can take the drain out!
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Bump in the road.

Well Violas quick recovery hit a snag. She is running a fever and they think it will get worse before it gets better. We are staying in the ICU again tonight and hopefully she will be ok and then they can remove her chest tube.
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So right now Viola is sleeping. She has started drinking formula too. Dr weinsten thinks we r going to leave in her chest tube just to be on the safe side. A note to visitors. Hours r between noon - 8pm. u MUST have a flu shot and must not be in contact with anyone who is sick or has a small cold. And we can not have so many people yet cause we r still in the icu (we can't take over like we did at nyack hospital!). Ha ha! Keep thinking good thoughts!
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Sitting up!

Here she is....sitting up! Going to see if she will get her chest tube (the drain) out today. She does have a slight fever but they said it is a small concern at this point. More updates soon....thanks everyone for the notes....keeps me busy!
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My bobo!

Viola is starting to wake up more. The nurses are giving her pains meds to make her comfortable. But as you can see nothing compares to having her bobo. She also had a small bottle of pedialyte which she drank in about 1 min. So far so good...mom and dad slept ok (as good as to be expected). I hear sponge bob will be visiting the hospital today! If Viola feels good enough he may stop by and say hi! So again thanks to everyone that was here and emailed/facebooked/commented..(yea aunt tree I got the email....ill help u figure out why u can't leave comments! Lol). But thanks everyone!
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Good night!

Thank you everyone....I had a rough night...see u soon! Love, Viola
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Vent is out!

They just took the vent out! She is doing very well according to the staff. We are staying with her tonight in her room. She woke up a few times looked at us and fell back out!
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Breathing on her own!

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330 update

So far so good. She woke up a few times already and kicked her feet around. I am told she is in no pain what so ever. We r currently waiting for her vent to be taken out...that can be in the next hour or even in the morning. To be honest time seemed to fly this morning thanks to all my family that came out to the hospital to support Julio and I. It did help a lot! And that's to everyone sending their prayers and well wishes!
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Her iv tree.....

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R2

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Out of surgery.

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Updates.....

So its over! Spoke to doctor she did great. We can see her in an hour!
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Latest update

Good news...Viola is off the bypass machine and the the patch is in place. They have check with another echo and now there is no more blood leaking. About another hour til she is out...keep praying!
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10oclock update

So far so good. They say she is doing really well. Next update is at noon. Come on Viola you can do it!
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First update

So we went to breakfast and as I come up the elevator I see doctor Weinstein looking for me.....(now I feel guilty for eating breakfast...but the hospital food was very good!) anyways they did a sedated echo and noticed her hole was bigger then first thought but they are going to fix it. He is going to scrub in now to officially start the surgery. About four hours from now she should be out. I am oddly calm right now. Waiting for the next update by 1000. Family really does pass the time.
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She just went in!

Viola just went into surgery. I was able to go in with her as they put her asleep....very sad! I will update as soon as I get some news!
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It's Time....

Viola's surgery (as all of you already know) will be tomorrow at 7am.  The surgery will be about approx 5 hours long.  The doctor has told us they are coming to brief us every hour.  Thank you to everyone who has called & emailed.  Sorry If we didnt get back to everyone, but as you can imagine we are overwhelmed.  A special thank you to all the other heart moms & dads who are going thru or have already been thru this.  I am as prepared as Im going to be because of them.  I will be updating this blog from my phone tomorrow, please check this site for updates.  Since we have such a HUGE family, this saves us from typing emails to everyone on our phone.  Again thank you to everyone who has been praying for Viola.  Here we go...........

Packing for the Big Day! Need Ideas...

Viola can be in the hospital anywhere from 3-7 days!  I am packing now...any ideas???  I did bring some of her favorite foods (anything squash!)  A toy or 2 for Viola and her blanket.  A few pairs of sweats and tees for me & Julio.  Viola has clothes that button in the front because she will not be able to lift her arms over her head.  Toiletries, dice and a deck of cards (the good luck deck!)...anyone else have any ideas what to bring?  My nerves are blocking me from thinking!

Finally out of the hospital! Got to love NY the hotdog cart was right by the exit and I was starving! Viola was getting cranky...this was a long day for us but she was a champ during her bloodwork but was a mad women during her xray! She did not like it one bit. We are on our way home now...got some papers to review for the night before the surgery.
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Viola getting her EKG!

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Pre-Op Tomorrow

Tomorrow we will be going to the hospital for a tour (Visit http://montekids.org/ to take the virtuial tour).  Viola will be getting Pre-op as well (Another EKG, x-rays and bloodwork).  I guess this is the offical start of her journey.  She is so brave!  We will also be meeting with Dr. Fethke to go over everything again (you now I always have MORE questions!)  I will be updating all day tomorrow!

RSV Yesterday

The shots were delivered yesterday so I was able to bring Viola in to get her shots. I was warned by the nurse that these shots are a little more painful then your average shot and they take longer because its more fluid. So Viola got her shot and cried but not for long! She did excellent according to the nurse! She went home and played like normal and had no fever last night. Now all we have left is blood work and then her big day!
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