Sunday, November 16, 2014

Viola 2015 Tri-County Junior Honoree!

I have not updated this blog in a while.  If this is your first time here, I suggest you scroll to the bottom and start there to read Viola's story.  This was a place for me to get the word out to all of our family and friends and also a place for me to vent ;). 

We have created a website.  www.walk4viola.com  Viola has been selected as this year's Junior Honoree!  We are hoping to have an even bigger turn out then last year and we have raised our fundraising goal to over $3000!  So lets hope we reach it!  Please Join us for the 2015 Tri County Heart Walk. 

Thursday, August 1, 2013

PULSE OX NY IS A LAW!!!!



 Thank you Senator Larkin for all your efforts in helping save the “newest” New Yorkers.  Pulse Ox in NY is now a law!  Even though Viola's surgery was a few years ago I will never forget the moment we discovered she would need open heart surgery to repair her heart.  I just re-read thru the blog post the day of and after her surgery and am so thankful hers was even discovered and also they discovered it where the doctors still had time to repair it before it cause major permanent damage.

Thank you Senator Bill Larkin!!! PULSE OX NY!!!!!

Saturday, March 3, 2012

Heart Healthy....

What great news I had today.  Her EKG was great and her value sounds good too!  Her echo is scheduled for the 17th.  If the echo confirms what we hear today at her appointment, Viola will be HEART HEALTHY!  Everyone at The Pediatrics Specialty Practices in Middletown NY are wonderful.  Dr. Fethke is so good to Viola and so caring!  I just cant thank them enough for what they did for my daughter! 

On a side note (which I sure you all hear me talk about), there is a bill in NY (A7941-2011) to require facilities to perform pulse oximetry screening on newborns. The Bill is currently being reviewed by the NYS Dept of Health.  I would ask if you can write a letter to your local assembly person and state senator and also a letter to the Dept of Health.

Thank You all!


Friday, February 24, 2012

Update 2012

I have not been on this site is a while.  I can remember when I was first told Viola need surgery, I was on this site EVERY day!  I just went thru and re-read all the posts, even the ones from the hospital...hard thing to see your child in that way.  Julio & I felt helpless.  Im glad she is so strong!  Viola will be going for her Heart check-up next weekend.  I think I will never not be nervous going to see her cardiologist. 

I want to thank everyone who has sent letter to New York State Department of health & their local NYS assembly & senators.  New York State has a bill A.7941-2011 that will support pulse ox testing for newborns.  For more info on this check out http://pulseoxadvocacy.com/

Friday, December 3, 2010

Violas next heart appointment...

Viola will be going to see Dr Fethke on Monday.  Its been a while but this appointment should tell us how Viola's heart has healed a year after her surgery.  Im a little nervous buying consider us lucky that she has been doing so well.  Wish us luck and send us prayers! 

Sent via DROID X on Verizon Wireless

Sunday, October 10, 2010

Almost One Year Later!

WOW!!  I just read thru this blog.  Make me so sad to she my princess hooked up to all these machines!!  I cant believe it has been almost a whole year!  First and foremost, THANK YOU to everyone who prayed for her.  We have a VERY big appointment coming up in about one month.  This will determine how well her value has recovered.  I know we all have one more prayer left in us!! Hopefully all is well and we can even skip the RSV shots!

I will also be a pain in the ass again about the flu shot.  If you dont have it, dont expect to hold her!!  Its that simple.  I will update again once we get some (GOOD) news from the doctor!!!  Again, thanks to everyone for their support!!!  HAPPY HEART DAY VIOLA!!

Friday, March 12, 2010

WOW GREAT VISIT!

So my stomach has been turning for days worrying about yesterday’s cardiologist appointment.  We already knew that the VSD was successful and that her heart was normal size, but our main concern was the leaking aortic value.  There was 3 ways this could have went….  It could leak more, leak the same or improve.  I happy to say it has significantly improved!!!  What a great appointment!

Wednesday, March 3, 2010

One more shot to go!

After days without seeing Viola (3 feet of snow =lots of work hours!) I took Viola for her RSV shot (second to last one!)  Thank God!  As soon as we walked into the doctors office she started to cry.  She knows now, I feel so bad! I calmed her down, but then the nurse called her name and her didn’t stop crying til we left.  Afterwards I took her to BK and got her some french fries (and a toy)….She seemed to forgive me after that!  We have an echo appointment next week, so cross your fingers for good results!!!

Wednesday, February 3, 2010

Heart Month!

February is Heart Month and February 7-14 is Congenital Heart Defect Awareness Week. Did you know that Congenital Heart Defects are America’s #1 birth defect? Nearly one of every 100 babies is born with a CHD.  Viola is that 1!  To learn more please visit http://tchin.org/aware/index.htm & http://www.itsmyheart.org/

Wednesday, January 27, 2010

Cant wait for the End of RSV season!!!

Poor Viola, she has been thru HELL.  She need blood work and I took her to a place that states they specialize with kids and they tired 3X and then asked me does she really need this done?  Are you kidding me!!!  I almost choked a b*tch!  I ended up going to a quest lab and they were GREAT!!  She told me flat out when I got there that if she thinks she can’t get it she won’t even stick her!!  Then yesterday she needed her Synagis shots and some regular vaccines.  Poor girl is like a pin cushion now. 

So I am home today because she has a fever and I am spoiling her b/c she has been thru way to much! 
Good news is her iron levels are normal once again.  (They were low after her surgery due to so much blood loss) and her doctor said she looks GREAT!  Cant wait til April when these Synagis  shots are over!

Sunday, January 10, 2010

1/9/09 Doctors appointment!

Good news from Viola’s cardiologist!  Her EKG showed her heart is NORMAL size!  I Love the word NORMAL!  He also said he can’t hear the leak (also a good sign!)  The echo will tell us how the leak is doing but these are all GREAT signs!  We are taking her for blood work to get her latest iron count (since it was low after her surgery.

Viola seems to HATE anyone in scrubs now (every time she see scrubs she thinks SHOTS!)  The nurse came in to do the EKG and she was NOT having it!  But dad grabbed some toys for her to play with while they did the EKG and she calmed down!

Good news on my Insurance issue!  I SHOULD be getting a reimbursement from WellPoint in the next 2 weeks!  They agree they screwed up (FINALLY!) and Empire BCBS was so wonderful this whole time!  Every time I call WellPoint, they say call Empire BCBS and every time Empire and I have a 3 way call with WellPoint!  The guy at Empire I spoke to this week was great he was YELLING at them and said he is also filing a formal complaint!  WOOHOO!   I will be happy to have all my $$ back!  It’s been going on for months and I’m happy it is over.  I was not going to let Viola NOT get the RSV shot…but those shots are EXPENSIVE and I can’t wait for that check!  ;)



One last thing...

J.E.T.S JETS JETS JETS!!!

Saturday, January 9, 2010

Violas EKG!

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Wednesday, December 30, 2009

Almost 2010...WHAT!

WOW, Where we not just preparing for Y2K?  Now its 10 years later!  YIKES!  Just wanted to say happy new year to everyone!  

Blog4CHD.com is hosting a week long blogging event for Congenital Heart Defect Awareness January 25th thru January 31st 2010. So please visit there site and tell your CHD story! 

Viola got her RSV shot yesterday.  No problems this month with insurance (well none know yet), but Im still waiting for my refund for the last month they screwed up on!  She has her next card appointment on Jan 9.  Cross you fingers this is a BIGGIE!

Happy New Year!

Friday, December 18, 2009

Happy Holidays

Well I am officially DONE Christmas shopping.  I just need to wrap some last min gifts!  Viola just got over being sick, but as of right now she is fine.  (Mom & Dad are now sick, but at least she isn’t!)  Viola started to get a lump near her scar, the doctor explained this is just scar tissue.  Just freaked me out the first time I felt it!  Good news is she is more active then ever....and even standing up (while holding on to something).  She only naps once a day and sleeps thru the night  (But still with us...she is STUBBORN!)  An update on my current insurance issues, yes they have admitted that they have made an error, and promised to fix it, but I have yet to see a check in the mail….

I am excited to see of the new CHD action for 2010. We have CHD awareness weeks, and there is even a bill in congress (The Congenital Heart Futures Act) to support funding for research.  I am still a little confused about all the smaller CHD groups.  I know this was a discussion on facebook, but there are some great groups our there, but we need to all be one!  For example for Cancer support there is the American Cancer Society. Its hard to explain and ask for support for CHD when if you google it 15 different sites are return…and they all have the SAME goal.  To be honest I am following the lead of some of the other CHD parents on this (Thanks for doing all the work Levi)., but once this is all resolved I expected this to bring awareness to this birth defect.

Merry Christmas and Happy New Year to everyone.

Sunday, November 29, 2009

Birthdays, Thanks & Insurance Issues AGAIN!

Thanksgiving has passed but I will always be thankful for Dr. Fethke, Dr. Weinstein & the staff at The Children's Hospital of Montefiore for repairing Viola's heart. They did a great job and Viola seems to be recovering so well.  She ate a lot of turkey on Thanksgiving and fell to sleep after dinner, just like everyone else!  We also had her first birthday/recovery party!  Everyone had a good time and Viola got LOTS of gifts.  I love how a lot of the clothes had hearts on them!   Thank you to everyone who came out!  She also had her first day of daycare and did GREAT!  Let’s hope she keeps it up!

Now on to my latest insurance company vent.  Today as I was reviewing my bank records and notice some of my co-pays are thru the roof!!!  I order our scripts thru the mail so they send them every month.  Empire told me last month that they would “fix” my coverage to reflect Viola RSV shots to be a major medical expense (not under RX).  Well they fixed it all right…..This month’s scripts have cost about $700!!  The good news is that their hours are M-F 8-5 (you know the hours I WORK!)  And last month when they “fixed” this I was on the phone for about 4 hours!!!  Here we go again!  I know they are charging me the wrong amounts for my co-pays, but I’m wondering since I didn’t see it till now (after I received them in the mail) if they will reimburse me.  Well I sure the hell am going to try!  Its total BS!  I keep everyone posted!

Wednesday, November 18, 2009

Going back to work.... just in time for the cold...AND IM SO HAPPY!

Well it looks like I’ll be going back to work Monday!  This is great news because it means Viola is recovering SO well.  That have taken her off the Lasik (thank god I was going thru diapers like nobody business) but she is still taking the iron twice a day…We need those new red blood cells to be PERFECT!  The hole is closed and the tissue is already in place of the patch (i.e..raingear for my phone peeps!!  LOL).  Now her value, it still is leaking the same amount (no more, no less).  So this is a sit back and watch item.  But Dr. Fethke said the hole was the “cause” and now that it is gone it has a good chance of repairing itself.

So I officially called my FMLA and said I’m returning to work!  But my FMLA case is still open (this is why I wanted to save a vacation day or two…but the rules don’t allow for it(silly rule, but I just have to cross my fingers for a month!)  It’s gonna be hard to try and get her back into a routine, she was sleeping thru the night again for a week, but she is back to waking up at 2am again!  UGH!  And yes….she is SPOILED now!  She is sleeping in the bed once she wakes up from the crib, but I cant stand to see her cry after all she has been thru….That is the next BAD HABIT to break!  I gonna be tired these next few weeks but its all worth it!

Friday, November 6, 2009

Todays Doctor's Appointment...Nov 6

Today I brought Viola in for her surgical post-op appointment. She is looking great! Her incision is healing well and she did get the stitch pulled out where her drain was (She didn’t like that!) I thanked Suzanne for all of her help (she is THE BEST!) and told her to thank everyone at Montefiore for me. We have a few more follow up appointments and also still have to monitor her value, but the hole is GONE and she is recovering VERY well from it! GOOD NEWS.

Thursday, October 29, 2009

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!

Monday, October 26, 2009

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!

Thursday, October 22, 2009

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!

Tuesday, October 20, 2009

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!

Monday, October 19, 2009

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!

Sunday, October 18, 2009

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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Saturday, October 17, 2009

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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Friday, October 16, 2009

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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Thursday, October 15, 2009

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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Wednesday, October 14, 2009

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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Tuesday, October 13, 2009

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...........

Saturday, October 10, 2009

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!

Friday, October 9, 2009

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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Thursday, October 8, 2009

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!

Friday, October 2, 2009

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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Wednesday, September 30, 2009

Finally...RSV shots on the way!

After days of screaming at my insurance/script coverage, they are finally mailing out the RSV shot. Jean from Dr. Wapshares office (who has be wonderful and calling the insurance company just as much as me) is coming in on Saturday(her day off) just to give Viola the shot! Since OF COURSE they cant get it here before late Friday! She has been so helpful. So Saturday she should have her shot!

Dont forget....you need your flu shot!

Monday, September 28, 2009

Help Save Lives!

Thank You Levi (http://www.babyaidensjourney.com/) for sharing this .....

The Congenital Heart Futures Act was introduced in the Senate and House of Representatives on Tuesday, March 17, 2009! This bill calls for increased funding for research, a national registry, and funding for a national awareness and public education campaign.

So what's next?
Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to support this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. Please visit congress.org to contact your respresentatives. Then, follow the links to email them. It only takes 5 mins to email them. Viola will thank you!

Friday, September 25, 2009

9/25/09 Appointment

Ok so I must be writing these appointments down wrong. We did meet with her surgeon today and discussed the surgery, but no pre-op today. We have to go to the hospital for that and they will call me on Monday to set that up. Kinda stinks cause me and Julio both took off work. I could have at least got a 1/2 day in and Julio could have just went to work. Hopefully I can get an on call or two when I come back from FMLA to help me make up for it (I HATE being on call in the winter!!) At first I was upset, but the doctors and the rest of the staff have been wonderful! We want our daughter to have the best care, so to me this is nothing to get upset about. I also think I could have marked it wrong on my calender. Julio also pointed out this is good b/c now we can go to the hospital and "check it out" before her surgery. So in the end it worked out for the best! Just cross your fingers and hope they do pre-op Saturday!

Anyways, enough venting, here are the updates.... Good news is she 17lbs 14oz (thats a weight gain of 2oz in 2 weeks!!) Thats my girl showing her DeStefano side!!! She can EAT! I officially signed the paperwork consenting to the surgery and review my list of questions with the doctor. We once again went over the risks (This is not easy stuff to talk about), but if we dont do this now she will need more surgeries when she is older. I am most concerned about her pain after the surgery. The Nurse Practitioner (Suzanne) is wonderful. She reassured me that Viola is in the best hands with the best care. She told me to expect Viola to be in no major pain by the time we are ready to take her home. Julio & I could not be happier talking to them once again. Bad news is I'm STILL waiting to hear about her RSV shots. Now the lab is telling me they are waiting for my insurance. My insurance says they have nothing, so Im making phone calls....they dont want to mess with me!!

Side note: Julio & I have already gotten our flu shots (thanks Mom!) But if you are thinking of stopping by, you need to have yours. I will NOT let you in the house if you dont...trust me I can be VERY nasty (as you know!)

Viola getting her BP!

Sent from my Verizon Wireless BlackBerry

Friday, September 18, 2009

NON important update....

Just testing..this should also now be updating my facebook feed as well.....
Excited to spend the weekend at home with Viola! Still getting ready for her big day. The most important thing is she goes into the surgery healthy. Good news is she IS gaining weight! We are planning a late 1 birthday party/recovery party for Viola. It wont be as big as last summers party b/c Jay & I will be out of work taking care of Viola, so we are trying to keep it small. Thinking of renting a firehouse or hall (with a bar of course!!) But just cause she is having surgery, she still deserves a first birthday party! Im also still trying to find website about The Kristen Elise Tramm Memorial Fund that gave Viola the bear. The doctor could not say enough nice things about the Mother. In fact he told me when they move to the new location they will be honoring her daughter by naming the parents resource room after her. I am looking to see if they have a link for donations. I will post if I can find it. Thanks again everyone for your emails!

Wednesday, September 16, 2009

Great Story

Isnt the Internet great? I just found this great story about Viola's surgeon.

http://www.montefiore.org/whoweare/stories/Weinstein/

Monday, September 14, 2009

RSV & Flu Shots...

I called Dr. Wapshares office this morning about her RSV (Synagis) and flu shot so dont worry I didnt forget! The nurse is currently filling out the paperwork to send to the company that makes the shot and the insurance company. She said there is a lot of paperwork, but I should hear if Im approved by the end of the week. We are aiming to get her first RSV shot 2 weeks before her surgery so her immune system can do one thing at a time. I will let everyone know when I hear something...

Saturday, September 12, 2009

Todays Doctor's Appointment...

Today we had another appointment with Dr. Fethke. First ,Viola got her EKG and this time she only ripped off one of the test leads! After that Dr. Fethke came in and performed a routine exam. She has gain almost 2 pounds since her last visit and he said that is an excellent sign and she is thriving. Its good to go into the surgery as healthy as possible. We then discussed some concerns I had including her being a little behind other kids her age. She gets tired easy because her heart is working twice as hard and he has seen this before. In fact he has seen that after the surgery that they will be FULL of engery. I also asked about her care before she goes in for surgery. She will need her FLU shot and a series of RSV shots. I will be scheduling these appointments with Dr. Wapshare. I didnt notice how many questions I was asking because when we finally left I walked into the waiting room and it was full! I feel so comfortable with Dr. Fethke and also Dr. Weinstein. For them to sit with me each time for a LONG time a discuss every detail about her surgery really does help. Our next appointment is with Dr. Weinstein on Sept 25. At this appointment we will review every detail of her surgery. This is gonna be a tough one, but it does help that Julio & I trust these doctors and they really seem to care about Viola. Anyways, again thank you for your emails and prayers! Next time I will try to get a pic while they are doing her EKG, that should be fun!

Pic after EKG

Viola after her EKG. Waiting for the doctor!
Sent from my Verizon Wireless BlackBerry

Tuesday, September 8, 2009

My Teddy Bear.

This is Viola with her bear she received today at her echo appointment! The card on it read...
"Honoring the Heart of an Angel, The Kristen Elise Tramm Memorial Fund"

I will see if they have a website and post it.
Sent from my Verizon Wireless BlackBerry

Echo Appointment

Today Viola had another ECHO. I was at the doctors for about 2 hours! They just wanted to make sure they got every picture they needed. We are meeting with her doctor this Saturday to discuss these pics. They also gave Viola a teddy bear for being such a good patient. It helps they play Elmo in the office while they do test.

Also want to say, if your sick, DONT come over!!!! I think I have stressed to everyone already, but if you are sick, I will ask you to leave! If your kids are sick...DONT come over. If anyone in your house is sick...DONT come over! Im not trying to be rude, but I cant say this enough. She can not get sick before this surgery so PLEASE dont make me be nasty (Or nastier...LOL).

On a side note...I HATE SEARS. I took the whole day off today b/c they were supposed to be here this afternoon to fix my stove. Instead they call me while I'm at the doctors saying the tech has to come now or I will need to reschedule. I could have took a 1/2 day and saved myself the pay for when Im on FMLA! So FYI....Im still without an OVEN! Sorry just needed to vent!

Thank all for now...more on Saturday!

Monday, August 24, 2009

Today I got to speak with someone from Dr. Weinstein (Her Surgeon) office. Her surgery is scheduled for 7:00am Oct. 14. We have to be there at 6am. The earlier the better (since I will not sleep the night before). We also reviewed all the insurance info and basic pre-op info. She has an EKG scheduled on September 8 and a follow up Sept 12. Her pre-op for her surgery is scheduled for Sept 25. Poor girl has alot of doctors appointments coming up, so Im spoiling her like crazy. Right now she is running around the house in her walker. She is planning just to relax this weekend at home with mom and dad. And the weekend after that she is going to see lots of family at her cousin Julian's off to the army party. Im sure she will have a blast! Thats all the updates I have for now.......

Friday, August 14, 2009

VSD Pic

Here is a pic that kinda helps explain Viola's Issue. Try googling "VSD" and you will get a TON of info. Also try the American Heart Association. They have some great info. (Thats where this pic is from). Viola has another ECHO scheduled for Sept 8 and we are meeting with her cardiologist on Sept 12. We also have a meeting with the surgeon again on Sept 25. This is where I will be reviewing my four pages (so far) of NEW questions I have. Thanks again for all the support!!!

Thursday, August 13, 2009

Wow, I only started this site yesterday (and didnt even have a chance to email it to everyone) and I am getting GREAT feedback. This is much easier (and less painful) then trying to explain what is going on. I did not know some of you do not know the history of how this all came about....Here is the short version:

We went to visit her pediatrician (Dr. Wapshare, Chester Pediatrics)for a sick visit (it was just a first time Mom scare), but while at this visit, Dr. Wapshare heard a murmur and sent us to go see a pediatric cardiologist right away (we left his office and went right to the cardiologist). We went to The Pediatric Cardiology Associates in Middletown and meet Dr. Vepa. After an EKG & a ECHO (and a really LONG time), they let us know she has a hole in her heart. They said this is common, but the size of her hole was cause for a little concern. At this point we were at the wait and see stage, to see if it would close up on its own as they normally do. Over the course of the next few months we would get tests done, but during yesterday's tests they noticed more blood was leaking out compared to the tests over the passed few months. This is where the decision for surgery was made. After consulting with Dr. Fethke also from The Pediatric Cardiologoy Associates and then the surgeon Dr. Weinstein, we decide to schedule this. If we do not do this now later in life she will need many more risky surgeries.

So here we are now....I will be home with Viola during her recovery. I just filed for FMLA today (BTW....our new FMLA filing system is MUCH easier at work now then it was when I was prego!) Julio and I will be staying at the hospital with her and spoiling her a$$ rotten. I sense a spending spree on Elmo DVDs! I have spoke to some great people who have been thru this before and I even had one mother who sent me pics so I know what to expect when she gets out of surgery. I also spoke to Suzanne Courtwright, nurse practitioner today and thanked her for spending about an hour with me. Her Dr. Fethke & Dr. Weinstein really took the time out to explain everything going on and I can thank them enough for that. She gave me her direct cell number (she will regret it! LOL).

Viola is having a great time at Grandmas today. I'm very lucky she is with family so she can be spoiled ROTTEN!

Well thats it, thanks for the good feedback. Overall Im happy with this site, not like I dont like talking to EVERYONE, but it makes it a little easier on me! (Im not a phone person, yet I work for a phone company...FUNNY!)

Wednesday, August 12, 2009

Update on Viola

As of yesterday, I have found out my 9 month old daughter, Viola, will need open heart surgery. She has a Ventricular Septal Defect and it is located very high on the septum, close to the Aortic Valve. It is approx 6mm in size. The flow across the VSD is affecting the leaflets of the valve causing it to leak. This condition is known as Aortic Regurgitation. Her surgery is schedule for Oct 14. I have been online doing all the research I can. I have also been in contact with other mothers who have been thru the same thing (thanks to the internet) and one of them (Amy) has a care page for her daughter. I will be using this as my carepage to update everyone on Viola's condition. Thank you to everyone who has called an email, if I didnt get back to you I'm sorry. Julio & I are a little stressed out. Im not a phone person anyways....This makes it easier to keep everyone up to date on her and makes it a little bit easier on me. Its hard to talk about over and over again.
As of right now, Viola is in NO pain. She needs this surgery to correct this issues before it becomes a MAJOR issue. Her surgery will be performed at the Childrens Hospital at Montefiore (Bronx, NY).


Thats all I have for now. I gonna try this website out, see how it is...Please let me know what you think!