Well, what a great two months we have had in January and February. Matthew continues to do

great! We were able to taper his night time Lasix down to half a dose and he has tolerated it

fine. He also took his first out of state trip to Florida to visit Nana and Pop Pop for their

birthdays, he loved the pool, boat ride and the ocean. I loved hearing him laugh, after all he has

been through, it warms my heart! He is doing great in Preschool. His speech has improved

drastically and we now have conversations with Matthew and we are both a lot less frustrated!

Thank you Jill . Thank you also to Kathryn and Karen his OT and PT therapists. Thank you also to

Beth, Sue and Sue for all you are doing to help our” little man”.
 

Matthew was also featured on NBC 30 Connecticut with Yvonne Nava in a segment that aired on

February 20^th and 21^st about Congenital Heart Defects and Pulse Oximetry Screening and our

advocacy efforts. Yvonne Nava also interviewed Dr. Raul Arguello and Senator Michael

McLachlan. I am hoping to upload to the website. If for some reason it does not work, it can be

viewed on Senator Michael Mc Lachlan’s website under Life-saving test for newborns.

February has been a busy month also with Congenital Heart Defect Awareness Month and “The

Hug a Heart Pillow Project”. On February 10^th, the children at The Sherman School where

Matthew goes to Preschool joined together and stuffed 188 Heart Pillows. Every class

participated and all the pillows were stuffed with lots of love and enthusiasm! A huge THANK

YOU goes out to SUE PEET for all her efforts behind the scenes to make this happen! We planned

on delivering them on Valentine’s Day but alas Matthew was sick. We will be delivering very

soon to help comfort the children at Columbia Presbyterian who like Matthew have to undergo

Open Heart Surgery.
 

Also thank you to Rob, Scott, Marisa and Paulette at New Milford Sports Center who helped to

raise over $300 for Matthew’s Hearts of Hope by hosting a Spinathon Fundraiser on February

25th. Thank you to all who participated, especially Beth, Lee, Sue, Greg, Laurie and Billy! Thank

you also to The Sherman Library, The Sherman IGA and Christ Church Nursery School in Pawling

and Salon De Palma for selling Heart Necklaces in the month of February!
 

We have a Bill in Connecticut RSB 56. I had a private meeting with both the co-chairs of the

Public Health Committee, Senator Gerratana and Representative Ritter. They are very supportive

of mandating Pulse Ox Screening on every newborn. The March of Dimes and The American

Heart Association are also supportive to this great piece of legislation. The Bill will be named

“Matthew and Faith’s Law” in honor of Matthew a CHD Warrior and his friend Faith, a CHD Angel .

We have a Public Hearing on RSB 56 on Wednesday, March 7^th. We are hoping this will pass out of

Committee to the Senate and then house quickly! Lives will be saved, it is that simple!

Lastly I would like to thank Amy Bocompani for her tireless efforts to help me get more

organized. You have been a huge help to Matthew’s Hearts of Hope, Thank You! Thank you also

to Christina Crowe and Bernadette Schopfer for their help with Matthew’s Hearts of Hope

becoming a Non for Profit. Thank you also to Board Member Virginia Clerkin for working on the

Bi-Laws.  
 

Coming soon, Guideposts has approached us about featuring Matthew and Matthew’s Hearts of

Hope in a future edition, I’ll keep you posted. As always thank you for your prayers and support!

 

 

The Hug a Heart Pillow Project  On February 10^th 2012 with the children at The Sherman School

 

Matthew, Marie and Senator McLaughlin with NBC 30 Connecticut's Yvonne Nava

 

2011

Merry Christmas and Happy New Year!

Matthew continues to do great!  We saw Dr. Snyder on December 19^th and we stopped his night time Lasix dose but after four days of morning vomiting, we restarted  Matthew on a half dose  at night and he has been fine since then. He continues to love Preschool and his speech is improving rapidly!
        Matthew’s Hearts of Hope is officially incorporated  with an EIN number and we will be filing our Non For Profit Paperwork in the next month.  I am so thankful for all who have helped on this amazing journey and look forward to all the great things coming in 2012.
Christmas was very special this year mostly because my three boys were happy and “healthy”!! It has been quite the year, Matthew’s Cardiac Cath in May revealed Lower Venticular Diastolic Pressures which kept him off the Heart Transplant list and eligible for the Fontan. Over the summer, Matthew surgery was postponed twice due to illness and eventually when it was performed on August 17^th by Dr Emile Bacha, it was done without ever putting Matthew on the heart lung machine and he came up to ICU extubated!! The recovery was tough with issues with pain control, constipation and Pleural Effusions but he recovered and along the way he continued to smile.
        On September 27th, Matthew started Preschool, just shy of six weeks post operatively. Then “Hearts of Hope”, postponed due to the snowstorm but on November 12^th an amazing night was had by all! December 9^th Elizabeth Bradshaw presented at the Danbury Hospital Business Meeting and Pulse Ox Screening will be implemented in the New Year at both Danbury and New Milford Hospitals. A Committee has been formed and the first meeting is scheduled for January 12^th. Also the local legislators will be meeting in early January to put together a gameplan for the Public Health Committee and the short session next year. I am optimistic that the great State of Connecticut will mandate Pulse Ox Screening on every newborn in 2012!
        The icing on the Christmas Cake was Christmas Eve, when we were FRONT PAGE news in the Danbury News Times! I felt like George Bailey on” It’s a Wonderful Life”. Here is a link for the article! It was a hard year but a great year and this was a beautiful testament to all the hard work of many people who have helped. You all know who you are, whether you bought a necklace or a bracelet, made a donation or showed your support at “Hearts of Hope” or through prayers for Matthew….Thanks a million, Gura Mile Maith Agat, I hope you’re proud!!

Merry Christmas and Happy New Year!

Update on Matthew

Matthew came home on September 6^th, the last day I updated the blog! He was on high doses of diuretics to help with the Pleural Effusions, fluid in his lungs. He is now weaned down to just twice a day Lasix and once a day Aldactone and is doing great! He has started Preschool and loves it. His speech has improved a lot. Dr. Snyder is very happy with his progress as are we!

“Hearts of Hope” was postponed to November 12^th due to the snowstorm. It was a huge success! Thank you to all who attended and to all our generous donors for the raffle and silent auction items. Thank you also to all the volunteers from Immaculate High School and their parents and to Linda Hatcher, Lisa O’Neill, Marianne Fahey, Mary Ellen Midgley, Olwen Gurry, Pat Keenaghan and Virginia Clerkin for being the A-Team behind the scenes.  I could not have done it without your help. Thank you also to Dr. Michael Snyder and Dr. Kevin Ferguson for being guest speakers and also to Celtic Cross Pipes and Drums for their beautiful bagpipe music, “Amazing Grace” brought us all to tears. We raised a lot of awareness and money, $7500 for our great cause. Senator Michael McLachlan, Representatives Jan Gieglar and Dan Carter attended the event and promised to help pass legislation in Connecticut that would mandate Pulse Oximetry testing on every newborn. Elizabeth Bradshaw from Children’s National in Maryland will be doing a presentation on Pulse Oximetry Screening and implementation process at Danbury Hospital on December 9^th. 

As we approach Thanksgiving this week, I am most thankful for how far we have come with precious Matthew in the last year. I am feeling very blessed indeed. Thank you as always for all your prayers and support! Coming soon “ Hearts Pillows” for all the babies and toddlers in the Cardiac ICU at Columbia Presbyterian to use post open heart surgery to help ease the discomfort when coughing!
Happy Thanksgiving to you and yours! God Bless you all.

Matthew finally had his Fontan surgery on August 17^th, 2011 after being postponed twice due to a virus and a cold. All went well in the Operating Room, the surgery was done off the lung heart machine and he was extubated before coming up to ICU post operatively. He had many ups and downs in the post-op period, including pain control, large right pleural effusion, fast heart rate, constipation and low Potassium levels. He came home on August 26^th and did OK for about two days. He was readmitted on September 1^st with Bilateral Pleural Effusions and remains in the hospital as of today September 6^th. He is doing much better and should be home again in the next few days!

Senator Mc Lachlan is doing a great job on our Pulse Oximetry Screening Lobbying efforts. We have received the Research Report back and it was very positive.  The Report has been sent to the Public Health Committee for further review. We have another meeting scheduled for next week which includes Representative Richard Smith and Selectman Andrea O’Connor. Thanks again for all your support and prayers. Tickets for our upcoming event “Hearts of Hope” will be available on the website very soon.

Matthew’s surgery was postponed until August 3^rd! He picked up a virus the weekend before and was afebrile by Monday but his bloodwork indicated that his little body was still fighting it. I was obviously disappointed and a little frustrated but God has his reasons and I have made my peace with them! On a happier note Matthew had a few firsts on his July fourth weekend. He went to his first movie, Cars 2 as part of a birthday party for friends of his brothers Hunter and Tanner. He loved it! He went tubing on Lake Candlewood with his brothers, see the photo below. He also saw his first fireworks and loved them! Thank you as always for all your prayers and good wishes. Keep them coming, we still need them for the upcoming surgery! 

We continue to plan our event “Hearts of Hope” at Danbury Hospital on October 29^th. It will be a sell-out event so make sure to get your tickets. They will be on sale very soon! It promises to be an exciting night! I have made contact with some local politicians and also Joint Commission in regards to mandating Pulse Oximetry Testing in newborns to better screen for Congenital Heart Defects, the #1 Birth Defect.  I am working on meeting some of them this month to share the facts and to encourage them to start discussing it in Connecticut! I’ll keep you all posted!

Matthew Going down a Slide and Loving every minute.

Matthew Tubing with His Brothers  Michael and Ryan

Matthew had his Cardiac Cath on May 11^th and we got some good news! His Ventricular Diastolic Pressures are lower so the medications have made a difference. From a numbers standpoint he was 18mmHg a year ago and he was 14mmHG this time and normal is 10mmHg. They have decided to go ahead with The Fontan on June 29^th, 2011. He is still a little risky but they feel it is best to do the surgery and see how he tolerates all the blood flowing through the lungs to be oxygenated. I am happy we are at this point and pray that all goes well. Thank you as always for all the prayers!

“Hearts of Hope” is all set for October 29^th, 2011 at Danbury Hospital with a wine reception to follow.  There will be numerous political figures attending as well as potentially some celebrities!! We have added to our product line and have some silicone bracelets now. They are $2 or just make a donation and we will get one to you! We are over $6000 in our fundraising efforts, thank you for all your support.
Also we are in the early stages of advocating for every newborn in the State of Connecticut to have a pulse oximetry reading done after 24 hours. The goal being that, more Congenital Heart Defects would be diagnosed sooner leading to better treatments and outcomes. It is the number one birth defect but many go undiagnosed!