Meet Oliver! Heart Warrior of the Month – March 2014

“Oliver’s Story” – as told by his Mother.

During my 30th week of pregnancy I was diagnosed with gestational diabetes and referred to Maternal-Fetal Medicine for Level 2 ultra sounds to track our baby boy’s progress. During a Level 2 ultrasound, we were told that our baby had a hole in his heart. We were sent to Amplatz Children’s Hospital for a fetal echo that confirmed there was a moderate VSD, but the cardiologist was hopeful that the hole would close on its own. As a precaution, the NICU team was available during my delivery and an echocardiogram was scheduled before the baby was 24 hours old in order to get more accurate images of his heart.

On August 25 at 5:04am Oliver Edward Hertzfeld was born weighing 6lbs 11oz. As the NICU team was assessing Oliver, my doctor announced, “He is perfect!” We spent 24 carefree hours with Oliver before his echocardiogram.

Immediately after his echo, Oliver was transferred by ambulance to Amplatz Children’s Hospital and diagnosed with the following congenital heart defects.

Interrupted Aortic Arch (Type A) A healthy heart has five different branches from the aorta that carry oxygen rich blood to the body. Oliver was missing the connection to carry blood to the lower half of his body. This is a very rare heart defect that only effects 3 in 1,000,000 babies.

Aortic Valve Stenosis Because Oliver developed only four of the five branches of the aorta, the main aortic valve was small.

Atrial Septal Defect (ASD) There is a small hole in the right atrium, but the cardiologists believe that this will close in it’s own.

Ventrical Septal Defect (VSD) Oliver had a large hole between the right and left ventricle.

During Oliver’s first open heart surgery when he was 11 days old, Dr. St Louis repaired his aorta and closed his VSD. The surgery was complicated by complete heart block, paralyzed diaphragm, and vocal cord paralysis. Two weeks later Oliver had a pacemaker implanted to keep his heart beating. He also developed Pyloric Stenosis (unrelated to his heart issues), which was repaired when he was five weeks old.

On May 15, 2013, Oliver had his third open heart surgery to repair the narrowing in his aorta which was caused by the initial repair of the Interrupted Aortic Arch. During this procedure he also had new pacer wires attached to his heart in preparation for his next pacemaker surgery. The surgery was successful and his recovery went even better than expected.

Ollie will have many surgeries throughout his life to keep his heart beating strong, but the doctors expect him to live a full life with minimal limitations. Oliver is a strong, brave, beautiful boy and we are so thankful for every moment we share with him.

When I think back on Oliver’s first birthday party, I think of all of our friends and family that came to celebrate his heroic first year. It meant so much to me and my husband to have such a beautiful and delicious cake for Oliver and to be able to share it with all of the people that had supported our little family throughout that challenging first year. Today Oliver is a thriving 18 month old boy, and we can not wait to celebrate future birthdays and milestones with yummy cakes made by Cakes from Grace!

We’re back at it!

Hi everyone! We are so excited to be getting back to creating cakes next month. After some time off from making cakes and taking some time to enjoy my newborn baby girl, we are starting things up again! I want to take a moment to thank you all for your patience. I have recovered from surgery and had lots of snuggle time with my princess and I am so itching to get back into the kitchen to make some awesome cakes for our heart kiddos!

We have a lot coming up this month and some really fun themed cakes like a Frozen theme and Monsters University!

Last year we brought 300 cupcakes to the Hope in Grace fundraiser and we are so excited to be bringing back more this year! We raised over $700 for the Grace Doffin Pediatric Heart Research Fund last year and we are pumped to do it again this year!

So what’s Hope in Grace all about? Well last year I connected with A fellow heart Mom, Jaclyn, and she told me about her baby girl who’s name is also Grace. Grace was born with hypoplastic right ventricle with tricuspid atresia, pulmonary atresia, and aortic transposition. Basically Grace’s heart was not able to effectively pump blood to the lungs to get oxygen. She lived 10 months with her two other siblings, yes triplets, and I have made a bunch of cakes for this wonderful family and love that we can participate in this event every year! Grace is still living on through this organization that’s raising money to support pediatric cardiology research at the University of Minnesota and to promote excellence in education in the field of neonatal and pediatric medical care. So please support this cause and come out for some Cakes From Grace cupcakes as well! To find out more about Hope in Grace and to sign up for the run/walk visit http://www.hopeingrace.org
Run for Team Gracie!

5th Annual Hope in Grace Family Fun Run/Walk
Saturday, April 26, 2014
2:00 pm
Lakeside Commons Park in The Lakes of Blaine

I want to finish with asking you to help us out by sharing our page and this post, especially to our heart families! We want to reach out to more families to get cakes out to these awesome heart warriors. So if you know someone that has a son or daughter born with a CHD, tell them about Cakes From Grace. Our goal this year is to reach out to so many more families. Thank you! http://www.cakesfromgrace.com

Meet Anthony! Heart Warrior of the Month -February 2014

Anthony is a bright independent, curly haired two year old. Our heart hero loves planes, helicopters, tigers, and sharks. He loves to wrestle and tackle his older brother Ian. He goes everywhere with his little blue blankie, and his hugs and kisses can make your day. He likes to cuddle and listen to mom sing his Precious Moments song book to him before bed. He and his dad like to watch football together and be weird together. He calls them little trees. He also LOVES the color orange, and watching the magic school bus, and catching him singing the theme song to it, is many times the highlight of our day. Above all, the best thing about Anthony is his laugh- the one that only Ian knows how to get out of him.

On April 29th 2011, Anthony was born. Besides a genetic disorder, biotinidase deficiency that is able to be successfully treated, he was a happy healthy boy.

In January 2012, his doctor found a loud heart murmur. Anthony was set up with cardiology who ordered an echocardiogram. As the echocardiogram went on, more and more people came into the room to look. The doctors looked at the screen and spoke to each other for a long time. When they glimpsed down at him, we caught him with a sparkle in his eye and a huge mischievous grin. The doctors and residents couldn’t help but to keep peeking down and quietly laugh as his smile got bigger and bigger, and his beautiful spirit shone through their discussion about what they saw on the screen.

On the screen, we could see blood gushing back and forth through a hole in his atrial septum. Ant was diagnosed with a large (12mm) atrial septal defect (a hole in the wall between the left and right atria) which would need surgical repair. Without surgery, the progression of the disease would lead to heart failure. The options included a less invasive catheter procedure (a device threaded through the groin, opening up like an umbrella to close the hole), or open heart surgery (to stitch a patch over the hole).

The plan was to monitor frequently, and decide on and schedule the surgery between his 3rd and 4th birthday, allowing him to grow stronger, and hope for the hole to close.

In July of 2013, many appointments and chest x-rays later, his growth has stalled, and his heart is significantly larger than hearts of healthy children his age. Another echocardiogram showed a large left superior vena cava, and the rims around the hole were not good- this made the catheter procedure no longer an option. After an electrocardiogram the cardiologist decided to schedule the surgery.

Anthony’s open heart atrial septal defect repair was scheduled for November 25th 2013.

In the meantime, throughout all this, the waiting, the normality of life, was weighing on us. Even though things weren’t normal with him, they seemed normal. We would take road trips every few months to go to appointments at Mayo which could take a couple of days, and has its costs. Conversations were many times dominated on Anthony’s health, or we would go through times when we didn’t talk about it for a long time, almost like we were in denial that it was happening. It is hard to process that something so traumatic is going to happen to your little boy, and live life like normal at the same time. The anticipation of something so harsh that you want for your child to get better, and don’t want at the same time, is difficult to both think about and ignore.

Also with our priority being work, school and trying to better our position for our family, this experience was teaching us to appreciate the time we have with our children, and to leave them some of that time. We’ve become more loving, and devoted more time to each other.

Looking for something, or someone, that had to do with, or who knew how we felt we went to a CHD walk. There we met Becky Hunt’s family, who told us their story. Her family has been the biggest source of support for us when it comes to this, the way they noticed and welcomed us, and kept in touch was such a relief to our family. Some of the pressure that we didn’t even know was there had gone away, just from meeting a family to share stories and love for our children with.

The cake Becky made for Anthony was a delight. With all the money and time being spent on “more important” things than fun, having a heart party for Anthony was something we all needed. She made it in orange creamiscle flavor, which is just so “Anthony”, with sugar crunchies as stardust. It was absolutely perfect, and we will never forget the happiness and the smiles it brought to each other’s faces that day- we were able to completely forget everything, and spend time with family and enjoy the moments this experience has taught us to treasure, and watch Anthony devour that cake like nobody’s business.