Gunnar's Heart
Donation protected
On August 18th, 2014, we brought into this world a very special baby, with a very special heart. His name is Gunnar Axel Moore (a tough name for a tough baby).Gunnar was diagnosed with a severe heart defect called Tetralogy of Fallot, with pulmonary atresia, VSD, and MAPCAS. He also has a rare chromosome deletion called DiGeorge Syndrome, or "22q" which is what caused his heart defect. This syndrome also wreaks havoc in many other ways throughout his tiny body. Gunnar is failure to thrive, has feeding difficulties, GI issues, hypocalcemia, hypoparathyroidism, and hypoplastic thymus. Aside from his heart, the worst affect from this 22q, is the fact that his immune system is almost non existent. We basically have to keep him in a bubble, we don't bring him anywhere unless it's to necessary doctors appointments, etc. and I've become somewhat of a neurotic germaphobe (seriously). He stayed in the hospital for a little over a week when he was born, and then was sent home to grow. (We are told his heart is too little and too complicated to be worked on at this time).
Gunnar has been hospitalized 9 times since he was born just five months ago. Some people don't have that many hospitalizations in their whole life! He has also had one 'non heart related' surgery. We are told he will need another surgery on his skull (to allow growth of his brain), but it will have to wait until his heart his fixed.
On December 15th, 2014, Gunnar had a cardiac cath (3d pictures of his heart taken from inside his heart), which showed that his heart was worse than we anticipated. As if your heart can't hurt anymore after the initial diagnosis. After the surgeon did his cath, we bluntly asked him, "are your surgeons here (at CHOP), able to do this surgery for Gunnar, and if not, where do we go?". He couldn't answer that question for us. Instead, he continued to tell us that Gunnar's MAPCAS are one of the worst cases he's ever seen. We later found out that his answer was no, the surgeons at our home hospital, cannot do his surgery. That led me on a mission, to find the very best that I could, for Gunnar's special heart.
That is when I found Dr. Hanley. From what we know right now, we will be flying across the country to California, to Lucile Packard Children's Hospital, for Gunnar's open heart surgery. Dr. Hanley specializes in babies with these critical 'MAPCAS' and babies from all around the world with these MAPCAS, are sent specifically to him. We only want the absolute best for our baby. Which is why we have decided that we will pack up, and take flight across country, to have the best surgeon mend Gunnar's heart.
When people ask us how long we will be there, the answer is that we don't know. It all depends on how our baby recovers. We believe we will be there for two + months, but two at the very least.Tom (Gunnar's dad) will be able to take off from work for the initial surgery, but will need to leave to return to work a few days later. After that, both of our families will take turns coming out there to stay when they can. I, Danielle (Gunnar's mom) will ALWAYS be there. Every day, and every night. No. matter. what.
Gunnar is the light of our life, our happiness, our sunshine, the one true thing that keeps us going. We thank god everyday for how lucky we are to even have him here. We would do anything in our power to fix his tiny broken heart, and believe me, if I could give him my own heart, I would in an instant. We are happy, we are relieved, and more than anything... we are scared.
All of our family and friends ask us what they can do. To be honest, just asking about Gunnar, and keeping him in your thoughts and prayers is enough.
We have had nothing but problems with Gunnar's health insurance. The amount of time I spend fighting with doctors, insurance, and medical equipment companies- it could amount to a full time job. We are still waiting to find out if they will cover his at least his hospital stay at Lucile Packard and we were informed that they will not cover flights at all. Any amount, large or small, would mean so much to us. Thank you guys for all your love and support.
XOXO
On December 15th, 2014, Gunnar had a cardiac cath (3d pictures of his heart taken from inside his heart), which showed that his heart was worse than we anticipated. As if your heart can't hurt anymore after the initial diagnosis. After the surgeon did his cath, we bluntly asked him, "are your surgeons here (at CHOP), able to do this surgery for Gunnar, and if not, where do we go?". He couldn't answer that question for us. Instead, he continued to tell us that Gunnar's MAPCAS are one of the worst cases he's ever seen. We later found out that his answer was no, the surgeons at our home hospital, cannot do his surgery. That led me on a mission, to find the very best that I could, for Gunnar's special heart.
That is when I found Dr. Hanley. From what we know right now, we will be flying across the country to California, to Lucile Packard Children's Hospital, for Gunnar's open heart surgery. Dr. Hanley specializes in babies with these critical 'MAPCAS' and babies from all around the world with these MAPCAS, are sent specifically to him. We only want the absolute best for our baby. Which is why we have decided that we will pack up, and take flight across country, to have the best surgeon mend Gunnar's heart.
When people ask us how long we will be there, the answer is that we don't know. It all depends on how our baby recovers. We believe we will be there for two + months, but two at the very least.Tom (Gunnar's dad) will be able to take off from work for the initial surgery, but will need to leave to return to work a few days later. After that, both of our families will take turns coming out there to stay when they can. I, Danielle (Gunnar's mom) will ALWAYS be there. Every day, and every night. No. matter. what.
Gunnar is the light of our life, our happiness, our sunshine, the one true thing that keeps us going. We thank god everyday for how lucky we are to even have him here. We would do anything in our power to fix his tiny broken heart, and believe me, if I could give him my own heart, I would in an instant. We are happy, we are relieved, and more than anything... we are scared.
All of our family and friends ask us what they can do. To be honest, just asking about Gunnar, and keeping him in your thoughts and prayers is enough.
We have had nothing but problems with Gunnar's health insurance. The amount of time I spend fighting with doctors, insurance, and medical equipment companies- it could amount to a full time job. We are still waiting to find out if they will cover his at least his hospital stay at Lucile Packard and we were informed that they will not cover flights at all. Any amount, large or small, would mean so much to us. Thank you guys for all your love and support.
XOXO
Organizer
Danielle Porpora
Organizer
Berkeley Township, NJ
