Our Heart Story

I want to let everyone know about an important organization I am involved with called Intermountain Healing Hearts. We began to organize this group during the summer of 2007 and are working so hard to get it set up as a non-profit organization. Our purpose is to provide support to families of children with congenital heart defects and child onset heart disease. We have plans to get care packages (bags with a few comfort items) to anyone at Primary Children's with heart issues; Restart the family to family program at Primary's so families can contact someone who has dealt with similar issues; and be a support community for all families in any stage of the process, including those that have lost children. I have met the most amazing people through this work and am inspired and in awe at how strong these families are. If anyone has any resources to help this organization out, we are in dire need of financial assistance to pay start up fees, as well as our continued supports for families dealing with heart problems.


For anyone that doesn't know why this would be extrememly important to me, let me tell you our story. Sorry, this will be long. Blogs and carepages weren't a part of my vocabulary back when this happened! My ex-husband chose to join the military in May of 2003. We were stationed at Fort Campbell, Kentucky in February of 2004. At that time we were expecting our fourth son. Our other boys were ages 5, 4, and 2. I was induced on May 15th at Blanchfield Army Community Hospital. That was an experience in and of itself! Matthew was delivered by an Army captain that seriously looked like Marilyn Monroe. She had the blonde curled hair and bright red lipstick! Matthew looked just like any other newborn and we were moved to the postpartum floor. Matthew nursed so well, unlike any of the others. My epidural was horrible and my right leg stayed numb for about 8 hours. Meanwhile they threw us in a room about 12:00 AM, yes us, there was no newborn nursery in this hospital. I don't think anyone came to check on us until about 10:00 the next morning, luckily we were all fine (at least I thought). That day Matthew just wanted to sleep, not too uncommon. He didn't want to eat anymore and was spitting up mucus a little bit. The nurses kept telling me he had to eat and I kept telling them I was trying but he was not interesed.

That night at shift change we got the same nurse that had taken care of us the night before when he was born. I discussed with her the possibility that he had a lot of mucus in his stomach and maybe that's why he wouldn't eat. She reluctantly took him to suction out his stomach to see if that was why he wasn't hungry. This was at about 8:30 PM. Up until this point my world was okay. What occured next turned everything upside down and was the longest and most unforgettable experience of my life. I do have to express my gratitude to this nurse, we were schedule to leave the hospital the next morning. When she took him to suction his stomach she felt he looked a little different than he had the night before. She checked the oxygen level in his blood and it was quite low. When that happens they put an oxygen tent on them which is like a little ball with a cut out for the neck. At 100% oxygen his oxygen levels were not rising much which indicated a problem, most likely with his heart.

Meanwhile I had been sitting in the room from about 8:30 PM until about 10:00 PM wondering why it was taking them so long. I'm pretty sure it was the nurse that came in first, I honestly just remember my world spinning. I was told that Matthew's oxygen levels wouldn't rise when given oxygen and that was indicative of a heart problem. We were told there was a special ambulance on it's way from Vanderbilt Children's Hospital (Nashville, Tennessee) to get him so they could find out exactly what was wrong. I know at some point there was a pediatrician that was trying to explain stuff to us as well. I was alone, of course, Matthew's dad and the boys had just left the hospital for the night. I had to make calls to get Matthews dad back to the hospital with our neighbor to give him a blessing and find someone else to watch our boys. I had to call my Mom in Utah and ask her to please get on a plane as fast as she could because my world was collapsing. Matthew was given a beautiful blessing by his dad and Josh Nutter and was told that things would be okay and he was a fighter. I was given a blessing as well that told me Matthew was sent to us because I could handle this. Okay, so I tried to pull myself together because I was supposed to be able to do this! Thank goodness for guidance from a loving Heavenly Father and the comfort that is brought by the power of the priesthood. A team called the Angel Team arrived in their specialized ambulance, kind of like a NICU on wheels. They then had to do all the tests that had been done by the hospital already because they had to have their own results. They gave him a prostaglandin that kept his PDA open. It is a valve that usually closes soon after birth but with it open, blood travels around a little differently. The side effect of this was apnea so they intubated him to keep him breathing. The next thing I knew, we were saying goodbye to Matthew in an incubator with tubes and IVs coming out all over. The Angel team handed us a polaroid of Matthew in the incubator and a onesie that said, "I took my first ride with the Vanderbilt Angel Team". I'm not sure who thought of this little goodbye but come on, put yourself in our position, did someone really think this was somehow comforting? I am grateful that I was healthy enough that the doctors worked as fast as they could to get us leaving the hospital at the same time. The only minor problem was that nobody had a correct map to get to the Children's Hospital because of road construction, Hello!! I just remember driving out of the parking lot of the hospital and seeing in the distance the ambulance go through the guard gates, turn on their lights, and my baby being rushed to a hospital over an hour away. We made it to the Children's Hospital at about 3:00 AM. There was an intern there when we got there doing an echocardiogram and then proceeding to try and draw a picture (it sucked) of what he was pretty sure was wrong. They would let us know for sure in the morning.

It was what the intern thought he saw, Transposition of the Great Arteries, and an Atrial Septal Defect (a hole). This meant the two main arteries leaving his heart were backwards. Blood was going from heart to his lungs and back to his heart. On the other side blood was going from his heart to his body and back to his heart, with the only oxygen being through some mixture of the blood through the hole. Explaining why he wasn't eating, his organs were shutting down from lack of oxygen. It is more common for this defect to occur along with other defects so because this was the only problem it seemed to be a simpler fix than other defects. At three days old they took him to the cath lab for a septostomy which in english is making the hole in his heart bigger, gross huh? They showed us the video of the proceedure right after they had done it. Not pleasant at all. They put the catheter through the hole, inflate the end of it and pull it back really fast to rip a bigger hole, yes, they showed this to us. Horrifying, but worked to allow enough oxygenated blood to circulate that they took him off the prostaglandins and he was extubated so we could hold him and he was fed a tiny amount.

We were on the schedule for surgery a couple of times but would get bumped for more urgent surgeries and a transplant too. Finally when Matthew was 10 days old they got him into surgery at about 2:00 in the afternoon. That was the longest 8 hours ever. He was actually on the operating table for about 5 1/2 hours of that. I have the complete detailed report of the surgery and every time I need to be humbled I read it. I am amazed at the ability of the doctors to be able to correct things in such tiny hearts. They switched the arteries (aorta and pulmonary artery) and had to move the coronary arteries ( I think that's what they were) which were the size of a piece of string. It is absolutely amazing that there is the technology to do this. I was talking to a woman in our old ward and she has been a nurse for a long time. She told me that she remembers when there was nothing they could do for babies born with this defect (only about 30 years ago).

Matthew's recovery was unremarkable. He was only in the PICU for a couple of days and then we were in a regular room for another few days. He was very stubborn in eating but I was determined to get him to. I spent about $50 on every bottle I could find at 2 different stores. You wouldn't think there was such a difference but apparently to Matthew there was a huge difference. I finally did find one that he liked and he actually would eat with it. He did have a feeding tube that we used a little. We went home with it but I really never used it and after a couple of days took it out and never needed it again. He was on one medication, lasix, for about a month until after his follow up appointment and that was it! One exciting thing that happened while we were in the hospital was a tornado. Not just a watch, but a warning which means there actually was a tornado touching down in the city. We had to all go into the hallway and shut the doors to the rooms because of the windows. It didn't hit the hospital luckily, but I don't recall what damage it did do. I was again humbled during this experience because as I sat rocking my baby which had been made whole, we shared the floor with cancer patients. There were children walking around the hallways with their IV poles, most losing their hair. I remember a girl about 12 with long hair that was falling out, walking down the hallway with a younger sister. Life is not fair, that's for sure.

Matthew is now 3 1/2 years old. He has yearly visits to the cardiologist and he actually is so good that last year they didn't even do an echo. I think it's every other year now. From looking at him you would never know all that he went through, he is so wild. If you ask, he will tell you that he rode in an ambulance to the hospital and they fixed his heart. He will also show you his zipper (scar) at any time, I hope his pride in it continues.

I can't tell you how grateful I am for the doctors and nurses that choose to do this for their careers. They saved the life of my baby, as well as many others on a daily basis. This was an incredible life lesson for me and I know that it is important to offer support to anyone going through a similar situation. One other organization I am so grateful to is the Ronald McDonald House. We stayed there for a few weeks. It was such a comfort to know that we were so close to the hospital and not being financially overburdened. It is a wonderful organization.

This experience humbled me and made me aware of the blessing we have to be an eternal family. We have a loving Heavenly Father who has prepared a way for us to live with him as well as our loved ones for all of eternity. The greatest lesson I learned is the power of prayer and what it sincerely means to have a prayer in your heart. I know I will always have a prayer in my heart for people I know are experiencing the same struggles, every day.