written by Logan’s mom, Heather
I got my first taste of mother’s intuition on November 25, 2009; it was the day of my 20 week ultrasound. The ultrasound is one of those exciting milestones of pregnancy along with hearing your child’s heart beat for the first time and feeling your baby move. However for me, I woke up that morning not wanting to go to the hospital to get the ultrasound. I was feeling scared and nervous because something wasn’t right.
At the ultrasound the Sonographer informed Tony and I we were having a baby boy; whose name we already had, Logan Stephen Johnson. We were so happy! Then the Sonographer went quiet for a while concentrating on his heart, she told us she would return with the doctor. The Doctor told us the heart didn’t look right to him and he was sending us to Pediatric Cardiology to get an Echo on Logan’s heart. It was there that the Cardiologist informed us of Logan’s heart defect. They didn’t have a specific name for this condition because it was rare, but it was a “Double outlet right ventricle, double inlet left ventricle, hypoplastic aorta.” In plain English, Logan’s heart had two outlet valves on the right side of his heart instead of one, and two inlet valves on the left side instead of one, as well as his aorta that took blood to the body was too small. The doctor told us he would need a series of three surgeries, one within the first week of life, the second at around three months, and the final at two years. They told us he wouldn’t be able to be very active and may get tired very easily. My heart sank and the world around me went black, I needed to get out of that room and get air. Tony asked a few questions but decided it would be best to come back in a week, give us time to gather ourselves and think of questions to ask them. We were asked about abortion but to me that was not an option, I had to give Logan a chance. What if it wasn’t as serious as they originally thought? We couldn’t give up on our son.
Check ups after that were more in depth than usual, I had two Non-Stress Tests a week as well as one ultrasound a month to monitor Logan’s progress and growth. On March 25, 2010 I had a scheduled ultrasound where they found some fluid around Logan’s heart. My high risk doctor wanted me to go home and pack to come back to the hospital, she was going to induce me that night. She told me she would rather have Logan out and in the PICU than to wait until 40 weeks and take a chance of the fluid getting worse. After more than 24 hours of labor Logan’s heart rate began to drop, so they took him by Emergency C-Section. Logan was born March 27, 2010 at 9:43 am, he was 7lbs 10 oz and 19½ inches long. After my c-section he went up to the NICU and then transferred to the PICU and I was in recovery. I didn’t get to see my little guy until the next morning due to dizziness and nausea every time I tried to move. When I finally got to go see him he had already been sedated. Logan had numerous wires on him for monitoring, as well as a breathing tube, an NG tube, and an IV. It was so hard to see him hooked up to so many things but I knew we were in the best place and he was being taken care of, plus we had amazing nurses taking care of him. Logan had his first surgery April 2, 2010 he was six days old. He was so strong and made it through the surgery with flying colors. He was still under when he came back up to his room and they had left his chest open in case they would have to go back in within the next couple days. Logan was recovering so well all the nurses said he was a rock star and doing everything faster than expected. Logan got his chest closed on April 5th and came down to the 2JCP inpatient on April 8th. After leaving the PICU Logan was breathing on his own and only had an IV that wasn’t used but it was there in case they needed it, his NG tube and he was down to the three main wires that monitored his heart rate and such. He was doing so well and I got to change diapers, give him a bath, and I got to pick him up and hold him as much as I wanted instead of having to wait for permission and to have people transfer him to me. Logan and I sat in the rocker/recliner in his room and I read to him a lot or would just talk to him. I loved holding my son his personality was amazing and they way he looked at Tony and I made our hearts melt, we were wrapped tight around those little fingers.
Logan’s recovery was going so well, he had a few issues with his heart rate but the doctors weren’t concerned. He had numerous EKG’s, echo’s, and other tests that all came back looking good. On April 16th I asked our doctor about his discharge, they told me he would just need to get his feedings on a regular schedule and he should be able to come home in just a few days. That was great news I was so excited to show him the life outside of the hospital. On April 17th Tony and I were woke up to a phone call from the hospital saying Logan was having trouble breathing and we should come in. On our way to the hospital we got another call asking how far from the hospital we were. Then while we were pulling into the parking ramp we got another call saying we needed to hurry. I pulled into a handicapped spot close to the door and we ran to his room. When we turned down the hall to his room the doctors were walking to meet us. Our doctor told us Logan had trouble breathing this morning and they did CPR for about 45 minutes, but Logan didn’t make it. I felt my knees give out and I almost collapsed, they took us to a meeting room to talk to us about what had happened that morning. I held and kissed my son good-bye on that horrible morning, it was by far the worst day of our lives.
I didn’t know how this could be possible because he was doing so well. Life isn’t always fair by any means but I am so thankful that I got to know that wonderful baby boy if only for three weeks. I miss him so much, he has made me such a strong person. I have put my energy into my work outs and getting ready for the Quad Cities Marathon I plan to participate in with the EKF. I find working out is a helpful tool when I want to rid my body of the anger I hold. Logan was the strongest person I knew and is my hero. I feel that if he could go through what he did, I shouldn’t and can’t complain about anything.
This was by far the hardest thing that Tony and I have had to deal with. I definitely recommend talking to family and friends you can trust your feelings with or finding someone that has went through a similar situation. I am so grateful for every minute I had with my little guy and being able to know him; however it is still extremely difficult to deal with and understand why. I never want to forget but I’m waiting for the pain to ease a little.
“I have seen death, I have held it gently in my arms and I have kissed it good-bye with tear stained cheeks.”
Mommy and Daddy love you Lo!
1. Tell 6 people about EKF and ask them to tell their friends, families, and colleagues about EKF.
2. Invite them to register on EKF’s website and become friends of EKF on Facebook.
3. Make an ongoing monthly contribution of $10 via one of the methods posted on the ‘Donate Now’ section of our website.
In February, EKF helped a single mom from Des Moines, IA, as she cared for her 12 year-old daughter who underwent a heart transplant at the University of Iowa Children’s Hospital. Mom needed help getter her car repaired so she could travel regularly between Iowa City to be with her daughter, and Des Moines to look after her young son. EKF also helped the family by covering parking expenses at the Ronald McDonald house during the months they spent at the hospital.
In June, EKF helped the Merseal family (See Charli Anna’s Story) during their daughter’s five month hospitalization. The family had incurred several thousand dollars in dislocation expenses related to the hospitalization. EKF helped cover much of their expense during that time.
In July, EKF helped a single mother of two keep up with her utility payments at home as she took extended time off from work to tend to her teenage daughter recovering from a heart transplant at Morgan Stanley Children’s Hospital of New York-Presbyterian.
In September, EKF helped the McDonald family from Washington state. (See Mia’s story). Little Mia McDonald waited four months in the PICU at Seattle Children’s Hospital before a donor heart became available. The wait was agonizing. EKF helped the family by sending gas cards to help offset their transportation expenses of getting back and forth between home and the hospital. While Mia’s Mom spent most of her time at the hospital with Mia, Mia’s Dad lost his job a few weeks after Mia was born. Their income dropped significantly and the family found themselves in a jam financially around the first of September. EKF made a single mortgage payment on the family’s behalf. A few weeks later, Mia’s Dad found another job and their financial situation stabilized. EKF helped them keep their heads above water, financially, while they dealt with the more pressing matter of Mia’s health.
In October, EKF helped a young family from Kansas as they relocated to Iowa City to await a heart transplant for their four year-old son. The family had asked for help coming up with a security deposit for an apartment near the hospital so they could wait for a new heart in the comforts of home as opposed to waiting in the hospital.
In October, EKF helped a single mom from Iowa as she transitioned home after her infant son’s hospital discharge. Her son had been born with a host of serious medical problems including a complex congenital heart defect. During her son’s three month hospitalization, mom had lost her job, her home, and many of her belongings. Her life seemed to be unraveling due largely to the stress brought by her son’s condition. EKF lent a hand and helped her get back on her feet after her son’s medical condition had stabilized and he was released from the hospital for the first time.
Throughout 2008, EKF helped a single mother in New York as she cared for her twin boys who had each had heart transplants at Children’s Hospital of New York. (See Johan and Tariq’s Story). EKF helped buy food and some pharmacy expenses not covered by the boys public assistance program. EKF also helped with transportation expenses to and from the hospital for post-operative follow-up visits.
In March, the EKF helped a family from central Iowa. They were forced to travel to a larger children’s hospital in Milwaukee to seek more definitive care for their 2-year-old son who suffers with a life threatening congenital heart defect. Outpatient lodging options at the children’s hospital in Milwaukee were limited. The EKF helped negotiate a lower nightly rate at a nearby hotel and paid the expense for a four night stay. Their little boy was able to get the care he needed. This effort was coordinated by social workers at the Children’s Hospital of Iowa and Children’s Hospital of Wisconsin. The family had no resources available to pay this expense and no program was in place to otherwise meet their need.
In April, the father of a one and a half year old boy, hospitalized more than four months with a complex cardiac condition, approached his son’s cardiac social worker about a utility bill he could not pay and feared would be disconnected. This overwhelmed father had taken much time off from work to be with his son who was unstable for most of the hospitalization. The EKF paid the bill, and the father was very relieved and thankful for the assistance.
In June, a young family was finally able to bring their 6 month old son home from the hospital. He had been born with a severe heart defect and required multiple surgeries to repair his ailing heart. After a very stressful start, this baby boy was able to go home on several prescription medications not covered or only marginally covered by the family’s insurance plan. The family was overwhelmed by the financial challenges brought by the baby’s heart condition, and the EKF has been able to help cover some of the pharmacy costs in the early going, as the family transitioned back home.
In July, we began helping another Iowa family with lodging and meal expenses as they spent the summer in Iowa City getting necessary care for their young son with a complex congenital heart defect. The child’s hospitalization is ongoing some 4 months now after admission. The family finances have been severely strained by the lengthy hospital stay, and EKF has been instrumental in helping the family make ends meet during this trying and difficult time.
Also in July, we were asked to provide financial assistance for a family in New York. Their 8 year old son had been hospitalized for 6 weeks at Morgan Stanley Children’s Hospital of New York- Presbyterian, waiting for a heart transplant. The family didn’t have the financial resources they required to keep up with dislocation expenses at the hospital and the bills at home. EKF was able to help this family financially as they were in the thick of it all. The young boy received his transplant and was discharged from the hospital within a couple of weeks. He continues to do well today. His is a remarkable story, and we hope to tell the story in greater detail in the near future.
In August, a young Iowa family welcomed their new son into the world. They had no idea their little one would be born with a severe congenital heart defect. The baby was listed for a heart transplant before he was one week old, and miraculously received the transplant at just 16 days of age. The family was understandably overwhelmed by the circumstances of the situation. EKF was asked to help the family cope with the demands of their unforeseen circumstances which required both parents to be away from work for the duration of the hospitalization, some 6 weeks. The Foundation responded by making a single mortgage payment to their mortgage lender, on behalf of the family. The baby did extremely well post-transplant and was discharged in relatively short order. We’re told the baby continues to do well, today. The family was very grateful and credits this gesture by EKF as having enabled them to keep their heads above water, financially, during their crisis.
In October, the Foundation was asked to help a family from New York. Their 12 year old son has suffered from severe pulmonary hypertension for the last 7 years. The boy is on IV prostacyclin, a potent intravenous medication delivered into his bloodstream 24 hours a day, 7 days a week. Since his diagnosis, he’s been hospitalized numerous times with infections and complications, and has now developed severe right-sided heart failure secondary to his pulmonary hypertension. He’s currently awaiting a lung transplant. EKF was approached to help with some dislocation expenses related to his recent hospitalization. This young man and his widowed mother have been through so much. EKF was happy to give them a break, and help them out financially during this past month.
In October, EKF helped another family who had traveled a great distance to seek treatment for both of their twin 3 year old sons. Both boys had been diagnosed with severe cardiomyopathy. One of the boys had heart transplant a couple of months ago. The family remains in NY for follow up care, and won’t be returning home for several months yet. A few years back, the family had lost their first child suddenly, at age 2, to a previously undiagnosed heart condition. EKF provided assistance with some of their current housing and living expenses as they continue to wait for medical clearance to return home.
In November, EKF helped a single mom in Arizona whose 5 year old daughter required open heart surgery to repair a complex congenital heart defect. The child was hospitalized for only one week, but required constant observation and care for the first 4 weeks post-discharge. During this time, the child’s mother was not able to work to support the family and had no reserves to tap to get them through the post-operative period. EKF helped out by making a single rent payment which enabled this single mother of two to keep up with demands at home while her child recuperated after surgery.
