Landon Odysseus Parker was born December 1, 2014 with a congenital heart defect. He had been diagnosed in utero with transposition of the great arteries. TGA is a heart defect in which the two main arteries of the heart are reversed. TGA creates a shortage of oxygenated blood to the body and requires open heart surgery to correct. We were prepared for Landon to need this surgery and not to come home right away. We were not prepared for everything that happened after he was born.
Landon suffered from lactic acidosis on his second day which caused him to nearly die. Lactic acidosis results low blood pH and a buildup of lactate in the blood. Normal lactate levels are below 5 mmol/L- Landon's levels hit 20. His kidneys and liver stopped functioning properly and his body shut down. He was on a ventilator. He coded in the NICU. To correct this issue it was necessary for him to be put on ECMO (extracorporeal membrane oxygenation) which is similar to bypass. The greatest risk associated with ECMO is bleeding in the brain but we were told Landon would likely die without this procedure. On his second day of ECMO he did in fact develop a brain bleed and had to be taken off of ECMO. From that point on it was wait and see.
Landon opened his eyes for the first time on December 14 and we were finally able to see his big brown eyes. Two weeks later we sat in a room with several doctors and social workers who were telling us that the bleeding in his brain was significant and he had likely suffered severe neurological damage. He hardly woke up. He didn't move his arms and legs. They said his outlook was extremely poor.
We decided what was best for Landon and our other children was to say goodbye to this sweet baby. This is when I first contacted Jalens Gift as I began making plans for not having my sweet Landon. As the day we had chosen to let him be at peace grew closer I began to notice changes in Landon. He started waking up, moving his arms and legs and smiling. Was I a mother who just didn't want to say goodbye to her baby or was something happening? I asked for his condition to be reevaluated and all of the specialists told me that his improvements were significant and they may have been wrong. This was the greatest day in my life! I remember letting Gaby know that I wouldn’t need her services at that time and I hoped I would never need to contact her again.
Since that day in early January Landon fought every day. He was not able to have his corrective heart surgery due to the bleeding in his brain but had a different open heart surgery on January 27 to place a band and shunt in his heart. This was to keep his heart strong for the corrective procedure. It was discovered shortly after this that Landon suffered from Cortical Visual Impairment (CVI) due to the bleeding in his brain. He was completely blind because the blood had pooled and damaged the visual cortex area of his brain. By looking into his big, brown eyes and seeing him smile you never would have guessed that he couldn’t see. He didn’t let anything get him down.
We tried to remove him from the ventilator three separate times but he just wasn’t having it. He got a tracheostomy on March 4 and we began learning how to care for his trach. He continued to battle withdrawal from methadone and Ativan. He had feeding issues. He contracted pneumonia and staph. On June 2 he got a g-tube placed for feeding. This was his last hurdle to overcome in order for him to come home.
One day before his 7 month birthday Landon was discharged from the PICU. He had lived on the fifth floor for his entire life and the day had finally arrived for him to bust out of there and join his family at home. We were so very excited but at the same time nervous. Bringing home a baby is one thing, bringing home one with the level of care Landon required was quite another.
I thrived on taking care of Landon. I had become highly educated on all of his medical needs. I was part mom, part nurse, part respiratory therapist. He had a hectic medication schedule. He had machines that alarmed all of the time. He was busy with appointments all over town. I loved that I was finally taking care of my baby. I couldn’t wait to have Landon continue to prove people wrong and find out everything that he would be capable of.
While he was at home he celebrated his first holiday out of the hospital- Fourth of July. He had his first real bath in water. He went on walks in the stroller. He met a dog. He got to sleep on the couch with his mom. He got to listen to his big brother and sister fight and play. He got to experience really being a baby- more so than he had while cooped up in the hospital bed. Landon was thriving at home. Nurses had told us this was possible but I had no idea to what extent. All of his specialists were amazed at how well he was progressing. There was talk of weaning him off of the ventilator and he even got the ok to travel by plane to Colorado to meet some family!
Our world of happiness came to a screeching halt on August 9, 2015. I awoke to prepare Landon’s medication and found him cold and limp. I called 911. I started CPR. I answered what felt like 100 questions about insurance, meds given, times, weight, conditions. When I arrived at the hospital I was taken to the room they were working on Landon in. I saw a nurse from the PICU standing by the doorway and when she turned to look at me I collapsed. The doctors were calling for times and ordering epi. It felt like forever watching them try to save him. The doctor told me they couldn’t get his heart started but that they would keep trying if I wanted them to. I knew he was gone. I just asked if I could hold him. I held him for as long as they let me. I cuddled him tight and stroked his hair. I kissed his cold face and told him that I loved him so much and that I was sorry.
Landon was 8 months and 1 day when he left us forever. He was the strongest and bravest person I will probably ever meet. Landon overcame more than anyone should ever have to and he did it with a smile on his face. He will always be remembered. He will forever be missed. He is loved.
“Don’t cry because its over- smile because it happened!” -Dr. Seuss