Raya Sunshine

Hi, My name is Lauren I am one of Raya's godmothers and started this fund to assist Raya and her family with any medical expenses they need. Below is Raya's medical journey.

My name is Raya Koch or Baby Raya Sunshine, I am the middle child of three. I have an older sister named Luna. She is my mom’s moon, and my younger twin sister Aurora is my mom’s stars. I have had quite the medical adventure so far in my life, and my adventures continue. The beginning of my story starts when I was 16 weeks gestation, my parents found out that I had a heart defect. The doctors were not sure what condition I had because it was very challenging to get the correct images to really know what it was. But with a lot of planning and support from family and friends my parents and doctors came up with a plan. My parents knew that I would be flown to Ann Arbor, Michigan for my heart condition. Once there we would know what heart problems I had and what medical plan was going to take place.

I was Baby A born at 12:38p and my sister Aurora followed at 12:40p. When I arrived into the world the nurses and doctors took really great care of me, I went right into the NICU to be monitored. My twin sister was healthy and stayed in the room with our parents. While in the NICU they ran many tests and monitored me closely. Originally the doctors predicted that I would be in the NICU for a week before I was to be flown out. While being monitored my Oxygen status start to go down. My parents were informed that they had to start me on prostaglandin, and we were going to have to bump up the timeline for going to Ann Arbor. On Friday 3/19/21 at 6:30am my Dad and I flew to Ann Arbor. The night before we left I got to meet my older sister Luna for the first time. Also, got to spend a few minutes with my twin, who I had to reassure because she cried a lot. On that Friday morning I said goodbye to my mom and was intubated and sedated and put into my traveling box and into the ambulance transported to the airport. The four hour plan ride to Ann Arbor air field. We arrived at the Mott Childrens Hospital, and this would be my home for what we thought was for two weeks.

When we got to the hospital, the Doctors ran many test and confirmed that I have a heart condition called L-TGA. That stands for Levo- Transposition of the Great Arteries. This is a rare heart defect that causes malformation of the heart and causes a reversal in the normal blood flow pattern because the right and left lower chambers of the heart are reversed. As well as VSD A ventricular septal defect, It's a common heart problem present at birth (congenital heart defect). This is a hole that occurs in the wall that separates the heart's lower chambers (ventricles), Pulmonary and sub pulmonary valve stenosis. The Doctors told us that this is a very complex heart defect that I would need to get much bigger for what they called it my “Full Repair”. They decided on a temporary PDA stent to help me until I got bigger.

On 3/23/21 I went into the Cath Lab for my first procedure, they placed my PDA Stent and I went into the PTCU for another three days. On 3/26/21 I was moved up to the recovery floor where I was no longer on a ventilator and started my nose tube feeds. While I was in the recovery my Dad and I spent a lot of good quality time together, snuggling a lot, waiting for my Mom to come. Unfortunately, my parents were not able to bring my siblings with them due to the Covid pandemic. They stayed back home in South Dakota with family, but we talked a lot on facetime. As well as having a lot of their pictures hung up around me.

On 3/27/21 my mom finally arrived at 11:30p and held me for the second time and it was amazing. The next morning my parents had to return a vehicle to family members. They lived a few hours away and I was content in my crib. After a few hours I didn’t feel well and went into a rapid response. The hospital called my parents who were five blocks away and told them to come to the PTCU floor and wait in the waiting room. After about 45 minutes my parents could join me in my bay bed. I was reintubated and sedated and comfortable. After a few days and more tests were done, doctors told my parents that I had thrown three blood clots, due to deep vein thrombosis, the clots went to my brain instead of my lungs because of my backwards blood flow from my heart defect. Also, the blood work showed that I went into lactic acidosis, from there I ended up with acute kidney injury and hypertension. The tests also confirmed three strokes and with further monitoring showed that I also had a seizure event captured. From then on I was extubated and reintubated multiple times due to raspatory failure. There was many wonderful nurses, doctors and staff that helped me in my journey to recovery. But finally on 5/15/21 I was extubated and was strong enough to breath on my own. On 5/20/21 I was strong enough to be moved up to the recovery floor. At this time I stumped all the doctors, because they didn’t know why I was already starting to be a medically complex and confusing patient. Some said a medial mystery. It became clear I was not a text book patient, that I would always do the opposite of what the doctors predicted. If there was a small percent chance that if something could go wrong my body decided to go down that path. They ended up calling it “Pulling A Raya”.

On the recovery floor I was making a lot of progress, but when the doctors ordered a discharge ECHO it showed that I needed to have another cath lab procedure to open my PDA stent to get better blood flow. On 5/26/21 I went in for my second Cath lab procedure the doctor performed my balloon angioblast. I recovered from this one much better then the first one. Then finally after being in the Michigan hospital for 77 days, I was discharged 6/4/21 and could make the 14 hour drive home.

Once home I finally reconnected with my sisters and all of my family (cousins, aunts, uncles, grandparents, and family friends). It was an interesting adventure getting to know them in person. My older sister Luna was a very sweet helper when it came to my cares and was very protective and still is. My twin sister Aurora on the other hand was very loud, demanding, and opinionated, but also very fun. I love to watch and interact with them. During this time I had respiratory viruses that required me to be hospitalized. On one of my cardio appointments my oxygen status started to go down again even while being on a continuous flow of oxygen. My cardiologist messaged the doctors in Ann Arbor. The doctors decided that I would need to have another Cath lab procedure to my PDA Stent. Along with getting a G-Tube in my tummy so I would no longer need to have a tube down my nose to get my feedings.

Local Hospital Admissions:

7/13/21-7/17/21- Adenovirus and Human Rhinovirus

8/19/21-8/23/21 – Admitted for Ann Arbor Flight

On 8/23/21 my mom and I got back on a med flight to Ann Arbor. Once I was admitted mom and I waited for my Dad to get there. On 8/26/21 I went back in to the cath lab for my balloon dilatation of my PDA Stent. My third stent procedure went very well and I recovered very quickly. On 9/7/21 I went into surgery for my G-Tube. I came out surgery with flying colors and was so very happy to be able to get the tube out of my nose and the tape off my face. I felt like a new Raya. After being in Ann Arbor for 21 days On 9/13/21 discharge papers were in and got to make another trip home.

Being home I was in and out of the local hospital for respiratory viruses and illnesses. Along with seeing every doctor in every department that our local hospital has to offer, most of the hospital staff became my friend. When in the hospital for illnesses I found my new favorite movie, Moana. I DO know how much it drives my Mom crazy, but my sisters and I still love watching it. During this time I also had issues keeping any on my feeds in my tummy. So my parents and I talked to local pediatric surgeon who recommended that I get what is called a Nissen. It would be a surgery that would help me keep my food in my stomach better. This surgery would have to wait, because again my body was about to “Pull A Raya”.

Local Hospital Admissions:

9/28/21-10/15/21- Coronavirus (Not Covid 19) + Aspiration Pneumonia

10/19/21-10/29/21- Aspiration Pneumonia

11/2/21-11/6/21- Human Rhinovirus / Enterovirus

11/16/21-11/30/21- Human Rhinovirus / Enterovirus

The end of November 2021 I started to again have a hard time with my oxygen levels and required oxygen again. My ECHO showed that my PDA Stent was starting to not work for me anymore. My doctors and my parents decided to go with a BP Heart Shunt. I continued to be in and out of the hospital with illnesses but finally got a date set to be flown again back to Ann Arbor. To keep any viruses at bay I was in isolation for 6 weeks prior. My siblings stayed with family members during this time, but I knew that they were always thinking and praying for me. I was also thinking and praying for my family and friends as well.

On 1/2/22 my mom and I were on my third medical flight to Ann Arbor again. My surgery was on 1/3/22 I went into the operating room for my first open heart surgery. It took roughly 3 hours, and I was in recovery. My parents were told that this shunt should get me by so I could continue to get bigger for my full repair. By this time most of the staff remembered who I was and were all very happy to see me, and I was very excited to see them. Except for Lab I do not lab. On this trip they did a scope on my throat to check on my mild to moderate Malacia and showed that I also have a laryngeal cleft, this could be the reason for my feeding difficulties, and being advised to get a swallow study done when we went back to South Dakota. Which I would not cooperate with any of the following swallow studies. I don’t think that I will ever cooperate with any futures studies either, because I am a stubborn girl. I ended up being in the hospital for only 8 days this time, I was discharged on 1/10/22 to make another 14hr long drive back home to South Dakota, but time passed by quickly because I watched Moana on repeat, knowing how much Dad and Mom loved it as much as I do.

Still not being able to keep most of my feeds down, we consulted the South Dakota Pediatric Surgeon and decided to have a Nissen done. A Nissen Fundoplication is when the surgeon wraps the top of the stomach around the lower esophagus. This reinforces the lower esophageal sphincter, making it less likely that acid will back up in the esophagus. On 3/8/22 I went in for my Nissen Surgery, I was in the hospital for a couple of days to be monitored closely due to being a medically complex patient. Even after this stay I continued to have to be admitted multiple times because of more respiratory illnesses. Every time I would have to be admitted the staff were getting more and more attached to me, I had all of them wrapped around my tiny little finger.

Local Hospital Admissions:

2/1/22/-2/4/22- Covid-19

4/17/22-4/19/22- Human Rhinovirus / Enterovirus

5/9/22-5/18/22- Feeding intolerance and GI Bug

7/27/21-7/28/22- Human Rhinovirus / Enterovirus

After about 6 months from my third trip to Ann Arbor, I started to feel more tired and had less energy. I would try to keep up with my sisters who could run around on their feet. I tried to keep up but I could not walk just yet. Here I was about to “Pull A Raya”. When we had one of my cardiology appointments, my scans showed that my shunt wasn’t keeping up anymore, it was supposed to work until I was around 2 ½ years old, only worked for 6months. So my cardiologist made a call to my doctors in Ann Arbor again, and that is when they coordinated a date to go back for what they decided would be my “Full Repair”. The doctors said I was now big enough.

Before going to Ann Arbor my local cardiologist explained to my parents how this surgery was going to go. My “Full Repair” was called the Senning Rastelli procedure it is to close the hole in the patient's ventricular septum, directing blood flow from the left ventricle to the aorta. A valve conduit was inserted into the right ventricle to direct blood flow to the pulmonary artery. The doctors told my parents that the severity of this procedure would be a 9/10, and this would be a very complex surgery. Also the decision was made to go into isolation again so I would not get sick for 6 weeks.

On 10/7/22 we were in Ann Arbor for the fourth time and had several doctor appointments and scans for my surgery. We met with my cardiac surgeon, and she explained the surgery to us and some of the risks involved. One of the biggest risks that we could face would be a Heart Block. Heart block is a condition where the heart beats more slowly or with an abnormal rhythm. It's caused by a problem with the electrical pulses that control how your heart beats. The doctor informed us that normally the odds of developing heart block would be around 1% but since it is Raya I will give it 5%. After filling out all the paperwork my parents and I stayed in the hotel room for the weekend.

On 10/10/22 at 6:00am we went and checked into the hospital and was ready for my “Full Repair”. During this surgery I was put on bypass and the doctors worked for roughly 12hrs on me. My heart wasn’t quite textbook. After my surgery my Mom and Dad were informed, that I indeed “Pulled A Raya” I ended up developing total heart block, as well as Hemidiaphragm paralysis. The protocol is to wait 7-10 days on a pacer to see if my heart would correct itself. While waiting with my temporary pacer for the duration. I had a surprise visit from some family. My sisters were brought up to Michigan from South Dakota. It was amazing to see a few of the greatest people in my life. While there my sister Luna finally understood what a 3-year-old could understand why we always had to go into isolation and be separated, it was to keep me safe. I am so thankful for my sisters and appreciate what they do for me.

My heart block did not fix itself and I would need to have a permanent pacemaker put in. On 10/19/22 I went back into another open-heart surgery to get a permanent pacemaker and have my diaphragm pinned down. The doctors told me that I would need maintenance work done in my life roughly in about ten years. My mom joked and said, “I will accept coming back in 7-10 years because it is Raya”. Little did we know that my body would in fact “Pull A Raya”. On 10/26/22 after 20 days in the hospital I was discharged and heading home.

During this time of being home I was hitting more milestones every week. Doing all my therapies. Eating therapy is not going as well, sometimes I would be willing to try and eat by mouth. Usually, I would refuse everything. When it came to my physical therapy, I started walking and then running. I finally could keep up my sisters. My therapists ended up becoming like my family and I have really bonded with them. They will forever be part of my village. Along with my home health nurses. I enjoy playing and learning with them, and I keep them on their toes while being in and out of the hospital. Also, having many doctor appointments along the way. The nurses and my mom are understandably hypervigilant of me.

Local Hospital Admissions:

2/1/23-2/2/23- Seizure activity

3/29/23-4/6/23- Human Rhinovirus/ Enterovirus and Human Metapneumovirus.

Since we thought my heart issues were taken care of we now wanted to focus on my neurology. I was showing signs of absentee seizures. Despite our best efforts we could never capture any seizure activity on medical scans, but my mom and home nurses try to catch any episodes on their phones to send to the doctors. So I was put on medication to help with my episodes. My neurologist thinks I have what is called Alternating Hemiplegia of Childhood. Alternating hemiplegia of childhood (AHC) is a rare neurodevelopmental disorder characterized by repeated episodes of weakness or paralysis that may affect one side of the body or the other (hemiplegia) or both sides of the body at once (quadriplegia). Additional episodic symptoms usually include intermittent abnormal eye movements, episodes of muscle stiffness or posturing (dystonia), and in a substantial percentage of cases, seizures. I was put on medication which seemed to work but ending up discontinuing it for what was next to come. My doctor had said, “ I am not sure how many times lightning can hit the same child.”

On 09/25/23 my heart decided to “Pull A Raya”. My home nurses and my mom had noticed that I was getting more tired and slowing down while playing with my sisters. Going to my routine appointment my echo showed that I had an enlarge Left ventricle, moderate to severe right mitral valve regurgitation, my heart beats are out of sync and sluggish. My Heart function went from 56% to 35% in 6 months. The blood work had confirmed that I am now in moderate to severe heart failure. Once again, in Raya fashion, I am stumping my doctors. They have only seen 7 other cases who have had the full repair and went into heart failure.

I will be going to Iowa City, Iowa on 12/17/23 to get imaging of my heart, speaking with an advance heart failure doctor, as well as possibly going into a Cath lab procedure to see if the doctors can do CRT. CRT stands for Cardiac Resynchronization Therapy. CRT is for heart failure patients with moderate to severe symptoms and whose left and right heart chambers do not beat in unison. We are not sure what the future holds at this point, if the CRT and medications will help to either get me by and wait for a heart transplant or be put on the transplant list right away.

I want to say to everyone, for the last two years of thoughts, prayers and love and the years to come. I truly don’t think I would be here without you. To every poke, prod and surgery that the doctors and nurses have given me. To my home nurses and home therapist who love me like their own. To my sisters who have been by my side and juggled life in the many homes so Mom and Dad could be with me in the difficult times. To my parents who have been by my side every step of the way and kept all the family and friends updated miles away (you guys are my sunshine). To my family and friends where no deed was ever little. You made the biggest difference.

My family is truly blessed to have a community of love and support in many ways. As well as understanding of my family predicament. No matter how big or small any support of love and prayers mean the world to us. Sometimes “Pulling A Raya” means I have major medical issues to where my family is no longer surprised, but my family also thinks “Pulling a Raya” can also be a good thing because with all of the difficulties I have overcome, I have had numerous positives happen for me, such as walking (doctors questioned if it was even possible), talking, loving everyone I have met along the way and living life to the fullest. Cheers to another thousand times watching Moana and “Pulling A Positive Raya”.