Early pregnancy with Iris was uneventful. We had had two early miscarriages before our first child, so we had an early viability ultrasound that gave us peace of mind because the baby’s heartbeat was perfect. Since I was 20 weeks pregnant on Christmas Eve and we had traveled to see family for the holidays, the anatomy ultrasound got pushed back by a couple of weeks. At the ultrasound, we were told about 2 concerns with the baby. The first was that the baby had a single umbilical artery, which was not a concern on its own, but the baby also had a complex congenital heart defect - double outlet right ventricle (DORV). That day, we also found out that she was a girl and decided to name her Iris. The name Iris means the flower, but it also means rainbow.

The rest of the pregnancy was full of visits to the maternal-fetal medicine specialist and well as pediatric cardiologists for fetal echocardiograms. Later in the pregnancy, we were told that she might not have DORV but that several of the structures on the left side of her heart including her mitral valve and aortic arch were small, similar to a condition called Shone’s Complex. She also had a ventricular septal defect or VSD (hole between the lower chambers of her heart). We were told to expect at least one to three open heart surgeries, possibly as soon as the first week of Iris’s life. We decided to temporarily relocate across the country to be close to family so that they could help watch our older son while Iris was in the hospital. The week we moved ended up being the same week that most of the country locked down for the first wave of Covid-19.

Iris was born at 36 weeks, 5 days gestation and her initial heart function was surprisingly good, so we were relieved that she did not need heart surgery as a newborn. However, she had other health issues including a cleft palate that caused feeding difficulties, neonatal hypoglycemia, jaundice, severe obstructive sleep apnea due to a small set-back chin, and vision concerns. Further echocardiograms showed Iris had small left-sided heart structures (Shone’s Complex) and double outlet right ventricle (DORV). She spent 19 days in the NICU before being discharged home with a feeding tube.

2 weeks after coming home, Iris had her outpatient cardiology follow up appointment and was showing increasing signs of heart failure, which was treated with diuretics to give her as much time to grow as possible before her open heart surgery. At around the same time, Iris was diagnosed with a rare genetic condition called Kabuki Syndrome, which effects 1 in 32,000 births. She spent a few weeks at home with her parents, brother and grandparents. Her favorite things were listening to music, being swaddled and held, looking at black and white books, and her pacifier. After 25 days at home, she was developing worsening heart failure symptoms and went back to the hospital.

At 7 weeks old, Iris underwent open heart surgery to open up a hole between the upper chambers of her heart (atrial septectomy) and place bands around her pulmonary arteries to keep too much blood from flowing to her lungs. The goal was to get her to 4-6 months old before her next heart surgery. She recovered well and went home a little more than 2 weeks later. In that time in the hospital, we discovered that she loved listening to John Denver and that her hair was starting to turn reddish.

After 2 and a half days back at home, Iris suddenly stopped breathing after a feeding. CPR was done and she was rushed back to the hospital. The cause was never identified, but she was diagnosed with reflux and had abdominal surgery to prevent reflux and place a permanent feeding tube. Unfortunately, she did not heal from that surgery. She had multiple infections and possible sepsis while in the hospital, and coded once, landing her in the ICU on a ventilator and heart medications. It was decided that she needed to have another heart surgery called the Norwood that would make the right side of her heart do the work of both sides. Doctors in the ICU spent a week trying to get her into better health so that she could have the surgery. However, it turned out that the right side of her heart (the good side) had stopped functioning well because some extra tissue in her heart had suddenly blocked the hole between the two sides, putting a large amount of pressure on both sides of her heart. With the good side of her heart not functioning well, the chance of her surviving the surgery and coming off life support was very small, and even then she would still need to survive 2 more open heart surgeries after that if her heart could handle them, so she would probably never leave the hospital. We decided to begin comfort care and remove her from life support.

On August 1st, we had Iris baptized and Iris had visits from her grandparents, brother, aunts and uncles and friends, who had not previously been allowed to visit in the hospital due to Covid-19. That evening, we had the doctors remove her from the heart medications that were keeping her blood pressure up, expecting that she would only live minutes without them. She miraculously continued to be stable, and in the morning, they removed her from the ventilator. She was able to breathe on her own. We were told she might live another day or two and that we could try to take her home if we wanted to.

We took Iris home with the hopes of having her see the sky again and see her brother again. We were blessed with 13 extra days with her after we removed her from life support, 11 of those at home. During those days, we made a “bucket list” of things we wanted to do with Iris each day. Here are the things she did:
-Meet her cousins
-Family photo session
-Rock in the big rocking chair with Grammy
-Listen to Daddy playing piano
-Go for a walk outside
-Touch a tree, flowers, leaves, rocks
-Play with Henry in the living room play area
-Story time with Henry
-Father-daughter dance
-Try a bottle again
-Meet her great-grandmother
-Meet her aunt who she hadn’t met yet
-Lay on the grass looking at the sky
-Go for a ride on Grandpa’s golf cart around the neighborhood
-Swing on a swing
-Sit by a fire
-Go to a farm and see animals
-Lie on a hammock with Mommy and Daddy
-Have a tea party with her stuffed animals
-See fireflies
-Meet her grandpa
-Visit a 2nd state
-Visit a 3rd state
-Receive a love letter
-Attend a cookout
-Feel her toes in the sand/water
-Family movie night
-Pop bubbles
-Play a musical instrument
-Make faces in the mirror
-Go down a slide
-Pose for Christmas photos
-Have a picnic
-See a field full of sunflowers
-Watch a sunset other than from a hospital window
-Go on a boat
-Cheer for Ohio State
-Go barefoot in the grass
-Have a dance party
-Plant a plant
-Listen to Bible stories
-Be worn in the ring sling baby carrier
-Try food besides milk
-Lots of listening to music, snuggles, and books

Iris did amazingly well for 10 days at home and even took bottles by mouth during that time for the first time in several weeks. On the morning of her 11th day at home, her breathing began to change and we took her outside in the backyard and sat under an old oak tree with her listening to music. She took her last breath in her parents’ arms at 2:31 that afternoon, August 13th, 2020. She was almost 17 weeks old and a few days from turning 4 months old.

We are so grateful for all the support and prayers from Salt House during Iris’s life and since then. We always think of Iris when we see rainbows and iris flowers, so the irises, the curved arch of the garden and the different colors are all meaningful symbols to us.

Chris, Stephanie, and Henry