“This is Bailey…”

Since the morning of September 9^th, this is what we have heard every morning from the CVICU (Cardiovascular Intensive Care Unit) medical team as they begin their rounds and daily medical plan. 

Bailey is our 11-week-old twin who was diagnosed with Dilated Cardiomyopathy on Friday, September 9^th. The beginning of her journey didn’t seem out of the ordinary or different from any of our other experiences we had as parents. 

Bailey developed a cough the week of August 15^th. The cough didn’t seem random because it happened to be the week her 5-year-old brother started kindergarten and all parents know that with school comes germs, so this didn’t seem unusual. A week went by and Bailey continued to have a cough while her twin and her other siblings remained healthy; this is where our concern grew. On August 24^th, we took Bailey to the ER because she had been vomiting and had a decreased appetite. We were concerned with her lethargy and pale skin in addition to her cough. Through constant messaging with her pediatrician, we were recommended to take Bailey to the ER and get bloodwork done, which she put in an order for. While there, the ER doctors refused to order lab work because it was “evasive” and “she didn’t look bad compared to other babies they’ve seen.” They said that her weight looked good and they weren’t concerned with her vomiting, so they sent us home “to wait it out.”

The following week, Bailey’s appetite continued to decrease and her vomiting increased. Again, we were in constant contact with her pediatrician who directed us to go in and get lab work. On August 31^st, we went in for labs; the lab techs struggled to get blood because Bailey was so dehydrated, which made the whole ordeal more traumatic. The next day, her pediatrician called to say that all of her bloodwork came back normal but that it showed that she was dehydrated, so to go back to the ER to get an IV and an ultrasound of her stomach. On September 1^st, we were back at the ER where Bailey was given an ultrasound (which they said was normal), and an IV. She slowly became a bit more aware as she was hydrated. At this point, Bailey still had her cough, which was getting worse, was still vomiting, lethargic, pale, wouldn’t wake for feeds, and had a decreased appetite, and we had relayed all of this to the ER doctors. The ER pediatrician said, “I don’t see how the vomiting and cough are related.” So, they sent us home to “wait it out.”

Another week went by and Bailey’s cough was getting worse and so were her feeds. I spoke to her pediatrician again explaining how concerned we were for her because she wasn’t getting better and it had been 4 weeks (all while no one else in the family was sick). Her doctor said to wait until her two-month wellness appointment – a couple days from then – so she could listen to her lungs and possibly order her antibiotics.

Thursday, September 8^th was the day for the twins’ 2-month check-up. After listening to her lungs, her doctor put in a prescription for antibiotics and ordered a chest x-ray to make sure she didn’t have pneumonia. Jonah brought the girls home after their appointment, and I took just Bailey back for her x-ray, ultrasound of her hips (unrelated-she was a breeched baby), and to pick up her antibiotics. After being there for an hour or so, we headed back home.

I was feeding Bailey on the couch when her pediatrician called me: “where are you?” I explained that I was at home. She told me that the x-ray didn’t show pneumonia but that she had an enlarged heart. She said that she told the x-ray technician to send us straight to the ER, which he didn’t – so, yet again, we are off to the ER.

At the ER, they immediately did an EKG of Bailey’s heart and then an ultrasound, which both confirmed that she had an enlarged heart. With a lot of collaboration between the ER doctor, her pediatrician, and the pediatric cardiologist, they decided to transfer her via ambulance to Lucile Packard Children’s Hospital in Stanford. Bailey and I (Jonah followed the ambulance) arrived at the hospital around 10pm and within 30 minutes, she was hooked up to an obscene number of machines and cords and swallowed by a team of nurses and cardiologists. The first thing the attending cardiologist of the CVICU said to us as we sat on a small couch in the back of the room was “I’m glad your pediatrician ordered that x-ray.” That’s when we knew something was incredibly wrong with our baby girl.

Thursday night we heard “heart failure.” On Friday afternoon, we heard “Dilated Cardiomyopathy.” On Saturday morning, we heard “heart transplant.” In the early hours of Sunday, we heard “LVAD.”

Bailey was rushed for heart surgery at 9am on Sunday the 10^th to receive an LVAD. With a ventilator, LVAD, chest tubes, RA lines, PIC lines, and several medications, our little girl waits to be put on a transplant list and ultimately receive a new heart.

With our home being 63 miles aways and our family in another part of the state, our 3 kids have relocated to southern California to be with close family – for now that is their home. Our home has drastically changed as we sleep, eat, pray, talk, and cry in her ICU room. We don’t know how we are going to manage life with Bailey in the hospital, which is in one of the most expensive cities in California, life with our other kiddos, and a house an hour and a half away. We don’t know how we are going to do it, but we know that we have the love and support that we need to figure it out. Thank you for taking the time to read about our precious girl, and we are forever grateful for those who have chosen to take this journey with us.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.