for trisomy defects and other defects commonly associated with being a "higher risk" birth. We had passed all those tests and we were able to relax a bit, assured that all was going well.
I went in for a routine 2nd trimester ultrasound at Magee Women's Hospital. The technician and I joked about how difficult the baby was being in order to get a few pictures: she was in a comfortable spot and she was not moving an inch.
Tilting the table, running back and forth, using the bathroom, doing jumping jacks - nothing would make her budge. Finally, she moved enough for the technician to be able to take some images of her heart, or so we thought.
She called in the obstetrician for him to try to get clearer images. The words that came out of his mouth still haunt me: "The heart looks unbalanced". My jokes stopped, my smile wiped away as the fear of his explanation began to fill my mind.
"I really hope its just the way the baby is settled that we can't get a clear enough image. You can either set up a follow up appointment later or I can see if there's a pediatric cardiologist on the floor." There was no way I was going home without having an answer, I wasn't spending two weeks worrying myself sick. "Find me a cardiologist, I'm not leaving".
The next 30 minutes had me pacing back and forth, doubting the doctor, praying for our baby, wondering if I did something wrong, trying not to become hysterical. The technician checked on me periodically, making sure I wasn't losing my mind - which I really was, but was able to joke that children aren't supposed to make their parents worry this soon. The doctor came back in and said that there was a doctor on the floor that could give me an echo. "Good luck, I really hope I'm wrong"
Unfortunately, the doctor was right. The cardiologist, made the call to Joe (who was working in New York) to explain the situation while I went numb. What would happen to her? Would she survive? What would her quality of life be?
Thus began a whirlwind of doctor appointments: cardiologists, neonatalogists, surgical consults, research inquiries, not to mention my regular "baby" appointments with my OBGYN. We learned more about her condition as she grew, which would ultimately be Hypoplastic Left Heart Syndrome.
Chloe was born a healthy 9lb 1oz at 2:02am on February 6, 2015. She was a quite sizable baby for having cardiac issues. We were assured that her having a bit of "chunk" to her would be helpful, as most cardiac babies are born underweight. I quietly thanked God for all the weight I put on during my pregnancy. Chloe had her first heart surgery, The Norwood, when she a week old. She had a follow up surgery to repair the shunt that developed a kink, a week after that. Our chunky baby girl was strong willed, spirited, and an absolute fighter. She was off ECMO (the scariest piece of medical equipment I have ever seen) after 24 hours. Not many parents can say they've seen their baby's hear beating - it was a beautiful sight: The surgery was a success. Chloe spent nearly a month in CICU at Children's Hospital of Pittsburgh and a week in regular ICU. The doctors then started making plans to have her transferred to The Children's Home to stay between her Norwood surgery and upcoming Glenn. The time between the two surgeries, we were told, was the most critical.
During the time between surgeries, Chloe was wonderfully cared for and loved by all. Chloe went through her third open heart surgery in May of 2015. However, she developed a condition called chylothorax and had to have a special formula. Thankfully, she was stable enough to be sent back to The Children's Home a little over a week after her surgery.
Chloe was discharged July 17, 2015 - and we moved to New York where Chloe was thriving in daycare and in life.
Fast forward to August 2017 - Chloe had an appointment at Children’s Hospital to meet with her cardiologist to discuss the final leg of her surgeries: The Fontan. This surgery would complete the replumbing of her heart. We agreed that Chloe should have her heart catherization (cath) in October to prepare for the surgery in Spring 2018. We had discussed financially preparing for the surgery, working with our employers, and talking with our friends and family for support during that time. However, Chloe had other plans (as children often do!)
While in Pittsburgh due to the untimely death of my mother, we noticed Chloe was a little bluer than usual. Her oxygen saturation levels had plummeted and our cardiologist advised us to get her to the hospital right away. We learned her levels were only at 60% (normal heart is +95%) due to tiny troublesome veins misdirecting her blood flow, causing her oxygen to drop. The only way to correct the issue was to perform the final stage of the surgery that we planned to have next year.
Chloe had her Fontan surgery on September 19, 2017. The surgery was a success; however, she had a series of complications. Infections, effusions, extreme fluid build up, wound vacs, chest tubes, intubation, isolation, IV lines in numerous locations...
She spent a considerable amount of time in the CICU at various times.
Once again, Chloe developed chylothorax, which can be common for surgical patients. While most patients outgrow Chylo and fluid build up in a few weeks, Chloe’s issue lasted well into October and November.
Far longer than we anticipated. Concerned about her fluid, the team recommended another heart cath to see what was going on. They placed a stent and performed a few other procedures to help her oxygen levels.
Chloe fought her way back. She struggled with physical therapy, but continued to fight. Her stubbornness got her through some of the darkest times and she never gave up. Finally she had her wound wac and chest tubes removed around Thanksgiving. She was taken off oxygen and back onto room air.
Chloe is still not allowed to eat (she has IV nutrition), is limited in her water intake, and is still on heavy duty diruetics.
She was transferred back to The Children’s Home until she is ready to eat again (around Christmas).
Our hope is that the fluid doesn’t build up again, so we can go home.
If it continues to build, she may need to be transferred to CHOP in Philadelphia for advanced testing on her lymphatic system.
One step at a time though.
In the meantime, Chloe is enjoying a bit of “normalcy” at TCH. Well deserved rest and retreat from the busy hospital floor, while we wait.
Thank you for taking the time to read our story.
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