But sadly, Cora’s upward trend only lasted for one day. On June 3rd, her surgeon, Ashok, decided they needed to wash out her chest after all. We were all so hopeful that this procedure would solve the issues she was having. But it unfortunately was inconclusive. So they scheduled her for a heart catheterization the next day, which is another type of test to try to figure out what was causing her blood pressure to be so low.
The next morning, Cora went to the cath lab for her procedure. They placed a stent to hold open a blood vessel on her shunt. When she came out, they felt it was a success! Her SATS had improved and they were very hopeful that this was all she would need. And for the next two days, she was doing really well! They were able to wean one of her blood pressure medications, Epinephrine. She also got a drain called Peritoneal Dialysis to help pull out fluid from her tummy to allow her kidneys room to start working. She was so swollen from all the fluid and medications. By one week after she was born, her birth weight was doubled because of the fluid. It was absolutely heartbreaking to see her so big. But the PD seemed to have started helping her! Prayers were being answered!
But once again, our little girl began struggling. Her team thought she might need to go back for surgery again, but they needed to do a CT scan first to decide what exactly they needed to fix. The CT scan didn’t show anything significant, so they thought maybe she had pulmonary hypertension, which means the capillaries in her lungs were tight. So they gave Cora a medication to help dilate them. Luckily this seemed to be helping! Over that weekend, they watched her closely hoping for continued improvement.
On Monday June 10th at 1:07 a.m., we were awoken by a phone call from the PICU. I can still hear it clearly in my memory as Derek answered my phone. ‘Hi, is this Cora’s dad?’ She told us that Cora was having a really hard night and they had maxed out her Epi, but her pressures were still too low. They were getting her set up to be put on ECMO, the heart/lung machine. An hour later, Ashok called us to tell us that she was now on ECMO, and that they would be performing another surgery first thing in the morning. We were so scared. We knew how serious ECMO is. That it’s life support. That so many who go on it, never come off.
At 8 a.m., they took Cora to the OR for her second open heart surgery within 13 days since her birth. They widened a narrowing in her pulmonary artery that they originally didn’t think was a problem. They also replaced her Sano shunt with a larger one and added a valve to it to prevent backflow from her lungs. It was heartbreaking to learn that the valve had to come from another baby who had died. We thought about and prayed for peace to come to the family who had lost their baby that this valve was coming from. We couldn’t imagine the heartbreak they were feeling.
When Cora came out of surgery again, she was still on ECMO because her care team didn’t feel comfortable yet taking her off. Ashok sat down with us and told us that if this surgery didn’t help her to start improving, that there would be nothing left surgically they could do for her… At this point, we really had to put our faith in God to heal her, if it was His will.
