Eva has had an extremely challenging Journey already in her now, 18 months of living here on this earth. To best sum up her past and current health issues I will simply type out the list of her most recent clinical summary along with links to help explain what each are… Turners Syndrome,SVT (supraventricular tachycardia), Nissen fundoplication (with gastrostomy tube placement/g-tube), premature infant, PFO (patent foramen ovale), pericardial effusion, mitral valve stenosis, milk protein intolerance, lymphedema, lymphatic malformation (cystic hygroma), IUGR (intrauterine growth restriction), hydronephrosis, esophageal reflux, dysphagia, cystic renal dysplasia, congenital stenosis of aortic valve, coarctation of aorta, bicuspid aortic valve.
Little Eva was in the NICU from the day she was born, September 2, 2014 until January 21, 2015. Before she left she hospital she had her first heart surgery at 8 days old, she had a fundoplication/g-tube surgery at 4 months old and countless X-rays, scans, IV’s and needles. Before she left the hospital I am pretty sure she thought many of her nurses were her mom instead of me. Yes, I went every day (not including the week I was sick and unable to see her) but what I failed to mention was I that I was only able to stay a few hours each day (unless she was having surgery where I never left her side), but my time with her in the hospital was not enough.
Her first Heart Surgery was on September 10, 2014 and it was to repair her aortic coarctation with a subclavian flap. Her h/r Her surgeon took 8 minutes to do the repair, boy was he fantastic… and a bit strange. As soon as they put her in a PICU room so she could be monitored closely, her nurse gave me a bumblebee pendant with a poem on it. That was the first time I allowed myself to cry since the babies were born. I cried for so long when I was left alone in the room with her as she was fighting so hard. My emotions were held in for so long I could have cried for a for days, or even years.
Her balloon angioplasty in her heart (because of a recoarctation) was November 18th, 2014. This procedure was not supposed to be a stressful procedure but we are a family that doesn’t play by the rules. She developed a pseudo aneurism and she needed to be monitored in the PICU for a few days. Because of her syndrome, it effects her tissue and makes her very unpredictable during certain procedures. She healed nicely but it was mentioned that this was the first time her doctor had seen an aorta need to be intervened so soon after a surgery. I believe it was at this point that I realized that when any doctor told me not to worry, maybe I should.
The fundoplication/g-tube surgery was mid December, 2014, and it was the one surgery we hesitated on doing. Nothing about it felt right and looking back we wished we would have looked at other options. Her healing for this surgery was a nightmare. She was in pain much longer than they expected and the primary concern for her having this surgery, was her “reflux”, which was still there even after the surgery. You can imagine our anger and guilt that followed and we still carry with us after this disaster. There is a small percentage of people that have had a fundoplication, develop a complication called gas bloat syndrome, that prevents them from burping on their own…. well yes, that also happened. She still struggles with this currently and we have to vent her g-tube often. That means we have to allow the gas from her stomach escape so she doesn’t feel uncomfortable and start gagging.
Ironically just like her brother, a few days before she was to go home she apparently stopped breathing. This traumatizing day was December 23, 2014, two days before Christmas. Nobody was able to tell us exactly what happened, all we know is her nurse was holding her, she started crying and turned blue. They had to give her air and she started taking breaths again. After this ordeal I was in absolutely no rush to get her home, but little did I know almost a month later, she would be home with us trying to adapt to a life outside the hospital.