Josie’s Story

Josie was born January 4th, 2017 via c-section, weighing 7lbs 3oz.
She was taken to the nursery and put in an isolet because she had a bit of “wet lung”. During her first night, the nurses noticed rapid breathing and trouble feeding. After putting her on monitors, they noticed her heart rate was high but her oxygen level was never under 93.
We were discharged a few days later with a precautionary echo booked for Feb 1st in Regina. (A small hole was detected in previous fetal echos, but doctors were confident it had closed before birth or would close shortly after).
Fast forward to January 16. Josie had been having trouble gaining weight and throwing up after every feed. She would sleep almost all the time and rarely cried. The final sign that made me take her to the doctor was her shallow, wheezy breathing. If I hadn’t had two other children, I may of passed this off as normal too. We went to our GP, who contacted the paediatrician on-call at Regina General Hospital. Josie and I sat in the ER waiting room for 5 hours before being seen. I was sick to my stomach wondering what could possibly be wrong and being paranoid that someone in there would make her more sick.
After finally being seen, I heard the words for the first time, the words that feel like a punch to the gut… “Heart Failure”.
The next day, Josie had an echo, an ecg and a chest X-ray. The following day, Dr Bradley was doing a clinic in Regina and came up to explain Josie’s findings. She had a moderate VSD (ventricular septal defect) and a small ASD (atrial septal defect). We were hopeful that both would close on their own with the help of medication. She was also put on medication for acid reflux to help keep her feeds down. It was also found that she has a bicuspid aortic valve that needs no interventions for the time being.
The next few months were filled with trips to cardiology clinics in Regina, sleepless nights, weeks spent in the paediatric ward at RGH, formula changes, NG Tube feeds and training, visits to health nurses and our dietician for weight checks. Nothing was helping. After deciding that surgery was necessary, our goal for surgery was 5kg or 6 months old. Josie reached neither before surgery.
On April 11th, Dr K presented Josie’s case to Edmonton, and her surgery was scheduled for April 18th.  There was not much time to prepare, but we were simultaneously ecstatic and terrified that we got in so soon. We flew by air ambulance from Regina to Edmonton on April 17th, the flight was rough on Josie as she had such a sensitive tummy that she couldn’t feed on the trip.
Her surgery was bumped on the 18th due to no beds in the PCICU with no indication of when they could actually schedule her in. With the help of the paediatric cardiologist on-call, and I’m certain angels watching over us, Josie’s surgery was set for second case on Friday, April 21. Her surgery went well. Her ASD was completely closed and a small residual VSD was left unavoidably. Josie was out of the PCICU in about 24 hours and spent 2 nights in the ICE room after. We found out that she gets very irritable on morphine so we had to play with her pain meds a bit.
She started tolerating feeds and adjusting to the pain. Her chest tube stayed in a bit longer than expected because it was still draining. We were discharged April 26th and made our way home. We removed her ng tube on May 8th, 2017.
30443521_10160197173200641_7987987426452701184_o.jpgJosie is now 15 months old. She is in the 26th percentile (up from the 1st right after surgery). She loves running around with her brother and sister, loves all different kinds of animals and is queen of our castle. She talks up a storm, saying about 15 real words. She has no developmental delays despite the 3.5 months of laying in a hospital bed almost constantly on ng feeds. Her last echo showed that her residual VSD is most likely completely closed and that her bicuspid aortic valve is functioning perfectly for now. We see cardiology again in a years time. We feel so lucky that our little hero came out the other side of her journey as unbelievably strong as she did.

 

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