Before we came home, Joshua was checked by the head pediatrician and we asked to have an echo. He could not hear a murmur so he would not do an echo. So we went home with our 3 day old "healthy" baby boy. I spent 2 weeks trying to breastfeed but he did not feed well, was very unsettled and kept losing weight so we decided to bottle feed. Joshua settled and started feeding better but very slowly.
Joshua then developed a cough and we were taking him to the doctor every week. Following a chest x-ray, the doctor diagnosed a mild case of pneumonia even though Joshua had no temperature. We started antibiotics but he did not improve.
After a week on antibiotics we saw a different doctor who was unsure about the pneumonia. He did not like they way Joshua was breathing and that he had continued losing weight. We got a referral to a pediatrician and saw him 2 weeks later.
The pediatrician checked him over and listened very carefully to his heart. He heard a "very loud murmur". Joshua had to be in hospital straight away. He was in congestive heart failure and had pulmonary hypertension. Even though we had already a daughter with a heart condition, she was kept in hospital and we didn't really take notice of the symptoms as there was also so much else happening with her. I think with Joshua we had our suspicions but we had seen the doctor so many times and been told he was ok. The pediatrician said the murmur couldn't be heard at first because of the high pressures in Joshua's lungs.
We went straight to the hospital where Joshua was admitted. He spent a week being X-rayed, started on medication to stabilise him and had a catheterisation. They were unsure of his diagnosis but suspected an AP window as the symptoms were too severe for just the VSD and ASD they found. AP Windows are very difficult to find and can be missed in surgery.
We came home for the weekend then went back the next week for surgery. I prepared for a long stay.
The surgeon was told to look for the AP Window. After over 6 hours in surgery Joshua went to ICU. They found the AP Window. It was huge, 2cm. He also had a large VSD and small ASD.
In ICU the first night, his blood pressure was rising and he had 2 tamponades. He needed cardiac massage to help his heart keep beating. At 8pm he was taken back to surgery. Joshua was bleeding out and needed to have a few more stitches because of the high blood pressure, some tiny stitch holes would not seal over as they should have normally. It was after 10pm when he came back to ICU that night.
After 2 days in ICU Joshua drank a bottle. Only a few mils but he guzzled it so quickly. It was amazing how good that made us feel after Hannah's feeding problems. We finally were able to smile.
Joshua was on oxygen for a few days then just 7 days after surgery we went home.
He is fit, healthy and growing well now. Joshua does not have any other problems like Hannah has. He is a very happy little boy who eats anything and everything.
