Krisha was transferred to the hospital and the surgery was scheduled when she would be 3 days old. I of course could not be there for the surgery but Deepak spent the night outside the OT, the surgery took almost 14 hours! As per the doctor the aorta was small but the surgery had gone as planned.
It was only the next morning however I got to know that she had gone into cardiac arrest couple of hours post surgery. Her blood pressure dropped sharply and the heart had stopped beating. They managed to resuscitate her but she had to be put on the ECMO machine, which is basically a machine that supports the heart and lungs. The fact that they were able to bring her back was a tiny miracle in itself and also the fact that they had the ECMO machine on standby, which is not standard procedure. Even a tiny bit of delay and she would not have made it. Thankfully there was no blood loss in the brain due to this which was a major concern for the doctors.
Kaira and I were discharged from the hospital the next day but by the time we got home it were a bit late in the evening so we decided to visit Krisha the next day. Bringing my baby home from the hospital was something I had always imagined but not having Krisha with us, we felt the loss acutely. My friends had decorated the house for our welcome and I wish we could all have been welcomed as a complete family!
I was able to see Krisha on day 3 of surgery. It was very traumatic to see her that way for the first time. 2 days before she looked like a normal healthy baby and now she was lying with her chest open, surrounded by machines and medications with her body all swollen up. Met the Australian doctor on call who had worked on HLHS cases before and he assured us that though the post surgery time was very tough on parents, all would be forgotten once she recovered from the first stage.
Being on the ECMO machine for too long has its own side effects, so after slowly minimising the support on the machine they finally removed it on day 6. How her body would respond was very unpredictable since her heart and lungs would have to function independently. The procedure was very critical and we were told to spend time with her. She actually opened her eyes that day and even looked like she had a smile playing on her lips. It was again a milestone day in her recovery and we all but said our goodbyes, willing her to make it through this. We took a picture with her but couldn’t take one with her eyes open, felt so sad and prayed that God would give us a chance to do that. Went outside to pray for her as we waited. The doctor came out after a couple of hours and thankfully our little fighter made it through ! She had come off the machine quite well but of course they would keep monitoring her closely.
It was day 8 when they decided to start closing the chest. Although they decided to close it in layers, when they went in they felt that she could handle it so closed it almost fully except for the top layer. Closing of the chest adds pressure to the heart and she responded well to that, however the lungs showed some bruising on the right side. The oxygen saturation level dropped to 64 which were lower than expected. For a normal person saturation levels (oxygen level in the blood) is around 99-100%, for HLHS babies it is generally in the range of 70 and above. The kidneys did not look too good and the dialysis/ catheter had some technical problems. So all in all a very active day, not all positive and overwhelming amount of information for us.
However that night Krisha took a step back again when her BP fell overnight and reached below 40. The doctors had to do an emergency procedure at around 5 am to re-open her chest and relieve some of the pressure, medication was also increased. Another step back for her recovery as now they would be overly cautious in closing her chest again. My poor baby. We got a sense from the doctors that they might have pre-empted the closing in one sitting and it might have been a better idea to go slowly as planned. Nothing we can do about it now though except wait for her to stabilize again.
On day 10 of her surgery, Krishas numbers looked quite good, pressure in high 40s to 50s and saturation in the 70s. Docs did a procedure to find a vein in the left leg to remove the dependency of using the right leg for all medications and fluids, which should also bring the swelling down in the right side. The sedations were being reduced slowly so we were really concerned when her expression looked uncomfortable and she seemed on the verge of crying. We hoped and prayed that she could not feel too much pain; we spent time with her and tried to soothe her. We could only touch her hand and a bit of her face.
