On July 4th, 2011, we began our HLHS journey with Liam. Born at Mount Siani (4 hours away from home) and arrived a good 9lbs 1oz, Liam had been prediagnosed with severe hypoplastic left heart syndrome, mitral stenosis and aortic atresia while mommy was 7 months pregnant. His 20 week ultrasound, the technician could not get the left side viewing of his heart ( we found out he was a boy at that u/s), we were told to come back in a month's time. Well, 2 months later we found out before Easter weekend what God had in store for us.
Our options in London and Toronto were to choose either one.The Norwood procedure, a Hybrid procedure, a heart transplant or give him compassionate care. I dont know how any mother after carrying a baby for 9 months could possibly let their baby die, unless it was nature's way. After learning what his life battle was going to be, I almost wished for a stillborn to make it easier. But he came with his fists just wailing and ready to fight, so we decided to give him a chance. With all the knowledge we had been given and researched, we decided on the Norwood before he was born. Knowing its been successful for the past 20 yrs or so, we knew giving him this would give him the chance he needed, and if it didnt work out for him then it was Gods wish.
So on July 7th, Dr Van Arsdell performed the Norwood stage 1. I think my husband and I held our breath the entire morning until he was out of surgery. Not knowing whether he was coming back to us how he left or on bypass. He did well, and surprisingly the Dr. was able to close his sternum which dosent normally happen. Thank goodness for people at Sick Kids who choose to work with tiny hearts and the people amongst their lives. Couldnt have asked for a better surgeon.
Liam did much better after sugery, he was out of the CCCU and into the Cardiac Unit on July 12th where I moved in to learn his care. July 18th, he took a sudden arrest. He had been feeding his bottle and not known to us he had aspirated, and when we laid him down to turn on the light he turned blue and was gone in seconds. CPR was initiated and then central pulse felt. No shunt murmur was heard with unrecorable oxygen saturation so a bolus of heparin was given. He was intubated and soon after they lost cardiac output and CPR repeated. He was then placed on Ecmo. On July 20th he was taken off Ecmo. On July 21st he presented seizure activity with rythmic twitching of forehead. EEG was normal, but CT scan showed right frontal lesion.
Back to the Cardiac Unit he went a few days later, now on seizure meds, thicken feeds (to prevent aspirating) and still enoxaparin, lasix and Omeprazole for his acid reflux.
August 1, 2011 Liam was discharged to the Ronald McDonald house in Toronto, waiting for a few schedualed follow-up appts. Then we headed to London to meet with the Nurse Practicioner who was going to take on our follow-up visits. We chose London only because it was quicker to get there and back in a day, as opposed to an overnight stay in Toronto. We need to save our miles and money for the next surgery which we were told would be in and around November and now its changed to January.
Liam has done well at home. He has a great team around him, the homecare nurses are to delighted to have such a young little man on their care, and OT and the pediatrician are very happy with his development and growth. The NG tube took alot of work, and was taken out over a month ago, he now takes all feeds by bottle, rarely vomits, and is smiling and laughs and just loves to entertain his audience. We only hope he will do well with the next surgery, and hope the seizures dont start again. Until next time....