When Zeke Mackenzie arrived...
My son is now 2 years old, and I've finally had some time to put his birth story down on paper. It has all been in my head, and in my journal in bits and pieces, but here goes:
When I had the routine scan with Zeke (about 19 weeks pregnant) the ultrasound Doctor said he had a syndrome which caused the left ventricle of his heart to not grow. They basically said he would die when he was born and that we should "consider our options" now.
So we prayed about our little boy, and decided to leave it in God's hands.
The next scan at about 26 weeks showed that the left side of Zeke's heart had grown and that it was the size it should be. The cardiologists and other gaggle of specialists had no explanation as to why his heart had healed. We believe it was a miracle.
Zeke was born on 26 November 2002 at around 9am in the morning by C-Section. He was 3.38kg and 51.5cm long 35.8cm head circumference. I had a very quick nurse and then he was taken away. The Paediatrician wanted him to spend the first day and night in the nursery so he could be monitored properly just to make sure everything was going to be ok.
All through that first day and night, the nurses reported back to me that he was doing well, they just had to get him to start sucking and he'd join me in my room. I was really looking forward to holding my precious little baby.
Early the next morning the Paediatrician came into my room. I could tell from the look on her face that something terrible had happened. She said to me, "It's not good news I'm afraid." I will remember her face and that statement for the rest of my life.
Zeke had gone into cardio-vascular failure, we were in shock. They told us his chances of survival were slim and they'd evacuate him to the Royal Women's Neonatal Intensive Care Unit where they're try to stabilise him and determine the cause of the heart failure.
Zeke was struggling to breathe. He gulped in air and each breath made his little chest concave and his belly suck right in. The first time I saw him since he was born, he was in a retrieval humidicrib attached to monitors, wires, central lines and oxygen. He was losing body weight rapidly as he couldn't feed (his lungs were swamped with too much blood because his heart wasn't pumping it around his body effectively) and he had to work so hard for each and every breath that he was consuming kilojoules very rapidly.
So that was day two. Our world had just fallen in on top of us, but once again we knew we had no option but to leave it in God's hands. Nothing we could do could change the situation. We had heaps and heaps of people from our church and friends around the world praying for us as we walked this really tough road, and even though we were emotional and distressed at watching our son go through so many invasive tests and intervention to keep him alive, we felt peace.
So Zeke was evacuated to the Royal where they stabilised him in the Intensive Care unit for babies... he looked like a giant because all the other bubs in there were premmies. He was full term and very long. He was being hydrated by a sugar water line in through his belly button, but wasn't able to have any milk of any kind. The Doctors called in a cardiologist who did an ultrasound and said Zeke had a massive hole in his heart and a narrowed pulmonary artery which wasn't allowing the blood to circulate around his body. These were things that hadn't been picked up beforehand because the circulation system doesn't kick in until you're born and you take your first breath.
The cardiologist was a very special man who explained everything that was happening and did not fill us with any false hope. He told us the situation was tough and go and he may or may not survive.
On day three the cardiologist decided they had to operate to put a band around a hole in his heart, and open his aorta which pumped the blood around his body, or he'd die. It would be closed heart surgery and they'd go in under his arm.
They did the surgery in another wing of the hospital, about 5 mins walk away. Special friends along with my Dad came down to the hospital to sit with us while we waited. After 3 hours we were told that he had survived the operation and the surgeon believed he had successfully opened up the artery and put the band on his heart. On the way back to the ICU the respirator battery gave up the ghost for a couple of minutes Zeke breathed by himself while they switched batteries.
Zeke had no voice after this first operation. Before the op he didn't ever cry - he didn't have the energy to. Every ounce of his energy went to staying alive. The surgeon warned us that because the vocal cords were entwined with the artery, in a baby this small it is a likely side effect that a cord is inadvertently severed during the operation. We prayed that his voice would come back.
Anyway, after about a week we were allowed to hold him. This was a really special experience for DH and I. He was being kept alive on a solution drip, as his system still couldn't cope with anything else. So he looked like a little withered old man and when we held him we could feel his skin slipping over his bones. Apart from the first time I saw him when he was born, he never looked like a new born. It was like the pain and suffering he went through aged him instantly. The eyes that used to look up at me were worldly wise far beyond his newborn status.
He started crying - well trying to cry. His face would scrunch up like any newborn and tears would fall, his mouth would open wide but only this raspy sound would come out. Crying was really bad for him, because it could send him into cardiac failure.
The Doctors told us he needed open heart surgery to close the big hole in his heart, but they hoped by banding it they would be able to postpone open heart surgery for at least a year as small babies don't have a very good survival rate of this particular type of surgery.
So after that first week Zeke was transferred back to the Everton park hospital so he could be fattened up before he was sent home. He was attached to several heart and breathing monitors... and was fed by a Nasal Gastric Tube which had to be changed every second day. He hated that part and for months after he got home he'd hate anyone touching his nose.
His heart condition made it very difficult for him to breathe - he still had to suck in each breath and he breathed heavy and fast. He struggled to keep any milk down, so he was fed around the clock every two hours. He'd inevitably vomit up at least three quarters of every feed, and that was really hard to see. Weight gain was slow but steady, another miracle considering not much milk was staying down.
About two weeks post-operation, the specialists decided he'd have to have the bypass surgery sooner rather than later, and the decision was made to keep him in hospital until he was 5 kg heavy and then do the operation then. So Dean and I travelled down to the hospital every day (about 50 mins each way). I'd go in the morning, he'd go at night. We'd juggle Gabrielle (20 mths), Dean's work as a pastor (which the church reduced to half days during that time but still paid us full time) and Zeke. Plus I was expressing milk for some of that time until I got mastitus and stopped because I was so exhausted.
It was the hardest thing I've ever had to do. There are still some days now when something will scratch the surface of the scab that has mostly healed those painful emotions, and the tears will still fall as I remember what that little boy had to go through.
Anyway in February the Docs decided he was fat enough to attempt open heart surgery. So he was transferred to the Prince Charles Hospital and had the surgery the next day. It seemed so wrong to see a tiny baby with a huge zipper stitched up the front of his tiny chest. Because he was three months old now, they asked one parent to help calm him down whenever he had his NGT changed or bloods taken, or drains removed, or stitches put in or anything like that. If you've ever had to hold your child down while someone digs around in his groin or neck to put a central line in, you'll know what I mean when I say sometimes I just had to find a quiet corner and have a bit of a melt down.
The day after the open heart surgery he came out of intensive care, and 7 days later he was home. And that was such a beautiful feeling. To carry him out of that hospital for the first time... simple words just won't do it justice.
We named our beautiful boy Zeke before he was born - when we had no idea that he'd have all those extra heart complications. Zeke means "The strength of God" and that has certainly been true in his life so far.
Thanks for listening. It helps to get this all down. As I said, it's a bittersweet experience to look back over his life so far. The grief is still there but only emerges every now and then, but the hope and the blessing shines through so much stronger. We're so grateful to share the journey with Zeke. He was the one who had to endure such a difficult start and we consider ourselves priviledged to have him in our lives. What a precious son :D
