Ben’s Story

 

Our beautiful Ben William Alfred Erickson was born 23rd Dec 2010 at RPA in Camperdown. I was induced 1 week early as he was tracking to be a big baby. After a fairly uneventful pregnancy, he arrived at a healthy 3.92kilos.

Ben is our 3rd bub and he fitted in easily. He was very cruisy and very quiet – slept a lot (like newborns do) and we never ever thought there was a problem.

When he was 4 weeks old, he had a little gastro bug that was hanging around, we thought we should get him checked out as it didn’t seem to ease up. I got a last minute appointment to see our Doctor.  Dr Helen couldn’t really pin point what was giving Ben a funny tummy but she notice that his breathing was a little laboured. I hadn’t really noticed before but she pointed out a deep recession under his ribs. She was quite concerned and thought I should take him to the Children’s Hospital to get him checked out.

Four hours later we were sitting in a Cardiologist office, being told our beautiful little baby had a heart defect called Tetralogy of Fallot and would need to undergo open heart surgery to correct it. Hearing that was like being hit over the head with a baseball bat. It was all so surreal and scary. It was the unknown that was the worst as we didn’t know anything about the defect. We went into major research mode and read as much as we could and asked a thousand questions to understand Ben’s heart condition. We came across HeartKids during our research mode. I phoned and spoke to one of the family support coordinators Karen whose son also had the same condition as Ben; it was good to know we weren’t alone.  We were also visited by Karen in the hospital who left us some HeartKids goodies.

We were told that he needed to be 6 kilos before the surgery could go ahead and it took a very long 3 months for him to put on 1 kilo but on the day of the surgery he weighed 6.1 kilos! Yeah!

Ben was 4 months old and was so so tiny; the past few months had taken a toll. He needed the surgery as he was struggling. We look at photos of him prior to the surgery and he looks like a little old man and you can see how sick he was in his face. He was so tiny because he wasn’t putting on weight quickly. Now, post-surgery he has just thrived and he has so much energy. He is like a different baby!

It was an early start after a very fitful night and it was a day we were looking forward to yet dreading so much! We checked into admissions and he had his pre surgery check. We walked around to theatre, our heads were spinning and we felt so sick. The nurses wanted to take Ben to theatre but I was so adamant that I wanted to take him. The thought of someone else taking him from us and walking away with him just broke my heart so much. I begged the anesthetist to let me take him into the theatre – it was something I felt so strongly about. I kept thinking “what if he is crying looking for me? What if he is scared and I’m not there.” They finally let me take him in after promising that I will leave straight away.  I held him close with tears streaming down my face while they put a tiny little face mask on him to put him to sleep. I then put him on the warm bed and took his little jumpsuit off. They said ‘Ok Mum, last kiss and you have to leave’. I will never forget that feeling; I thought my heart was going to thump out of my chest. There he was, our beautiful tiny little baby lying on a huge bed under bright lights, surrounded by machines with doctors and nurses racing around and I had to leave him behind.  With all the “What if’s” filling my head….I turned around and walked out crying.

That little jumpsuit kept us going that day. We hugged it tight and prayed.  Five hours later after walking around the hospital in a daze (the longest most stressful harrowing 5 hours of our lives) we were advised that Ben was out of surgery and heading up to ICU. Again, our hearts were thumping. If he is heading up to ICU that means he is O.K. It was like a massive load was taken off our shoulders, we just wanted to see our baby, touch him, kiss him and tell him how proud we were of him. Our baby just had open heart surgery. We really couldn’t believe it. He had already been through more than most of us will ever experience in our entire lives.

We finally got to go into ICU to see Ben. We had done a lot of research to prepare ourselves to what he would look like out of surgery, we knew that he would have lots of lines and tubes coming out of him. We knew he would have a massive cut down his chest but nothing ever ever prepares you to see your own baby like that – hooked up to machines and with a breathing tube down his throat.

He looked so tiny on such a big bed, peaceful and like he was asleep. He also looked puffy but beautiful and we just cried tears of joy and relief that he was out, he was ok, and he was now on a road to get better. We knew that the next 24hrs were critical. The surgery was behind him and we kept as positive as we could. We had to be strong for him and also for our other two precious kids at home.

We spoke to our surgeon Dr Peter Grant and he told us that he was glad that the surgery went ahead when it did as his heart was very enlarged, plus they also found another hole (an ASD) during the surgery.

Ben spent 4 days/3 nights in ICU. Nothing compared to what some babies spend in ICU but it was the longest and most tiring 4days of our lives. We will be forever grateful for the wonderful Drs and Nurses at Sydney Children’s Hospital  ICU. They were absolutely incredible and are true angels.

Little milestones were a celebration. The breathing tube out, eyes open, the atrial and central lines out, drainage tubes out, canulas out, pacing wires out. NG tube feeds (1ml an hour to start with) ………they were all tiny steps to getting Ben better.

When we were finally moved up to the ward (C2 South at Sydney Children’s Hospital) we were so nervous. Ben had one on one care 24hrs a day so going to the ward was a scary prospect – we just didn’t know what to expect. What we found however, was a ward full of amazingly beautiful nurses that were just as attentive and fantastic and they all loved Ben. For that we will be forever grateful. Over the following 7 days we became so attached to ‘our nurses’. They were all so wonderful not only in their care for Ben but in their care for us too.

On the ward Ben made daily progress. He went from being on morphine for pain, down to Codeine and finally onto panadol. His tube feeds progressed to when finally the tube came out and he was back feeding properly. We could FINALLY pick him up and give him hugs and that was the best feeling ever. Just to sit and hold him and have him fall asleep in our arms. Of course, feeling his heart with a normal heartbeat and to see him breathing without effort was truly fantastic.

Ben was so amazing during our time on the ward. For a baby that went through so much he hardly cried. His little thumb kept him going the entire time. The nurses couldn’t believe that he could put himself to sleep with his thumbs! By the end of the week he was smiling and flirting with all the nurses. He was so cute.

I stayed in the parent’s room each night and the nurses promised me that they would come and wake me if he woke distressed. Not once did they ever come and get me. Every morning I would wake up and bolt out to see him and the first thing they would say was ‘don’t worry he’s fine – he didn’t cry at all and when we were doing his obs and he woke up he would just put his thumb back into his mouth and put himself to sleep!’  His thumb was his little lifesaver!

When we left to bring him home it was full of mixed emotion. We were so happy to be taking him home yet it was scary because we didn’t have the support of the nurses…I told them they all had to come home with us!

There is no way you can ever explain to friends what we went thru that 10 days over Easter 2011. It affects the family unit.  Our other kids were amazing during that time. We talked about Ben’s surgery a lot and they knew that we would be at the hospital a lot. We couldn’t have got through any of it without the love and support of our beautiful kids, Chloe & Josh, our families and of course we thank God and Ben’s angels every day too.

He had a very nasty bout of RSV 6 weeks post-surgery which saw him back in hospital for a week. He was actually sicker from that than from the surgery. He was close to going to ICU and we didn’t get too much sleep that week. It was so stressful.  From that point onwards he has had bronchiolitis so many times – we have lost count but he has been in hospital at least 7 times. It was certainly a very tough first year for him and being a regular at hospital hasn’t been fun, although it has been so heart-warming when nurses pop in to say “Hi” and give you a hug.

Ben is now 18 months old. His surgery was just over a year ago now and we look at him and think – did that really happen? He looks like any other normal little baby except him has a big scar down his chest. On his 1 year anniversary from surgery we had a family celebration to celebrate his ‘heart day’. Ben is still a placid baby.  He still loves his thumbs and he still sleeps through the night. He is now on yearly cardio visits with his cardiologist Dr Owen Jones which is so exciting!

His funny little personality is starting to shine thru and we can see a little bit of cheeky in there but we wouldn’t want it any other way! I think he is definitely going to get away with a lot.  He loves his big sister Chloe and big brother Josh and is so excited when they come home from school. We can tell he just wants to get in there and play and run around with them and kick the ball and when he does, that will be the most wonderful thing to see.

New South Wales