The days dragged on, but the morning finally arrived and it was Samuel’s turn for surgery. There was a real mixture of emotion to deal with. The terror of the fact that they were going to open my boy’s chest and stop his heart, and the elation that soon his heart would be repaired, he would loose that bluish tinge and not have to struggle to breathe anymore.

I must admit it was a sick feeling handing over my beautiful baby, and watching the nurse walk out with him to take him to the operating room. The operation was going to take the whole afternoon and it was advised that we go out to help the time go quicker. They would call us when he was off bypass, which meant we had a good hour to get back to the hospital before he would be in ICU and we could see him.

We left the hospital, had lunch with the girls and went shopping. The cell phone was always near by, and we grew more tense as the hours passed. We were just driving back into the hospital car park at about 6pm when the phone rang – he was in ICU and we could go and see him! We never got the call that he was off bypass, but it didn’t matter, our boy had made it through and we could be near him again.

The sight of Samuel in ICU was pretty sad, and yet a relief because we knew that this was as bad as it would get, and now we can just concentrate on recovering. His colour had greatly improved. He did have a drain, monitor, probe or line in every conceivable (and inconceivable!) place, his face was swollen and the machine was still breathing for him. Thankfully he was still completely unconscious.

His nurse said that it appeared that the surgery had gone well, and Dr Kirsten Fenucane (the surgeon) did not expect any complications. He should be off the ventilator tomorrow, and probably back up to the ward the next day.

"Is not the Lord your God with you? And hath he not given you rest on every side?" I Chronicles 22:18

We went to see him very early the next morning. To our shock we heard that he had deteriorated during the night. His temperature dropped (meaning his heart was not working effectively) and he needed a couple of blood transfusions, however he was stable now. They decided to leave the ventilator on for an extra day, and change some of his medications around. This was certainly not in our planned recovery.

This was also the day that our girls went back home with Nana and Grandad. I felt split in two, wanting to be with my girls and my sick baby at the same time. Surely we wouldn’t be too far behind them.

"Be not afraid, neither be thou dismayed, for the Lord thy God is with thee withersoever thou goest" Joshua 1:9

On Friday his ventilator did come off, and we could see our boy’s face properly again. He was a lot more wakeful, but still only able to lie on his back, with still the plethora of medical ‘stuff’ attached. We were able to feed him with a bottle for the first time since his operation, he had been fed through a nasal gastric tube in his nose. We were thankful for progress.

It wasn’t long before we were hit with more disappointing news, they had picked up a leak in Sam’s Pulmonary Artery, but they weren’t too concerned. He still had fluid on the lungs, which was making his breathing laboured. He wasn’t ready to leave ICU just yet.

Samuel's chest wound began to look a little suspicious. Always on the lookout for any infection, the nurse sent a swab to the lab and started Sam on antibiotics immediately.

I got out of bed, and wondered how on earth I would ever make it through another day. I fell apart at every seam. I missed my girls, I wanted to go home with my beautiful son, who was not even ready to come out of ICU yet. I had held up pretty well up until now, surely thing would start improving!

Our little corner of ICU

One of the lovely nurses down in ICU saw my state and recommend that we go out for a few hours, see some of the outside world and take a little break from the hospital. So we took a bus to the mall and did our best to enjoy ourselves.

Arriving back in ICU, and feeling a little more refreshed, the words "Oh, you’re going to be disappointed…." Were not exactly what I wanted to hear, and as I rushed to his side my heart sank to see a drain coming out of my son’s chest.

While we were out they had removed the "pacing wires" which were attached to his heart (in case they needed to attach a pacemaker). No big deal, all the babies had those, except when Sam’s were taken out, a small hole was pulled in the side of his heart and he had a rather big bleed into his chest. They put a drain in between his ribs to drain the blood into a bucket next to him. Lovely. He had another transfusion. It was very rare for this to happen, but strangely enough we were beginning to get used to complications.

After the doctors rounds (we were always kicked out for those!), we came in to see a bright light shining on Sam and a bit of a ‘mess’ on his sheets. We were told more ‘unfortunate’ news. Sam’s IV lines had packed up, and they needed to be able to give him his antibiotics intravenously so they had to try and put another one in. Apparently Sam’s little body didn’t want to co-operate, and no matter, it seemed, who tried, no one could put one in either his hands or feet. They would need to insert another central line into his groin. It wasn’t a simple task, so they’d do it in the morning. Thankfully they would put him to sleep, which would be far less traumatic!

"The Lord of peace Himself give you peace always by all means." 2 Thessalonians 3:16

Paul pretends to know how to use the central line equipment

Again we had to leave and Samuel had to be sedated to get another central line put in. I was beginning to get a little sick of this!

Finally, Samuel was allowed to go up to ward 9, after a full week in ICU. Up until this time I’d only been able to hold him 3 times, and each time he screamed to be put back and made it pretty clear that he’d rather not be handled, thank you very much.

It was a big step, leaving the security of ICU, and the one on one nursing care, but progress was being made once again.