Oscar's 9 days in Intensive Care

Day 1  

Saturday 21st January 2012

Oscar had a modified Norwood, they also repaired his hypoplastic aortic arch.
Seeing him after the operation was such a massive relief, I had forced myself to be prepared for all outcomes, I am ashamed to say I had envisaged his funeral. I felt that by doing this I would be softening the blow if the unthinkable happened.
No new parents should have to think like that.

This is Oscar straight after surgery, it's quite shocking so I apologise if you find it upsetting.

We stayed with him for a while and then left to get some rest, our baby was 'safe' for tonight. The nurses didn't leave his side for a second, always two nurses by his cot with Doctors doing the rounds all the time to check on him.


Day 2  

Sunday 22nd January 2012

Today was a rest day, there was nothing we could do apart from visit him, whisper in his ear how strong he was and how much we loved him. 

Day 3 

Monday 23rd January 2012

My first thought when I saw Oscar was he didn't look good at all. I had a sinking feeling something wasn't right, he looked worse than straight after the operation. The Doctors told us he was stable and they were going to attempt to close his chest. They do this actually in the intensive care room, they pull the curtains around the cot and do the surgery right there.

The first attempt to fully close his chest didn't go well, there was too much fluid so they just closed the skin and said they would try again the following day.

Day 4 

Tuesday 24th January 2012

Oscar looked terrible today. I call this day the day he nearly died as I will go on to explain.

We had accommodation on the floor up from intensive care so we could pop to see Oscar anytime of the night or day. I had started to invite friends to come and see our beautiful boy, despite the wires I wanted everyone to see him, he was perfect and we were so proud of him, I was terrified if he died and nobody had seen him how awful for him and for us that would be. So people arrived and brought presents, I went to the pub for some lunch with my boss and a close friend. Alan was with other friends, we both knew they were going to attempt to close Oscars chest again that lunchtime.

I was expecting to see Alan back at the hospital when the chest closure had finished. He came into the pub and sat down next to me, he calmly told me we needed to go back to the hospital.

Oscar hadn't responded well to the chest closure.

I knew it, I knew he looked awful that morning.

His tiny heart had stopped for 90 seconds, Alan had walked in on a crowd of Dr's and nurses performing CPR. He started breathing again and we were told it was touch and go, he needed to start fighting if he was going to turn a corner.

I walked in later that same day to see the nurses 'bagging' him again.

I thought our baby boy was going to leave us this day, I really did, he looked like a waxwork, so pale and just so so poorly. His legs were swollen and purple which was beginning to worry the Dr's, they attached more tubes and different drugs to try and control the swelling. Oscar had an ultrasound which revealed clots, a large one in his right leg.

Oscars poor legs and feet so swollen from the clots

They started a course of injections with a drug called Clexane, he was to have these injections twice a day for 6 weeks. Alan and I later had to learn how to these injections ourselves.

The next 24 hours were a blur, I felt so empty just so bloody helpless. I wanted to see Grace and hug her, she must be missing her new baby brother.

Day 5 

Wednesday 25th January 2012

I went in to see Oscar at 6am, I couldn't sleep. A German Dr came over to speak to me, I had seen him around intensive care a few times but he never made eye contact before so I was surprised he came over to speak to me. He quietly said 'I think he has turned a corner,' and gave me a smile. I later found out from Alan that it was this same man that brought our baby back to life the day before.

Oscar was stable and looked a bit better than the day before, he had a bit more colour and was opening his eyes occasionally and moving slightly, his legs were still horrendous though.

Today Oscar was one week old!

Day 6 

Thursday 26th January 2012

I finally got to hold Oscar today!

I had to use an oxygen tube as he wasn't taking in as much oxygen as he needed to.

I was feeling better, able to walk much easier, to be honest I had carried on as normal and not even thought about the fact I had just had a major operation as well. Holding him he felt so small,  he had lost an awful lot of weight. Grace had a hold of her little brother too.

Day 7 

Friday 27th January 2012

He hadn't coped too well breathing so they had put an oxygen box over his little head, he was peeping through the perspex at me, cheeky baby!

Day 8 

Saturday 28th January 2012

Overnight Oscar was given a transfusion, this was to give him a boost of oxygen into his blood. He was still under the oxygen box as his sats dropped significantly in the normal air.

Day 9

Sunday 29th January 2012

I had had a bad nights sleep and was starting to feel like I was going insane, sleeping at the hospital was hard, being away from Alan and Grace, I was feeling really sorry for myself and spent most of the morning in tears. My sister came up to the hospital to help me out as Alan was working. We popped in to see Oscar and I saw he had a cannula sticking out the side of his head, there was blood all over the sheets from where they had been attempting to insert it, I was hysterical I didn't know what the hell it was. The Doctor tried to calm, me down explaining they had used up all his tiny veins so this was a last resort. If he took a turn for the worse when he was back on the ward they needed quick access via a cannula. These things are awful, they can take forever to finally get one inserted correctly. Oscar will have to have these every time he's in for surgery.

Whilst the Dr was explaining he say Oscar was being discharged up to the High Dependency Unit that afternoon....I was like 'What???' So from being a total wreck in tears I was skipping around happy, our boy was going to be one step closer to coming home!

AND I got to feed him with a bottle, the nurse started it off as they worry babies will struggle, Oscar struggle to eat? I don't think so, the ravenous little monkey chomped on that bottle for dear life. He has been the same ever since, we are lucky in that respect as we witnessed how difficult it was for other parents to get their babies to eat at all.

Although he was able to take a bottle he still had the feeding tube in so they could administer drugs and milk, this way they knew exactly the quantities he was receiving.

He was discharged up to the HDU on Ward 11 at 2pm...our brave baby had come so far. 

Oscar Jack Wright born 18th January 2012

Finally sat down to write in my blog...20 weeks and 5 days after the event!
Oscar arrived safely via cesarean on the 18th January after a lonnng wait throughout the day as an emergency case was rushed in before me. (the emergency case is now a good friend of mine as our babies have similar heart problems and share the same birthday!)
Oscar looked perfect when he was born, crying and just beautiful. I was in some sort of other universe, I felt so strange, turns out I lost an awful of of blood as they struggled to stop the bleeding.
I remember asking if he was breathing ok and when can they take him...they were showing him to Alan and I but I just wanted him looked after, I felt the longer they waited the worse he'd get as I knew his heart wouldn't cope. I could see he didn't have Downs.
Oscar was taken to the Neo Natal unit in the Womens hospital, Alan went with him and I went to the recovery room.
Alan brought me some photos on his phone to show me, all I could say was, are you sure thats him? Is it definitely him? I couldn't tell, I had only seen him for a few minutes. I panicked and thought what if they mixed him up with another baby, the feeling of complete uselessness was to stay with me for weeks.

Oscar Jack Wright 3 hours old

I was in a ward with 3 other women, I was taken to see Oscar a few hours later, he was hooked up to Prostaglandin and all sorts of other tubes in an incubator but he was sleeping and looked like such a healthy strong baby! He was 6lb5oz at this point.

They took him in a Critical Care ambulance to Birmingham Childrens Hospital that same night.
I was wheeled back to the ward, the 3 women had their babies, mine was safe in another hospital but I can't begin to describe the feeling, I'd had a baby but I couldn't see him or hold him.

Grace and her new baby brother Oscar

I focused on getting mobile and over the next few days before I could get to BCH to be with Oscar. I got over there on the Friday afternoon, Oscar looked adorable, they had put a babygrow on him. I got to have a hold of him, he was tiny. Grace was such a proud big sister, stroking his head and kissing him.
We left him there on Ward 11 and were told his open heart operation would be happening in the morning.
At home we were a mess, it was such an unbelievably empty feeling, to be home without him :(
The following morning we went back to the hospital with as much resolve as we could find to be with our new baby before he had his operation. I could hardly walk so I was taking painkillers literally to the minute, I highly recommend co-codamol, I owe a lot to them!
The nurses in the High Dependency Unit on Ward 11 were lovely, the one looking after Oscar helped Alan and I to wash him and let us cuddle him for a while.
Then it was time for us to take him to theatre. Alan couldn't do it, he broke down. I carried our baby boy down the corridor and into theatre with a nurse either side of me. I laid him on the table and stroked his tiny hand as they put him to sleep. He looked so peaceful, I still have the babygrow he was wearing that day, it's my lucky mascot I will be taking it with me when he has his next op!
The operation lasted 5 hours.
We got the call at 4.30 that we could see him, we ran back to the hospital (well Alan did, I sort of shuffled) In amongst all the wires and machinery was our tiny boy, with a CHEST OPEN sticker and hooked up to a vent. He was alive, we were ecstatic.