On Tuesday 2nd December at about 10.45pm our beautiful baby boy, Owen, died

On Tuesday 2nd December at about 10.45pm our beautiful baby boy, Owen, died.

Though at the moment our grief is nearly unbearable and we’re living each hour as it comes, we remember with joy and love our little Owen, the most beautiful baby in the world.

We had a lovely day Tuesday. Owen and I had had to go into the Royal Children’s for an appointment and he traveled really well. I even thought that I may be able to take him out a bit more. When we got home we had a couple of restful hours before a friend, Lee arrived to have a play with Owen. They spent a couple of hours together and she took him for a walk, something he loved.

That evening another friend, Anna, came over and we chatted, played with Owen, and put him to bed. As usual I checked him several times but he seemed to be quite comfortable and sleeping happily. And then when I checked him again, he was dead.

Tony was away for the first time since May. He had kissed us both good-bye in the morning as we were sleeping on the lounge together, and he had even taken a photo of us.

The next couple of hours were very surreal. I was sure that Owen was dead when I saw him, and I was right, but we still called the ambos and tried all we could. The same fire men came as the Sunday before, so it was pretty traumatic for them. This time they didn’t leave when the ambos arrived but waited to see what the outcome would be. As if we didn’t all know. During all this Anna was desperately trying to get the phone number of Tony’s hotel in the Barossa as him mobile phone’s battery was flat…

Finally the ambos gave up on Owen and the grief that I’d been holding at bay washed over me. There is nothing in this world quite like it and I wouldn’t wish the experience on my worse enemy. Not that I think I have one…

Meanwhile Tony was beside himself trying to get home. Fortunately his boss was with him as were other work colleagues; they charted a plane and drove him to Adelaide airport.

That night – fittingly – was the biggest electrical storm over Melbourne for some years. Tony flew through it in a tiny plane with a pilot he describes as looking about 12, and came home to Owen and me.

Despite the ambos wanting to take us to the hospital (I really couldn’t see the point) we were waiting for him.

Owen’s funeral was on Sunday 7th December. Thank you to everyone who came and all those who sent cards, flowers, letters and emails. All the support during and after Owen’s life has been amazing, and has made a difference to us in that we do not feel so alone in our grief. Owen was loved by many, and he deserved to be. Little pumpkin.

We will update this site in a month or so, as Owen’s story is not over, and neither is ours.

I have said many times, if love was what Owen needed to help him, he would not have had any trouble at all.

30th November - bad day

Left Home again Sunday night, our little Owen playing with his toys pretending he didn’t give us a big fright earlier in the day

Sunday was a pretty awful day for us. Tony was having difficulty putting Owen’s nasal gastric tube down after it had been taken out. (it needs to be changed every week) Owen then suddenly stopped breathing. By the time I had the phone to call 000 he had gone blue.

I was talked through what to do and had Owen breathing again by the time the fire brigade (!!) arrived. They were very quick and were fantastic. Seeing the big blokes in their fire gear gently administering oxygen to the little baby was amazing. Owen was on the sitting room floor at this stage. When he had enough colour back we moved him into his room and onto the change table.

Tony’d rung the palliative care nurse and she arrived shortly after the ambulance so the house was full. The ambulance were a bit astonished that we didn’t want them to take Owen to the hospital as they said they’d never left a baby before. But we’re aware that once he gets admitted he may be put on ventilation which means he’ll be kept alive, but only for a limited amount of time and at a reduced quality of life to what he has now. It’s a tough call but one we’ve made.

Anyway we still didn’t have the tube in and it was hours since his last feed. I rang the NNU at the hospital directly, and we went in. There we were able to bypass all the emerg admittance things and just speak to people we knew and who knew Owen’s history and diagnosis. We were very relieved when we saw a nurse we knew well. She was able to help and get the tube in so we could feed him! She also told us that one can hit a nerve in a baby when trying to get a tube in that results in the baby stopping breathing…a useful bit of info now that we have it…

So much for a relaxing Sunday afternoon but at least we have Owen back, even though we know that this is an echo of things to come.

With Anna

ft: a relaxing Saturday night with Anna

Hot weather

With Summer finally arriving we’ve had a few hot days that Owen hasn’t liked much at all. Though his actual body temperature remains constant, he gets very hot especially around his head and his pillows get wet through with perspiration. We’re looking into getting an air conditioner!

left: Hot, tired Owen; hot, tired Tony

Music and stuff

Wednesday he had music therapy with a different person then usual, We've had to give up going to VSK for music therapy as it’s just too hard. Barb visits us at home and is from one of the support organisations that we’re linked to. Owen had had a bad night and as a result was a bit unsettled and I was tired so therefore more emotional than usual. Not the ideal introduction to our family! But Barb was great and will visit us again next week. Owen also had a massage again this week and that’s going to be weekly from now on.

left: Puss E surveys his lands

Grandma Adelaide

Grandma Adelaide was over for most of this week and Owen really enjoyed the extra attention. We enjoyed the help and yummy teas.

We’re in the middle of discussions to get some respite help and perhaps a nurse to do one of Owen’s feeds a couple of nights a week. This would enable Tony and me to get a little more sleep, which would be kind of nice, and help us heaps.

Tuesday we didn’t have any appointments so Mum, Owen and I made the most of it and went on a walk to have lunch down High St. Owen was admired by the people in the coffee shop and he had a lovely time.

above: Owen contemplates his Grandma and decides that she’s pretty nice…

Owen's condition

Owen's condition is complicated as there are so many unknowns. We've now got as much information as we're going to in the near future so have decided to let you all know. This is an attempt at a brief outline

Owen has suffered major brain damage as the result of swelling to a large portion of his brain. It is not known what caused this and there is a great deal of speculation. It is thought that there was some damage sustained prior to birth as a result of interruption to the blood supply to the placenta. The cause is unknown. It is felt that this made his brain vulnerable so that when he had a very low blood sugar on day 2 (reasons also unknown), the combined situation resulted in the significant damage.
above: 23rd July - from the humi crib
We need to stress that this is just speculation and that specialists opinions differ. We have been told that we will probably never know the exact cause but it seems that there would not have been any indications (new born's do not routinely have an MRI!), so nothing that we did, or could have done, would have prevented this outcome.
As a result of the brain swelling or to further escalate it, Owen had several seizures when he first become unwell on day 2. The first lasted for about 15 minutes and others were much shorter. Because of this, and to allow his brain to try and recover, Owen has been heavily sedated. This has made it difficult to ascertain the extent of the damage, and continues to.
Owen is back on the anti-seizure drugs after being taken off them for a few days, as the drug levels in his blood were too high. This was making him virtually comatose. The levels are better now and we're more towards having a balance of wakefulness and protection against further seizures. We are very much hoping to gradually get him off the drugs altogether, but this is going to take months - if it happens at all.
The areas of Owen's brain that have been damaged involve movement and sight there was also indications of further damage in the 2nd MRI which may impact on his intellect.
The worse case scenario is that Owen will remain as he is - unable to move, see, speak or develop beyond a 1 week old baby. This is not the attitude that we take - we have already seen some development and hope for a lot more. The best case scenario is that Owen will just have some difficulty with his movement (and never become a long distance runner!). The actual impact will probably be somewhere in between.
Our hopes are currently hanging on some sight tests. There is nothing wrong with his eyes themselves and Owen looks at us and obviously focuses, but as that area of his brain has been damaged, what actually happens with the images and how they are interpreted by him is not known. Nor will it be in the near future. This condition (if he has it), is known as sensory inattention and adults have developed it after a stroke, in one or both eyes. If Owen has it, it will be profound.


But then again, we were told that he was probably deaf, and he isn't.
Owen's movement difficulties may also effect his speech. As the moment he makes noises and cries, which we see as a good sign, so fingers crossed.
Owen is currently unable to move his body, legs or arms. Once again we remain hopeful as Tony and I watch him closely we notice things that others do not. For example, a couple of days ago I noticed that he gently moved his legs in the bath. Very slightly. We've both tested him for this now and have got nurses to witness so that it's not just us hoping - and when
he doesn't have gravity to hold him
down, he does just move.
above: 24th July - Owen moves to an open cot...

He also moves his toes and fingers. He will hold your finger, but does not hold his own hands when they are put together. He wriggles his toes and flexes his ankles. He can also move his head from side to side. I felt that he was just starting to move it forward slightly also - which means there is the hope that he will gain the strength to hold his head - and the physio confirmed this.
We're now working towards getting Owen home so that we can all get on with our lives and leave the depressing hospital with all it's worse case scenarios and machines behind. We've negotiated leaving in about a week - though this may be put off, it give us something to work towards. Seeing and end to the hospital stay and thinking of Tony, Owen, Puss and me all being together in our little house is a positive that gives us the strength to keep on fighting.
Owen will still be on drugs, need to be watched closely, and be fed through a tube, but apart from that will not need the machines.
We will have to adjust our lifestyle, but any couple with a new baby needs to do that.
The reason the specialists are so unsure of Owen's future is because this is a new area of medicine. There are no test cases to show what happens with a baby who has suffered such brain damage. MRI's have only be available to new borns very recently in Australia. We have consented to have Owen in a study of baby brains so that others may learn for the future.
Owen's doctors and nurses have all been great. We appreciate that we've been told what to expect about Owen and that they are honest and open about what is known and what is not. We sometimes wonder how they can work in an environment like the NNU, but we've been glad that they do!
Before Owen was born we booked a holiday for my birthday in the Coonawarra. It is our goal to still get there, and to have a lovely time! There is a spa bath in the house we've booked so we can't wait to get in with Owen (no, we won't turn it on!) and let him gently move his little legs.
We still think that he's the most beautiful baby in the world, and love him desperately. Things are just more difficult for him then we would have wished.