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.
