our little vampire

Maisie is putting on more weight and now tips the scales at 3lbs 13.5oz - 1,752g. On top of all the milk  Maisie is drinking she decided that she was missing her intake of blood so decided to lower her haemoglobin   levels so that she could get a blood transfusion. All went well and Maisie slept throughout the whole transfusion.

Maisie had quite a lazy day sleeping the majority of it away. Mummy also had a similar day as Daddy made Mummy have a duvet day to try and catch up on and also 'bank' some sleep.

Maisie's oxygen supply continues to be at 100% and her oxygen saturation mid 80's.

Maisie had her visit from the eye doctor today - she really doesn't like him and screamed at him again. Maisie is usually so laid back that nothing really bothers her - Maisie doesn't really cry properly at any other time.

Unfortunately the eye doctor didn't have good news and the ROP in Maisie's eyes has progressed to the next stage. Both of Maisie's eyes have ROP and something needs to be done to stop Maisie becoming blind.

Maisie will not be able travel to Edinburgh for the operation that we hoped for. There are two reasons for this; They would need to intubate (put a tube back down into Maisie's lungs) again to ensure that she is stable during transportation and the operation.  This would cause more damage to Maisie lungs and it would then be extremely difficult to get Maisie off the ventilator again. This is because Maisie's lungs are still very bad. Non of the medical staff would recommend this should happen.

Also, Maisie's chances of surviving a general anesthetic are not the greatest. This upset Mummy and Daddy a lot however it is sometimes a good thing to be reminded that Maisie is extremely ill with her chronic lung disease. It is easy to forget seeing Maisie every day growing, putting on weight and starting to interact with her surroundings how ill Maisie actually is and although Maisie is fairly stable her condition is on a plateau.

So back to Maisie's eyes......what can be done? There needs to be a solution to stop Maisie becoming blind without the need to operate or intubate her.

There is a drug that is used mainly in the treatment of adults to inhibit growth of blood vessels in the eyes. It is something very new in the treatment of premature babies and there is not a great amount of information about it's effects. What is known is that it will inhibit the growth hormone released in the eyes to stop the growth of the blood vessels required to rectify Maisie's sight.

The drug is injected into the eyeball with an extremely small syringe which stays in the eye for about 20 seconds while the drug is released. There are a few risks; possible detachment of the retina, cataracts or infection but this is outweighed by the great benefit that Maisie's eyesight could be saved. There is also the unknown - as this is a very new procedure in premature babies the long term side effects are unknown or it could be said that there is uncertainty in what they could be. It is experimental.

This is a procedure that Mummy and Daddy are willing to try to help Maisie see. There is a lot of discussion happening and if all the medical team are in agreement that is in Maisie's best interest then the procedure should go ahead on Thursday afternoon.

Maisie appreciates your continued prayers