Good news and bad

Harry, back on the dreaded cpap

Joe, after his bath last week

Harry, Mr. Crazy-Hair himself



I can't believe it's been nearly a week since I last updated. I kept putting it off as there wasn't really much change, then yesterday they had a great day but I was too tired when I got home.



On Wednesday the babies had their routine eye tests to test for Retinopathy of Prematurity (ROP). Unfortunately, it seems that both babies have the beginnings of stage 1. They are going to keep an eye on it, and they will be re-tested on Wednesday, but for now no treatment is needed.


Joe had a heart ultrasound as he has had a persistant heart murmour which showed he has Pulmonary Stenosis, which is basically a narrowing in the blood vessel that goes from the heart to the lungs. At the moment it doesn't seem too bad but he is to be reviewed in 6 weeks time by the cardiologist from Southampton.


For a few days it was a bit hit and miss whether either of the babies managed a bottle. For a day or two I almost gave up trying but yesterday they really seemed to turn a corner and both took three bottles for me during the day, and Harry managed one with his nurse overnight. For the first time yesterday both babies also managed the whole day without needing stimulation or facial oxygen to help them recover from desaturating. They both still desatted a bit, but came up themselves each time. The nurse even spoke to me about bringing them home, and said that it would be possible for them to come home while they are behaving like that as long as I am confident that I can cope with the oxygen requirements and tube feeding them.

Then today everything changed. Harry had an episode where his sats dropped to 8 and he needed a lot of stimulation and facial oxygen to bring him back up so as a precaution the doctor came and took him to another room to take bloods and put a cannula in him in case he needed blood. While she was doing that, he stopped breathing and she had to pull the emergency cord which sets off an alarm through the whole unit and all available staff run to assist. Very scary but they got him breathing again but made the decision to move him back to intensive care and put him back on cpap to give him a rest as his blood gas wasn't good and he wasn't managing to get rid of his carbon dioxide very well. His feeds were stopped so that he doesn't have a full tummy pushing on his lungs, antibiotics were started, and this evening he had a blood transfusion. Hopefully the blood tests won't show an infection and he can be moved back to Special Care with his brother soon. His colour is miles better already.



No sooner had we got Harry settled in Intensive Care, than Joe stopped breathing too. The first time his sats dropped down to the 20s, and the second time down to 2 with a heart rate of 20. It was an absolute nightmare and he needed quite a lot of intervention and bagging to get him back to normal. So his feeds were stopped, blood taken, cannula in, antibiotics started and tonight he is having a blood transfusion.





I'm really hoping that the blood does the trick and they stop all this desatting business because there is no way I am bringing them home until they stop doing it. After yesterdays good day I was sure I could cope and all would be okay, but today just proves how quickly things can change. My boys are still very fragile and I want to be their mummy, not their nurse, and if that means a few extra weeks in hospital until they are completely stable, then so be it.