Wednesday: Oxford (Day 2)

So a great service that SCBU / NICU departments offer is the ability to call them whenever, morning, noon or night. I settled into a routine of calling the departments as soon as I woke up (or thereabouts) and before I went to bed. Goodness knows how many of the staff that I spoke to at John Radcliffe, but they were all amazing. I revelled in the detail, asking questions and really getting into the nitty gritty of the Daniel's issues. Doing so, I managed to take my mind off the bigger picture.

There are three departments for sick babies. In order of ascending seriousness they are Special Care Baby Unit, High Dependency Baby Unit and Neonatal Intensive Care Unit. Daniel was being care for in John Radcliffe NICU, whilst his brother was in SCBU in Stoke Mandeville.

Wednesday brought good news. There were three reasons why Daniel's prognosis was very good:

1. Firstly the hernia had only been found at birth, not during any of the scans. This meant that it probably developed later in the foetal development.
2. Secondly his stomach wasn't in the lung cavity. So the hole in the diaphragm isn't that big. Only intestine has made it into the cavity.
3. Thirdly, clearly at the top of the X ray, some lung can be seen. He's not missing a lung, there's something there, hopefully quite a lot there, to expand into the cavity once the operation is carried out.

More good news. The ventilator is only very gently having to support his breathing and with very little enrichment of oxygen. The consultant went as far as to say that they very rarely see babies with diaphragmatic hernias needing so little support. So that's got to be good. In terms of rarity I've heard  different measures but somewhere in the region of 1 in 8,000 to 1 in 20,000 births have such a defect, not that that helps.

On a less good  (but not terrible) note are the results from the heart scans yesterday. Although he doesn't have a congenital heart defect that some DH'ers have, his heart is larger than normal. This was caused by him being the recipient twin in the TTTS. A normal baby has a haemoglobin count of somewhere in the region of 14. Daniel's was 23. Whilst Alex's was 9. Where Daniel had receive too much blood from the placenta his heart had had to grow to Tour du France cyclist proportions to pump the glut of thick blood around his system. Although the valves were all working there was a slight murmur, some back wash from one of the valves leading to the lungs. This should resolve itself in a few weeks or months.

More good news was that they're turning off the paralysis drug, vecuronium. They're so pleased with his progress that they want to restrict the amount of drugs entering his system. If he doesn't need it, let's turn it off.

So I headed over to Stoke Mandeville again this afternoon, where Sarah had been discharged. Slightly sooner than she would have liked, but at least she can come with me to Oxford tomorrow morning and see Daniel for the first time since Tuesday early morning.