Bumps in the Road

Yesterday we had the first (of hopefully few) bumps in the road; Jacob had to have surgery after an x-ray highlighted some air in his gut, this happened so fast as the doctors wanted to ensure that they looked into what the cause was before he started showing signs of being less well/stable. He returned from surgery having had a small portion of intestine removed and a stoma in his stomach (the intestine exits the stomach and the lower intestines are not used) which more surgery will be needed to repair when he is better or stronger.

Lilian must have sensed the extra attention that her brother was getting and so decided to scare us by having breathing difficulties at the same time, a quick x-ray showed that her right lung had partially collapsed though they took measures to ensure that her oxygen levels stayed high and were not too concerned.

Jacob has been stable since his surgery however his pain score is quite high so his morphine has been doubled and paracetamol has also been given. The Doctor’s and Nurse’s are going to keep a close eye on him to manage his pain and make sure he remains stable. After speaking with the surgeons they have confirmed that he does have NEC which has hit us like a tonne of bricks, our little man is very ill indeed and the next 72 hours are filled with even more uncertainty as to how bad he will get. The stoma cannot be repaired until he is 3 times his current weight so it will be in weeks if not months before he can start to really recover properly.

Lilian has been stable since her ‘episode’ yesterday afternoon. Her oxygen levels from the machine have now been reduced to below what they were before her ‘episode’ so she is doing better. She is not going to be given Ibuprofen for her heart vessel (the one that they only need while they are a foetus) now as she is off the Dopamine (her blood pressure is stable – go Lilian!) they have decided it is better to start her on some milk instead. The Docs have advised that there are strict guidelines about how they will go about feeding her, but that they will also keep a close eye on her because of Jacob needing Surgery.

The Docs were keen to say that as the babies are twins they will watch them closely for similar things happening to them both, but that it is no indicator as they are two different babies.

Jacob recovering

Lilian dozing

Lilian was having her head and heart scans earlier so should have some updates on those later. It’s possible that Jacob won’t have his scans today as they want to avoid disturbing him as much as possible to get his pain score down. I spent a long time 'containment holding' Jacob today to try to help settle him and had a good chat with him (at him!) which was great especially when he seemed to wriggle at all the right places!