IUGR baby: 2 months old, here for the long haul, but a little star

Adam was 2 months old yesterday. He is 36 weeks and 4 days and weighs just over 1.3 kg (just shy of 3 lb), his maximum weight having reached 1.4 kg since my last post but having decreased again after he was given diuretics to get rid of his excess fluid.

After my last post, he was off the ventilator for less than a day and rather gallingly was probably being reintubated (having the ventilator tube inserted into his airways) as I wrote about looking forward to cuddles the next day. The consultant then came up with a plan, trying to optimise everything so that the next extubation (coming off the ventilator) would work better, giving the diruetics to get rid of fluid around the lungs, upping his steroids, and feeding him slowly but continually into a tube into his gut rather than his stomach. This last strategy was to increase his nutrition and strength as his usual gastric feeds (via a tube into the stomach) need to be stopped before extubation/intubation events then slowly built up to the previous level. It also prevents the milk refluxing up from the stomach, eliminating the chance of Adam aspirating any milk, something that may have caused his lungs to take a step back suddenly last week, so that he needed to be reventilated. Less nutition can be absorbed from the feeds into the gut, breast milk fortifier can't be added, and the steroids inhibit growth, so breathing rather than growing was a priority this week. The hope was that in a couple of days the ventilator pressures and oxygen levels he needed would be lowered enough to extubate him again. By Monday, however, he was still needing high levels of support. Reviewing his case and looking at a recent chest x-ray, the consultant was again struck by the small size of his lungs and the degree of damage. Given that and his slow progress the consultant warned me that he seemed to be turning into a "chronic baby" and will need to be in hospital for another four to six months, even then still requiring supplemental oxygen through a tube to his nose. There's also a high chance he'll also still need to be fed through a tube from home too. It's a hugely depressing thought that we might be only a third or a quarter of the way through this life of hospital visits and huge worry, and that Adam might have to spend the time when he should be at home being stimulated in a "normal" way, still in the inevitably sterile and disruptive hospital environment. If this is the case, it will clearly also have implications for maternity leave and my subsequent career that I haven't really managed to internally address yet.

The plan was still to get Adam off the ventilator as soon as possible and by Wednesday, after rather longer than the recommended time on the highest dose of steroids, his ventilation requirements had dropped enough for them to try extubation. It was time for progress. Unfortunately, Adam refused to breathe at all when they removed the tube, requiring them to rapidly reintubate. Undeterred, the doctors reduced his level of morphine (required while intubated to make babies calmer so they don't move the tube too much) and tried again on Thursday. This time he breathed like a trooper. Hurrah! Despite clearly not liking either the reduction in morphine, or the CPAP mask now stuck to his face, or both, he managed to do breathing all day successfully, with his oxygen requirements falling to lower than he had been on when ventilated (50% to 40%; usually oxygen requirements are higher on the lower level of support provided by CPAP). After last week, I was not counting any chickens, but on Friday morning he was still on CPAP, with his oxygen requirements having dropped further. He was more settled too, though he was much happier when having a finger to grab on to and his dummy held in place. This is a full time job, but luckily, his Granny and Chris were also around for a lot of the day to share dummy-holding duty. Cuddles were back on the agenda too. Annoyingly I felt a cold developing so had to forgo mine so as not to risk giving him any infection, but Chris manfully stepped up to the breech and had a lovely long cuddle, during which Adam did very strong sucking of his finger (see pic).

During the cuddle, the consultant came in and was very pleased that her plan had eventually worked. Chris then rather cheekily asked if Adam could soon go onto Optiflow (the support without the squishy-face mask). The consultant smiled and said that babies did like it much better than CPAP but they now only had two machines as they'd had to send the ones they had been trialling back. She'd previously said that he'd have to be stable on CPAP for a long time before they'd put him onto Optiflow, but we've been mentioning how much he liked Optiflow last time at pretty much every meeting, so they probably have got the message that we're keen on it! Anyway, we were delighted when just after Chris had put Adam back in the incubator, the consultant poked her head around the door and said that there was a machine free and we could try him on Optiflow. He liked it a lot and I think the night staff were much happier too, as he'd had a very disturbed night on CPAP, keeping them busy with his grumpiness. They informed us that he was much better on Friday night. He's now been stable on Optiflow for two days, requiring 25-35% oxygen, much lower than he's been on for weeks. He's made absolutely amazing progress! We both had more cuddles over the weekend and spent a lot of time on dummy duty. We realise that as he's got older, this time being comforted is becoming more important to him and we want to do all we can to keep him happy and stable. We've learnt from bitter experience that he probably will step backwards again (and his oxygen requirements will go up as his steroids are reduced), but we want to support him as much as possible at to try and stop this happening. Luckily this ties in with Chris' term finishing so we can share hospital duties a bit more. So, here's to more breathing, more growing and more cuddles! xxx