IUGR baby: Progress!?

Whisper it softly, cross fingers and touch wood, but since my rather low post on Mothers' Day, our little man has made amazing progress! It started, for the technically minded among you, with the consultant reassessing the oxygen saturation levels Adam needs to maintain. Adam's breathing support is adjusted all the time to make sure that the oxygen saturation of his blood remains within certain limits. If his oxygen saturation drops, he is given more support and if it's really high, his breathing support is decreased. This is done over the short term by changing the concentration of oxygen in the air he's breathing, or over the longer term by changing the flow rate of air being delivered (higher flow is more support). For the last few weeks, Adam has been given enough support so that he reaches oxygen saturation levels of 95% and above, as he was thought to need these levels to grow properly. Last weekend, he was needing about 41% oxygen at 5 litres/min to get these saturation levels (Just after Christmas, his peak requirements on high flow oxygen were 60% oxygen at 8 litres/min). Last Monday, however, the consultant reported that there were new guidelines. A study had been done to look at babies' development at different oxygen saturation levels and found that there was no advantage to having levels of more than 95%, compared with 88-95%. Essentially, this meant that the goal posts were being moved. Adam now needed to only reach saturations of 88-95% and therefore the amount of support he needed to receive decreased. Immediately, the concentration of oxygen he was breathing and the flow rate of this oxygen decreased. He coped fine with this and over the course of the week, his flow dropped from 5 to 4 to 3 and then to 2.5, while his oxygen requirements dropped below 40%. Then, yesterday, he was moved onto "low flow oxygen" which is the sort of supply that you can have at home! He did really well on low flow and seems stable at a rate of 300 ml (or ccs)/min. This will have to decrease a bit before we can take him home, but it's in the right ball park!! It feels like the endgame might be starting! There'll be lots of tests to see how he copes with e.g. sitting, car seats, sleeping, being off oxygen for a tiny bit (in case all the equipment breaks), we still need to get his feeding regime working well, and he needs to get his gastrostomy tube changed from the current temporary latex one to a "button" which I don't really understand yet but apparently will make the feeds much easier. It'll still take weeks to get him through these challenges, but they seem manageable and exciting. Now he's on low flow we also might be able to start walking him around attached to a small oxygen cylinder. First we'll get to take him around the Neonatal Unit (not that exciting) but then, when we're good at that, we should be able to take him out of the hospital for a short walk (very exciting!!). And then, eventually, but this century, we will get to have him home!

P.S. Aargh. It's still happening, this roller coaster. I thought maybe we'd got off it. Adam's blood sugar levels, which are measured periodically, are going haywire. He had a couple of low blood sugar tests last week, but we thought that was just something to do with trying to get him up to having feeds every three hours, instead of two (hence the challenge mentioned above about getting his regime working). Last night, however, he had another low one, followed by a really high one. He is totally asymptomatic for anything, but erratic blood sugar can be a sign of infection, so he was moved last night back to intensive care from high dependency. They phoned us up at home to tell us (the first phone call from the hospital for ages about Adam's health, rather than just requests for more milk or baby gros), which worried us but by this morning all seemed fine. He was being moved back to high dependency as I arrived and seemed to have had a good time in intensive care, lapping up all the attention from nurses who hadn't looked after him for ages and couldn't get over how big and alert he's become. He had a very lovely breast feed and a nap, but then later had a very low blood sugar reading. The consultants are concerned enough to order a blood screen for various hormones and to contact endocrinologists at Great Ormond St to try and figure out what's going on. They say it is probably his body being confused by having part continuous feeds (overnight) and part bolus feeds every three hours (during the day) but they seem really perplexed and that in itself is a worry. Fingers crossed, touch wood etc. etc. it will turn out to be nothing, but my day ended up with me crying in the tea room after too much time holding Adam down as he screamed and screamed and the registrars jabbed and stabbed at him to put cannula after cannula in (he needs a cannula for i.v. antibiotics prescribed after that high sugar but keeps losing them by bashing his hands and feet on stuff), and to take bloods and more bloods, for all those hormone screens. After all that screaming, a test of his blood gases suggested his breathing wasn't working well enough, and there is now a possibility that he'll be moved backwards onto the high flow oxygen again. Hopefully, a repeat test after a couple of hours of calm time with Aunty Rosemary will sort out the blood gases and the sugar issue will sort itself out... but really? Can he get a break, please? It's so nice stuff going well and I want more of that and not this horrid stress. Meanwhile I am going to belatedly celebrate Anna's birthday in sunny Brighton and remember that Adam is behaving as normal and doesn't know he has weird blood sugar. Also, handily, his memory is rubbish so far and he won't remember either that Mummy held him down while the doctors hurt him (bad Mummy) or then ran off and wasn't there to comfort him while the doctors hurt him (bad Mummy).

P.P.S. His later gas and sugar tests were fine. He is asleep and a good nurse is looking after him tonight. We had yummy food and wine with lovely Anna. I think it will all be OK. Just so long as those hormone tests don't show anything weird. Incidentally, Adam did all that big breathing improving while his gastrostomy wound was infected with staphylococcus and he had a tummy bug, which goes to show what a little hero he is. Go monkey!

See below for a series of photos showing different ways of keeping Adam's dummy in and, therefore, Adam asleep. Only the last one works!