IUGR baby: Neonatal Unit Endgame

It's been well over a month, during which time we have mostly been dealing with Adam's pesky blood glucose levels. It wasn't nothing, as I hoped in my last post, but is a side effect of his gastric surgery called "dumping syndrome". Food is passing through his tummy too quickly. The sudden arrival of lots of food in his small intestine probably causes a sharp rise in blood glucose levels which then triggers an insulin spike that causes his blood glucose to undershoot after he stops being fed. He is fine when being continuously fed, but obviously this isn't a good long term solution for getting Adam eventually to feed normally (he's never hungry so won't feed orally). We've therefore spent the last month trying to wean him down from continuous feeds to more and more time off. We're now at 2 hours on feeds, 1 hour off but have been back and forwards several times, previously getting as far as having feeds over only 45 min (with 2h, 15 min off) before low sugars appeared again. Adam's been back to Great Ormond Street, this time only for the day (and in the open air, on a stretcher, having out grown the neonatal pod), to have a test that confirmed he is dumping. The question now is what to do about it. Things like thickening his milk with uncooked cornstarch can work, but don't a lot of the time. Instead, the strategy has been to push a process that we had started anyway - weaning onto solids (which are thicker anyway so tend to pass more slowly through the stomach)! At just 3 months, corrected age, when we started this process, Adam seemed rather young for this, but ex-premmies are weaned according to their actual (6 months), not corrected age. Now, at 4 months corrected age, Adam still gets enough milk feeds to give him all the nutrition he needs, but this is mostly fed to him overnight, through his gastrostomy directly into his tummy. During the day he gets just enough milk to keep his blood sugars up, hopefully allowing him to get hungry enough to want to eat lots of solids. So far, so good. Adam now tends to have at least a little oral solids three times a day, which is not bad for a previously wholly tube fed baby, while we don't need to stress too much about how much he takes, as he's still getting sufficient nutrients from the milk he gets overnight. Now we just need to gradually adjust his feeding regime until it would be manageable at home. This would probably mean getting to a 4 hour feeding cycle, with 45 min to 1 hour of feeds to 3 to 3h 15 min off. If everything went well he could be in that routine in 5 days, but more likely he'll reach his limit at some point and then we'll have to work out what to do.

Despite the uncertainty, excitingly, arrangements for home are beginning in a big way, as breathing-wise, he's been pretty stable on 300 ccs/min of low flow oxygen. We had a horrible shock, back in March, when we went away for our first weekend away together, and Adam got his first cold and had to be put back on biphasic CPAP (high support, squishy face machine) but thankfully it was only a day before he was back to normal. In retrospect, it was probably quite helpful to find out what happens when he gets a cold. Basically he'll need to go to hospital each time, but hopefully not for long. Since then, his only breathing issue is a sporadic cough, which is pretty nasty while he's happening. He gasps, splutters and turns purpley-bluish, but recovers in a couple of minutes if you lean him forward and pat his back. Opinion is divided as to whether this is due to his chronic lungs, to poor swallowing or residual reflux. I also don't know whether it in itself would slow us from going home, though I'd certainly like it fixed as it's quite scary. Either way, everyone agrees Adam would be fundamentally better off at home and I certainly feel that I can do pretty much everything the nurses currently do for Adam (and do when I am there). So it's full steam ahead with the practicalities for getting home ready for Adam and us trained up, The oxygen cylinders will be installed imminently, the firemen have been to install a super smoke alarm and put us on their radar as a potential fire risk, we have been trained in using the feeding pump system and have had basic life support training for babies. This last training has proved particularly useful already, as we are now allowed to take Adam out for walks on our own!! This small start at a normal life has felt very important. Not only is Adam able to newly experience sights, sounds and sensations such as trees, the babble of voices and the wind on his face, but we can feel a little bit free, meeting friends over coffee with Adam, rather than having to abandon him to grab any social time ourselves. We still have a lot to get done, not least turning our little flat, woefully neglected over the past seven months, into a clean, tidy haven of peace, health and tranquility, but we are getting there, and hopefully will have a date for discharge in the not-too-distant future. Bring it on!

Lastly, but most importantly, Adam is growing into a really lovely and charming little boy. He's more and more sociable, and loves gurgling at nurses, who lavish attention on him as the biggest baby on the unit (5 kg now!) and the only one that smiles. He also is increasingly interested in touching and holding toys and exploring different textures and his starting to bring toys to his mouth. In some respects, it'll be really scary and exhausting having him home, but also so exciting. We'll be able to spend all day with him, hopefully getting him into a better sort of routine than is possible with all the distractions of hospital and medical care. We are certainly up for tackling the challenges of making our own normal life at home.