IUGR baby: July 2012

Adam's home, as some of you will have seen from Facebook! It's so lovely having him here, while also absolutely exhausting! We didn't come straight home, as expected when I last wrote, but first went on a vacation to Great Ormond Street, for a number of tests and investigations. This was a bit of a downer, especially as had things gone the wrong way, it might have committed us to a longer hospital stay and more surgery to tighten the last stomach surgery and/or a very restricted feeding regime to combat his hypoglycaemias. Luckily, though, Adam and his body performed very well and we were discharged, first from Great Ormond St and then a week later from UCLH.

Adam comes with a variety of medical gear, which we have had to be trained in and have installed around the house. He has his feeding pump, which he still needs to get all his milk (expressed breast milk and formula) pumped through his gastrostomy into his stomach. The plastic ware required for these feeds is substantial as we need to use a new sterile bottle for each feed. The company only deliver monthly so I arrived home one day to find 8 crates of plastic bottles, tubing and formula outside our front door. It took a real-life game of Tetris to move them into the house, then stash them away into a bookcase in the spare room. There are no more books, only floor-to-ceiling bottles! As well as the feeding gear there are the oxygen cylinders (2 large, 4 small), and enough syringes, spare gastrostomy "buttons" (in case his falls out - again!) and dressings to recreate a mini Neonatal Unit in the spare room. We also have a blood glucose measuring kit, in case we get worried, but the endocrine team at GOS failed to get Adam to go hypoglycaemic, either by fasting or glucose-loading him, so we don't need to regularly check, and he can have whatever feeding regime he (or we) wants. When he's asleep he also has to be connected to a blood oxygen saturation monitor, which beeps if his oxygen levels drop if he pulls his nasal prongs out (or if he just kicks a lot - this happens quite a lot). Despite all this medical stuff though, the predominant air of our flat is not medical efficiency but chaotic baby-mess, with waves of muslins, bottles, clothes and toys sweeping across the flat before being hopefully more or less ushered back into their places in the all-too-short nap times.

Adam himself seems to be enjoying being home. He's getting a lot of nice, normal stimulation, lots of play time and is mostly a happy wee man. He's also been doing growing, being a decent 5.9 kg now, wearing age-appropriate clothes (3-6 months) and his length has started to catch up, having almost reached the 0.4th centile (ok, so he's still very small, but that's a lot better than being -4 standard deviations). He still has a lot of people who are making sure that he does OK. We have a lovely community team, which cover all the same sort of support he was getting in the hospital (feeding, diet, physiotherapy) as well has having regular meetings with a community nurse. We also get up to two sessions of respite care a week, in which a nursery nurse comes to play with Adam to allow me to get some other stuff done (which is how come I'm able to write some of this now!). I'm not really sure how much we really deserve this, as mostly I think he's hard work in the same way any baby is, but it is certainly useful. I suppose that the tube feeds and requirements to be plugged in to oxygen 24-7 just raise the baseline a bit so that any additional issues become that bit more difficult to manage. It was certainly a challenge giving him antibiotics an hour before feeds as well as everything else. In the night we were having to give him drugs or start or stop feeds at 10pm, 11pm, midnight, 3am, 4am and 5am. Now that the antibiotics have stopped and we have dropped the 3am feed, more or less successfully, things have settled down a lot. (Update - a week later, after spending yesterday fighting oral feeding, medical suppliers and oxygen tubing as well as a very cranky boy, I am 100% grateful for respite care and the chance of time to reconnect with sanity)

In addition to the community care, Adam is also having a lot of follow-up hospital appointments. He's already been back to UCLH for chronic lung disease clinic, eye tests, and his 6 month development check (all pretty much fine), with his surgery follow-up at Great Ormond Street coming soon. He has also had his first hearing tests at the Royal Ear, Nose and Throat hospital, having missed having the newborn one due to high-flow oxygen being incompatible with the hearing screen they do at UCLH. The first of these was last Friday. We were confident there wouldn't be a problem as he is clearly woken up by noises and is very responsive. As the test went on, this confidence seeped away however, as the audiologist had to keep turning up the volume of the stimulation to see any responses. Though they could only complete tests on one ear (Adam needed to be asleep for the tests but woke up), they were able to rule out the temporary hearing loss caused by "glue ear" and we were told that Adam has permanent moderate hearing loss in his left ear and, statistically, probably in his right ear too. The level of hearing loss was such that, while he could hear loud noises such as doors banging, he wouldn't hear voices. It felt like a massive kick in the stomach, just as we had begun to settle into home and the expectation that things would be generally improving from now on. Suddenly we had to get used the idea that Adam did actually have a permanent disability - and worst, that all these months we have been talking to him, singing to him, soothing him, and he wouldn't have heard any of it. We started reassessing his behaviour. When you looked carefully, wasn't it possible that he wasn't responding to our voices at all but just to the visual changes in our faces when we talk to him? When we put music on, we looked at him expectantly, and was it this that made him look like he was listening? We stopped deliberately talking to him, and stopped tiptoeing around him when putting him to bed. I went through the same process I have been through whenever Adam has been diagnosed with a new condition or problem: misery, followed by lots of Googling and a grim acceptance and the determination that it just needs to be fixed NOW. So it was with resolve to make sure he got hearing aids fitted immediately, that we went for the second appointment a week later. But this time he sailed through the hearing test on the right ear. So they repeated the test on the left ear. That was fine too. After another test of inner ear function, which he passed, the consultant (a different lady from the previous week) confirmed that he was fine and that last week the quality of the results was poor, rather than his hearing was poor. The delight that Adam can hear normally overcame the anger that what this week were interpreted as "inconclusive" results, were last week presented to us as without a doubt representing disabling permanent hearing loss (to the point of the previous consultant plotting his level of hearing on a graph and showing us how much outside normal range it was). This was despite us expressing our surprise at the findings and our feelings that he did seem to respond to sound. I'm glad to hear we were right to think he was. Needless to say, we're talking to him again now!

The twists and turns of Adam's life have, on so many occasions, prompted me to recognise and reevaluate prejudices and assumptions that I didn't even know I held, and this experience has been a classic example. Without really consciously realising it, when we first arrived at the Ear, Nose and Throat Hospital, I looked at the older children in the waiting room with a degree of sympathy, curiosity and pity, feeling grateful that Adam didn't have the problems they did. Learning that Adam did have hearing loss made me reevaluate what it might mean to have to wear a hearing aid. Having somehow subconsciously dismissed it as terrible to have such problems, I had to reinterpret it as OK, or I would be condemning my son to having a terrible life. The next time I went into that waiting room, I didn't see "deaf kids" as much as kids running around and playing normally, which is exactly what they had been doing the week before too. Though I was so relieved and thankful that poor hearing is one problem Adam won't have to deal with, hopefully I will now tend more to see the bravery and spirit of those that do, rather than the problem itself. Despite this, though, the fact that I didn't automatically see the child above the disability, even having gone through similar readjustments regarding premature birth, intensive care treatment, heart surgery, vision, breathing assistance and feeding issues, makes me realise that my relationship with disability is an awkward one. This saddens me not only as it's not how I would like to be, but also, selfishly, now we are officially out in the community, I really want people who meet Adam to see the sparkling little man behind the tubes. If I can't see past other children's problems, though, how can I expect any different from others? Having said that, why does it matter if someone who passes us in the street sees only the tubes? Anyone who interacts with Adam (in a good mood) can't fail but be charmed by him, I hope!

On that note, we would love you all to come and meet the baby (and tubes) himself. To that end, we would like to invite you to either or both of two events to celebrate him being such a little star and having got so far. Firstly, we will have a Thanksgiving during the church service in Bakewell on August 12th, followed by drinks and eats. Then we will have a birthday party for Adam in London on Saturday 13th October, two days after the birthday itself. If either of these tickles your fancy please put them in your diaries and, importantly, let me know for planning purposes as I currently have no idea of how many people will be interested.

Finally here's the best bit of the blog - photos to show what our little man has been up to since he came home!