IUGR baby: Mothers' Day

My first mothers' day as a mother seems like a good opportunity to try and stand back from all this hospital craziness and evaluate where we have got to. It is 159 days since Adam was born (or 5 months and 7 days, or 22 + 4 weeks) and 10 weeks since his due date (or 73 days or 2 months, 13 days - don't you love internet calculators!). So it's approaching the day when Adam will have spent more of his time as a term baby than as a premmie, though a little while off him having spent as long out of the womb as in it. He weighs a whopping 3.35 kg, or just over 7 pounds, which is huge for him (over 5 times his birth weight), though way down on the tiny scale compared to other babies his age. He has had three operations, on his heart, eyes and tummy (PDA ligation, laser treatment for retinopathy and Nissen's fundoplication with gastrostomy insertion for reflux). He has spent 39 days on a ventilator, 2 of them on a high frequency oscillator, 18 days on CPAP and 102 days on high flow oxygen to support his breathing. He's had pneumonia, a staphylococcus infection and suspected NEC (nasty gut disorder) and countless blood transfusions. Incredibly, after all that he is doing roughly what you might expect a 10 week old ex-premmie to be doing, I think. He is, it goes without saying, a little star, and beautiful. I am so very, very proud of him!

But, we are still here, and he still needs a lot of breathing support (5 l/min humidified oxygen at 41%, if any one's counting). The reflux op has made him more stable, more comfortable, and has allowed him a small decrease in flow rate, but we haven't seen any further improvements (his oxygen has slipped back up since my last post), so we're back to waiting for Adam's lungs to grow, while he isn't piling on the pounds as fast as we'd hoped (his growth has got a bit stuck after an exciting post-op growth spurt). These five months have been so long but we will be here for a long time yet. I am sick of hospitals, while at the same time, am thoroughly institutionalised. Mostly, though, I am sick of being so worried. I know that to a certain extent, that's just being a parent, and I am heartily glad that we are past the acute phase of the early days, when the next life-endangering crisis was always round the next corner. The issues we have now are here for the long term though, with still some more that could come up and bite us. Breathing, eating and growing are our biggies, Adam's in terms of doing them, and mine in terms of worrying about them, along with developmental difficulties that could come along because of the biggies. I'm impatient for a time when we can measure Adam's progress down the oxygen concentrations and up the growth charts, rather than the opposite. I worry that he's not going to be able to do anything but token play-breastfeeding before he's weaned (though is this just me being selfish?), that because his lungs can't handle the energy and coordination to properly feed by mouth, we're storing up a load of feeding problems for the future, and that the paucity of his environment will hamper his development. I worry that being tiny and sick is going to make his life really hard and that seems so cruel.

But just writing all of that makes me realise how lucky we are, in so many respects. Adam will get better and he will get bigger, it just will take a while. He has a whole team of people to help him get there with as little collateral damage as possible: a physiotherapist, a play therapist, speech and language therapists, an occupational therapist, not to mention all the doctors and nurses. We need to work hard to make sure that his life is as varied and fulfilling as possible within the confines of his cot space, but we can do this, and this will help. Mostly this "work" involves play and as the only term baby currently in the Neonatal Unit, so the only baby actually supposed to be playing, he is doing really well out of the play therapist, with a bunch of rattles and a cool new toy rail to go on his bouncy chair. We will get there and patience is a virtue, right?

Finally, it is also an appropriate time for some musings on motherhood and some heartfelt thanks. It goes without saying that it's hard being a mother in the Neonatal Unit. In some respects it is the antithesis of motherhood, where babies in plastic boxes are isolated from frightened women, who have their milk yanked out of them by machines in a windowless room, and where parenting takes place secondary to medical procedures and under the supervision of numerous professionals. At the same time, though, it is an amazing place where the emotions of motherhood occur for the first time, and to a certain degree are heightened by the environment - the fear of loss makes the first cuddle more precious; the endless pumping makes the first breast feed more magical. Bonds are formed between women whose disparate lives in the outside world remain largely unknown and unspoken of, but who share experiences of motherhood in extremis over tea and breast pumping. In a sense, too, the whole unit is dedicated to supporting motherhood (and fatherhood), helping us to bond with our babies and to help them through their difficult starts in life. This care is free, so the whole of society is actually supporting us - our babies, the weakest and most vulnerable people in our society are being cared for by everyone, so that we can be families now and in the future, and that's a pretty incredible thing! So thank you for paying your taxes! Also thank you for all your continued best wishes. We have been dreadful at keeping in touch and at thanking people for gifts and messages, but we are hugely grateful for everything you have sent, verbal and physical. We can't wait for you all to meet our little monkey, who smiles more and more now (though still likes a good bit of performance before he'll grace you with one) and hope it won't be the too distant future before he's ready! Finally, finally I want to send the biggest thanks of all to my own special, amazing mum, for her constant support, her superhuman efforts to be with us as much as physically possible, and just for caring so much for me and for my little boy.