Counting the cost

I'm often telling people that Sophie made it through her traumatic start without any impacts whatsoever- and that seems to be true, so far, as far as her major developmental, cognitive and physical areas are concerned.

But it hasn't been until the last month that I've really faced up to the one area where the doctors were exactly right in their prognosis- the impact of her severe Meconium Aspiration Syndrome.

Sophie home sick from daycare with a touch of viral asthma

When a baby gets into distress in the womb, they poop out meconium, and can suck it into their lungs. Their oxygen is still being supplied by the umbilical cord, so they're not "breathing" as such- but they are making breathing motions. This becomes a major problem the minute they're born, when the umbilical cord (and therefore their oxygen supply) is cut and they go to take their first breath- but their lungs are now full of sticky meconium, and they're suddenly unable to get the oxygen they need to breathe.

Meconium Aspiration Syndrome was a major part of Sophie's HIE and contributed to her oxygen deprivation. She had the highest Grade 4 case of MAS, which means the amniotic fluid was absolutely full of thick, pea-soup-style meconium, with extensive staining of her skin showing that she'd been in distress for quite a while (at least 12 hours, by our reckoning). It was the main reason for our extended 26-day stay in hospital, because it damaged her lungs to the point where she couldn't breathe effectively on her own without supplemental oxygen. She was diagnosed with chemical pneumonitis, which is a particular side-effect of the meconium inhalation, and she also fought off two different respiratory infections requiring pretty heavy-duty antibiotics while still in hospital.

She was very lucky that she didn't develop Persistent Pulmonary Hypertension (as many MAS babies do), nor did she need some of the extra hardware that can be required- high-frequency oscillatory ventilation (HFOV) or extracorporeal membrane oxygenation (ECMO), for example.

Regardless, we were warned at the time that her risk of developing asthma and frequent chest infections/ respiratory illnesses was going to be much higher than that of the average child.

And sure enough, at about 18 months she was diagnosed with toddler/ viral asthma for the first time, after yet another round of bronchitis. In her first two years, Sophie has been diagnosed with croup once, tonsillitis twice, bronchitis three times, and has had other colds and coughs at least twenty additional times. We've had to take her to emergency once with a shocking viral rash, which she's had on two other occasions as well. Her asthma has gotten progressively worse since she was first diagnosed, often leading to periods of time where she coughs in her sleep until she vomits on three or four nights of any given week. She now has a Ventolin puffer with her at all times and an asthma management plan that sees her taking four puffs before naptime and bedtime, plus two puffs before any exercise or before going outside in the cold, plus four puffs if she has a coughing fit. We've also recently trialled a preventer tablet called Singulair that made quite a difference.

Sophie now goes to daycare four days a week, and it's there she picks up all of her bugs. It's unavoidable, unfortunately, and it's difficult. Because while I do believe that every bug she fights off will bring her better immunity- and I'm seeing that proven correct by a *decreasing* rate of illness this year versus last year- I'm also reminded from time to time that her birth is a factor we can't control when it comes to just how sick she can get.

Take this week, for example. Last week, after a few days with an ordinary-enough cold, she had a temperature and was complaining of a sore ear. I took her in to a doctor we don't normally see, and he checked the ear and found it was indeed inflamed. He didn't check anything else, and prescribed her a new antibiotic for the ear infection.

Fast forward a week, and I got a call from daycare saying that previously perky Sophie had suddenly developed a very high temperature and was very listless. I picked her up and took her straight to a different doctor, who was very concerned with what he found- she had quietly developed severe bronchitis (again), a severe throat infection (again), and a double ear infection (this is, luckily, the first time she's had those). The kid does NOT complain enough. He gave us a new antibiotic and said that if she didn't show significant improvement within 24 hours, she'd need to be admitted to hospital.

This is where we've been a little luckier than a lot of NICU parents- Sophie does bounce back very quickly, and outside of her high susceptibility to the bugs, she's a very healthy kid. Within 24 hours, she was fortunately much better and didn't need hospital admission. Because of her start, we've been very touchy about her being sick, and we take her into the doctor at the first sign of a chest rattle- and so far, she's not had pneumonia, which is our great fear when it comes to respiratory woes.

So. All in all, we don't go out of our way to avoid the bugs. I don't want to give her antibiotics every time she gets sick, and I don't want to give her the flu vaccine after last year's dramas. I think there's long-term value in her immune system getting the workout it does. But I do find myself cursing and stamping my feet a little that the prognosis on this front was right. I wish she'd escaped these impacts as well.

And I do hope she grows out of it, too- though judging by my own health, that might be a bit too much to ask. I was born with a double-sided pneumothorax that presumably also put me at risk for higher incidence of respiratory illness, and I certainly suffered it through my childhood. Now that Sophie is sick all the time, I'm right back on the old merry-go-round myself. Every time she gets sick, I get sick too, and it's even harder for me to bounce back. It's incredibly frustrating.

But on we go, still working out what works and what doesn't, taking each new illness as it comes, because that's all we can do. I'm so lucky to have an employer that is flexible and sympathetic, or else I have no idea how we would manage.

At least we've learned some absolute truths by hard experience- for example, that full-lactose milk is a very bad idea for our little asthma sufferer- and all those who don't enjoy changing beds/ clothes/ cleaning vomit out of carpets on endless repeat...