Like most new Mums, I did everything possible during my pregnancy to ensure that Arabella was healthy. I stopped using products containing chemicals, trekked through the city in my lunch break to go to Pilates, didn’t eat anything on the “unsafe” list, and had a drug and intervention free labour. My husband and I had discussed the potential impact of raising a child with a disability, but it hadn’t occurred to us that we may have a sick baby. After five blissful and two horrendous weeks of life, Arabella was admitted to hospital with dehydration and was diagnosed with GORD. For two weeks, she had screamed, been unable to sleep, wouldn’t let us put her down, and had developed a habit of twisting her neck into strange positions. Her feeds became shorter and shorter, which I naively put down to her becoming a more efficient feeder, and it wasn’t until the morning that she became floppy and lethargic that I realised maybe she was more than just a “fussy” baby.
I came across RISA when my mother printed out information from the website and brought it into hospital for me to read. It’s sometimes the only thing that keeps me sane, and even on a bad day, making time to read Memberspeak is a priority. After a week in hospital, Arabella was able to feed without the NG tube, and she was discharged. Things did improve by comparison, although she suffered from all the classic reflux symptoms and feeding times were a battle. This lasted for a few weeks, and then she was re-admitted for a longer period with chronic pain, feeding difficulty and failure to thrive. An additional diagnosis of potential multiple food intolerances was made after numerous tests failed to show any other physiological reasons for her pain. Eventually she was sent home with the NG tube in an effort to keep her weight up. One thing I wasn’t expecting from Motherhood was learning to insert an NG tube in my baby!
Arabella is now 18 weeks old and unfortunately still in pain most days, so we have’t yet come to the end of our reflux journey. No matter how many hours I spend researching, I haven’t been able to find anything to help her. Our days now revolve around her medical and allied health appointments (last week we had a record five appointments in five days). It gets to the point where if someone told me that taking her outside at midnight and dancing around in a clockwise circle chanting to the full moon would help her, that I’d seriously consider doing it! Daily challenges range from handling unsolicited advice from friends on how to manage her care (most of whom don’t even have kids!) to constantly thinking up new distractions to keep her mind off her reflux. Of course the hardest part is to see your baby suffer and not be able to do anything about it. It has also been tough on the extended family, for which Arabella is the first niece and grandchild. Gone are the visions of her playing contentedly on the floor or having long relaxed cuddles. Instead, they have a short cuddle and pass her on quickly before she starts to scream. Weekly family dinner nights have changed from raucous catch-ups to dim lights, lullabies and whispers.
I’m having difficulty dealing with the fact that I feel we’re getting close to the time when her Doctors will say that they’re unable to do anything more for her, and although I know we will get through this, most days I wonder exactly HOW we’ll get through. Going out is difficult because Arabella can’t cope with too much noise or other stimulation, and I find myself relieved if someone else’s baby happens to be crying louder than mine.
Recently Mum and I took Arabella shopping. I was apprehensive about a morning out, but aside from having to eat morning tea at the café in shifts while the other one pushed her pram around and around the scarf display at Myer, it was almost like I had envisaged Motherhood to be. On the positive side, Arabella does have happy times, and when she’s not in pain, almost seems like a “normal” baby, albeit a reflux one. She has a beautiful smile, and loves listening to me belting out the nursery rhymes (usually missing a line or two along the way!). I don’t apologise for her crying anymore; now I just explain upfront why she cries so much. I’ve discovered that I can often get just as good advice from RISA parents as from the medical profession (after all, they’re not living 24/7 with a reflux child). I’ve also come to realise that perhaps my ankle bone may creak and wake Arabella up as I try to steal away from her cot, but that it’s not a good look for a 30-something year old Mum to drop to the ground and slither commando-style on her belly out of the room!