We’ve now had 3 nights at home and essentially we’re doing really well. Alyssa is feeding well and there’s definitely no issues with us needing to watch the clock so pedantically because as she is demand feeding, she’s not even letting us get close to 3 hours before she’s whinging for more. After we returned home from Melbourne and before we went back to the LGH, Alyssa went through two whole nights without really waking with her feeding pump running which was a special treat for parents of a newborn really. The past three nights however, Alyssa is reminding us that she is still a normal, newborn baby and is waking a couple of times a night and wanting to be fed.

Herein, lies the drama, because I’m hesistant to feed her every time she wakes as I would a regular baby, because she’s receiving a continuous supply of milk overnight and I’m worried about overfeeding her and having reflux and weight issues. And then last night, amidst the grizzling and groaning, we woke to find her naso-gastric tube pulled across her throat. I’ve always worried about when she’s moving around in bed with a tube that long – long enough that no children’s toy would be allowed on the shelves with a tube that long for risk of strangulation.

I’m honestly starting to think life would be much happier and potentially less stressful to get rid of the tube (we wouldn’t have to worry overnight about it, no more hassles with keeping it taped down and in place and retaping it without it falling out, needing to go to the hospital if it comes out and having to test its position every time we want to use it) and just wake to feed her through the night as needed. Instead of being up listening to her grizzle for a couple  of hours, I’d be up, feed her and have her back in bed asleep and settled much quicker (assuming she fed well but she has been). It would be broken sleep but it would be no different to what I’d be doing with her if she didn’t have GSD. I’d just have to make sure every time I feed her I set the alarm for 3 hours in case she doesn’t wake up in that time herself – but she does seem to consistently want a feed 3 hourly. It would also save the stress of having to fit in expressing breast milk each day (amidst the regular breastfeeds) to fill the pump each night to avoid needing to use the soy formula.

We have the tube for continuous overnight feeds so that we don’t have to stress about not waking for a feed but I honestly thinking I’m more stressed with it. There’s no parenting book that tells you how to deal with a tube fed baby who still wants constant breastfeeds. The parenting books don’t tell you how to deal with the worry of tubes coming undone or getting pulled out or choking babies.

I’m sure that if I did happen to sleep through a feed and Alyssa didn’t wake I would never forgive myself, but I’d never get over it if her tube came out and we didn’t know and slept through that too. I thought it was for peace of mind but I don’t have that anyway, so it’s very confusing.

I’m also struggling with the three hour routine. Although, as I said, Alyssa rarely makes it to three hours before getting hungry at the moment, she is on occasion still sleeping at the three hour mark and I hate that I have to wake her (when it can take ages to get her to sleep) to make her feed. I left her to three and a half hours in hospital the other day and asked the doctor if she thought I’d be right leaving her until 4 hours but she was very hesitant and preferred me to tube feed her if I didn’t want to wake her. I chose to wake her, although I hated doing it, rather than tube feed her as I don’t want to get into the habit of taking the easy option and messing with any sense of a normal eating routine for her. It just seems that even after 3 1/2 hours, Alyssa’s blood sugar levels are still ok and I feel sure she’d last even another half an hour but the truth is we just don’t know how quickly she could drop from a suitable range. I am intending to talk to the metabolic team when we’re in Melbourne on Wednesday to see how we would go about sensibly testing her coping levels. To change our outlook from 3 hours at a time up to 4 would make such a huge difference to her day – particularly as she gets older.

I can cope with a hectic 3 hourly timetable at the moment because I know that’s incredibly normal for a newborn baby, but it’s really exhausting when I recognise this won’t gradually grow out to longer periods between feeds as she gets older like a normal bub – we have to maintain this forever. It makes me so very tired just thinking about it.

I have been doing quite a bit of reading today from other GSD sites, and thankfully most of it is positive. One lady, now about 30, is able to get herself an 8 hour sleep each night by drinking 14 tablespoons of cornstarch (mixed with water) at 10pm before bed, and then again on waking at 6am. It wouldn’t be pleasant and she often hates having to wake so early on weekends but it’s great knowing there’s hope that Alyssa might one day get a full night’s sleep. Another lady wrote about her desire to travel overseas (from USA to London) for a uni semester and how terrified she was initially, but how empowered she was after doing it and proving to herself and her family and friends that she could achieve a relatively normal lifestyle. It gives us hope that we might be able to resurrect our dreams of travelling overseas as a family in a few years time.

The impact GSD has had on our lives to date has been overpowered largely by the infection troubles Alyssa has had, but now that we’re home and GSD is our only focus, it’s dawning on me that things aren’t always going to be easy and that time has become a very precious commodity for our family. I’m sure our new normal will get easier and I’m sure a great part of the worries at the moment are simply the normal “newborn” trials that every parent faces – I try to think back to when Liam was the same age but I really can’t remember enough to know what’s a baby thing and what’s a GSD thing – but some days it can all seem very overwhelming. Those are the days I go searching for information or stories to help me through, but with GSD being such a rare disorder, there’s not much out there which increases the feeling of isolation in dealing with this.

I’m probably rambling a lot today – there’s just so much going through my head.

December 2008 010The other normal newborn thing that I am thoroughly enjoying however, is the addition to our family group. I sat on the couch the other night and came to the stark realisation that we’ve become a family of five. A family of four is a small tidy unit but jumping up one more to five seems to take it to a new level. I don’t know how my Mum and Dad felt the day they sat there are realised they had a family of seven.
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Watching Liam in particular bonding with his little sister has just been beautiful to witness. He wants to touch her and look at her all the time, always wondering what she’s doing and wanting to cuddle her. Very precious indeed. At least we don’t have the added worry of a big brother poking and sitting on her and throwing things at her – he’s definitely taken the more gentle approach which makes things a lot easier.

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3 responses to “Exhaustion

  1. Oh wow – there’s so much to think about hey! It will be nice once Alyssa gets her PEG tube and they change it to a button (if that is the way they do it still). The button is great as it lays flat on their tummy and there is no worry about it being pulled etc. Hope you get some good help in Melbourne on Wed.

  2. Oh Donna, what wonderful news! We have been away for a few days and I was so excited for you all when I caught up with your blog and realised that your precious girl was at home with you. Looking forward to seeing you soon.

  3. Fingers crossed the metabolic team say you can leave her feeds for 4 hours as that is the norm for babies but of course, you still need to get up during the night while she is little. Will be thinking of you when you fly to Melb on Wednesday.

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