Sunday, 20 December 2009

Manning up and updates

I'm sorry that I've gotten behind on the blog in the past few weeks - I was feeling overwhelmed by it all for awhile there. Each day starting and ending with a phone call where I learn that Maggie's been very distressed and needed sedation and in between are the emotional hours with her, laughing at her smiles when she's bicycle kicking, hoping a little crying doesn't turn into a lot, discussing tube feeding and surgery and physio and changing wards, feeling guilty at not spending enough fun, individual time with Alice, feeling guilty at leaving Maggie, staying up late with Alice, getting up early to be with Maggie... it all got a bit much and got on top of me.

But I'm manning up and getting back on top of it now - ready with an update on our girls.

Alice's health visitor is coming to see us tomorrow - a routine appointment we've missed a number of times due to being up at the hospital. I think it's mainly to see exactly how much weight she's put on - with Maggie now coming in at nine and a half pounds I'm thinking Alice will tip the scales at around eleven. Big girl! She also had her first jabs a few weeks ago - we both cried, me slightly longer than Alice - and we discovered that her 'sticky outy' is a bit too sticky outy and is actually a herniated belly button which she would have had from birth - nothing to worry about though and it'll probably resolve itself in time. Now that I know it's actually a thing it seems bigger and more worrying than before!

But she's blossoming, our Alice - smiling loads, cooing, getting chubby legs and arms to match her cheeks, sleeping right now in her big girl cot bed for the first time (so if this is all a bit disjointed, that's why - me popping upstairs to check on her!) and, so the nurses tell us, looking more and more like her dad, who she is completely smitten with. I'm trying to find a balance of doing 'normal' mum and baby things with her - a little trip into town before going to the hospital, etc.

Poor Maggie's been having a tough time of it - because of her distress she's needed a sedative every day for the past two or more weeks and sometimes it's stretched into her days as well as her nights. Her latest EEG revealed much of the same thing as before - that there is abnormal brain activity going on but no out-and-out seizures were noted during the time, even when she was crying during the monitoring. But it probably wouldn't pick up cerebral irritation, which they still believe she's suffering from. She's also suffering from reflux and following an X-ray at the end of last week, we now know that her reflux is coming all the way back up to her upper esophagus, which is quite bad.

The biggest issue right now is her feeding - as she's getting bigger, she's getting better at pulling out her tube. On average she's having it out 4 or 5 times a day, which means the nurses putting it back down 4 or 5 times and that upsets her, understandably, each time. It also makes it more difficult for us to take Maggie home, as each time she pulls the tube out we'd have to bring her back to hospital before the next feed to put it back in.

So the talk is about Maggie having a gastrostomy, where she would be fed directly into her stomach. Obviously our hope was that she would be feeding from a bottle by now but although she's slowly improving with her suck reflex, the speech and language therapist thinks that it would most likely be a matter of months before she could be feeding orally (if she can do it at all). And continuing with the tube feeding for that amount of time isn't really recommended.

It's really, really sad and scary to think about but it doesn't mean we're giving up on getting to oral feeding. If anything, the hope is that the gastrostomy might help Maggie get there more quickly because she'll no longer have this tube down the back of her throat every time she swallows - and because her reflux has measured so badly, they'll also tighten the top of her stomach while they're doing the gastrostomy, which should really help her. And hopefully it will help the doctors be able to pinpoint more definitely when she's suffering from cerebral irritation. It also means that we should be able to take Maggie home sooner, as this method of feeding is much more stable than the tube.

And home's where we're really longing for her to be - to play with her, dance with her, have her all to ourselves. And to be a little freaked out, no doubt. She's been more stable with her oxygen levels and we've been allowed to take her around the ward for little trips in a pushchair, and also just carrying her so she can get stimulation from new environments. The next step is a trip off the ward with a nurse accompanying us and if that goes well we'll be able to do it on our own. Slow progress but progress all the same.

And then Alice can give Maggie a tour, as she knows the sights and sounds like the back of her hand now.


  1. It really sounds like progress, no matter how many steps forwards and backwards. Merry Christmas, Forbush/Saxton family and bambinos!

  2. Take care guys. You will reach some stable ground regarding the future and your lives as mum and dad. I hope it comes soon. Russell and Juni xx

  3. Bloody hell you two, I always thought I found you intimidating because you are so intelligent, witty and I finally realise its because you are just completely amazing!!

    I wont offer any advice, I am in no way qualified to do so, just know that lots more people than you can ever imagine care about you all, and are rooting for you!

    You are coping so well with everything that is thrown at you, I have just read from start to finish, I have laughed, cried and got so angry I can't tell you. There are so many highs in there (along with the lows) I guess all you can do is try and take from them what you can. I'm not sure that when you have children anything is ever as 'normal' as you imagine it will be - in varying degrees of course, and you are strong enough to deal with whatever outcome you get.

    Lots of love to you all,

    Susie (Smith (was Lightwing)) x x x

    ps thank you for your complete honesty, you are voicing thoughts that we all share with you x