Monday, 7 July 2014

The motherhood: 6 months in

I recently found this post I penned when Ada had been home for about 3 weeks.

Re-reading it brought all those raw emotions flooding back. And the funny thing is, I had completely forgotton that I had felt like that, that things had been so bad (bad enough that I lost a contact in my eye!!??). The human brain is a funny thing, I had so quickly forgotten the early days, just as mother nature intended.

Indeed, life is much much better now.

Things started looking up when Ada started to smile and respond about 6-8 weeks after we got home. Finally, some responses and interaction made everything seem brighter.

Team that with her starting to sleep longer at night, and being easier to settle (or perhaps we just know her cues better now) and I feel a lot more confident as her mum.

From what I know of babies (and it's not much, to be fair), Ada is a very easy baby. She sleeps well, it's easy to tell when she is tired or hungry. Of course there are still feeding issues, and medical investigations, not to mention normal baby 'moments', but all that aside she is a delight.

She is that much bigger and more sturdy now and I feel confident taking her out and about. Getting out once a day, for a walk or coffee or look around the shops gives my days purpose, which I think I had lost in the early weeks.

I've been working a few hours here and there over the past few weeks, and while it takes a mountain of effort to organise everything she needs while I am gone, it is worth it. I feel like 'me' again. Doing something 'non-mum' for just a few hours has been amazing for my mental health.

I know I'm only 6 months in, with many more challenging days to come, but today, right now, I am feeling much happier, more content and confident as Ada's Mum. 

I couldn't be prouder of her. Although she has recently had a few horrible things done to her (four failed blood draw attempts, ng reinsertion by an inept person (me) and so on), she quickly bounces back, and is smiling and laughing again in no time. She doesn't let things get her down. She is such a joy and we love her so much x


Wednesday, 11 June 2014

To the naysayers

I just want to clear a few things up.

No, Ada is not manipulating or playing us or taking the easy option by needing most of her milk via the NG tube. She has been diagnosed by professionals with a weak suck and poor swallow, caused by neurological prematurity. It is incredibly hard for her to drink a bottle, and she tries her best. She will get there one day, in her own time, but now is not that time.

Yes it is sad I am no longer breastfeeding Ada, but if you knew anything about how hard it has been to feed her you would not say this to my face. I tried my best. It didn't work out. Moving on.

Again, yes it is sad that Ada now needs some formula supplementation because I can't produce enough milk for her. And again, our situation is not normal and I have tried my best. A little formula is keeping Ada well, fed and healthy.

I know it is unbecoming for me to write a rant like this. However I find it unbecoming when people make suggestions or comments like the above ones. Please, just trust that we are trying our best in a very difficult situation. And think before you speak.

Thankyou.

Monday, 9 June 2014

How can I help my friend who has a baby in hospital?

 I often get asked what people can do for their friends who have babies or children in hospital, having had recent experience in that area myself.

The things that helped me would also apply to those who have a spouse or family member in hospital, or just anyone whose life has been turned upside down by a sudden event.

1. The number one thing, in my opinion, is to let your friend know you care, that you are thinking of them, and that you are free to chat if they  want. Text and call your friend often. Just knowing they have people they can call on will be a great comfort. Offer to meet you friend at the hospital for a coffee or some time away from the situation. They might say no, but it might be exactly what they need.

2. In times of stress, practicalities go out the window. So you could offer to make dinners or lunches, to bring snacks, baking, or vouchers for local cafes.

3. If your friend has other children, you could offer to watch them.

4. If your friend can't drive or doesn't have transport, offer to drive them to the hospital. 

5. Make a pamper pack for your friend- chocolate, a trashy magazine, vitamins, bubble bath- anything to spoil them.

6. If you text or call don't say 'let me know if I can help' because the very open endedness of that statement means your friend will probably say they are fine and they don't need anything. I found it most helpful when people offered concrete ways of helping.

7. Most importantly, just be there for your friend. Even if they don't want to see you, support them. Send them encouraging cards, texts, messages. Whatever you do, don't back away. Even if you don't know what to say and you don't want to crowd them, try your best. Don't expect that your friend will contact you first- you need to make the first move.

You will never know how much your friend treasures your friendship and support. It is invaluable in times of stress.

No no one would expect one person to do all of the above! Just take from this list what suits you, and remember that even if an offer is declined, your friend is thankful that you are thinking of them and supporting them.


Monday, 2 June 2014

Long-term

So only a few weeks ago I was ready to fight to get Ada weaned from her tube.

And then this past week we FINALLY had our assessment from a speech language therapist- the assessment that should have happened months ago.

Anyway.

The SLT believes that Ada has a very weak suck and will be reliant on the NG tube for a year or more.

Yep that long.

Her assessment hit me like a tonne of bricks and yes I cried when she said this, and yes I sobbed and sobbed when she finally left. I was not expecting this.

In the week since I have implemented the tips the SLT mentioned. And Ada's feeding has gotten worse. She takes barely 20ml a feed now, whereas before it was 50-70ml.

So, I don't really think the SLT's plan is working for Ada, and I am not sure what I think of her assessment.

I am torn and I don't know whether I need to continue to fight and try and wean her before her feeding gets any worse (and really, it can't get much worse before she is nil by mouth.)

Or, I don't know whether I should just respect her decision and stop worrying about it, and just let Ada do things in her own time.

I feel stuck between a rock and a hard place here and I don't know what to do. I wish I had a crystal ball and could see the future- will she get a tube dependant if we leave her on the tube, or will she eventually wean herself naturally?

Instead we'll fumble along day by day, trying different approaches and tricks, trying to do our best, even though we have no idea what that is.

(here's hoping)




Monday, 26 May 2014

Battling to wean a tube fed baby in NZ

So here we are. Ada is nearly 5 months old - 10 weeks corrected- and still dependent on her tube. 



Ada has been fed by an NG tube since she was born 10 weeks early, and has taken some milk orally, with tube top ups since about 6 weeks old.

Most babies, with no other medical issues like Ada, would not need the tube by now. However Ada, for whatever reason, has become somewhat dependent on it.

Recently a nurse said 'oh she might get the hang of bottle feeding when she starts solids.' When they said that a big red light went off in my head. Oh! I realised the nurses actually have no clue when she will get her act together, they are just making stuff up and hoping for the best!!

It was at this point I knew I needed to start advocating for my baby. I joined an NZ Tube facebook group and have met lots of lovely parents of tubie kids. I've had such great advice from them which has really helped.

The sad reality is that there is no real tube weaning scheme in New Zealand- many parents end up forking out thousands to go to overseas weaning centres, or to get professionals here. The professionals here are much more likely to 'wait and see' resulting in 1, 2 and 3 year olds (and on!) being dependent on tubes. Many do have medical reasons, yes, but some do not.

As such, parents really have to advocate for themselves and to instigate a wean, often against medical advice.

I started researching and learned that young babies learn eating habits that are hard to break. The earlier we wean her, the better for her growth, for her feeding, for her physical and mental development. 

In saying that, Ada is very small for her age, and so we can't risk the high weight loss that a wean brings. It's such a delicate balancing act, and I don't know which side we fall on.

Which brings me to today.

Today in the meeting with the homecare nurse and the dietician I laid out my thoughts. No more the placid mother, I am now the lioness mother roaring that something needs to be done to help us! Homecare said - 'oh yes, your speech language therapist (they help with feeding issues) referral should have been done months ago- opps.'
GRRR was my reply.

Homecare said- 'Sometimes it takes the parents to fight before we can really get things moving'
GRRRR was my reply.

I cried in the appointment. Really the stress and the worry- am I harming Ada, am I doing this all wrong?? - just got to me in that moment. My mother love, and feeling of helplessness came pouring out.

It is so hard having an issue with your child where  there is not enough medical support or knowledge. Parents are expected to learn and know it all. But how can we?? We have never studied at medical school, we are not experts. It's so stressful to have to fight for something when you are not sure what the right thing is.

So. We are moving forward. I have insisted that a firm plan needs to be made for her feeding. No more wait and see. And so the appointments are coming together and a plan will be put in place.

I will let you know how it goes.

(This is an awesome campaign group. We need help with our tubie kids in NZ. Please consider liking this page and supporting the campaign.)

(And yes I know my last post was all about accepting Ada where she is at. And I am a lot more positive than I was then. But things have changed and now is the time to fight for her, and the time to move forward.)