Monday, 4 August 2014

Deficiency

Today in SPACE (a baby program) the moderator asked us to tell the class what kind of movement our babies could do. But before we spoke she told us we weren't allowed to say what they weren't doing yet (he can roll onto his side but not his tummy, for example.)

She said we need to focus and celebrate what our babies CAN do not what they can't.

This felt like a breath of fresh air.

Every week we go to the hospital, or they come to us, once or twice, to check on Ada. We have her pediatrician, nurses, speech language therapist, developmental therapist, geneticist and dietician.

Each one, by nature of being medical staff, focuses on what Ada can't do yet.

Ada can't....suck normally

Ada can't....co-ordinate her swallow with her breathing

Ada won't...ever be able to handle a bottle

Ada isn't...gaining enough weight yet

Ada has...a chromosome problem we need to look into

Ada might...have certain problems as she gets older

Oh and add myself into the mix.

I can't...nurse my baby naturally

I can't...hold her and tube feed her at the same time

I couldn't...give her the best start in life

I can't...bear more children without medical help

I understand the medical profession has to focus on these issues. And they are doing a stellar job looking after Ada (and me.)

It's hard when people always ask me when her tube is coming out. I don't berate them for asking- I would wonder the same. But there is no concrete answer, and sometimes I'd rather focus on something else.

Hearing, week after week, the things Ada can't do it quite tiring. I nearly burst into tears in the SPACE class (I saved it for my car), because it can all just get a bit too much.

I want to focus on what is right with her instead:
  • Her gorgeous smile
  • Her non stop wriggles and rolls
  • Her bright blue eyes
  • Her inquisitive nature
  • Her tuft of hair on her head- the combover
  • Her intensity when she focuses on a toy or a person
  • Her need to look out at the world
  • Her love of food
  • Her need for cuddles when she is tired
  • Her bravery when I change the tube tape. She doesn't cry anymore, just co-operates
  • Her cooing voice
  • Her little rolls on her thighs
  • Her love of her dummy
  • Her smiles for mummy and daddy
  • Her trust of strangers
  • Her tickly tummy
  • Her love of bathtime
  • Her ability to handle me putting the tube back in
  • Her cries that let us know when she needs something
There is more of course. 

It's so easy for people to define Ada by her feeding issues because it's right there on her face for everyone to see. People see a sickly or weak baby. But Ada is neither. Ada is strong, she is courageous, and there are a million more things right with her than wrong.

I need this reminder too, I am just as likely to worry about the issues than focus on the good.

I've shared this quote before, but I think it is so apt for Ada.


Every person is so much more than their weaknesses or deficiencies.

Thursday, 24 July 2014

In my arms

Ada,

For days you have been clingy, sleeping less, grizzly, grumpy. The only thing that can make you settle are my cuddles.

I was annoyed. I needed to get the washing on. To pump. To get dressed before the nurse comes. To shower.

I dutifully took you in my arms, my crying babe.

And each time as I stroked your head, as I whispered 'shhhhh' in your ear, as I found my mother instinct to calm you down, my frustration left me and I was home again.

These moments, with you in my arms, they are what I longed for, for so long. And they are not forever. I am so aware that these snuggly baby days are falling away like sand through my fingers.

And so, I let go of annoyance, of chores, of things that will never be remembered in years to come.

And I hold you close to me, my cherub, let you sink into my arms, and just be.

I breathe in your baby smell, feel your sweet breath flutter against me, listen to your baby yawns, grunts and groans.

I look at you, my baby, and see how beautiful you are, and how precious this time is.

And I snuggle you even closer.

My sweet girl, I love you more than words could express.

Mummy x

My favourite view

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.