Steps forward and backwards

Two weeks ago I posted an elated status on Facebook: 

"This girl is 7.25kg and gaining and doesn't need to see her paed for feeding any more (just for normal premmie check ups) and is being discharged from her homecare nurse, slt and dietician ‪#‎progress‬ ‪#‎shessoawesome‬ ‪#‎proud‬‪#‎tubefree‬"

We were told she was being discharged from all care except the regular 6 monthly preemie check ups.

Turns out that isn't quite the case and she does need to be under some care for a while longer. There are still concerns about her weight and development.

Miracles

I used to think miracles were 'big' things. Grandiose events that defy impossibility.

People coming alive from the dead (does that even happen anymore?).

That one time I saw a guy who had one leg shorter than the other, and the short leg grew to make them even (no I am SO not making that up.)

Ahh, you can see where I am going with this.

Tube Wean: Take Two

Two weeks ago Baby A's SLT (speech language therapist) and nurse visited. I mentioned that A was taking slightly better volumes of milk. The nurse suggested taking her NG tube out and trying another wean for a week.

I was reluctant. Mostly because I was still quite raw from last time (two months ago) when we tried and epicly failed. I had thought we wouldn't try again till the new year. However, when I thought about it, giving it a go was totally worth it, for Baby A. I needed to put my feelings aside for her.

So out the tube came. And almost instantly (literally) her grizzles went away and she became a smiley, happy baby. Since then people have not stopped commenting on what a happy, social baby she is. She is SO much happier, and that alone is worth it.

My smiley girl

You know you're a parent of a tubie baby when....

• You intimately know about all types of syringes and connections and which you prefer

• You know what a 'french' is

• You know the brands of dozens of kinds of tape, and your childs reaction to each

• You keep litmus paper in your wallet

• Your baby's favourite toy is a syringe

• You constantly have to take the tube out of the baby's hand/mouth

• You get used to the stares you get while feeding out and about

Attempted tube wean: A diary

Baby A pulled out her NG feeding tube last weekend and we left it out for about 8 hours and she did alright. So, after a conversation with her nurse, we've decided to take it out to see how she goes.
We will stop this attempt at any time if:

• She takes less than 300ml in 24 hours (thats a baseline amount for hydration.)

• She dramatically loses weight

• She is dehydrated or lethargic

Starting Solids... the first step towards being NG tube free

Over the past month or so Baby A* has started solids!

Skin issues from NG tube tape

Over the past month or so as Baby A has begun solids, we have been having issues with her NG tube tape, because as it has been getting wet with food, it has needed to be changed more often. This led to her skin being 'ripped' every day, and causing lots of welts and open wounds.

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.

To the naysayers

I just want to clear a few things up.

No, Baby A 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 A, 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 A 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 A 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.

Long-term

So only a few weeks ago I was ready to fight to get Baby A 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 A has a very weak suck and will be reliant on the NG tube for a year or more.

Yep that long.

Battling to wean a tube fed baby in NZ

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

Letting go of expectations

As the days go by and Baby A still struggles with her feeding, I have become more disheartened.

I had expectations, that she would be off her naso-gastric feeding tube and feeding orally by 37 weeks gestation, by the time she went home, by a week or two after she went home, by the time she was 3kg.

As each milestone has passed by, and her feeding has not improved, I have become more stressed, over it, tired, weary.

Tired Mummy and baby