Friday, 19 September 2014

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



Day 1
3pm
A has taken about 140ml so far which isn't too bad. She drinks in 20-50ml chunks. Once she is tired she just starts spilling the milk out of her mouth- once her bib is starting to get soaked I know it's time to have a rest from the bottle. She has been her usual happy self, but just had a massive crying fit which had me questioning this whole thing (yes, I need stronger resolve!). She is napping now so I am going to have a nap too, as I think tonight will be a long night....
(Note: that nap never happened. Woe.)

9pm
Right, it's 9pm and Baby A has gone to bed as normal! I will do a brief update, then off to bed for as much sleep as I can cram in before she wakes. Apparently it can be like living with a newborn again.....!!

A has been a little grumpy this afternoon and evening. In saying that, she has taken her normal naps, so she can't be too starving.

I never knew swallowing was such a sweet sound. I listen closely for it because A tends to suck suck suck suck.... spill it out of her mouth. Swallowing means it is going down which is what we want.
She has drunk 325mls in the past 11 hours, which is great. We have passed the 3-400ml in 24 hour hydration limit. I am excited and nervous about what tonight will hold...
off to bed!

Day 2
9am
Well last night was nothing short of a success! A went to bed at the normal time and slept pretty well as usual. She started grizzling a bit, as she does, and so I fed her as she was still half asleep, three times. Each time she took 30-50ml and then seemed happy again. My worries about a broken nights sleep were allayed!

She was very easy to feed when she was half asleep- no distractions. I will have to try and whip the bottle out at the end of naps when she is still docile.

Over the past 24 hours she has taken 505 ml, which is AMAZING!! A full 24 hours feed would be 650-ish, so she has taken 77% of her milk total. I am so proud of her. I was so excited about it in the middle of the night I could hardly sleep, and I am feeling it now of course!
I am very interested to see how today goes- will she be tired and lethargic from having less milk?

Tube free beauty

4pm
We've had a very uneventful day which is great! Naps as usual. And feeding at about the same rate as yesterday. Managed a quick pop out to see a friend which was great- I get stir crazy if we stay home too many days in a row

I am a gymnast mummy. A is not content being fed in the traditional cradle hold unless she is starving. Nope, she is easily distracted and twisty, so I feed her on my knees, in a chair, lying on the ground, wrapped up (her, not me), whatever works to get more mls into her. I wonder if she will ever sit still to drink?

7pm
Argh what a nightmare. I have a very shirty baby here. She is tired and hungry and refusing to drink. But she won't sleep till she feels full. Catch 22. I am losing my patience... better hand her off to the hubby.

Day 3
9am
Well last night I can't count the amount of times I was up with her. Zzzzzz. She would only take very small amounts of milk each time, so wouldn't settle for very long.

I have turned into a mess of anxiety overnight. I can literally feel it coursing through me. I feel like she is doing so well, I will be heartbroken if the tube goes back in.

We have a weigh in today at Plunket and I am so worried she will lose too much weight.

In the last 24 hours she took about 50ml less total than the prior. This does not help my anxiety. I feel like I did when she first came home and I diligently recorded every feed until it drove me round the bend and I had to stop. Except, I can't stop here, we have to know how much she is taking.

This morning she is refusing the bottle. So I have stopped trying and am waiting till she feels more hungry. Hopefully soon, and this milk strike won't continue.

1pm
Well, according to Plunket she has lost about 40g. And she has only taken about 60ml today- she is just not interested. She refuses the bottle or just lets it spill out her mouth.

9pm
Today has been very hard. She has barely drunk anything. We have both been in tears. I rang the nurse to ask if we should put the tube back in. She suggested waiting till the morning to see how much milk she takes in 24 hours, but said it was up to me. So we just plodded on. It's been much easier since Matt came home. He put her to sleep, like magic, and since she has been in bed she has gulped nearly 100ml down in her drowsy state. Perhaps she is just too distracted during the day? Really not hoping for a repeat of this kind of day tomorrow.

Day 4
11am
Well, I managed to get some more milk into her in the night- about 5 wee feeds.
In the past 24 hours she has taken 400ml, which is 100ml less than on day 1 and 2. So, the nurses are concerned about hydration, so I will be keeping  close eye on nappies today.

I am feeling a little more hopeful and positive again today. Yesterday was very hard.
This morning A's SLT (speech language therapist) came over, and is impressed with her solids eating. A is so keen on solids and putting things in her mouth. It's just liquids that she really struggles with. The SLT gave me a few techniques to try- as ever it's just trial and error.

So, the tube is still out, and it may go back in depending on hydration and her weight tomorrow. I think I am more at peace now, whatever will be will be. Baby A will show us if she is ready or not yet.

5pm
Baby A has done ok today. We managed to go out twice, and I love having her out and about as my 'normal' baby. No one stares at her, or does sad faces, or asks forlornly 'what's wrong?' It's so freeing! She's just an average 'run of the mill' baby, who most people don't give a second glance to :)



I feel like when I was first pregnant with Baby A- I wasn't sure if the pregnancy would stick, but I decided to celebrate and enjoy everyday of being pregnant. I am applying the same philosophy here- trying to enjoy every tube free day, and not worry too much (yea, right!).

She is tube free today, and that is all that matters.

10pm
I have been parenting along tonight (Matt is out partying!!), but it's gone pretty well. A has taken a good amount of milk, like she did in day 1 and day 2. So it seems like she is doing well overall. Tomorrow is the proper hospital weigh in, as well as her hand over from NICU to peads (which happens at 6 months from due date- growing up!). Feeling nervous!

Day 5
3pm

Today was the big weigh in. I was so nervous, nerves like I've never felt before. I was really hoping for a happy outcome.

Unfortunately A lost too much weight. And the tube is back in. Gutted :(

A beauty, with or without the tube

I can comfort myself with the fact that we tried our best, and we just know she is not quite ready yet. But, frankly, after a rollercoaster of a week, this just really really sucks. Feel like we're back to square one. I know I will be more positive in time, but now is not that time. I feel like she had done so well.

We will try again soon.

I am so proud of you, my darling girl xx

Sunday, 7 September 2014

Father's Day Edition: She made him a Dad

We're 8 months into this parenting game, and honestly I am constantly amazed and humbled by what a great dad Matt is.

I remember in the very early days, when he had to lift her up so they could change her sheets in her incubator. He lifted her (such a tiny wee thing) with so much gentleness and awe on his face.

Saturday, 23 August 2014

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.

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.