“It’s a long haul flight… Expect some turbulence”

“Think of this as if its a long haul flight. Currently we’re cruising, but expect some turbulence. We don’t know when, or how bad it’ll be, or how often we hit it, we just know it’ll happen”, said Clara’s surgeon this morning.

And boy was he right.

Today, Friday 26th,was one of our best days, if not THE best day, in hospital yet. Clara slept through the night, and I only had to do a couple of nappy changes for her. As she’s on TPN fluids 24/7 we’ve been advised not to wake her to feed her, just to let her sleep. And if Clara sleeps – I sleep!

I found the time to have tea and toast in the parents room just before 6am, a room just off the ward that provides somewhere for us to relax, make a free cup of tea or coffee, and heat up some food whilst watching TV.

It was another spa day today for Clara. A lazy morning led to a hair wash (with complimentary head massage), a bath (with complimentary leg and arm massage), and some dozing in the sunshine whilst being read her favourite stories. The surgeon had agreed she could have more milk today so he upped her daily dose from 12 to 18 millilitres across 24 hours. Clara was loving life.

After lunch, we met a lovely play therapist who Clara was enchanted by. She took us to the sensory room and even the journey there was a milestone. For the first time since we knew Clara was seriously ill I was able to walk down the corridor with my baby in my arms. Yes, I had a nurse one step to my right, pushing Clara’s trolley stand of monitors and fluids that attached to her leg, but in my line of vision it was just me and my baby girl.

The sensory room was amazing, a truly relaxing experience for both Clara and I. We sat deep into a thick padded low rocking armchair, reclined slightly so Clara could see the disco ball, the kaleidoscope light patterns, and the floor to ceiling lava lamp. The soft high pitched noise of dolphins and whales gently calling to us soon sent Clara into a deep sleep, her body peacefully snuggled into mine. For the first time in a very long time, I found my shoulders relaxing and I was able to breathe deeply.

The spell was broken by audiologists who needed to test Clara’s hearing. Babies who spend over 48 hours in SCBU (Special care babies unit) are at higher risk of hearing impairment. They couldn’t get a result from her right ear, only her left was clearly functioning well, so we have been referred for a more detailed check in a couple of weeks. If you’ve had whales wailing in your ear you’d have issues shortly after too.

My parents and little brother saw Clara at 5pm, the perfect end to a lovely day.

Clara had been snuggled into me since 1pm so I was expecting her to wake up soon. She, as before, hadn’t been producing much stomach waste. In fact she hadn’t produced anything at all. The nurse tried flushing the pipe again, but 7 hours later even the 5ml of sterile water flushed through hasn’t come back out. Something was amiss.

We’d hit a patch of turbulence.

At 7pm Clara refused her milk, pursing her lips tightly. Tempted by the smell, she gave in quickly and allowed herself a drop. Within seconds, she had thrown up.

At 8pm, Clara was quite unresponsive. In the last few days she’d scream until she was purple in the face and struggling to breathe for milk, she’d cry for her dummy, and kick her legs in anger. Tonight she just lay there – if you picked up her leg it was floppy. Yesterday, if you so much as touched her foot she’d snatch it away from you and grizzle a warning.

By 10pm she had begun to awaken slightly, she’d grizzle slightly before stretching her arms, her eyes began to open again, but still no stomach waste.

The doctors don’t show much concern. They’ve said all we can do is wait and check her again in the morning. I’ve heard that twice on our journey so far, and both times I’ve been told in hindsight they should have acted sooner. Their words of wisdom don’t feel very wise tonight. Even the nurse is abrupt, leaning over me to note down numbers from the monitor behind my shoulder without a word as I sit there with tears in my eyes with worry.

They’ve forgotten there is an anxious first time mother here, the same one who was told twice in two weeks that she’d lose her newborn baby, who just needs a few words of reassurance.

The seat belt sign is on, fasten up, we are in for a bumpy ride.

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