The first week without a Hickman Line

Doesn’t time fly when you’re having fun?

A week ago today Clara woke up in the morning for the first time without her Hickman Line. She still puts her hand on her chest like she used to when the line was there, but there’s no longer anything to grab hold of or pull.

Although the week has been exciting, it’s been emotionally exhausting. Not an hour went by where I didn’t worry about if she was absorbing enough. It was different when her line was in, it kept the option open. Now, it’s entirely up to Clara and I to make this a success.

The fear started when we weighed her on Monday, before the line came out. A different department had weighed Clara at 7.2kg just four days earlier, but these scales read 6.42kg. My heart hit the floor with a thud – what if we had pushed Clara to hard? What if we shouldn’t be doing this? My heart was racing.

Luckily, the medical team around me were on hand. They explained it was expected for Clara to lose weight coming off of PN – she was given a bag of fat a night without having to eat a thing! And the diet she was on was fruit and vegetable purée – there’s no fat in that! Logically, it made sense – but it didn’t dislodge my fears. On one hand I felt confident Clara would be fine – inside I know she does not need PN! But that little niggle of doubt had crept in and was there to stay until proven otherwise. What if my thoughts were just a reflection of my wants? Of course I want her off PN but the big question is what does she NEED.

We needed to up her food game. Clara hadn’t had meat before – I didn’t know she could try it yet! It felt so early on still with the fruit and veg purees, it hadn’t even crossed my mind to move her onto the big stuff.

But Monday night, post-Op, Clara had her first proper dinner. A “chicken casserole with vegetables” pouch from Aldi – I hadn’t cooked anything in preparation yet as this had felt so far away! She devoured half a pouch whilst we had our dinner, she loved it!

From then on, Clara has had meat with every lunch and dinner. We have reduced her fruit to once or twice a day, and she’ll have a couple of vegetables with her cooked meals. The priority now is gaining weight – fat, protein, and nutrition. I’ll do a separate post on this as there’s a lot I could say, but the main basis of her meals now are the meat and carbohydrates.

We have also learnt dairy products (right now at least, are a big fat NO!). Let’s say, we learnt the hard way and I was worried all our hard work had (quite literally) come running back out!

Not an hour would pass without a worry about her weight. Did she look thinner to you? Fatter? It was the not knowing what direction we were going in that was sending me mad. It was all down to the shock of the weight loss in those four days pre-Op. I’m her mum, and I didn’t notice it. It made me feel terrible. What if it wasn’t the lack of fat in her diet that was the problem but her inability to absorb the nutrition? Was she getting enough milk? Too much and it would send her through extra nappies. Too little and is she dehydrated?

My fear was irrational. My fear was they’d put her straight back on PN, which meant another line going in. No baths, no swimming. Limited choices with nursery as we’d wanted to make sure they’d fully understand the risks and what to do. My thoughts spiralled.

There was an added element to this. There’s a large family gathering happening in Italy early August for my Grandparents 55th Wedding Anniversary. We spent hours last year planning our route out there, driving through six different countries, taking up three weeks of our summer with a baby in tow. It hadn’t crossed our mind that going to Italy was a possibility once more now Clara was off PN. It wasn’t even thinkable! But one of the nurses knew about the trip, and asked if we were still going. Astonished, I said no. Equally astonished, she said why not? Admittedly, she had a very good point. Only 6-8 weeks ago it had seemed impossible we’d even make it to a wedding in Sheffield with Clara. Now we were slightly contemplating a trip abroad!

Between ourselves, we agreed that if Clara was doing well after her first week with no wobbles and clear weight gain, then we would go to Italy. If she was borderline and hadn’t maintained then it was absolutely out of the question. The pressure was on.

Monday came around – weigh in day- and Clara ate well. Baby porridge, a whole banana, lots of milk, and some pea puff snacks. Lunch was chicken, avocado, and sweet potato. We were just about getting ready to go, Clara was in the car, and I heard the sound of a dirty nappy. (Short gut kids simply cannot be sly about it!). Because of the angle she was sat in the car seat, it had come out of the side into her leggings and onto her vest. Cue total outfit change. Within minutes of a new nappy being on she decided she wasn’t quite done – another dirty nappy.

Finally, we were on our way to the weigh in clinic. We arrived, and… another (albeit small) dirty nappy. Clara can go hours without a dirty nappy but sometimes she does 2-3 in succession within half an hour. Today was one of those days. I resigned myself to the fact this was it, anything she’d gained in weight she’d likely lost in dirty nappies this morning alone. I was hopeful this wasn’t the case, but finally ready to accept it.

After brief introductions and Clara playing with some toys, it was time.

We put her on the scales… and…

She’d gained 110g!! Perfect for the weekly growth expected of her age.

Within just a few hours, the flights were booked, the accommodation reserved, and the emergency passport appointment for Clara arranged.

In so many ways, life’s big adventure begins.

1 thought on “The first week without a Hickman Line”

  1. Acacia and Dean, CJ is absolutely beautiful and so healthy looking. This is a Tribute to you both. Lots of love, Grammy

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