When you’re pregnant, one of the things you need to consider is whether you want to breastfeed or bottle feed. You could choose both, you may have to choose one method.
If you’re expecting a healthy baby, you never even contemplate your baby might not be able to feed orally.
When Clara was born she was breastfed for the first couple of days. When I did try to feed her, she’d latch for a few minutes and would then get so tired she’d fall asleep. We trialled feeding Clara expressed milk in a bottle but her intake still didn’t increase.
Her jaundice levels were significantly high so it wasn’t long before she was moved to an incubator on SCBU (Special Care for Babies Unit). Soon after her first NG (nasal gastric ie nose feeding) tube went in and additional fluids were hung and fed via a canula in her wrist – after all, a baby has to get nutrition somehow. As a result, I decided to express so Clara could continue to have the best nutrition direct into her tummy.
Fast forward to January and we realised just how unwell Clara was after her first emergency operation. We now knew that her bowel wasn’t functioning normally – therefore she couldn’t feed normally. 75% of her small intestine was removed.
Clara was now dependent on TPN – Total Parental Nutrition. This is a nutritional fluid mix of fats, proteins, sugars, vitamins, and minerals fed intravenously into a vein. As a result, the usual methods of digestion involving the stomach and the bowel are bypassed – these would usually break down the food and then distribute around the body via the blood supply. As Clara’s bowel wasn’t able to tolerate anything at all, TPN was keeping her alive.
The red bag contains her fats, the silver bag contains the rest of the nutrition. As you can see, TPN dependency doesn’t stop us from having fun!
TPN can exhaust veins, it can get to the point where they give up and the line needs to be removed and another vein used. The first vein then becomes redundant and can’t be used again.
In the beginning, Clara’s TPN was fed via a Long Line, a line into a key vein in her right leg. We were very lucky Clara’s line lasted the full six week lifeline expected. Once the line is in, the flow of fluid shouldn’t be stopped or the vein will stop too – so Clara was permanently attached. The downside to this is TPN can cause other organ damage – but at this stage Clara still needed it to survive.
Mr Lee made the decision to move to a Hickman Line and then her leg vein started to resist the fluid – it’s as if it knew its job was done.
Clara has since had a Hickman Line placed in her chest, entering the primary vein just above her heart, to receive her TPN. You can read more about getting a Hickman Line in a previous blog post here.
Clara is technically now on PN, not TPN – her nutrition is not totally parental as she is now feeding orally. In fact, she’s now on 30ml of milk every three hours – enough to warrant reducing her PN fluids as she’s certainly absorbing nutrition via both methods now. We know this as she’s piling on the pounds! Clara now weighs 6 kilos! Clara has worked hard, and now has long breaks from the PN in the daytime. Other than her wrapped Hickman Line, you’d never know she had a chronic illness. After all of this, it’s looking like we can have a lovely summer sat in the garden after all:
The future for Clara is PN in the immediate future, but ideally oral feeding as much as possible. On this basis, we’ll be going by the old guidelines of weaning from four months (corrected age).
To come home, Clara needed to be able to maintain her blood sugars and weight gain on just 12 hours of PN. Happily, we have now reached this – and its only early May! We now need to stabilise her PN prescription, and Dean and I need to learn the PN processes (they’re detailed and precise!).
The next step is home. Clara will be on PN 7 days a week between 7pm and 7am. But we are working towards weaning her PN dependency so she has a night or two off PN a week. Long term, Clara will be weaned off PN altogether if she can get enough nutrition orally.
The next blog post on nutrition will be baby weaning when Clara is ready. We aren’t sure what dietary requirements our short gut kiddo will have, but we are working with a dietician to ensure she gets the right balance of everything. Watch this space!
Clara and the Gutcracker 