Hardest by far

When you’ve reach a breaking point it seems that all hope is lost, you’ve failed. The worst part, it’s not you that you’ve failed, it’s your precious daughter.

Since being born it has been a monumental daily effort to hydrate our sweet girl.

No suckle reflex meant months of licking the teat and feeds lasting hours.

Then the cows milk protein allergy, with added silent reflux. Days filled with screaming, the arching of backs, head turning, refusal of feeds and many, many tears. That phase felt like an eternity, lasting until 8 months of age.

Onto solids, well purée foods and that’s where we have stayed up until now. Fluids on the other hand have gotten harder and harder to give, resulting in chronic constipation. Becoming regularly impacted, needing two hospital visits in just the last couple of months. Now under a constipation clinic and prescribed enemas as well as two daily medications.

You see, there are two types of fluids in our girls life; prescription formula milk and thickened juice (squash).

Violet has up until recently loved her milk and would have 3-4oz a bottle which is a high number for our V. This is now 2oz regularly.

Juice had always been given via a kapi cup which is a little beaker, V would sip from it and we could help by tipping it towards her mouth. We were on the verge of starting to use a bear bottle with a little straw. It’s all gone horribly wrong.

Juice intake is only by syringe into her mouth now. She will accept no other way. Even the syringe she will fight terribly, upsetting everyone in the process and resulting in juice being spat out after a hard fight getting it in her mouth in the first place.

You see, we were told at our last consultation to up Violets daily fluid intake to a minimum of 750ml. We barely hit 500ml and when we do it’s because we have worked relentlessly all day to reach that figure. Stressing ourselves out and causing Violet to get distressed in the process.

We have fought hard for our little girl to have the very best from day one. Now I question if we have done the right thing in avoiding tube feeding all this time. In truth, I believe it was the right decision. V has a great love of food, she enjoys so many varied tastes. It’s likely she wouldn’t have experienced that, had she had a tube from a young age.

Where do we go from here. It’s a scary concept and for the first time as a parental team, we have discussed a gastronomy tube for fluids and medication as the next step.

Waves of sadness, failure, guilt, relief, optimism and fear run through us at the moment . It’s a monumental decision, a heartbreaking and soul shattering decision but the right one.

We have been nudged in this direction gently by professionals for a while now but we stood our ground defiantly. We weren’t ready to discuss it, let alone accept it then. I guess we are now. It’s the only option available to us, our situation remaining as it is now, is out of the question.

Seeking as much information as I could gather I reached out to friends with little ones who have had similar experiences and parents I have met through blogging. We have received so much support and so much information.

What brings us hope is that a gastronomy tube can be used for fluids and medications while food and fluid can still be taken orally. Meaning Violet will not miss out on the pleasure of eating but will receive the sufficient amount of fluid, medication and when needed nutrition, she needs. It is also reversible.

The next chapter is scary. The thought of a plastic button sticking out of her precious skin makes me feel sick. But the thought of how unwell Violet is becoming is a much scarier thought and one I cannot live with.

Our family life should not be affected so greatly by Violets fluid intake, setting timers for 20 min intervals throughout the day and being confined to the house is just ridiculous. I will swallow my fears and push on. We can do this, we’ve already come this far.

Today Violet had an NG tube fitted which will stay in place until her PEG surgery. A short illness has meant the low fluids cannot continue. Our hand has been forced.

4 thoughts on “Hardest by far

  1. Sara says:

    Daniels G tube was the best decision we made. He was exhausted by having all his feeds orally now he fed mainly via he PEG but has so much more energy but the best bit is that he loves his bottles and tastes again.

    Right now he is having a real issue with one tooth and is a lot of pain so I can not stress him out with bottles and just know that the pEG is keeping him well.

    Yes it’s a hard decision but it honestly doesn’t have to be one or the other. Let’s hope the NG gives V breathing space to enjoy her fluids and food again.

    Ps don’t try and judge your decisions you are an amazing mom just wanting to give your girl the world xxx

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  2. StarlightandStories (@2ndtimeMama) says:

    Sending so much love to you. I could have written this post myself earlier this year. The little man had an NG fitted, we were on the waiting list for a GTube and then suddenly after months of very little food or drink something changed. What I did realise though when we had the NG fitted is just how much less stressful it was trying desperately to get and keep fluids down. We had resigned ourself to a tube for the long term, but he has other ideas. You never know what the future will bring xxx

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  3. ramblingsofjollymama says:

    Sending you so much love…we came close to this when Roo was younger but we managed to avoid the tube…I have several friends who kids have gone on to have a tube specifically for fluids and the change in the kids afterwards was amazing. Hope the tube helps xxx

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