Living with a husband, a 12 month old and a feeding aversion.
Feeding. Eating. Drinking. One of the most natural things to do. Shortly after birth we instinctively root for breast milk. We cry for food as part of our survival instinct. As we grow we become curious and try new foods and build up our tolerances for different things.
But what happens when this doesn’t go according to plan? The way nature intended?
A feeding problem is like an invader. It’s unwelcome. It’s unexpected. And it doesn’t go away without a fight.
From birth feeding Little T was a battle. He would shake his head violently when he swallowed. He would projectile vomit all day long. And he would shriek and scream in pain.
Little T has numerous feeding issues and gastro issues. From the top he has:
* Delayed pharyngeal swallow
* Fluids penetrate his airway but no aspiration
* Fluids go up into his nose
* Query Eosinophillic Esophagitis (He is having biopsies for that this week)
* Diaphragmatic right sided eventration
* Reflux
* Horizontal stomach (high risk of gastro volvulus)
* Cows milk protein allergy
* Soya allergy
* IgE Egg allergy
* Chronic constipation
* Query anaemia (blood tests this week whilst he is in surgery)
Because most of these issues cause him pain and discomfort Little T became aversive to feeding quite early on and would often just stop feeding. At 8 month old he got a bout if viral tonsilitus and with that he quit eating completely. He became dependent on an NG tube. We failed to wean him off this in the hospital and came home with the tube aiming to wean in the community.
At the beginning of January he had a contrast barium meal to see what’s going on inside and we were all taken aback to discover his stomach is in the wrong position. For those of us with normal anatomy our stomachs are vertical. Little Ts stomach is completely flat and horizontal. Apparently it’s very unusual and nobody could have even anticipated it. The position it’s laid in means he is at high risk of it twisting. The surgeons believe it may already be partially twisting which causes his pain and vomiting. If it were to twist fully it has the potential to be ‘life ending’. Terrifying to hear and even more terrifying to live with that knowledge. This risk increases the urgency for surgery. The rest of his tests which he needs are postponed as surgery must happen soon. His stomach needs securing to his abdomen wall to prevent twisting. At the same time he will have a gastrostomy feeding tube inserted so we can peg feed instead of NG feed.
This surgery happens this coming Monday.
Once he is recovered we will be upping his feeding therapy hopefully with the aim of getting him to eat solid food. We have the challenges of his unsafe swallow and allergies restricting him to specific foods.
It’s not a simple or quick process and it takes a lot of patience.
I plan to blog his journey from feeding tube to eating solids. I want to do this for my sanity and so I can let out my thoughts, worries and concerns. I also want to do it so others don’t feel so alone if they are going through something similar.
