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 have been terrible with this blog lately and I made a resolution to be way better. Which I hope I can follow through with once Bram starts sleeping through the night. Which I was promised by our sleep specialist we are meeting with on Wednesday that he will. Although, in all honesty if it were up to me (which it's not. its up to US. apparently) I would leave this sweet boy in our bed. Buuuut, I tell myself I can't get number 2 till number 1 is in his own bed.  My motivation for really anything do anything I don't want to do these days. Adam needs to somehow convince me vacuuming = having a second baby because we would have way less dust bunnies then.

^^^ These pictures are getting harder and harder to take. 

11 months has been tough. For me. Because it is one month away from being one. I keep thinking of march 23 at 12:14 pm and I cry. So I need to try and not think about it. 

Anyway, about Bram.  He is amazing.  About 29 inches and around 22 pounds. He smiles at everyone, waves hello & goodbye and claps all night long. For real. I hear him clapping in the middle of the night. He crawls everywhere and thinks eating and sleeping for long stretches is for the birds. He loves pulling up on the coffee table so he can throw anything on top of it onto the floor.  We had our first occupational therapy appointment to work on Bram's eating issues (not eating). I am not convinced this is what he needs. I think he just wants his mama's milk for a couple more months is all. I must make some good stuff.

^^^ I seriously wish all of my outfits matched with Bram's. Life isn't fair sometimes.