Parenting 3 preemies, 2 of them ex-27weekers with trachs, is no walk in the park. Each of them has had their challenges with feeding/eating. The least of my concerns has been my youngest who got those 6 extra weeks in utero. She has difficulty managing bite size- but she LOVES to eat, asks to eat, eats everything on her plate at every meal. She does need all liquids to be thickened or she aspirates small amounts into her lungs, but NEVER do I have trouble getting her to eat variety or volume or … SOMETHING every meal.
My other daughter has been through her share of feeding challenges. She started oral feeding ahead of her twin brother and has maintained her lead throughout early childhood. She has had difficulty with textures, taken a long time to learn to chew and went through her projectile vomiting phase. Sensory focused intervention and a consistent behavioral response to the vomiting helped her to get to the place of being a pretty competent eater. She has bad days, moments in time when her resistance to eating is strong, but I feel like she is stable in feeding.
My son Tavish, on the other hand, is the stuff feeding nightmares are made of. He started life being resuscitated, had a tube forced down his airway that scarred him badly, making the trach necessary right away. He was fed by nGT for the first six months of life receiving nearly continuous feeding the entire time- except when his sister was ripping the tube from his face and out of his nose. At 6 months old, the docs placed a GTube through his abdomen into his stomach. 3 or 4 weeks later he was hospitalized for a month because he was struggling with an infection in the GTube. When he finally came home, weaned off antibiotics and the GI meds they had tried in the hospital and found out he was allergic to, he went back on continuous feeds for another couple months.
By the time he was one, he was fed 22 hours/day through the GTube, and given a “challenge” bottle to try to teach him to feed by mouth about 90 minutes after the feed was shut off. He eventually was able to take in the 2 ounces by bottle that they targeted but never moved beyond that while he continued the 22 hour feed. By the time he was 15 months old, the continuous feed was reduced to 12-14 ounces overnight and he took the rest by small bottles spread out across the day. By 16 months, he had learned that “fullness” was 1-2 ounces resting in his belly. He treated solids [crumbs of baby puffs] as though they were poison being placed under his fingernails via glass shard. NOT fun.
Add to these experiences a sensitivity to lactose- which he was fed in every formula until about 3. 5 years old- and feeding was NOT a pleasurable event. Diarrhea and vomiting were an everyday occurrence, less the 6 months no-vomiting that the Nissen Fundoplication had allowed before failing. Pain from the GTube was a near daily complaint by the time he turned 4. Last summer he would pull t-shirts away from his stomach when sitting or slide the pj tops upward to prevent their rubbing against it. Writing all this down, it seems no wonder that feeding and food are his worst times of day. I pulled the GT- AMA – in September 2010 when it was bugging him. It closed over nicely before the next nursing shift and that particular device is now only a memory in the story of his history.
So, fast forward to today. I slave over organic, raw whole foods to craft “formula”, 24-hour cultured yogurt and every morsel of food for intake from scratch. I shop for ONLY the brand of organic peanut butter that is truly smooth – the only organic brand without “flecks” in it so that he doesn’t “feel spots” in his peanut butter formula. I try to accommodate his desire not to have ‘thick’ formula by adding more almond milk, but when he refuses to drink enough several days in a row, I fall back on the thicker version [77cal/ounce]. I try to vary the food options, add in veggies which have been a long-standing preference, and enough access to the simple carbohydrates allowed on the diet we follow.
What do I get? Several forms of torture, including refusal to put the cup in his mouth, insistence on only the cup from his ENT’s hospital, an inability to ingest formula and any sort of food in the same sitting. He refuses all solids, including things he requests, things he loved in the past. something he might eat on another day. SCD yogurt is the ONE food we seem to be able to get in him every day- but he takes bites that are about 1/4 the infant spoon he uses to eat, insists that he cannot feed himself when he’s not in the mood, holds bites in his mouth for as long as 10 minutes at a time- how does he even keep an mL of yogurt in his mouth for 10 minutes??
Without a GTube, PO [by mouth] is our only option. He is gaining weight, we are getting in a vitamin most days, but the 6-8 hours spent at the table really drains me in addition to the 2-3 hours of nebs per kid every day. Where is the magic wand? I am sure one of you has taken mine!