Feeding Austin

Since Day 1 feeding Austin has been a true lesson in patience. The thing is almost 21 months later it still frustrates the [insert bad word of choice] outta me!!! Seriously, who doesn't WANT to eat???


**Small vent warning**


If one more "well meaning" person says, 'Gee, I wish I had that problem' or 'My little Joey, Madison or Charlie was a picky eater too.' or 'Maybe if you just tried XYZ he would eat'. ARGH!!! Trust me we have been from A to Z and back again. Which incidentally I believe is pretty much the same route as "from to H*ll and back".


**Vent over**


From the minute they brought him out of the nursery to me I have been willing this child to EAT. At first it was 10cc's, then 20cc's, then 30cc's. In layman's terms that is 1/3 of an ounce, 2/3 of an ounce, one ounce, respectively. He was just not interested or unable. Since he was taking in such minimal amounts at each feeding we were up every two hours to feed him around the clock. Because he was such a tiny little thing I was instructed to not feed him for more than 15-20 minutes at a time, any longer than that and he would be burning more calories eating than he was consuming.



It was no wonder by his 2 month check up he was labeled as Failure To Thrive. You might has well just have stamped FAILURE on my forehead. Do you know how depressing it is to know that you cannot meet your child's most basic needs? It feels like C.R.A.P.

We saw GI specialists, feeding therapists, switched bottles, switched formulas, increased calories but the boy just didn't eat well. There was even a chart in Excel at some point listing every single cc he took in, to no avail. In January 2008 a modified barium swallow study showed that Austin aspirated on thin liquids so the plan was to thicken his formula by adding baby cereal. Finally a possible explanation! Nope. He still failed to consume adequate calories to maintain his weight, let alone gain any weight.

What happened next was nothing short of divine intervention disguised as the worst moment in my mommy existence. Austin's sleep study had earned him a stay in the PICU and a Tracheostomy.

While we were inpatient the doctors & nurses were able to observe first hand just how hard it was to feed Austin and how hard we both worked at it. Finally I had their attention. Within a day they inserted an NG tube and had a new theory.



In theory, Austin did not eat because he could not breathe adequately and he was choosing breathing over eating, naturally. I did not completely buy the theory, but I played along hoping they were right. But just in case they were wrong, I asked for a surgical consult to insert an Gastrostomy tube. Yes, that's right I asked for it. Now it was the doctors' turn to play along. I wanted to minimize his need to go under anesthesia numerous times, if he was already going in for the Tracheotomy, why not also place the feeding tube at the same time? Something in my bones told me that long term feeding tube was coming and I wanted to be proactive as he had already struggled too long. One week after his Trach was placed Austin did indeed return to the OR for a PEG Tube. The doctors realized that unfortunately I was correct. His breathing & eating were separate issues.

Within a few weeks of getting his feeding tube Austin gained weight like a champ. Due to his aspiration we still tried to orally feed him cereal and formula thickened with cereal. The amounts were minimal and he received most of his nutrition & hydration via his tube. He became quite a chubby monkey!!



Unfortunately, he eventually returned to the hospital with a life threatening case of aspiration pneumonia. It turns out that despite all of our effort to feed him safely, it was still causing damage to his lungs. He suffered from severe silent reflux. Austin was still getting his "lunch in his lungs", as Dr. TxPulmo put it. During our one month stay Austin was NPO, which meant he got nothing fed to him by mouth. One more trip to the OR and he received a Nissen Fundoplication and a replacement Mic-Key feeding button. The Nissen surgery was not without its risks and possible complications. I am so glad, that now more than a year later, I can say it was the best decision I made for Austin. So far (knock on wood) he has had none of the usual complications.

Since that last operation in late April 2008 we have worked with feeding therapists to promote oral-motor feeding skills. We have tried everything from lollipops, to watermelon, to graham crackers to yogurt. I even tried a Snickers bar once, it turns out Austin is not much of a chocolate lover. So while he still gets his main nutrition from his Mic-Key feeding tube & Zevex Infinity pump we still try to have some fun with food.


















We have made some progress, but our biggest hurdle still remains volume. Austin will self feed small (and I do mean small) amounts of food, but eventually he tires of it and begins to gag or just flat out refuses it. More recently we have started offering him juice with a straw or open cup to see which he can handle better. The straw cup, which is squeezable seems to do the trick.

Last week Austin had an Occupational Therapy evaluation @ CHLA in preparation for his upcoming Modified Barium Swallow Study. The evaluation went very well and his MBSS is scheduled for two weeks from today. Until then, we will be working on trying more liquids by mouth and gaining some volume on Stage 3 type foods.

The end of a recent successful feeding session:





In order for the test to be successful Austin needs to cooperate and take a certain amount of food in a certain amount of time. Like most almost two year old kids he has his good days & his bad days. Let's hope the 27th is a good day for being cooperative and jovial.


Thanks for peeking,