Wednesday, May 03, 2006

Feeding Your Child

Back in the days when I was pregnant and my head was filled with all the joys of my upcoming birth I never questioned that I would be able to blissfully feed my infant into the appropriate chubbiness that is expected of a baby. Babies eat, it was as simple as that in my hormonally clouded mind.

Then I gave birth to Evan. He had a rough start in life and was not actually given any food for the first four days of his life. An IV prevented dehydration but the doctor was wary of feeding him because of the possibility that there may not be sufficient blood flow to his bowels causing the food to possibly make bad things happen in an already uncertain situation. This simple decision added to reflux and a heart that had to work harder than a normal one (ever try eating food while exercising? It is hard) led to a baby that did not like to eat and didn't really ever feel hungry.

It was devastating for me. I didn't see the heart defect so it really was easy to pretend that he was a normal child but the eating issues smacked me in the face every few hours. I felt like a horrible mother because my son would not eat the way that a normal child would. I had to cram a NG tube down his throat every night to make up for the nutrition that he would not eat during the day. I would not give him tube feeds during the day because that meant that he would have had the tube in at times when other people could see him and wonder why he was different. I wanted him to be normal and I went the extra mile to pretend that he was.

Feeding him in public always sent me into a tizzy. Evan had to have his bottles warm, so I not only had to deal with that but I also had to deal with him puking at the drop of a hat. It was very difficult to say the least and I often ended up having to go home from church to change my clothing.

Adding to my woes was an awful GI doctor that was no help at all. He seemed to barely speak English, I wondered if he even understood what I was trying to tell him. He ran a grand total of one test (an emptying scan to see if Evan was digesting food properly) and then told me that Evan's pacemaker placement was causing the problem because it was right over his stomach. He had me come all the way down to the city several times for weight checks, never even considering what a hardship it was for us. Each visit was a huge interruption to Evan's feeding schedule.

I kept desperately looking for the magical cure to the problem. I latched on to the pacemaker theory only to have that squashed soundly when it was later moved to the other side and his eating had not improved one bit. Many well meaning people even suggested cutting out the night feeds, thinking that getting food all night was hampering his ability to feel hunger during the day. I had tried that many times only to have to endure a cranky baby that ate even less than before. Every time I read about a parent trying a new thing to get their child to eat I was filled with hope and giddy to try it myself. Each time I had my hopes dashed.

After Evan had his stroke I took it on myself to stop all of his GI medications. I just wanted to see how much they were helping. Once I stopped them he suddenly stopped throwing up as much. After his first birthday he started throwing up during his night feeds and that was a signal to me that it was time to stop fighting the g-tube. Shortly before the surgery I also consulted with a dietician (which I had to pay out of pocket for since my insurance did not cover it) and got a lot of ideas on things to feed Evan. I also had an appointment with the GI nurse practicioner and she gave me the practical advice that I had been looking for from the GI doctor.

Letting Evan choose how much to eat, giving him calorie dense foods and stretching a stomach that had been previously used to only small amounts of food has really paid off. Things have gotten so much better and it is looking like this horrible journey is almost over. I certainly do not ever take it for granted when I watch Harry suck down a bottle or eagerly look for the next bite of his baby mush. I soak up the comments on how big Evan has gotten and how good he looks. I will also never ever give unasked for advice about feeding a child because they can be quite hurtful even if they are not designed to be. A listening ear is what I offer.


chichimama said...

How hard for you...and so glad that it seems to be getting better. You are doing such a great job!

Julie said...

good for you to tuning into what your son needed and helping him even more.

Zephra said...

Zakary has those same dino jammies. Cute. From the pictures I have seen of Harry, I don't think feeding will ever be a problem.

Gina said...

Each child is such an individual that it is hard to give catch-all advice. That doesn't stop my mom, but still.

Kelly said...

I really liked this post, Melissa. I too, have had to deal with the eating issues, and they really stink. I would've never told you that feeding him at night was a bad thing though....We did that with Michaela, and it worked out great at the time. We learn as we go, eh? Not like any of us are pros at this stuff...who'd want to be?

I also think it's very interesting that Evan's had a stroke. I didn't think too much about that condition until we hooked up with our current ped neuro. Besides clinically treating epilepsy, he's also focused on research in pediatric stroke. It made me curious, so I thought I'd find some blogs out there about that. And here you are!

Look forward to hearing more of your story....

Kim said...

You really are an awesome mom and I bet it is a lot more than "sometimes".

I'm glad things are now better in the eating department. This is one area of pediatrics that is totally outside my realm so I learn from those who have to deal with it on a daily basis.

There is better information on the blogs of how this affects the patients and the families than anything I could ever read in a journal.

That Girl said...

I often feel bad that my son never had very many feeding issues. He is the same way though, uninterested in "regular" food, it's a constant battle to get him to east. I always thought - eating, no problem (his brother eats everything).
It sounds like your son has HLHS also but if you didnt want to identify it for whatever reason, just delete my post.
My son had a stroke too and somehow it made me feel worse than anything else.