That's right. Caroline is learning the joys of eating. We've been working up to this for quite some time, but about two weeks ago we decided to cut back on her tube feeding to see if her interest in food would perk up. It certainly has!!!
Here's the back story:
This spring Caroline learned to drink sips of water. It all started when her Dad had a great idea.... He said, "why don't we use her tube feeding syringes to drop tiny droplets of water into her mouth." I thought he was crazy, but the idea worked! At first Caroline was a bit apprehensive about the game, but she loved the reaction she received when she let a drop of water go into her mouth, and I think she figured out it felt pretty good. The drops of water slowly turned into small sips of water from our glasses at the dinner table and eventually her own sippy cup. As her trust in water grew, so did her trust in food. Caroline spent the spring months mouthing all kinds of different foods......dried mangoes, cheerios, pretzels, apple slices, and cheese to name a few. She was especially interested in foods we were eating and she loved to join us at the dinner table. The funny thing was.....she rarely swallowed. The food would go in and then just as quickly come right back out. In fact, gagging routinely occurred if the food accidently got too far back in her mouth. Now this is fairly common for tube-fed children, but we were having trouble convincing her to swallow much of anything. Furthermore, I had visions of this stage lasting for years.....eating still felt very far away.
In May, we had the unique pleasure of working with a German psychologist who specializes in assisting tube-fed children learn to eat. He assisted 3 local families in an intensive weaning program for 10 days. Caroline and I were lucky enough to join the other families during the group treatments. Caroline participated in daily play picnics where there was food scattered all over the floor and several other children and adults were playing with and eating the food. Caroline loved the picnics, and I loved collaborating with the other mothers and Markus about tube feeding, feeding therapy, and how to teach your children to eat. The three families did great with the wean and the entire Seattle feeding community learned a lot from Markus' visit.
Markus was the first person to tell us....."I think Caroline really wants to eat. She just needs to feel hungry." While it felt scary and foreign not to feed your child, we realized Markus was right. In fact, during the first few picnics Caroline was putting more food in her mouth than any of the other children.....and the other children hadn't received tube feeding that day! As we watched these 3 other children learn to eat, our confidence grew in the process and we knew Caroline could do it too.
Since Markus' visit, I've been working closely with a feeding therapist at Seattle Children's who helped me to orchestrate a slow and methodical decrease in Caroline's tube-fed calories. The first few days we skipped breakfast, the next few days we skipped breakfast and lunch. By day 7 and 8 Caroline was clearly hungry and the food that used to exit her mouth just as quickly as it went in, slowly started to linger in her mouth a little longer, and sure enough she eventually started swallowing! She ate yogurt, she ate waffles, and she ate cheese! Now....two weeks later, she is slowly growing more confident in swallowing. She is drinking a lot of water, a little bit of milk, and eating a variety of foods, including cheese, tortillas, scrambled eggs, corn puffs, and macaroni and cheese.
This new and fragile skill is definitely still emerging and some meals are far better than others, but Caroline is growing more confident by the day. She now eats 4 meals a day and most of our "therapy" is to make eating fun! We eat with Caroline, we play games in the highchair, and we do anything possible to teach Caroline that eating is a great time....not something to fear. Table manners and a balanced diet will come with time. At this point swallowing anything is a reason to celebrate! Be thinking of us as we continue down this journey. I haven't quite breathed a sigh of relief yet, nor does it truly feel "real". But, we are progressing and that is reason to celebrate!