A year ago today, I sat at our laptop computer while Jack, then not only 4 weeks old, napped peacefully in his bassinet, and I wrote my first blog post. At that time we had gotten through some challenges, such as jaundice, an unexpected diagnosis, trouble gaining weight, but we were still facing some other challenges, like my difficulty with breastfeeding. Our feeding hurdles were perhaps the most troubling for me, as breastfeeding was so very important to me, and it was very frustrating to feel that my body just didn't know how to do it. What it boiled down to, though, was simply that I wanted my child to get the best nutrition he possibly could, and being a nurse, I knew that the best possible nutrition came from breastfeeding. And, here I was having to supplement Jack with formula, not because he had trouble breastfeeding, but because I never produced enough milk.
Well, what do ya know?!?! A year later, we found ourselves facing feeding difficulties once again. It all started a month ago about a week before Jack's first birthday when he got his first real ear infection, which was not fun. (Let's just say, no one in our house got much sleep that week.) As for feeding that week, well Jack just didn't want to eat solids hardly at all and mainly just stuck to the bottled formula. I didn't worry too much, thinking it would pass and attributing the behavior to the fact that Jack didn't feel well and that the sucking-swallowing mechanism of the bottle probably relieved the pressure in his ear. After 10 days of antibiotics and a great Well Baby 12-month checkup at the pediatrician, Jack's ear seemed better, and we took the physician's advice to transition Jack to regular milk. So we did just that, despite Jack's still suboptimal solid intake. Two words .... BIG MISTAKE!!!
Poor baby boy got so constipated that we had to resort to solutions that I will not go into here, and this all just made his reflux worse, which in turn made his intake of solid foods worse, and so on and so forth. There were some days that Jack barely ate a bite, and he started taking to aggressively swatting the spoon away with his arm (a move Robert has coined as Jack's "karate chop"). All Jack would take was his bottle of milk. This crushed me. I found myself spiraling back into all those emotions I felt a year ago .... worrying about Jack's nutrition, wanting to give him the best nutrition possible, and feeling helpless in my ability to do so. So, I did what I usually do in trying times ... I read everything I could read about feeding and Down Syndrome, and I called for backup ... I spoke with my CDSA Service Coordinator, our pediatrician, a nutritionist who made a special home visit, our GI doctor, our Occupational Therapist, our Speech Therapist, our Developmental Therapist, and even our Physical Therapist.
Is it reflux? Is it constipation? Is it his ear? Is it something new we don't know about? Or, is it just Jack being stubborn?!?!
That brings us to the present. Despite many different professionals' many different opinions and advice on the topic, Robert and I chose to just listen to our own parental instincts on this one. We took from the professionals the bits of information that we felt would work for us, and we decided to just "get back to basics" with Jack's feeding. Until we figured this problem out, we decided to place Jack back on formula because we simply felt we had no choice, since he was not getting the nutrition he needed from regular milk alone. We started Miralax daily per our GI physician's recommendation for Jack's constipation and continued his daily Prevacid for his reflux. We also decided to go back to pureeing Jack's food to the consistency that we knew he was most comfortable with until we get him over this hump. We will work on table foods later. I felt a little bummed about all this at first, scared that Jack's feeding was regressing. But I now realize that transitions just have to be more gradual for children with Down Syndrome, and we just simply went too fast with it all for our Jack. He already wasn't eating well due to his ear infection, and then we tossed another curve ball at him with the transition off formula. Not fair to the little guy .. and boy, did he let us know it!!!
So far, our new little plan is working. Jack is eating much better this week. Not awesome, but better. Some days are easier than others, and Jack still "karate chops" us during mealtimes occasionally. But, we've learned to take it all in stride, because after all, it is in fact funny when he resists us. It's cute to see his sassy little personality blossoming. We're also finding that if we have fun with meals instead of stress over them, Jack senses the mood and eats better.
Something that is also different about this week is that I have been home with Jack all week and have been dedicating most of our time to this whole feeding obstacle. This week, I officially went "relief" at work (meaning I'll pretty much a substitute nurse for the time being). I was feeling overwhelmed juggling my long work hours with all Jack's appointments, and I craved more time for it to just be "us." And, it's been WONDERFUL to have that "us" time this week! This new time together has bred many new things in Jack's world. This week Jack has not only been eating better, but he he has been trying his best to crawl and pull up to stand, he imitates EVERY noise I make (including a cute little "Indian" call we do), he turns pages in board books, and he drinks from a straw cup while sometimes holding it himself!
It's so funny how it seems like Jack knows everytime I start to really stress over him not doing something. And right when I'm about to lose my marbles ... he just does it! In case I haven't mentioned this before, this kid is STUBBORN!!! (I wonder where he gets that from?!?!)