I found myself in the midst of a major "Duh!" moment yesterday. I was reading a beautiful post by Lady of Virtue on her blog Large Family Mothering. At some point during this post something in my brain clicked and I realized that somewhere along the way, amidst all the different 'therapies' and 'specialists' and appointments and procedures and surgeries and...okay I will stop. But somewhere along this journey I forgot to just 'mother' Mikah. I forgot to do what comes naturally. I forgot that at the core of his being, he is still a baby. He still needs to be nurtured. No amount of 'therapy' or 'specialists' can replace my nurturing and caring for him. He needs me to do with him what came so naturally with Ellie. His chromosome deletion doesn't negate his need for me to follow my instincts. It doesn't mean that he needs me to change they way we naturally progress on the road to being an independent human being.
Where am I going with this?? All these thoughts were swirling around in my little brain in relation to Mikah eating. He doesn't eat. Yes, he has his tube and for some people this is how they eat, how they must eat. Many people, young and old, have physical problems, they lack anatomical features needed to eat, they swallow their food into their lungs, medically speaking they aspirate. Mikah does NOT have these problems. He just doesn't eat. He used to eat. He loved sweet potatoes and would eat 4-6 ounces at a sitting. The problem was the "sitting" would be an hour. He never had time to not eat and for a little fellow with a little mouth and little muscles and tone that was just too much work. His body just couldn't do it. This is one thing that likes to start replaying in my mind over and over again. What could I have done differently? If I hadn't been so adamant about nursing him would things have been different? Where did I go wrong in feeding my son? These of course are useless, mind numbing, depression boosting questions that must be squelched as soon as they start and so I tell myself to stop. It doesn't matter now. We cannot change the past and God knew what was going to happen.
So back to Mikah not eating and not having any of the aforementioned eating/swallowing problems. He actually had a swallow study done a week before he had his g-tube placed and he doesn't have a problem swallowing. In fact, they usually have the kids come back a month or two later for a repeat test and Mikah was so good at swallowing they didn't want to see him.
So why doesn't he eat? After he had his surgery for his g-tube he stopped eating. I hear this from other moms. There are a multiple of guesses and perfectly reasonable explanations but really no one knows. Over the past several months this is one issue in Mikah's life and yes, I think it deserves the rating 'issue', that has been surfacing more and more in my little talks with myself. Um, did I just write that? Now you all know, I talk to myself. Not out loud. Then someone else might be able to jump in with their two cents and where would the fun be in that?
Okay, so Mikah eating. Little things have come up, comments made to me, posts on blogs like the one mentioned above and this one by Jennifer at Three's A Charm. There was a possibility recently, which I still haven't brought myself to blog about, that Mikah was going to have surgery to remove his tonsils and adenoids and that afterward he would need ICU care. One reason being that he would need suctioning because he has swallowing difficulty. I very adamantly proclaimed that he most certainly does NOT have a problem swallowing! And this person said, well he doesn't eat of course he has swallowing problems. But he doesn't! So we are back to this question of why doesn't he eat.
Something in the post on Large Family Mothering and Three's A Charm awoke a sleeping neuron in my brain and it just seemed to click. (I am hoping it doesn't un-click) Why on earth don't I just do what I do naturally? All the suggestions from therapists and specialists have not worked. When Ellie was learning to eat did I use a Jiggler or a Z-Vibe on her mouth for 5 minutes before eating, did I swing her around and stimulate her arms and legs, did I 'massage' her cheeks and stick my fingers in her mouth and brush her teeth and gums and try to get her to bite down?? No! I am positive I would have remembered that and that she would have been severely out of sorts by the time we actually got to the eating part. Which is exactly what happens with Mikah. By the time the food is on the spoon and being flown to his closed mouth and through his flailing arms, well, by then there is no food on the spoon...hopefully you get the picture.
With Ellie it was much simpler. When it was time to eat I sat her in her highchair. Put some warmed food on a spoon and put the spoon and the food in her mouth. She either spit it out or she swallowed it. When we had done this for what seemed like a sufficient amount of time I nursed her. We then repeated the process for all the other mealtimes during that day and started over the next day and the next day until one day she ate a whole meal off a spoon and then we started working with a fork and different kinds of foods.
This is my simple plan with Mikah. He is not nursing anymore, something that I am sad about at times especially when the questions about how this all happened begin. Again something I cannot change. Since he is not nursing I will sit him in his highchair when it is time to eat and before his tube feeding and for what seems like a sufficient amount of time I will put food on the spoon and airplane the spoon into his mouth. Some will come out and I will swish it up with the spoon, some will stay in and this he will swallow.
And someday, he will eat all 4 ounces from the organic applesauce container and I will cry tears of joy. Similar to the tears I cried when I realized that Ellie just didn't need or want to nurse anymore only these tears will not hold any regret because I will know how hard Mikah and I have worked for them. I will know the journey that has led to them. I will know that I have found my way back to truly mothering my son.
Did you make it through my ramblings? If you did you will be excited to know that I started to put this simple plan into action this morning. Here is the email I sent Dave after lunch: I just fed Mikah some more applesauce. I think he really wants to learn how to eat. He didn't scream. He did turn his head away but willingly opened his mouth several times. He even grabbed the spoon, I thought he was trying to shove it away but one time he grabbed it before I could move and he took it to his mouth and licked some applesauce off. So far today he has eaten half of a little applesauce container. I warmed it and sprinkled cinnamon over it. I will try again before his 4:30pm "meal".