If you haven't yet, watch the first video on the link regarding John Garrick.
I took Calvin to the dentist this morning. I have been on fire ever since. I have regrets about how Calvin was handled after his birth. I did during his birth with those tests, WHY did I let them take him from me right away and put him in the NICU and DISCOURAGE me from holding him??? "It's hard on him to be taken in and out of the isolet" they'd tell me. Well, knowing a bit about pyschology and attachment and bonding, I knew deep in my heart it was all wrong. I should not have shoved that feeling away. I did so I could get through those times.
Here's my main issue with how things were handled. Supposedly Calvin had low blood sugar so they shoved the tube down his throat and fed him formula. Insert questions: "Is it normal to have low blood sugar following birth?" "Shouldn't he try to nurse right after birth?" Well, I didn't even get to hold him more than a minute for roughly 6 hours. Meanwhile, he was force fed food through a tube. Insert another question: "Shouldn't he at least bottle feed and in a day if he hasn't eaten, THEN consider the tube?" I tried nursing and for those first 2 days he did. Not much, but he did. Add in time and more insults (blood tests, strangers-nurses and doctors and others, echocardios, chest x-rays, various bottle nipples, and the list goes on and on). Radiation and formula and A LACK OF A MOTHER! It's no wonder he didn't nurse. He felt rejected by his own mother and his throat was nothing to trust. And he's considered "retarded", well, I think I am the slow one to learn, but not any slower than the people working in the NICU.
Do I discredit everything they did? No, but I'm not sure much of that stay was necessary. He could have had his meds regulated from home with a visit to the doctor. He could have been tub fed AFTER he was not gaining weight or eating properly. It's all crap now and I regret my lack of knowledge and dismissal of my feelings.
I have been realizing all of these things have contributed to Calvin's feeding issues. The dentist pointed out some issues with Calvin's throat and his cry and the way he breathes. He noticed right away that Calvin does not really cry. I thought it was because he was content. But, when he does cry, it's not really a cry, it's a scream. The dentist, Dr. Laughlin, was able to get him to cry by stimulating his mouth while pinching his nose shut. He sounded like a newborn crying! It was great (except that it points out his lack of it over the past month - Note: he sounded like that when he was born, before the NICU insults). Dr. Laughlin said the tube in the nose through the throat is a huge insult to the throat. He is trying to protect himself. I truly believe that this has led to the majority of the aspiration issues. Warning, there will be some swearing going on here. There was so much bullshit given to me in the NICU. "Children with Ds have large tongues and that is why they don't suck well, blah blah blah". I'm here to squash most of the bullshit beliefs people have about people with Ds, including myself. I should have known when one of the nurses went on to say something about "normal children" (by the way, I left after that and cried my heart out). Oh, guess what, the SLP in the NICU told me... lots of babies in the NICU aspirate and are on thickened food! WOW, is that just a correlation or could there be something they are doing that is contributing to that, like...oh, a tube down the throat? Or, lack of bonding between parent and baby? I get that sometimes it's not medically possible to have as much bonding (being held) but with my little Calvin, it was. He did not need any intervention besides the feeding issues.
I know what some peeps will say to that though and it goes like this: "Children with Ds (or any child in the NICU?) have lower muscle tone and that is why they can aspirate." I'm just not sold on this explanation.
Well, I guess I have said what I need to at this point. Check out the video and you'll see what we've done on Day 1. I'm going back tomorrow morning. In the meantime, I will be stimulating and gaging Calvin (don't worry, it's to help him get over the fear that is the same as you and I would have if someone was starting to put their finger in our mouth and he should start using his throat as it should be). I will also be gently massaging his body and his throat. I don't know what it's called (yet), but that hard part in the front of your neck, that moves when you swallow, is soft on Calvin. I bet yours is hard, as his should be. We have a lot of work, but I'm not giving up and I'm determined to see things change. It is not okay and I wish I would have held on tight to Calvin and not given him up to the NICU so easily.