Monday, August 23, 2010

Dentist visit

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.

3 comments:

  1. Here's my disclaimer: I do not pretend to know exactly why Calvin aspirates or does not nurse, but I will not dismiss that each thing individually could have contributed to it. I will say that I have fed him, done some stimulation, and just had more success in nursing him than I've had in 3 weeks. He did not get in a feeding, but he had a latch and sucked lightly for a few minutes. He did not reject.

    I notice too, that Calvin does not like to breathe through his mouth. I plug his nose and he does not automatically switch over to mouth-breathing. The dentist made note of it and hopes that the stimulation and forcing him to will help him to do it more.

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  2. I am so sorry you are going through this. I often tell people how if I could do it over again when Liam was first born-I would...in a heartbeat. One day after he was born and wasn't latching on well, the nurse practioner on call in the CICU decided to place an NG tube to get my milk into him. She was beside herself telling me that he should be taking at least 30ml's (really a full ounce?!? babies being breastfed are getting pinfuls of clostrum...not ounces of milk...that takes days for the milk to even come in!) But I was a first time parent, and I just did what they told me. Four weeks later, all oral feeds were d/c'ed due to possible aspiration. He had OHS and then a looong recovery and basically had no oral feeds for a solid three-four months. It was hell, depending on the tube. I will say to trust your gut and continue to try feeding and oral stim. It wasn't until my husband and I said enough is enough a few months ago and started working on cutting the ng tube out completely, that some real progress was made. Now we have a milk drinking, grilled cheese eating, tube-free 14 month old!
    You'll get there...come visit us in blogland and read our story when you get a chance!
    Sending thoughts and prayers your way-
    Kristin
    www.littleliamburns.blogspot.com

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  3. Exactly a thought I've had today as well. The medical establishment was extremely concerned with numbers and as you say, colostrum is such a tiny amount compared to what the "nutritionist" said he was supposed to be getting. I'm happy you've gotten through your struggles though and have a successful little eater. I'll be checking out your blog soon!

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