So I keep forgetting to tell you about the gagging--and apparently I have a lot to say, because I had to split it into a two part series. I'm so sorry blog world, it's just that I have been out of town for a few days, and also consumed with unpacking crazy by the box-full. I am constantly distracted (and disturbed by) the crap I'm finding, because it's like that time I found the old ponytail in my desk, but 27 million times worse, because as it turns out, I saved 14 shot glasses as a souvenir of my 21st birthday (true story).
But back to the gagging. Which really means giving you a medical history that eventually leads to gagging. But it's the story of Big J and L and their horrendously premature birth--and it's pretty fascinating to tell, so bear with me. I promise it will read like a Lifetime movie.
It's always amazing to me, how few of you know us in person--or knew us when we were surviving the the twins and their prematurity. I say that, because there was a time that EVERYONE knew us by our tragedy; but now it's a story that we tell that only lasts a few minutes. We used to be handled so gently and carefully--people were always concerned that we would break at the sight of a healthy baby, or weep if they mentioned our "twins" instead of our "triplets". We never did, though--and I have to say, that when you watch doctors, nurses and respitory therapists rush to your children's bedside, often many times in a single day, to save their lives--well, it sort of takes any sort of sting out of someone's casual word choice. It helps that we are really not offendable people, but I get that you just never know when someone's healthy kids or *seemingly* easy lifestyle might awaken "the rage" or it's awkward cousin, "the sorrow". The truth of it is that Mike was diagnosed with cancer when he was 26, while I was pregnant with G; we weren't sure if we could have more kids, so we tried invitro and conceived the triplets; my water broke with Caleb and I was put on bedrest for 13 weeks, until I went into labor at 25 weeks on the dot (I know, because I practically know the hour that my babies were conceived in a petri dish); we lost a son and picked out a casket and had a funeral and still had twins fighting for life by the hour; there were six months of life in the NICU and many, many surgeries; L had herself two moderate strokes; and at the end of it all, the babies premature birth almost certainly guaranteed that they would live with noticeable disabilities. If I was offended by a simple question, or a statement, or someone's ability to carry a baby full-term, or to get pregnant without taking shots in the ass for MONTHS--well, there's just really no telling where the end of offensiveness lies, you know? And really, that's just NO WAY to live. I'm telling you right now--you can ALWAYS find something to be pissed about, but WHY???
So, if you've never had a REALLY premature kid, then you probably don't know that feeding them is a HUGE battle. By some MIRACLE, our twins survived, despite their crappy lungs, and they got stronger. And they started to take an ENTIRE half an ounce of formula every few hours! And while they were having it injected straight into their stomach's by a pump, we would watch them stopping breathing every once in a while--because the sphincter at the opening to the stomach didn't work properly, and they were REFLUXING up the few drops of milk that were in their bellies, and they just didn't know how to swallow it and breathe on a ventilator at the same time. This happened for weeks, and then months, as reflux was the bain of my existence with the preemies. Big J even came PERILOUSLY close to death one time, because he was refluxing milk, and aspirating it into his fragile, crappy lungs--and it really just looked like the pulmonary complications of being born so early, until one of our beloved neonatologists figured it out.
Reflux = silent killer.
To survive the trauma of being a preemie, the twins were put on a crap ton of tranquilizers and pain meds; and eventually, the doctors decide to start weening them off. This goes VERY slowly, because disturbing their systems can lead to big problems, but eventually, when their levels came down, we thought L was having some pretty severe withdrawl. Turns out, it was really that rat-bastard, REFLUX. It made her miserable, which is saying something, because if you know L, she is NEVER miserable. And this was the general theme of her entire infancy/toddlerhood: we would feed her, and she would constantly and *invisibly* vomit it up her throat. Eventually, as we upped the size of her feedings, she began to projectile vomit; but this wasn't until she was at least 5 months old, and AFTER we went ahead with surgery to try and restrict the stomach's opening to the esophogas. Both twins had that surgery, because neither were able to eat and breathe effectively at the same time (sort of an important life skill)--for Big J surgery was the answer to everything, but for L (who had the surgery TWICE), it was a sign that she had a big, uphill battle to climb.
When babies reflux SO severely for such a long and consistent amount of time--well, their brain begins to believe they just can't do it. The sensation of milk going down the esophagus is associated with death (i.e., the reflux that made it impossible to breathe), and they develop a GAG to keep food out. L's body had LITERALLY trained her mind to believe that if she ate or drank anything, she would surely die; she didn't know how to coordinate swallowing more than her spit and breathing at the same time, and thus began our four year battle to retrain her.
You know how you do that?
You fight her gag reflex EVERYDAY for years, and you WIN. Or, you be okay with feeding your kid pediasure through a tube in her stomach every two hours, and all night with a feeding pump--and aside from the obvious handicap of never eating proper food, we would guarantee that she would have speech and language and intestinal issues for life. There was still a chance she would never eat by mouth, and there are families that battle that EVERY DAY; but we were also told there was a great chance she would eventually get it, if we kept after it. It was COMPLETELY my choice--just like CHOOSING whether to fight Big J on eating squash. In in either case, I don't believe giving up was going to help my kids.
Now. In this scenario, we actually had it pretty easy, because for all of her medical issues, L was a DREAM. She never fought us when we put a bite of pudding, or peanut butter, or yogurt, or a nutrigrain bar, or cheese, or a bit of brownie, or ice cream, or rice cereal, or egg, or braunsweiger or applesauce in her mouth. For a period of time we thought maybe she had that weird thing where she didn't have pain receptors, because the girl rarely cried, and she gagged horrendously at every attempt to feed her--and yet she kept letting us do it, and SMILING through all of it. We would always pry her jaw open and angle the tiny bite of food onto the side of her tongue, and she would grimace and try to swallow, and then GAG, and sometimes throw up the fourth-of-an-ounce of residual formula that was still left in her stomach from her feeding two hours earlier. We had occupational and speech therapists, as well as a nutritionist who came to our house to help feed her about twice a week, and we were responsible for trying it on our own once (and eventually twice, and three times) everyday. Every feeding was long, and frustrating, and involved constant gagging and usually some vomit for almost FOUR YEARS. She would start to get it, slooooowly, and then I would give her that last, tiny bite of a canned peach slice and she would gag and vomit--and it was emotionally devastating to me.
And tomorrow, I'm going to show you EXACTLY what that looked like--to struggle through something, and HOPE that your child will get it one day. I have a video from the archives--and if there's one thing we have come to learn, there's nothing like a good video to stir up some seething hatred. Wait for it, and come back, because I am going to show you one of the hardest parts of my entire parenting experience, that literally consumed me for four years. It has shaped everything about who I am, and what I am capable of, and what I believe my kids to be capable of. Except that now, we are all able to examine it through the lens of time and perspective.
And some of you will HATE it, but it was literally, MY LIFE. So be sure to come on back tomorrow to pass judgement. I won't take it personally, because I win this one in the end.
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