When you're the parent of a sick kid, you have a whole host of worries that are unique to your situation (although very common in these circles, I would assume). I look back on Lukas and Miles growing up and almost laugh that we were so focused on Luke's development, always comparing his progression to the next child. We would stew over things if another child near (or God forbid, younger!) Lukas's age was doing something faster or better than he was. So of course, in lockstep with our neuroses, Lukas decided to just take his time speaking. We were worried incessantly, wondering if his "de de" to everything would actually materialize into words. And then, just like his Daddy had when he was a baby, Lukas started talking in sentences. Today, there are times that I look back to his "de de" days with fondness. But, it's fair to say that we worried about Lukas' development more than anything else.
Miles was unique as well. With the second child, every worry about development went out the window. That's what happens when you have a second. You don't have time to worry about which week it is, and what Baby Center is telling you the baby should be doing. It's no longer cute. It's just extra stuff that makes the baby harder. You start hoping that your child is going to be the silent one until he's two. You secretly hope that he'll fully reject any idea of being mobile, sticking to sitting up and playing quietly by himself. Where you were the militant Mom and Dad with the first, living your life as though a missed nap at home might result in the fall of the human race, or the quickening of global warming, with the second, you come to the realization that everything...literally everything...can be done mobile. He can nap in the car, on your lap, in the stroller, or on the stomach of a random homeless man if you happen to be at Pioneer Park. Breastfeeding really can take place anywhere, provided you have a large enough cover and carry your La Leche League membership card ready to flash as though you were the Milk Police. Stop in the name of the booby!
Sam, on the other hand, rocked my parenting world. For as confident as I had become about raising children, Sam cut me off at the knees. He made me question absolutely everything, from what normal baby poop looks like, what appropriate breathing is, how to introduce solids, or whether his eyes look good, puffy, or abnormally large. I've fretted about the size of his hands, his head, and feet. I've worried about his heart rate, oxygen saturation, and breathing rate. I've laid awake concerned about his developmental steps. But most of all, having a sick and special kid gives you some basic worries that you really never leave. They are with you at all times, in all ways. Weight, heart rate, and oxygen saturation. If you ever need a calling card to really scare the shit out of you when you have a sick kid, just stick to those. They never disappoint. Every night that Sam has been in our home, he's been attached to a pulse oximeter at night. I can tell you that a heart rate under 100 gives me peace, while a resting heart rate above 120 gives me pause. Over 130 and I start having serious panic attacks about an impending heart failure episode. Oxygen saturation is quite similar, if on a smaller scale. While on oxygen 98-100 is my safe zone. 97 puts me on laser mode, always staring to make sure we don't drop below. 96 is very nearly a serious problem, and when you get into 93-95, you start looking up oxygen saturation articles on the internet.
Weight, however, is a different kind of scary. It's a slow drip, as opposed to an immediate shot in the arm like the heart rate and oxygen saturation readings. You resort to silly tactics to get a reading, even though you know the flaw in your logic. For me, I would stand on our (not great) weight scale, then stand on it while holding Sam, and do quick math. It gave me either a level of comfort or a cause for worry. And while he had been a champ with weight before the heart failure episode, weight gain had seemed harder to come by for little Sam. And while he seemed to be thriving in some ways (he had come off of oxygen, he seemed to be sleeping a bit better, and wasn't a terrible eater as long as the Milk Police were providing (don't mention the bottle)), there were some concerning things that we saw as January turned to February. He wasn't gaining weight...not much, at least, and with each visit to Dr. Pete's we saw a slight drop in his overall weight percentages. There were days where his breathing seemed to be a little more difficult, and we would rush over to put him onto the pulse oximeter during the day just to make sure that his saturations were holding well off of oxygen (they were).
We had also delved into the world of cereal. Rice cereal always seemed to be the safest for the other kids (again, proof that Sam was not our typical child), but it was a rough go with our littlest. He didn't seem all too interested in it, and 2 days after we started, he seemed more and more miserable. It was clear that he was having some sort of stomach and or intestinal reaction to it. It made him miserable, us miserable, and again increased the worry quotient exponentially. Something just seemed off. Sam was progressing, but it was fair to say that the curve of his growth was rocky and jagged. The smooth parts - they couldn't be found. It was made worse by the fact that Sam wasn't sleeping, so neither were we. It was a strange confluence of emotions. So relieved and thrilled that Sam was clearly not exhibiting heart failure. Worried and concerned that his progression had not been a vertical line up.
As a result, we considered everything. What was the right combination of food? Should he just be getting breast milk? Was he eating enough? Was it possible that he was breathing harder, and that was putting greater pressure on his body that we were even aware of? It was only after weeks of worrying that my thoughts turned to his medications. I wasn't suspect of the Zantac, or Sildenafil. The purpose of those medications were to control acid reflux and to open up the blood vessels to take pressure off of Sam's heart. I did start to wonder about the Lasiks, though. That was designed to shed fluids away from the heart and lungs during heart failure, and I knew that was why he had been kept on it long after. But I also knew that adults used diuretics as a weight loss option. And let's be honest. This wasn't Baby Weight Watchers. We wanted weight on the boy, not off. I started wondering if the pull of fluids out of Sam was causing his body to really work harder..and to hold onto every ounce of nutrition it could.
To say that my theory landed with a collective thud in the medical community was an understatement. It started with Dr. Pete. While I love that doctor, when we mentioned the Lasiks, he stated that there was no medical proof that it would affect Sam's eating and disposition. At least I learned from my time at St. Mark's that the lion should still prowl beyond the first resistance provided. I pushed on Dr. Pete the next time we were in the office, and was told again that it was just Sam working through and adjusting to a life without heart failure. We were even told that Sam was just needy...he'd admittedly been through a lot and he was going to cling a bit more. I called and left messages for Dr. Day and his nurse Linda. While she was further hesitant to see the connection between the diuretic and Sam's eating/sleeping/disposition, she was at least willing to talk to Dr. Day. When she came back, we were offered guarded pessimism. They both did not believe there was a tie to what we were seeing, but after conversations with both Elisa and myself, they agreed to let us take Sam down to one dose of Lasiks a day. You could tell they were worried about the impact - they didn't ask to be told if he started eating better. They just wanted to know if Sam's hands and feet started to swell without the fluids being pulled off.
The next day, we gave Sam a single dose of Lasiks. No evening dose. That day, he was still cranky. Still not eating well. Still not sleeping like a champ...
But the next day, like the sun peaking through the clouds after a ferocious rain storm, Sam's sunny disposition started to make a more lasting visit. It really was like the flip of a switch. Sam ate better than he had in months. He didn't seem as cranky. And while his sleeping was still a serious problem, he didn't seem to be nearly as pained and uncomfortable when trying to get some shut eye. The days turned into weeks, and Sam seemed like a different baby. Happy, talkative, and not nearly as agitated. Where meal times with Elisa had been a screaming fit that only seemed to be quelled by tricking Sam into thinking he was sucking on a pacifier, now he ate ferociously. We reintroduced cereal (skipping the rice in favor of oatmeal), and Sam became a little bird, opening his mouth for every single bite. All Elisa could say was how great Sam was doing. All I could think was how right we might have been when we considered what a diuretic (used for weight loss in adults) could affect a child that was desperately trying to grow. It's not that I was arrogantly thinking that I had outsmarted medical professionals. It just made me realize that a mother or father's intuition, at times, could be worth a medical degree when those with one remained pessimistic.
That's not to say that it was all roses. Sam's sleeping patterns and habits were starting to wear on two parents that desperately needed sleep (although they hadn't properly done so for over 6 months). Those habits would be coming to a head as we headed into Sam's 6 month well baby exam, and started to see a little baby that might have been behind on weight gain, but was finally gaining again.
That laid in front of us. That, and the pesky little problem that Sam was still on oxygen every night. Freed from the cord and the canister during the days, the change in Sam's disposition and the slow march to Sam's next possible embolization ignited a small flame inside of his parent's brains. Intuition was starting to kick in, and Elisa and I both started to silently (and then not so silently between us) mention what the world might look like without a cannula on Sam's face...at all.
After all, if we could take him off of Baby Weight Watchers and see such a sudden change in his disposition, it begged the question...what would a little less oxygen do to kick start Sam's healing in new and different ways? Maybe it was time to ask.
Until next time.
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