Please pardon the overtly flowery title of this post. It's just what I'm feeling today.
I know most moms feel this way about their babies. I certainly feel this way about my older child too.
But you know, sometimes you have one of those perfect moments and the clarity of your love sharpens and comes into focus.
Last night Sproggy and I were laying in my bed, I was scrolling through some Facebook postings, keeping an eye on the Super Bowl highlights while she laid next to me took turns babbling and taking some sips from her bottle. It was clear she really wanted my attention, to play and have fun, but knowing it was way past her bedtime, I pretty much ignored all her attempts to engage with me.
Then, slowly, the babbling slowed and her eyes started closing slowly. I purposefully avoided eye contact with her, propped on a pillow right next to mine.
After a few minutes of quiet, with just her lullabyes playing softly on my phone, I turned to check if she was asleep. Her eyelids were nearly closed but her eyes were shifted, fixed on my face, staring at me, almost as if using The Force to get my attention on her. I couldn't help but start to laugh. Then she slowly started to smile. I laughed more. She smiled more. Repeat. I said "My God, you have my heart forever."
Now, that language is NOT typical of me. I'm not poetic, I'm not flowery in my language at all. These words just came from a place in me that only my kids can tap into. They just sometimes bubble up without warning.
I'm finally coming around to the understanding that, even if she's not typical, she's still somehow perfect. I'm like that scene in Love Actually, where Rick Grimes holds up the cue cards to Keira Knightly which say "To me, you are perfect." That's how I feel about her. I mean, maybe these people who have intellectual disabilities have a much better understanding of how life is SUPPOSED to be lived. Sproglet only knows how to love. Even when her big brother is crushing her with one of his monster hugs, or shrieking in her face, she looks back at him with the most adoring smile.
And she does the same with everyone else too. No one is safe from one of her gushing squeals, which her older cousin told me make her sound like a velociraptor. She lives to connect with and make others smile. What a noble gift to be given. It's like looking at a totally pure soul, innocent, sweet and, I don't know... Close to God, I guess? She may make me believe that people are brought into our lives for a reason.
Monday, February 6, 2017
Thursday, February 2, 2017
MRI = "Miserably Ravenous Infant"
Well alright! We're finally on the other side of Sproglet's first major test- I say "major" because it's the first we've done that has required sedation under general anesthetic. We've done neuro studies that required sleep deprivation, and feeding studies that required her to skip some meals, but this MRI was the first one we'd need to accept the risks associated with sedation.
To that end, Children's Hospital is (rightfully) quite strict about the safety of babies undergoing sedation. They would not sedate Sproglet if she showed even a hint of a respiratory infection- which is why we had to reschedule the test five times. Every time we arrived at the scheduled MRI date, she would develop a fever or a head cold or a cough. Pretty difficult to avoid germs during a Boston winter, after all, and keeping her in a bubble was not an option. Plus, her pulmonologist believed that she was aspirating her formula, which was exacerbating all those chest infections, so getting her feeding under control was imperitive before the MRI.
Which brings me to the morning of the MRI. We'd followed the strict feeding schedule that Children's had given us (no formula after 4am, and only water until 8am), but what no one had taken into account was the fact that Sproggy's liquids are now thickened. The product that we use to thicken her formula has a food additive which, turns out, alters her digestion. Long story short, once the anesthesiologist found out I'd added the thickener to her water that morning, he refused to anesthetize her.
So, 5 months, 6 scheduled MRIs that had been rescheduled due to illness, only 2-3 more months until the issue that the MRI may or may not diagnose can no longer be treated surgically...we finally get to the Big Day and they tell us to go home.
The poor nurse who had to deliver that news to us. I'm not sure if it was the flaring, raging nostrils on my husband or the tears that were welling up in my eyes, but God Bless Her, she someone worked some magic in the tight MRI schedule, and pushed our appointment back 7 hours just so it could be done that day.
Yup, seven hours of a food deprived infant. That was a hoot. But honestly, the nurses were wonderful, so were the doctors. They took turns coming in to the room to play with Sproglet to help pass the time and distract her from the hunger pains. They even brought in 4 extra nurses who sang "All About that Bass" to her while one of them inserted her IV (she loves Meghan Trainor) to distract her from the pain of the needle.
And the best part for me was that, since I was focused on keeping Sproggy calm as possible, I didn't have time to ruminate on anything that could possibly go wrong. Not that I thought anything would go wrong, but that fun anxiety disorder that I have doesn't really care about reality.
Anyway, they finally took her back at 3:30... She took a big liking to the handsome anesthesiologist, went right into his arms and gave him her best big smile. No complaints from her, no sir, not in biceps like those. She's just like her mommy.
And then, suddenly, she was all done. We were brought back to recovery where she was still asleep but starting to wake up. Once she was fully awake she downed a bottle of formula quicker than I'd ever seen, came home and slept like a log. She really did great.
So now we wait for results. We managed to bump the appointment with the neurosurgeon up by a couple of weeks, so we'll find out if surgery is needed. My fingers are crossed that the answer will be "no" to that. But if she does have a tethered spinal cord, it could mean the difference between her walking or not. Kind of a big deal.
Whatever the outcome, I do know she'll face any challenge gracefully... and she will help me do so gracefully as well. She's proving herself to be a fierce little girl and I'm in awe of her ability to stare down a challenge.
To that end, Children's Hospital is (rightfully) quite strict about the safety of babies undergoing sedation. They would not sedate Sproglet if she showed even a hint of a respiratory infection- which is why we had to reschedule the test five times. Every time we arrived at the scheduled MRI date, she would develop a fever or a head cold or a cough. Pretty difficult to avoid germs during a Boston winter, after all, and keeping her in a bubble was not an option. Plus, her pulmonologist believed that she was aspirating her formula, which was exacerbating all those chest infections, so getting her feeding under control was imperitive before the MRI.
Which brings me to the morning of the MRI. We'd followed the strict feeding schedule that Children's had given us (no formula after 4am, and only water until 8am), but what no one had taken into account was the fact that Sproggy's liquids are now thickened. The product that we use to thicken her formula has a food additive which, turns out, alters her digestion. Long story short, once the anesthesiologist found out I'd added the thickener to her water that morning, he refused to anesthetize her.
So, 5 months, 6 scheduled MRIs that had been rescheduled due to illness, only 2-3 more months until the issue that the MRI may or may not diagnose can no longer be treated surgically...we finally get to the Big Day and they tell us to go home.
The poor nurse who had to deliver that news to us. I'm not sure if it was the flaring, raging nostrils on my husband or the tears that were welling up in my eyes, but God Bless Her, she someone worked some magic in the tight MRI schedule, and pushed our appointment back 7 hours just so it could be done that day.
 |
| "You are, LIT'RALLY, the worst mother on the planet." |
Yup, seven hours of a food deprived infant. That was a hoot. But honestly, the nurses were wonderful, so were the doctors. They took turns coming in to the room to play with Sproglet to help pass the time and distract her from the hunger pains. They even brought in 4 extra nurses who sang "All About that Bass" to her while one of them inserted her IV (she loves Meghan Trainor) to distract her from the pain of the needle.
And the best part for me was that, since I was focused on keeping Sproggy calm as possible, I didn't have time to ruminate on anything that could possibly go wrong. Not that I thought anything would go wrong, but that fun anxiety disorder that I have doesn't really care about reality.
Anyway, they finally took her back at 3:30... She took a big liking to the handsome anesthesiologist, went right into his arms and gave him her best big smile. No complaints from her, no sir, not in biceps like those. She's just like her mommy.
And then, suddenly, she was all done. We were brought back to recovery where she was still asleep but starting to wake up. Once she was fully awake she downed a bottle of formula quicker than I'd ever seen, came home and slept like a log. She really did great.
So now we wait for results. We managed to bump the appointment with the neurosurgeon up by a couple of weeks, so we'll find out if surgery is needed. My fingers are crossed that the answer will be "no" to that. But if she does have a tethered spinal cord, it could mean the difference between her walking or not. Kind of a big deal.
Whatever the outcome, I do know she'll face any challenge gracefully... and she will help me do so gracefully as well. She's proving herself to be a fierce little girl and I'm in awe of her ability to stare down a challenge.
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