Darry is doing wonderful! He had a neurological assessment by an OT today. It was hilarious watching her try to get him interested in a toy to track back and forth. Darry preferred just to look at her and smile. So she moved her head back and forth to see how well he tracked. He did really well overall. He scored very high on his cognitive and a little lower on his physical. He's very active but when it comes to tummy time, he really only prefers to look toward his right. He will eventually move his head to the left but it doesn't seem like he enjoys it. So even though his physical score was still in the normal range we're going to get an assessment from a physical therapist to see if there is some muscular tightness going on. Or they might say there is nothing to worry about, he's just getting started. Either way it's a really tiny hitch in his giddy-up but I felt a little sad anyway. It's just hard because he's already been through so much so even little things feel unfair and hard. It could be way worse, which is one of those things we say that makes us feel bad for feeling bad. But it's also true. It could be way worse.
He'd also had another EEG a couple weeks ago where they connected little wires to his head to monitor his brain waves. The neurologist said his brain waves were continuing to improve but that there were still a few abnormal "discharges" that go off around the site of the stroke, which is a little scar now. (For days Shaughn lamented that he couldn't believe our brand new baby already had a scar, like a new car owner who got its first ding. "Aw my poor beautiful baby!") But things are improved enough that she took him off the last med he was on. The neurologist always compliments how hard he is trying and how he really deserves the best shot we can give him. And it's true. If you can imagine a baby "trying", than Darry is it.
However, he is at a risk of future seizures. Which makes taking him off his meds a little scary. I watch him like a hawk and am constantly holding my breath and asking "What was that?!" All babies have immature nervous systems, and do little shakes and jerks here and there. But if you were to hold tightly to whatever was shaking, it should stop. Unlike his jerking hand that I saw when this all started. So I am perpetually grasping onto him and squeezing. Thankfully it doesn't seem to annoy him too much. But I'm worried that in therapy, years down the road, he is going to be crying about how he is afraid of his body and how all he wanted was to dance with Jazz hands but every time he tried I squeezed his hands and became visibly sweaty.
The neurologists and several other doctors have mentioned the 30/30/30 percentage to us. Basically, 30% of kids with pediatric stroke suffer none/mild long term effects, another 30% will have mild to moderate effects, and the last 30% will have severe long term effects. It's my guess that Darry will be in one of the first two categories. Of course, it's impossible to predict at this point, but that is my guess. Although there are times where I worry he will be in the latter percentage and it breaks my heart thinking of him struggling through life. But I have to remind myself that even if that is true, he is beautiful and perfect right now. That right now is the time to enjoy spastic arms, sweet smiles, funny feeding sounds and the lovely warm weight of him sleeping on my chest.
I've been thinking a lot of what it is like to have Darry and to finally be a mom. I had felt so sure of myself when I was pregnant the first time, so confident things would go well. And my confidence that things generally go ok, was shattered when I miscarried half-way through my pregnancy. I had serious doubts that I would ever be a mom. When I got pregnant the second time I felt so guarded. I didn't want to get too happy or attached. It has felt like a fable or a Greek myth. Like I have been on the shore where the river is loud and the current is strong and my first baby just couldn't make it and she was swept away. So a really strong, brave soul was sent next and he swam and swam with great heart to the other side despite the many pulls of the current to take him away.We bought a doppler monitor after the first couple months in my pregnancy, so we could listen to Darry's heartbeat whenever we wanted and it was enormously comforting. I would wake up thinking he had died in the night, get out the doppler, and hear his loud and steady heartbeat. It was so strong. Every appointment, every ultrasound, I would prepare myself for hearing he was gone. But he was always just fine, excellent even.
But then he went two weeks overdue and I had to get induced. I went into labor on my own shortly after being induced and that strong little heartbeat dipped during every contraction. And while my contractions meant business, I wasn't progressing. We hit a point where the Drs weren't sure if I would progress (it actually felt to the OB that my cervix was scarred over at the top! He said we could amp up the pitocin to see if I would dilate but he wasn't very hopeful). So I elected for a c-section and it was scheduled for the next a.m. But before I could even get comfortable thinking about having it all over in 12 hours, they pushed it to 4 hours, and then said, actually NOW! Darry's heart rate was continuing to dip (my labor had slowed but I was still having contractions) and he had a couple dramatic dips. So a swarm of nurses swooped in, flipped me over so I was on my hands and knees on the bed, put an oxygen mask on me and began to scrub my belly as they quickly wheeled me down the hall. On the way down to the operating room, I realized this was it, he was gone. I was so close, but I still wasn't going to get my baby. I tried to keep it together but was unraveling. As soon as we were in the operating room and hooked back up to the monitors, I heard the baby's heart rate which had returned to normal and was strong and steady and I relaxed a little. He was going to make it. The OB showed me how to slump forward so the anesthesiologist could get the spinal block going. The OB held me into his chest, and barked orders at everyone. It was a weirdly intimate moment. He was wound up and bossy which I found very comforting. And before I knew it, Shaughn was by my head and we were looking at each other wide eyed and grinning at the sound of our baby out of my belly and wailing.
And it was good to be on the shore with him in my arms. I thought all was going to be well until his seizures. Then I honestly didn't think we were ever going to get to take him home. That motherhood would never leave the shore. But then through all those heavy medications that made him completely limp and puffy with edema, his heart rate was strong, and he continued to breathe on his own to all the staff's surprise. And it was my delight to see him wake up, rip off his monitors and feeding tube, and begin to wail again.
It was in the middle of trying to get the seizures to stop and seeing how strong he was that his neurologist first said that he deserved every chance we could give him because he was trying so hard that I stopped despairing so much. My son was tough and the least I could do was assume he would pull through. Of course, I still worry it's too rough out here, but I've also come to trust that Darry is strong and capable of making it.
Some thoughts on being a new mom.
--I took Darry to Babies R Us, which is a 20 min drive away and it felt like an ADVENTURE! I even said, "Ok Darry, here we go!" like we were about to take off on a roller coaster.
--I got excited when Darry's nap let me clean my room. And start some laundry! And put some dishes away! Oh boy!
--As a nanny and preschool teacher, I had a lot of confidence but if I wasn't sure what to do with a kid, I would feel terrible and panic-y because I was hired to know. I was a professional. But now, when Darry cries, I feel way less confident. In fact my first thought is always, "AGH! SOMETHING IS HORRIBLY WRONG!" I have to talk myself off the ledge almost every time he cries. But the flip side is I don't really feel bad about not knowing what's wrong. Because with your kids, I'm a professional but with Darry I'm a New Mom. New Moms don't know anything! They are not expected to have it all figured out just yet. They're a little disorganized, a little under bathed, and wild about their little babies. I might have lost a little know-how confidence and I might google "normal baby fontanel" too much, but I am owning being a New Mom.
It's been fun taking Darry to new places. Not because he necessarily enjoys them because as far as I can tell, he barely notices. But it just feels like a brave new world out there. We have a baby carrier that's a wrap thing called a Baby K'Tan. It was a gift from my in-laws and I tried it on when I was pregnant, using my childhood baby doll, Molly, and it fit just fine. Now that I'm not pregnant and I'm down all my baby weight (thanks to the stress diet where instead of eating you hang out at the NICU), it didn't fit well at all. Darry kept getting slumped down and his weight would pull him down around my belly which was cute but so uncomfortable. Unfortunately I no longer had the receipt or the box because i figured I had already been responsible enough to try it on. I called Babies R Us and they said they would replace it for me anyway. Woot! Describing the situation I totally felt the power of the "New Mom." Even though it makes my ego a little uncomfortable to admit that maybe I don't have everything quite put together, I LOVE not having to pay full price for all my mistakes. Getting cut some slack feels awesome. It must be what really beautiful or really rich people who couldn't worry their pretty little heads about receipts and boxes feel all the time.
The trip to Babies R Us was great. I sang to music in the car and Darry slept. Win Win. When we got there, there was a tall somewhat heavyset man behind the returns station. I brought him the wrap and explained everything, he looked up the receipt on my registry and started the return process. The whole time he had this half smile where it looked like he had just smelled something bad or he was biting back calling bullshit on my return. Whatever it was, it put me on edge. I tried to make small talk but he wasn't really interested. As we were about finished he asked me "How old's the little one." I told him 6 weeks and he said "well congratulations, kids are great but they grow up so fast. It seems like just yesterday my nieces and nephews were that small and now...shew!" and he made a whoosh sound like they had just zoomed by. I agreed with him and started to expand on that but he cut me off to say I was all set and to have a nice day.
So I strolled off, picked out a wrap the size smaller and headed to the register. As I got there, I realized the same guy was now at the cash register instead of the returns area. I said "hello again!" and he said hi and asked if I found everything alright but seemed a little distant. As we were finishing up he asked how old's the little one? I said 6 weeks and gave him a look like hey we just saw you. And then he half smiled and said, "well congratulations, kids are great but they grow up so fast. It seems like just yesterday my nieces and nephews were that small and now...shew!" He gave me his schpeel again! I nicely said that yes they do in fact we were just talking about that and he stopped and said, "I know. Didn't I give you your receipt?" Except now instead of a half smile he looked angry like I had really crossed a line. I agreed he gave me the receipt and but before I could say anything else he cut me off and told me to have a nice day. Darry and I left toot sweet. Man, if there was ever someone who needed a "New Mom" card it was that guy. Sure loving the new K'Tan though!