G-Tubes
Two steps forward, One step back.
It's been a week and a half now since Simon's G-tube surgery and we're slowly getting back to a familiar rhythm. We're still working on sleeping and comfort but otherwise we're doing really well.
Simon's sleep has been just about the worst that it's ever been with him waking up every 1.5-2 hours and taking a lot longer to get back to sleep. This is very different from the pre-surgery boy who would usually only wake twice and be back asleep in 5-10 minutes. Both Jaime and I are starting to hurt a little but I have to remember that it's not nearly as much as the little man who's still working on getting used to having a 2 inch shaft sticking out from his stomach. It breaks my heart to have him wake up wailing and there be just about nothing we can do for him other than affirm how sucky things are in the moment and wait for the right second to see if something will distract him (blinking lights and a rapid, soft bounce seem to be our number one tricks right now). It also seems to be discomfort and newness versus real pain since distraction is possible and almost has an immediate response.
Still, it's quite exhausting. He's still a champion when it comes to putting himself to sleep and for that I am so thankful. He can amuse himself in bed for almost half an hour before gracefully falling asleep. It's just the waking that seems to be hard. One of our meds has been known to bring on night terrors. He just had surgery. He's a little baby, so new to all this. Who knows what it is.
He is getting better about being in his body though. It's still not fun for him to be picked up simply by placing your hands under his armpits or trunk. We still need to support his rump (any excuse to feel that sweet little tushi right?) but he seems to be getting better about that day by day. We even managed some tummy (really knees and arms) time and he was showing me how close he is to understanding crawling and how it all can work for him, getting to shiny things placed just out of reach (wicked mommy).
Really it's the sleep thing that kicking my own tush. I must get better about napping when he naps but it all seems hopeless. Stick with me while I kvetch for a second- Simon's first nap is around 8:30 and I'm not ready to go back to sleep just yet- that ones out. Nap II is midday and unfortunately almost always split in two with a wake up that usually requires either patting or picking up before going back to sleep. Nap III is late in the afternoon and if I sleep that late will I be able to fall asleep in time to get some Zzzz's before the first wake up at night. Plus there's the eating thing, emailing thing, and taking care of some business thing that I feel compelled to do. I just haven't been able to make it work and up until two weeks ago I wasn't feeling too worse for wear. I am feeling worse for wear friends. Tired. So very tired.
I know today a big part of it was the 4 hour hospital visit that we had. Neither Simon nor I was enjoying it although Simon perked up for his time with HunkyPants and showed off his magnificent 'pulling up to standing' strength. HunkyPants was duly impressed. However his echo, which is usually a chill ritual was not, blood draws were several pokes in the making, and we had to wait for almost 45 minutes for our post surgery check up (nobody's fault- we were a squeeze in appt to start with- bad idea with a baby, never will I do another squeeze in appt). It was good that we saw Dr Su though since it turns out that Shimmy has a mild infection from the stitches that were placed around the stoma (incision into the belly) site. So, 10 days of anti-biotics, but nothing major and she said it looks relatively good.. Oh wait, did I mention that the anti-biotics need to be given every 6 hours. Every 6 hours around the clock. So we started at 4pm. That means that we're on for 10pm, and 4am, and again at 10am. Um, what was that middle one? Yeah 4am. So on the off chance that Shimmy is not waking up then, we have to wake up and give him meds. Niiice.
It just doesn't end.
Grace.
It looks like the minor strengthening of the ejection and shortening fractions from the last echo were not necessarily reader error. Simon's EJ went from 31% to 36% and his SF went from 14-16% to 18%. Nothing major but a (baby) step in the right direction. I don't really know what it means or how I feel about it. I am a little numb right now from exhaustion (holding Simon while they try and draw blood over and over again may only take 15 minutes total but it feels like a million years slowed down to a crawl). It's a good thing I know but I can't quite take it in. It's kind of like being given a gift of a hundred dollars but you only get one penny a week (or every three when you go see the Cardiologist.) I know we're getting the hundred dollars it just doesn't quite feel like it. It's the slowest Ti Chi exercise ever. I know that grace is moving us along, we are so blessed, but it's hard.
So now we're on to eating, our next big hurdle. By the end of the week Simon will be back to his post surgery rate of 100 cc's and hour (for a 180 cc dose) and we will just continue contracting his feed hoping that we can get the little man hungry and play with food. He's been taking a few squirts from a sippy cup lately in the evenings and it's completely heartening (hah) to watch him taste and swallow.
Slow and steady is key here. So many cardiac babies develop strong oral aversions and I want to approach this next hurdle more like a long suspension bridge. Slow steps, leaning neither too far to the left or right, moving forward not back. I'm a taurus. I can do this. Shoot, it took me months to even get to the point of 'going steady' with Jaime. We can do this.
Generosity
Last and in no way least is a deep thank you. For all the support, all the meals dropped off, all the visits that come to us instead of vice versa, all the reaching out over and over. I don't really have words for the gratitude. I have a humble blush that threatens often to border on shame but it's too good and necessary right now. Plus, I know somewhere deep that Jaime and I have had a good part in building what we're now reaping.
It's here that I need to do a special shout out to the Grandparents. To Mamaw & Pappy E, G'Pa and Grandma, and MM and PopPop... Jaime, Simon and I, have a silent thank you streaming to you non-stop. For all the ways that you have shown up throughout this whole venture. With overnights in the ICU, brownies that always have nuts, songs sung, books read, blankets & bedding bought, naps shared, breaks given, sushi delivered, safe places to let down, skin on skin for the little man, wallets opened, and of course your unrelenting tsunami of love and support for all four of us (Roxie has been right there benefiting along with us bipeds). We are connected now in ways even beyond blood and marriage. It's generational and woven and also spans time. I'm not even sure I can explain it. I only know that our family is incredible and great (not the "superduper" kind of great but the larger than one person, grand canyon, magnificence kind of great. That's how I think of our family.
Thank you.
Love to all
Laura
