Home for a while now and finally things are starting to feel more real than life in the hospital. We've had a bevy of visitors showing up with incredible gifts and of course I don't just mean of the material nature. We've got a new street stroller (versus the off-roading one from G'Pa Bruce and Grandma Nola) that we've already been cruising the neighborhood in. Some great new bath toys (See photos- how many boys that age can say they've bathed with so many beauties that aren't their mothers?!). A well stocked fridge with delicious easy food for us to make. And wonderful people galore stopping by to keep me company during the day.
That's Auntie Dre in the bath with Shimmy
That would be Carol
And this would be Auntie Abby out for a hike with the Shimster (after her bath with him)
Shimmy and Jaime are in the bath right now (the boy does love his baths) and I'm taking a moment to add my two cents to the blog. I wish I would write more but it seems like the times where Simon and I are home together and there's a bit of down time for me are more about laundry, dishes, maybe a nap, or simply catching up on emails.
Things have been working themselves out in terms of a rhythm to our days Monday through Friday and Jaime and I are working on the weekends where there's not too much disruption but certainly a shift for Shimmy so that Jaime gets as much face time as possible.
Simon seems in good spirits and mostly stable health. We're still working on figuring out how to keep as much formula in him as possible for weight gain. The pukes are still a-plenty and this coming Tuesday we have a cardiology appointment where we'll have another conversation with HunkyPants about switching over from the NG tube to a more permanent G-tube for Simon. A G-tube is surgically placed and essentially is a direct line through the abdomen to the stomach for enteral feedings. A small plastic plug lies on top of the skin with a port in it to attach the line from the pump.
This would mean that Shimmy would no longer be a noodle nose boy (Hello Supermodel) but more importantly he wouldn't have a tube going up his nose and down his throat. Some parents on our support list serve said that just for fun (hah) they tried to put an NG tube in themselves to see how it felt and they understood immediately why kids with NG tubes are even less likely to want to take anything by mouth. Derr.
The only downside is that it is a surgical procedure and Simon would be completely sedated and there are always risks with that. Once the Gtube is in though the risk of infection is minimal and he can do just about anything he would otherwise (baths, tummytime, etc).
Jaime and I have been doing our homework about it in the last couple of weeks and I think we're feeling fairly pro G-tube at this point. Quality of life. As for Simon, he's growing, making new sounds, practicing his razzberry, and working the "ole Blue Eyes" magic every where he possibly can. He's becoming a fabulous napper and get-himself-to-sleeper. A delicious snuggler. And an all around magical boy who delights and amazes most folk that come in contact with him.
As for me. Jaime's posts speak for me as well. This is fucking hard. I'm still uncovering what it means to be home with Simon, to be his primary caretaker, to struggle with the bandwidth involved in doing all of this, how to share it, how to care for myself, be in relationship to Jaime, co-parent with Jaime (and those are different), enjoy each moment, find time to eat, grieve the loss of my job, stay in contact with friends, get enough sleep, let people help, ask people not to visit sometimes, manage bills, apply for disability insurance, work a homophobic/heterosexist system that chooses when it will and won't recognize us as a family, miss going to the movies, eating out, and other things that I'm not even aware of missing but will more than likely come up sometime soon.
It's such a mixed bag. Simon and this whole experience, have, of course reaffirmed that deep learning about celebrating each moment including the unbearably hard ones (what, because I didn't quite get it before with the motorcycle and horse accident?), embrace the people that love you and let them embrace you, and just slow down and feel the blessings. Oh yeah, and the blah blah blah lesson of sometimes just being in the shit and not letting anybody talk you out of it until you're ready.
Yesterday a sweet friend from long ago visited and got to meet the Shimster and hang out some while he napped. She was catching me up on her life (mine's on the Internet) and I was loving hearing how she's moved full time into the life of a farmer. Forgive the pun but it sounded like a wonderful and organic experience. She spends most of her time figuring out how to nurture and harvest, doing the former so she can have the latter be as great as possible.
I feel like I am doing that with Simon too. Spending this time nurturing my little seedling during this very fragile time in his growth, hopefully to have a strong and bountiful future. His roots are not yet sunk that deep and any big change in his environment could be too much.
I just want him to grow strong, like any farmer wants their planted seeds. Simon is just requiring a lot more attention and diligence during this early growth period.
Maybe he'll be like the cantaloupe that we never thought would grow in our backyard beds but was discovered one day not only to have spread across the lawn but fruited several delish large cantaloupes (as evidenced by the Roxie photo).
Ok enough. I'm off to eat donuts and watch Angelina Jolie kick butt with my wife on the couch whilst the little man slumbers.
Love to all and thanks for keeping up.