Saturday, October 20, 2012

On My Own

But not really on my own because I am in my friend Beth's house with her family...but Mickey and Emily have made it back to SC and they are snug in their beds and I am snug very comfortable but far away bed in PA.
I miss them. A lot. Tomorrow morning we have scheduled a skype session. I have never actually skyped on my own before and always depend on Mickey to set it up and just I have to figure that out tonight. But I look forward to seeing my loves for the first time in 5 days. Emily was really missing Eliot when she was here with us, and kept asking to see photos of her on my phone, so I know she must have been thrilled to be home. I know Eliot was missing me, but it sounds like my Mama's boy, Oliver, has actually done just fine in my absence. Which surprises me a little, but I guess I am grateful.
This morning Mickey and Emily dropped me off at Beth's in Ambler, PA...which is actually a short commute to Philly and a very adorable area. If you know me well, you know I have a great appreciation for all things stone and wood and all of the beautiful stone homes and stone work in this area has excited and intrigued me. I also took my first ever trip to IKEA today...which was almost equally amazing to me. I actually bought Auguste his first gift from us...I saw a very soft orange fox, and when I picked it up it has a baby fox attached. The mother/child fox plush could not be resisted.
We filled up with meatballs and potatoes and ligon berry sauce (the IKEA special for anyone unfamiliar). It was a fun never ending place where one could get lost and had I not been thinking about luggage and budget, I could have easily filled a cart and bought more than the small mother/baby fox plush.
Beth is remodeling, and so we also went to Lowe's and got paint samples and looked at tile....all of which are things right up my alley.
We then rested a bit and filled up on a big pot of chili and corn bread and ...wait for it...sweet tea (because yes, my Beth is a true central FL Southern girl).
Clearly, my re-connection with Beth after nearly 15 years has gone well. I just hope I don't overstay my welcome, and truly hope my stay in Philly will be brief and only periodically.

I am actually quite nervous about what Tuesday holds, and I am just trying to not think too much about it. The last procedure was extremely painful, and the thought of doing that again without Mickey is scary to me. He will say he didn't do much...but his presence in those situations calms me a bit and eases my spirit. I am also nervous about a shunt. I suppose i am nervous about anything that will possibly irritate my uterus into early labor. I know I will do and endure whatever needs to occur, but it is all scary.
My thoughts are that they will possibly decide another thoracentesis, but I am not sure how they will drain the right side since it seems with that procedure they just take fluid from whichever side he presents them with, and therefore have less control of it. This does seem less invasive though. If they do that, I would imagine they would want to see me again before the weekend, and possibly, if the fluid is still gone, allow me to go home.
If they decide to do a shunt procedure, it is more surgical, but same day type surgery. They do dope me up and bit and use local anesthetic, so it would certainly be more tolerable and I am sure that Beth would have fun stories to tell afterward, as did my best bud Jenny when driving me home after my wisdom teeth were removed. I tend to tell people silly things when under "the influence", apparently.
If they do this, they do have more control over Auggie, and me...
I do know that if they do this then they would want me to stay in Philly for a week. Then I would be able to go home (just in time for Halloween), and then I would get checked in Charlotte once a week and only have to return to Philly once a month for re-positioning of shunt etc. This would be ideal in many ways...
I still need t discuss with them options for delivery and make some plans regarding this. I know this is preemptive planning...but I am feeling confident today that Auggie will make it to delivery.
I am feeling like we should possibly plan a delivery in Philly since the doctors here are already invested in him and I know their NICU is one of the best in the country. I think that sounds great if his NICU visit was brief  but certainly an extended stay would make that much harder.  However, either way, a planned delivery will unfortunately not be very close to home, due to Greenville not having ECMO.
We need to be prepared for anything, but who knows...maybe he will come out and be just fine. I have read a few stories similar to that.
I know I am jumping too far ahead, so I will reel myself back and focus on today and only think briefly about Tuesday. Because all of this is theoretical, and are only my best guesses to many of the questions people have been asking.
I am thinking that I will possibly ride the train home from Philly as I have heard the train ride through Virginia is quite nice. I am probably going to recruit Jenny to ride with me...(she is just reading this now and probably thinking..."huh?"). It seems like a potentially fun adventure and since I don't have a car and don't want Mickey driving another 24 hours with all 3 kids, it makes sense.
Again...just thinking theoretically.

Emotionally, I feel good. I sometimes feel the dark thoughts creeping up, and I try very hard to block them from my mind and it seems to me that it is not long after that I feel sweet kicking from the inside, just in time for me to feel reassurance that at least for today, my sweet Auguste is with me. Looking at baby stuff at IKEA today was almost bittersweet, and then I decided, well, maybe I won't buy these nifty sippy cups, but I can buy him a softy to cuddle...and I can plan a little...because I am going to keep my focus on the 10%. AND hope that in the next few days, that 10% may actually turn into the 65% as the fluid continues to improve.
Fortunately, lately on the hydrops page, there have been other stories similar to mine, other people getting shunts and getting more hope, and I truly believe that could be a sign of better things to come for these sweet babies and parents who are fighting along side of us. Maybe they will change the face of this prognosis from grave to hopeful as research continues to be done.

Keep up the faith and keep hoping and praying with us. For me...who Beth is pushing lots of water and making sure I am eating and staying calm, because I certainly don't want to do anything which may raise my blood pressure right now...For my family at home, who are having to make adjustments and definitely have their life altered in a home where Mommy was always present and is now missing, but mostly, please remember our sweet beautiful boy, Auguste. He is so precious and active and I want him to be able to experience life on this beautiful earth where he can fill his pockets with rocks, and pick dandelions, and swing high, and run fast,and feel the hugs of his siblings, and to sleep on Daddy's chest and to curl up next to me. There are so many things I want for him, so many hopes I have for him. Those are only a few of the images that calm me during this storm. But they do feel very real and I know they are very possible. I know we serve a God of miracles and that He has placed me in this position for a reason, although it doesn't make sense to me today.

Sorry or such a long post that jumped everywhere....
good night friends.


1 comment:

  1. Praying for you and Auguste.
    <3 I'm so happy you found a hospital to help.