So....we made it out of town, out of Virginia. I tend to take a long time to leave the house - I under estimate what I need to do and how long it will take. So, we did get a late start...and we did hit quite a bit of traffic on the D.C. beltway even as we thought we were late enough to miss the rush hour. But, we made it here and Lillian was a great little traveler.
My mom and dad had already arrived here and they welcomed us into our new, temporary -home. It's a furnished little two-bedroom on Antique Row in Center City. It has pretty much everything we need and I actually enjoy walking to buy grocery's and such. Everyone in Philadelphia is so friendly too. I love this warm weather too.
The only detail that has me concerned this weekend, is that Lillian for the first time ever, woke last night saying she was "scared" and I invited her to come sleep next to me and she actually took me up on it. She's had what I would call nightmares before, but always just went right back to sleep... My heart breaks to know I will not be here for her in the near future as she will stay with Grammy and Aunt Becca here at the apartment and Myers and I will call the Ronald McDonald house home so we can be nearest to Gwen.
Lillian adores Grammy - in fact, she will "cook" for Grammy and not for me when Grammy is around. Aunt Becca is also ton's of fun for Lillian. So, that's good...but even so it will be difficult for Lillian to not have me around that much...it's hard to just accept that Lillian will have to deal with the situation and there is not much I can do. Lil is so happy, so sweet-natured and always seems to go with the flow very, very well - but I fear this will challenge all that so, so much. It is hard. Tonight, as I type this, she is having trouble going to sleep - talking about "creatures" coming in and scaring her; but she wasn't really all that freaked out and so I just sang to her and she did go to sleep eventually. But this is all out of the blue, she's never been like this before.
So, tomorrow (Monday) will be another long day of appointments and doctors. They will set a date for the amnio to check her lungs. By the end of tomorrow we'll know when this next step will take place. After the amnio we'll know when we will be welcoming Gwen into the world.
I don't know if I'll meet any of the surgeons tomorrow - somehow or another we are supposed to choose one. We will "tour" all the hospital units that will be part of our experience. We will talk with researchers apparently too, about what I have no idea. I don't expect to have any new light shed on her condition, but they will do an ultrasound and an echo-cardiogram of her heart - please be praying that she is growing well, that her valve and general heart function has not changed any in the last month, and that we will have wisdom in selecting a surgeon.
Thank you to each person who has sent me notes of care and support, for the other "heart moms" out there who've shared their story and are walking with me, and for all the prayers that are holding us up, but especially holding up Gwenytyh - she has come a long way!
Yes. I'm just letting music and lyrics (that don't honestly relate based on what the writer was probably thinking) but, they relate ...
May 14th post... I found this in my drafts. I guess I intended to sit on it and edit it or wait and see about posting it...anyway, I'm p...
The nurses decorate Gwenyth's bed. We found this after the first night. Last night around midnight we got to hold Gwen for about an h...