So that was the pregnancy. Lucia was born a full term baby at 5 lbs and 8oz. (quite tiny!), and we spent 2 weeks at the hospital, most of time with her being in the NICU. As I've previously written, that's when we were given the T-18 diagnosis -- moments that I still don't like to recall (probably never will). Not only this, Lucia had complex heart disease as well as feeding diffuculties that required a feeding tube to be placed through her nose. We baptized her (well, not me obviously...my husband did that ;) ) in a little room offered to us by the hospital, and Lulu was surrounded by people that love her --her older cousins, her aunts, uncles, grandparents and her very special godparents, Fr. James and Gigi Shadid....I'm such a name-dropper ;) .
Doctors gave us very little hope in terms of her survival -- in fact, the genetics doctor told us she had only weeks to live. We were sent home with hospice care to basically wait for our child to go to heaven. We believed every word they said (because, honestly, that's how we are all brought up -- to take every word from a doctor as fact) and had no hope...in the midst of tragedy, we seemed to forget that the doctors were not God, and that Lucia's life was ultimately in His hands.
A month and a half after she was born, we were surfing the net and came across some families that had children with Trisomy 18 -- our burning question to each family was, "how long did he/she live?" ...probably insensitive at the time. We were *shocked*, to say the least, when we discovered that some of these children were STILL living well into their teenaged years. Talk about a blow in the face -- here we are sitting around for a morbid event to take place, when it could be months, even years. Time had taken a stand still for me...I mean, I never wanted Lucia to leave my sight, not for a second. Every morning I would wake up and jump up to make sure she was still breathing. Actually, in the back of my mind, that fear is always there...and I don't think it will ever leave.
On her 1st month Birthday, with her NG feeding tube in place. Isn't she a beauty?
At 2 months, she graduated into a car seat (she was previously in a car bed, if you've ever heard of that). There are days though when she still has alot of difficulty in the car seat, not in this picture of course -- here she is peacefully sleeping.