Where do I even begin! Violet has been home for around 2 1/2 months now and we have had our ups and downs but life is good....so very good! Every morning I get the honor of waking up to a baby that smiles and coos and shows the utmost love in her eyes. I am blessed!
I guess everyone thinks our lives are completely different than a typical family and I guess in some ways we are very different...but there are so very many ways we are just like everyone else. Let me walk you through our day.
We wake up each and every morning at the latest 6:45. Violet finds this amusing because mommy is NOT a morning person and she completely is. I am woke to the sound of chit chatting from her crib. She has a party every morning with her big stuffed zebra, her monkey, her rabbit blanket and her Dumbo. I pick her up and she gives me the biggest gummy smile you can imagine. She does her "lovey eyes" as I call them. When she grins so big she can't keep her eyes all the way open. Ah it just melts my heart! Her laugh is absolutely infectious! The sweetest melody my ears have ever heard!
After meds it's time to make some formula up to replenish her feeding bag for her gtube. I make 4 hours worth at a time during the day and the pump delivers it to her at 38 mls an hour. The pump comes with a back pack that you can put the feeding bag and pump in to so you can move around the house and where ever else you need to go. So I pack up the back pack because we are constantly moving around the house. We come in to the living room to watch some Signing Times, Dumbo or Strawberry Shortcake while mommy gets things situated for the day.
The Lasix has already started kicking in at this point so there are a few teetee diapers to change. We play with her paci and work on her sucking skills. Every other diaper change we work on neck strengthening exercises where she is laying flat and I hold her around her arm area and pull her to a sitting position. This makes her use the muscles in her neck to lift her head and just with a week of doing this she has made a HUGE improvement.
After nap time we usually hit the road to do some shopping or visit friends and family...it's a hard life but someone has to do it :) She's a star wherever she goes. Whether it's the Drs office or Wal Mart we can't go anywhere without people stopping us to ohh and ahh over her. She is such a little Diva! (but mommy loves every minute of it)
Car rides are her favorite! She usually falls asleep before we are out of the neighborhood. We go do our grocery shopping, appointments and visiting and then head home for the day. We change the feeding bag every night and give the night time round of meds which is trileptal, phenobarbital, zantac and tummy drops.
then it's time for the rocking chair. Within minutes she is sound asleep. Usually with her face nuzzled up in to your neck and her hand resting against your cheek. The glow of the nightlight as the only source of light and the wonderful sounds of Enya playing on the radio. During that time I reflect on my life. Yes, we have a lot of hard times, but it just makes those good times that much more special.
My daughter is perfect. Every single extra copy of the 21st chromosome is perfect. She is my heart and the reason I wake up every morning and I could not even begin to imagine my life with out her. No this isn't the life I pictured for myself when I was growing up...then again that "other" life had me married to Brad Pitt and I was a super model....guess we can't have it all LOL.
So welcome to my life, we are more alike than different! As one of my other friends says...it's a perfectly imperfect life!