My Miracle daughter!

Almost one year post surgery!!!

Wow, what a ride we have been on! Trinity Faith is 16 months going strong! Sorry i have been slacking really bad on posting! Words cannot express how blessed i am to be the mother of such a beautiful, smart, amazing, MIRACLE of a daughter..GOD IS GOOD! Here is a poem i would like to share.....

You passed me in the shopping mall.....You read my faded tee....You tapped me on the shoulder and then asked what was CHD? I could quote terminology....There are stats that i could give....But i would rather share with you...A mothers perspective....What is it like to have a child with CHD?
It's Lasix, Reglan, Prilosec, and Captopril...
It's wondering Lord what's your will?
It's monitors and oxygen tanks...
It's a constant reminder to always give thanks....
It's feeding time through her tube,calories, needed weight gain...
It's the drama of eating and yes it's insane....
It's the first time i held her....I waited soo long...
It's making a hospital home for a while...
It's seeing my reward in every smile...
It's checking her stats as the monitors are beeping....
It's knowing that there is just no time for sleeping...
It's cath's, x-rays, and boo boos to kiss...
It's normalcy i sometimes miss...
It's asking do her lips look blue?
It's cringing inside of what she's been through...
It's dozen of calls to her pediatrition... He knows me by name, I'm a mom on a mission...
It's winters home bound and hand sanitizer....
It's knowing this journey has made me much wiser...
It's watching her sleeping, her breathing is steady...
It's her surgery day, and ill never be ready...
It's handing her over, and im still not prepared...
It's knowing that her heart must be repaired...
It's waiting for news on that long stressful day....
It's praying and hoping that she will be okay...
It's the wonderful friends with whom i've connected...
It's the bond that we sare, it was so unexpected...
It's that LONG faded scar down my daughters small chest...
It's touching it gentlya dn knowing we are BLESSED...
It's watching her chase a small butterfly, it's this moment i realized i've stopped asking why?

We planned on attending the Heart Walk today in the city, but decided it wasn't in the best interest for Trinity.. It has been cold and rainy all day, and i do not need her getting sick! We are finally do with her Synagis Shots until next RSV season. I love getting to spend everyday at home with her. It has gone by sooo fast...

GOING HOME TOMORROW

We were told this morning that we get to go home tomorrow! I am excited but terrified at the same time. I am really concerned still about her heart. The surgeon said he thought he got everything "fixed" but by looking at the echo her valve is still leaking. UGH! The docs say it's not abig deal, but with what Trinity has been through already 2 surgeries in 12 hours, i would expect it to be fixed! Yeah right.. I know he is only human. She is recovering great.And as happy as ever. Her heart rate is still pretty low when she sleeps. I am having to teach her how to suck again and that is very frustrating for me and her! She was on the feeding tube for8 weeks and would NOT take a passy, so.. we are going home with the feeding tube until she learns again, but her it is almost time for solids. She is also going to be on some blood pressure medicine, so they heart won't have to work as hard, they said they do not want that leak ripping. We had a nurse the other day and she had the nerve to pick her up under the arms!! I freaked and told her never to do that again! She is done with her morphine withdrawls so i am very happy about that, it was really hard seeing my 5 month old having to go through that. HUGS!