Help For Precious Hannah Grace

Little Hannah Grace was born 3lbs 12oz. Afflicated with Down Syndrome and Tetralogy of Fallot (a combination of very serious and sometimes fatal heart conditions). Also, a blood clot in her ankle that could potentially lead to the loss of her foot. She is currently being treated in the NICU at Florida Hospital in Orlando FL. We are her mother and father. We live an hour away from the hospital in Titusville FL and have three other young children we must attend to daily. Her mother is legally blind and I the father must handle all of the transportation. Neither one of us can work right now, although I am a graduate student at UCF. Just the cost in gas alone to get to and from the hospital is $15 to $20 daily. We are quickly running out of funds. Plus, our home is in dire need of repair due to hurricane damage over the last two years. Granted our precious miracle baby makes it out of the hospital, she will need continuous care for however long her special little life lasts. Any donations will help us care for our family in this time of crisis. Please at least help us spread Hannah's story and thanks for taking the time to read it. Love always, her mom, dad, sister and brothers. God bless. Update as of 9/14/18 Lil miss Hannah has been moved to the picu (pediatric intensive care unit), Mommy and Daddy were with her during the move. They moved her just so they can have her under their care to watch her from now till surgery time, should be getting her first surgery in another week or two. She had her eyes open after we got to the new room and she knew mom and dad were there with her all the way ... She held our fingers and just kept staring at us both. Her feeds went up again today (I believe we r up to 28ml now) they took her off the blood thinner and the tpn as well. looks like at least another month before we can bring her home, at that point she will see her cardiologist weekly as long as she doesn't need the full repair this first surgery then they will do the full repair between 3-5 months of age. Very very blessed to have this lil girl call me Mommy one day.. our Lil princess is a fighter and she's showing it for sure ... Update added on 10/18/18 So Heather and I understand that many of our family and friends are interested in the outcome of little Hannah’s heart repair surgery yesterday. Just like when we got the original diagnosis of down syndrome and Tetralogy of Fallot back when she was pregnant, we needed some time to absorb the reality ourselves and gather all of the information from physicians before alerting the public. The fact is, unfortunately, Hannah’s surgery went severely and almost fatally awry. We kissed her goodbye at around 7:30am and for an operation that was supposed to take only 4 to 5 hours, her doctor did not emerge until almost 6 in the evening and we couldn’t see her until like 10. Initially, we were excited to hear that her surgeon was confident he could patch her pulmonary valve without having to use a conduit. However, he was unsuccessful in his attempt. Hannah received organ donor tissue that will have to be replaced every 6 months to 3 years each time it’s exchanged for the rest of her life. Most detrimentally, her pulmonary artery was obstructed during the operation which caused her lungs to hemorrhage internally. Hannah survives now only by the support of an ECMO machine that drives her pulmonary system for her. Basically, she’s on life support. If she can’t come off of the machine by 5 days her chances of survival will dramatically start to decrease. The scene is grotesque as they were not able to close her chest due the swelling. She’s covered in tubes, wires and iv’s. It’s difficult for Heather and I to see her in this condition. Although, we know we have to be strong for her and will remain by her side. If you’ve been praying for Hannah Grace, now is the time when she needs you the most. Sorry for the bad news. Like always, we look to The Bible for inspiration and enlightenment- “Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.” (Romans 5:3-5). 10/28/2018 Update: Hannah has been doing alright they finally were able to take her off the ECMO machine on 10/25/18. She's still very sadaited but she's fighting that as well and wakes up fully so they have to give her more meds. They are hoping to be able to close her chest some time this week as long as they can get more fluids to go away! They have started her feeds 1cc over an hour time (really getting nothing ) but to see how she does with the feeds. They are still working on getting her lung to clear up as it's either got fluids or it's collapsed. Poor baby has faught left and right and still fighting every day. We can't wait to be able to hold her again and her to be able to stay awake as she wants to.Thank you everyone that's still praying for our precious little girl.. Hannah has definitely shown shes a very tough little girl .. We are very blessed to be her parents!! Thank you all again. 11-6-2018 Hannah went to Heaven on 11-2-2018! We are now saving money up for a head stone for little Hannah Grace. Thank you to everyone that has been praying for our pretty princess and following her journey. We thank everyone for the prayer and donations! We are raising money for Hannah's Headstone (marker).. Thank you everyone for everything.