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Old 01-31-2013, 07:35 AM   #8
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batsilvermoon
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Formerly:batmomof3
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Join Date: Jan 2009
Location: pa
Posts: 220
Re: Anyone have a child with congenital heart disease?

I can say its been a long hard road with many ups and downs twists and turns... Jaxon has transposition of the great vessels as his main diagnosis but 4 other heart abnormalities as well... at this point ( after 1 st open heart surgery at 10 days then another at 6 months and recent one at 4 yrs old) he is done.. living with only one ventricle... and possibility of transplant in his future... looking back over the past 4 years (sighs) when he was born at chop i had to leave him and come home to take care of my other children it was the hardest thing I ever had to do... only being able to visit him every few days... he spent his first 7 weeks there.. we had feeding issues and weight gain issues and his lil heart would give out from time to time.. I remember watching other moms who could hold there babies while I could only hold jaxons hand...I longed to nurse him instead of pump ... I held him for the first time the day of his first surgery at 10 days old and only for a brief moment, then handed him over not knowing if id ever hold him again....he came out of surgery and I again was unable to do no more than touch his tiny hand.. weeks went buy calls in the middle of the night saying jaxon flat lined but hes stable now were oh to often... and as I visited and grew to know other families there and watching them hold there babies and take them home days went on and on... I remember being jelouse that jaxon couldnt have the switch operation and be "normal" like most the other babies... Due to how deformed and his other conditions he needed the fontane repair which allows him to live with one ventricle.... limits him a little and life expectancy is late teens to 20s... I take these numbers to heart but yet I look back and know I made the right choice and any time with this amazing child was worth all we have been through and all we will go through... We were at chop yesterday for a check up and all is well drs are amazed at how well hes doing and how well his heart took to the surgery.. he is no longer blue in color and his o2 stats are no longer 70 now they are 92 When I get a chance I will upload pics of all 3 surgeries and his progress if anything mommas know thier is hope and dont give up I know its frustrating... never once did I ask why him why our family I just asked ok.. what do we need to do for jaxon! I prayed to the gods to have mercy on him and give us the strength to handle all that comes our way.... jaxon is my hero he taught my family many things... and he continues to touch the hearts of all who meet him... have hope and faith if not in a god in your childs will to live.... also a tip.. if your newborn or infant must go through a long hospital stay for what ever reason use a lovey keep it in yur shirt for a few days.. and then with baby at the hospital they truly will know your scent then...jaxon would look at me like just another stranger for a while but when I was able to bring him home and nurse him we bonded quickly .. his nic name now is lover boy
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