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    Posted June 17, 2014 by
    8n1
    Location
    alameda, California
    Assignment
    Assignment
    This iReport is part of an assignment:
    Raising a special needs child

    Miracle in Action

     
    Ani Luana Parizal was born at 26 weeks gestation. Entering the world at 720kg (1pound 9ounces), in berkley CA. on Feb.14,2013. She was delivered per C-section, and was assessed and taken immdently to the NICU. She initially was breathing on her own but as night fell, I was updated that she had to be intimated, to help her breath easier. It all happened so fast as a mother, I was concerned but so uninformed about Preemie babies, i couldn't fully process everything that was happening. Soon after birth she required a common heart surgery called a PDA ligation. Which was quite frighting, but went successful. Ani's dad and I had been warned by doctors that, her journey home would be a up and down roller coaster, one step forward followed by two steps back. We had no idea what to expect. All we could do was Pray. A short while after her heart procedure, her tiny belly was descended and all the test to find out what was the cause was unsuccessful. She was then transferred to CHO(Childrens Hospital Oakland) to resolve the belly concern. Upon arrival, we were informed surgery was necessary. She ended up have multiply surgeries on her intestines, in which they had to remove more and more intestine,ultimately leaving her with a condition called Short Bowel Syndrome (SBS). She was finally stable enough to come home Nov of 2013. Ani home coming was not that of her older brother who was born full term. Ani came home with a broviac that had 2 IV pumps infusing TPN and a special Lipid called Omegavan in to her 20hrs a day. This Broviac line is her life line with out it she would not survive. Since the section of intestines were most of our nutrition is absorbed is gone, this is how she gets her nutrition. She also came home with a feeding pump and G-tube connected to her belly. Along with a Detailed plan of care from the doctors. She requires home nurse to care for her IV needs and medication . Its different with a special needs child, you become so emmuresed in the health care world and the condition of your child when you are around the "normal" parents with "normal" kids, your like ummm thats "weird" lol. One thing that i just love to see is children eating. See Ani doesnt eat meals, she has recreation eating therapy in hopes to keep her from having food aversion which is a typical condition kids with feeding tubes get. She struggled with that for a while but we are now gaining ground. With each milestone such as sitting up for instance took Ani way long to reach due to such a long hospital stay, we see it as a miracle. For it she Ani truly is, her chances to live was not 100% and to know to be told by doctors and nurse that She will have to FIGHT to go home, left me personally shaken. like a movie clip i played the moment i found out i was expecting, the plans i had for her nursery never in that clip was there a doubt that i may not bring my baby home and never did i think i would be a parent of a special needs child.I had to seriously seek GOD in what was going on. I remember feeling guilty like i did something ate something that caused Ani to have to suffer the trails she was in. Questions would lead to more questions...even now i have questions..but you see Short Gutt is still kida of new in a way, its not like cancer were you have it they treat with radiation and chemo and it goes into remission. short gutt is treated individually every case is different, you see what has worked for most and try it. The future for Ani as far as her condition is we strive to increase the volume of tube feeding and decrease her IV infusion. to ultimately be 100% entrial feed and dependent. and once we do that we work on getting her to receive bulos feeds which are like interal feeds. It will be a long slow process. With Ani even in her motor skills she takes baby steps. I learn from her so much. When you slow down and take each moment of growth at a segment at a time you are truly LIVinG. You are embracing the moments of growth. Each time she has her PT and is taught a new leg rotation or transition move I witness the miracle of life. There are so many segments to just roll over but i would have never known had i not had Ani. Is it hard Of course, Is it overwhelming Yes. the whole month of March we had an appointment except for 3 weekdays. follow up here, test there, ER visits...do i wish Ani was born like her brother full term and health as an ox? NO! I wouldn't know how to trust God for the MOMent, I wouldn't know how to excersise Faith, I wouldn't know what a beautiful dance life is with out my Miracle in Action....ANI!

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