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mandymorena

Axel my cherub

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mandymorena
, 09-06-2011 at 07:21 PM (1644 Views)
Before my second son Axel was born I had never heard of Congenital Diaphragmatic Hernia. Shoot, when I went to google those awful words I didn't even spell them right. What could it be? What did I do? Why was my son born with that? Was he going to live?
But after 4 months in the NICU with the great doctors and even the more Awesome Nurses, on ECMO 6 days(day 2 - day 7), hernia repair at 3 days old, open heart surgery at 3 and a half months old, and finally g-tube placement right before 4 months, He's a Healthy Happy Baby. He's still behind on gross motor, speech, and oral feeds. None of that matter He SURVIVED something we were bot prepared for. I thank GOD everyday for Axel's amazing strength. He has shown me what true patience and sacrifice is. It was a hard journey my whole family took with him but we all came out stronger and more united on the other side. For those who feel it might be too much, remember GOD ONLY GIVES YOU WHAT YOU CAN HANDLE. I'm happy to say in less than 2 weeks Axel will be 9 months old. Take care everyone and GOD BLESS
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Comments

  1. JadeHunt's Avatar
    Mandy,

    Thank your lucky stars and always be grateful... for everything!

    Jade
  2. juliedobbs's Avatar
    Hey, I just read your post because I wanted to check out your story. How is your little one doing now? What is the status?
    Doyou mind me asking what issues he had at birth, and defects? I am so glad that I dont think he is going to need heart surgery and all, but we really won't know what is happenign until he is here and born. His lungs are underdeveloped we know that. Can you write me a private email if you feel comfortable and tell me your story?I just woudl love to hear from the beginning how you heard, at when did you hear he had CDH and all. I am very curious as I can't find any other blogs with your story. I might be looking in the wrong place. Its good to hear that after everything he went through even being on ECMO and all that he is doing so good and so healthy. 50% of these babies don't even make it to birth so when I hear a good story like yours I know that all things are possible. Thanks so much Mandy. Take care.
    Julie
  3. mandymorena's Avatar
    Sorry it took a while to get back. No i don't mind sharing my son's story on here. When he was born he was diagnosed with Congenital heart disease, specificlly TOF and VSD. Both holes were repaired when he was 3 and a half months old. Also his Congenital Diaphragmatic Hernia on the right side., also PPHN and Low muscle mass. I had no idea my son was going to be born with any of this. No one saw anything in the ultasound and I had 3. as soon as he was born he was wisked away to TCH and stablized but by the next day he need ecmo and was put on it. He stayed on ecmo 6 days. on his second day on ecmo he had his hernia repaired. apart from the heart ecmo and hernia he had a number of other ailments that were resolved quickly. One thing you learn it that NICU time is nothing like real time. they try a med and if in a day it hasn't changed anything they try something else.my son's right lung was one 6th the size of his left lung. he does pull a bit when he breathes but he sats good. 98 99 100. he was in the nicu 4 months and this octiber 14 he will be 10 months old. we just left the hospital again yesterday,, he was in there a week with RSV. no he's home and doing good just a few more days of meds and rest. i was lucky to meet other mother at the hospital all going thru the same thing. i thought i was the only one. i had never heard of CDH before. now i read all i can about it. i'm here you can ask me anything. GOD has chosen us to be the mothers of GREAT FIGHTERS, and spread the word about the awful disease. Take care hun and stay healthy.