I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Thursday, February 9, 2012

CHD Awareness Week--Faces of CHD: Hunter's Story


Hunter was born November 26th, 2006    
By emergency c section due to his heart rate dropping dramatically. We did know by 3 d ultrasounds that he'd have a heart condition and cleft lip and palate so everything about his birth scared me to pieces.  
They immediately took him from me didnt even have a chance to see him till 5 hours later after he was intubated and placed in a incubator when they brought him in I could barely touch his tiny hand.  He wasn't a preemie, but he was so much smaller then my other children he weighed in at 6lbs 10 oz, I felt helpless seeing him like that and not being able to wrap my arms around him.  He was rushed to children's hospital central California n.I.c.u unit.  Since I just had the c section I couldn't go with him so my mom did since his dad wasn't in the picture.  At 3 days old they performed the grueling 12 hour open heart surgery that saved my little mans life.  Hunter was born with digeorge syndrome Aka Q.22 deletion and his heart condition associated with that is tetralogy of fallot with absent pulmonary valve syndrome.  The main large artery was so enlarged that it caused his left lung not to be able to grow and develop completely causing him to have chronic lung disease as well. And the pulmonary valve that was missing they replaced it with a cow vein.  

Hunter recovered from the heart surgery and spent the next few months in the pediatric I.c.u at the children's hospital.  At 2 months old they tried to extubate him ( remove breathing tube and take off the ventilator) but no success.  They had to place in a tracheostomy.  Being he also had the cleft lip and cleft pallet there were many feeding issues during this whole time they previously had In a n-j feeding tube down his nose but since it would be awhile longer before any surgeries would be done to repair his clefts he had yet another surgery to place in a Mickey button (g-tube) enternal feeding tube in his tummy that is still the main source of his nutrition today.  Hunter is 5 years old now, it's hard to believe we spent the first 6 1/2 months of his life in the hospital.  Year to date he has had a total of 14 surgeries including all the repairs on his clefts and he was also decanulated ( tracheostomy removed) when he was 3 years old.  Looking at him today you wouldn't notice anything was wrong just that he's on the smaller side unless he didn't have a shirt on.  He will always bare those scars but I hope he bears them with pride for he is a CHD warrior.  
He will eventually have to have more surgeries, when his heart out grows that cow vein they'll have to replace it with a bigger one.  For now he has echos once a year to check progress.  He is such a strong willed little man that I am so proud of. People really take they're healthy kids for granted they don't understand what we go through.  He has such a low immune system a little cold can turn into full blown pneumonia which he just over came once again.  The children's hospital is the greatest place it's our second home. What we have gone through and what we have seen while on this journey I am thankful for it has made us stronger.
Story by Becky Washburn proud CHD mommy 


2 comments:

  1. God your blog is adorable :) Thanks for following mine :) you're the first.. I love you girl <3

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    1. thanks Joanna!! I did it all =] I'm in love with the background ♥

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