Mom-of-Marley
TrachKid Profile
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Hi! I'm Marley! I was born at 24 weeks. My mommy's water broke at 18 weeks. I weighed 1 lb 8 oz when I was born and was only about 11.75 inches long! I wasn't supposed to survive, but I did! I am truly a miracle (or so I am told)! Every doctor that has met me (especially when I was first born) has broken down in tears when they meet me and hear my history...or when they see how great I'm doing! I was in the NICU at one hospital for a month, before being transferred to another NICU (where I stayed for 7 months) because I had to have surgery. I was transferred to the IMCU for 4 months after that. We've had some touch and go moments where they didn't think that I was gonna make it through the night, but I proved them wrong! I don't do things like they tell me I should. I don't show typical signs when I get sick...I have to keep all my doctors on their toes! ;-) I have a trach that I got when I was 6 months old. I had to get that
because of all of the traumatic intubations that I've had in the past.
They had to try 13 times to get me intubated a couple times...so that
pretty much destroyed my airway! I also have a g-tube because I refuse
to take a bottle or to eat baby food. It's much easier gettig fed
without having to do the work! I had to have a fundoplication done
because I was throwing up too much. They did that in January, but I
think it came undone because I've been throwing up a lot lately! I hope
I don't have to have another surgery to fix that! I will have to have
my airway reconstructed when I get big enough so that they can take my
trach out! I have to be 10kg though...and right now I am only about
7kg...so I've got a little ways to go! I have a shunt as well because when I was born I had Grade III/IV IVH, which caused hydracephalus. I have had to have multiple revisions because I don't really like having a shunt. I have even gotten it completely out of my brain at one point! Me and my Neurosurgeon are good buddies because he's taken such good care of me! I do have to keep him on his toes though! I finally went home on St. Paddy's Day (March 17th) for the first time, but unfortunately I am back in the hospital because of my shunt. I have had 14 total surgeries - 11 of those brain surgeries. I will have my 15th surgery (12th brain surgery) in 2 weeks to replace my shunt again. (It was infected).I will have my first birthday on April 30th...but unfortunately I have to celebrate it in the hospital! I suppose I missed all my nurses and doctors and RT's! Everyone knows me at the hospital...it's like I'm famous or something! ;-)
History
- Blog
- View recent blog entries
- Member for
- 2 years 43 weeks
Location
- Country
- United States
- State/Province
- Ohio
