WARNING: Due to the graphic nature of an upset mother, viewer's discretion is advised :)
Calvin has been in the NICU for almost 4 weeks now, and I am to the point where I am not only super frustrated but Dang it I miss my baby. And at this point he may not be home for another 10 days, and the explanation I got didn't exactly make me happy.
But first off, lets start from the beginning. He has been diagnosed with Pier Robins Sequence. And all the information I will be providing you with is from the packets I received from the NICU. PRS is a condition of facial difference characterized by severe underdevelopment of the lower jaaw (retrognathia), a downward or backward-positioned tongue (glossoptosis), respiratory obstruction, and usually a cleft palate, an opening in the roof of the mouth. Normally, between 9-11 weeks of gestation, the tongue moves down and away from the roof of the mouth. But in PRS the small lower jaw keeps the tongue positioned higher in the mouth than normal, interfering with the normal closure of the palate. Causing his U shaped cleft. Also because he and his sister was so squished in their bags, that is what caused him to have PRS. Multiple pregnancy has a higher risk of this, so his sister sat on his face a little long and well its not really her fault just a little joke..... yes I know its not funny.
So Friday he had surgery. They did a tongue-lip adhesion, which is a procedure that temporarily sutures the tip of the tongue to the inside of the lower lip thereby pulling the tongue forward and out of the back of the throat. And WOW it made a huge difference with Calvin. His jaw looks normal now. He is just so dang handsome regardless of a small jaw or not.
Then he also had a G tube put in.
So the plan was he was to be ventilated (breathing tube) put in for 3 days after surgery. Well it was suppose to be taken out yesterday and do you think that happened.... NOOO. Which is fine, its good to safe then sorry. But it pisses me off because they are always going to be safe and not going to try and wean him off of it? OVER MY FREAKING DEAD BODY. Another thing, It was I think Wednesday last week Justin and I walked into the NICU and walked towards where Calvin was supposed to be and he wasn't there.... I panicked and asked a nearby nurse where my baby was, and she stared at me like I was stupid and said uh well he got moved into a personal room...... points to it and we walk in and noticed he had an isolation sign up and a contact caution sign. We walk in there because I needed to see him. His nurse comes rushing in saying we needed to put gloves and gowns on because he has VRE. Vancomycin-resistan Enterococci: Enteroccocci are bacteria that are normally present in the himan intestines and are often found in the environment. These bacteria can sometimes cause infections. Vancomycin is an antibiotic that is used to treat some drug-resistant infections caused by enterococci. so in English it means it is a hospital grown infection and his body is resistant against Vancomcycin. Do you think a nurse called me and told me? NOOO I NEVER GOT A FREAKING CALL.
and now they are telling me that Calvin won't be able to come home for probably 10 days if not longer, because they want to do everything slower than molasses. Which is fine, BUT I am a little pist off because apparently the nursing staff doesn't think its important to call me and keep me informed. and yes don't worry I call throughout the day and yet they still think its ok to keep me in the dark about MY OWN SON. Tomorrow when I go in to visit OH lordy someone better have some serious explanations for me or I will lose it.
I have every right to be upset and I could care less what anyone has to say about this. try and put yourself in my shoes. I can barely touch my son let alone hold him on rare occassions. He will be over a month old before he gets to come home, if he ever does at this point. I have to leave my son at the hospital every night and hope that his nurse will love on him for atleast a few minutes. I can't even be a mom to my son, I can't comfort him like most parents can comfort their babies. He has wires and tubes connected everywhere...................... I just don't have the heart for this anymore. I just want to hold my son and tell him its going to be ok and I can't do that.
World's worst mother award should just go to me. I feel like the doctors aren't listening to me and just playing games.
And that is my vent blog post for ya. :)
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