HAPPY DUE DATE BIRTHDAY DEECON...XOXO Jan 22nd is here, and it is our due date:) I can't believe it is here. At the begining they told me that by this day I would be getting to go home but now that it is here I know that we have some more time in the hospital still. And with the ups and downs of the NICU train, I only want to go home when he is absolutely ready..Wow Deecon 
has grown so much in the past month. January was a month of getting bigger and stronger for him. He is now 8 pounds and 11oz.. :) He has also been increasing his bottle feeds sometimes bottle feeding 3 or 4 times a day, but we have been noticing a strong stridor sound as he breaths which has become concerning. The doctors have stated that it was not effecting his oxygen level so they were not concerned at first but as January ends Deecon is struggling with his oxygenation and has been turning dusky colours and needs frequent increase in his oxygen. It now is a major concern. He was acting so out of character one night with desaturating that the nurse called for a emergency lung scan to see if there was fluid on his lungs again. The results were puzzling because his lungs still showed major lung disease but looked the best they have looked to date. His spells just got scarier from there. He had been changing colours lately, going dusky and then blue. One night when feeding him, his first suck on his bottle and he went limp, turned blue really quick and wouldn't respond. I panicked as you can imagine... my nurse helped me sit him up and started to rub and pat his back to try and get him to breath.. this didn't work next we layed him on his bed. His heart rate decreased and stayed low, this again was a Bradycardia.. he hadn't had one of those in a month, and it wasn't normal for Deecon to Brady and not bring his heart rate up with stimulation. He desatted with the Brady so my nurse put the green oxygen mask on him to try and help.. After five minutes Deecon finally brought his heart rate back up. My nurse was so scared that he might have possibly aspirated his
milk into his lungs that we paged a doctor to have a thorough look and listen to Deecon.. Wow this was a very scary moment. He did recover well after 10 minutes he was back saturating in the 90's. The next week brought more scary blue spells, accompanied by a stronger stridor breathing.. An ENT (ears, nose and throat) specialist was called in to scope Deecon's throat. I wanted to be there so the doctor allowed me to hold Deecon as he scoped his throat. Deecon did not like the scope at first, but after rubbing his head and talking to him he, and of course some sucrose water allowed me to get him calm and almost sleeping. It was funny cause the doctor at one point in time said he was too quiet and that he needed to hear him coo or cry, so since he hated his blood pressure taken I held his arm out straight like they do for that.. He let off a soft sound and went back to sleep. Before they took the scope out of his nose I asked the doctor to take a peek so I was able to see in Deecon's throat. What we were looking at the ENT specialist explained was that Deecon had a paralyzed vocal cord. His left vocal cord did not have moment as his right did, therefore creating the stridor sounds as it collapses as he breaths. This gets worse as Deecon has seemed to be having increased problems with his acid
reflux. The more fluid he drinks, which he needs cause he is bigger the more he reluxes and irritates his vocal cord and box, which creates the louder stridor sound. The specialist said that he does not usually do surgery on one vocal cord so we would have to give it time and see if Deecon can strengthen it and grow out of it. He explained that the vocal cord must have been nicked in his Pda heart surgery. :( It was a sad reality... and as he is explaining it I realize that Deecon does sound a little raspy when crying which he says is another sign of a paralyzed vocal cord. So we can only hope that he will grow out of it and be able to talk perfectly... only time will tell... Deecon is a miracle baby through and through, so there is nothing he can't beat... His eyes are still an ongoing issue but Deecon is holding on and fighting his ROP head on, I keep praying that he will beat it and save himself from surgery and losing his peripheal vision.. I am his number one cheerleading, talking to his eyes all the time letting them know that they can do this... again only time will tell but Mommy predicts good things ;)
has grown so much in the past month. January was a month of getting bigger and stronger for him. He is now 8 pounds and 11oz.. :) He has also been increasing his bottle feeds sometimes bottle feeding 3 or 4 times a day, but we have been noticing a strong stridor sound as he breaths which has become concerning. The doctors have stated that it was not effecting his oxygen level so they were not concerned at first but as January ends Deecon is struggling with his oxygenation and has been turning dusky colours and needs frequent increase in his oxygen. It now is a major concern. He was acting so out of character one night with desaturating that the nurse called for a emergency lung scan to see if there was fluid on his lungs again. The results were puzzling because his lungs still showed major lung disease but looked the best they have looked to date. His spells just got scarier from there. He had been changing colours lately, going dusky and then blue. One night when feeding him, his first suck on his bottle and he went limp, turned blue really quick and wouldn't respond. I panicked as you can imagine... my nurse helped me sit him up and started to rub and pat his back to try and get him to breath.. this didn't work next we layed him on his bed. His heart rate decreased and stayed low, this again was a Bradycardia.. he hadn't had one of those in a month, and it wasn't normal for Deecon to Brady and not bring his heart rate up with stimulation. He desatted with the Brady so my nurse put the green oxygen mask on him to try and help.. After five minutes Deecon finally brought his heart rate back up. My nurse was so scared that he might have possibly aspirated his milk into his lungs that we paged a doctor to have a thorough look and listen to Deecon.. Wow this was a very scary moment. He did recover well after 10 minutes he was back saturating in the 90's. The next week brought more scary blue spells, accompanied by a stronger stridor breathing.. An ENT (ears, nose and throat) specialist was called in to scope Deecon's throat. I wanted to be there so the doctor allowed me to hold Deecon as he scoped his throat. Deecon did not like the scope at first, but after rubbing his head and talking to him he, and of course some sucrose water allowed me to get him calm and almost sleeping. It was funny cause the doctor at one point in time said he was too quiet and that he needed to hear him coo or cry, so since he hated his blood pressure taken I held his arm out straight like they do for that.. He let off a soft sound and went back to sleep. Before they took the scope out of his nose I asked the doctor to take a peek so I was able to see in Deecon's throat. What we were looking at the ENT specialist explained was that Deecon had a paralyzed vocal cord. His left vocal cord did not have moment as his right did, therefore creating the stridor sounds as it collapses as he breaths. This gets worse as Deecon has seemed to be having increased problems with his acid
reflux. The more fluid he drinks, which he needs cause he is bigger the more he reluxes and irritates his vocal cord and box, which creates the louder stridor sound. The specialist said that he does not usually do surgery on one vocal cord so we would have to give it time and see if Deecon can strengthen it and grow out of it. He explained that the vocal cord must have been nicked in his Pda heart surgery. :( It was a sad reality... and as he is explaining it I realize that Deecon does sound a little raspy when crying which he says is another sign of a paralyzed vocal cord. So we can only hope that he will grow out of it and be able to talk perfectly... only time will tell... Deecon is a miracle baby through and through, so there is nothing he can't beat... His eyes are still an ongoing issue but Deecon is holding on and fighting his ROP head on, I keep praying that he will beat it and save himself from surgery and losing his peripheal vision.. I am his number one cheerleading, talking to his eyes all the time letting them know that they can do this... again only time will tell but Mommy predicts good things ;) 
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