My son Corbin who is now 2 years old has had alot of issues since birth. He was born Emergency c-section I had his other twin natural then when it was Corbins turn his cord was comming out first not him so they had to stop everything and I had a thing called a dirty emergency c-section where the nurse had to literally put her whole arm up inside to hold him and the cord so the doctors could get ready and for I to get knocked out. they rushed my S.O. out of the room and delivered him as fast as they could. In the Nicu he was in there for quite a while with Oxygen and feeding tubes, Ivs' . It was a scary thing the first time I could go in there ,their were so many Drs. surronding his incubator ...I feared the worst they were trying to figure out his heart problem as well as his inverted jaw , hernia in his belly button as well as his testicles, he also wasnt holdiong anyfood he kept spiting it back up and haveing residual in his stomach, they told me his ears were to small as well as his eyes were to close together so he had to be tested for cromsome abnormalities, etc. I was so overwhelmed and didnt know how to react . All I could do was think how to fix my son to be "normal" like his other twin.
He wasnt able to hold his oxyegen levels up by himself for a long time so his brother was able to leave with out him. which was sad its the hardest thing leaving your son at the hospital while you are bring home his sibling. you feel like you are betraying him or think that he thinks that you dont love him just those mommy things that go through your head.
Well a few weeks went by and while those weeks went by they found out that he has Aortic Stenosis (heart ) and he has to see a cardiologist for the rest of his life. also The told me he might have a syndrome . and he has bad muscles in his tummy that dosnt digest his food at the normal rate so he has meds. for that as well as pepcide to go along with that medicen then he has to have Mirrolaxx cause the meds he is taking constipates him. ughh too many for a newborn infant ,i thought.
Well a few weeks later it was near christmas time and were were able to bring him home. I still felt that they were missing something just a gut thing. So we take him home and feedings were the worst it was so hard to feed him , he would eat(drink) his formula so slow and you need to make sure you remember to give him his meds (reglan) before he ate. otherwise you would be wearing it right away. It would take him up to half an hour to an hour to feed him and after that I had to feed his brother as well. So no sleep for me . His coloring was always blueish gray. I alsways watched him making sure he was breathing right.
well I think it was the day before christmas eve that we had to call the doctor case he would stop breathing . They told us if we thought it was a emergency to take him to emergency. We go thim there and they checked his O2 right away and noticed it was gravely low . and then he stoped breathing thats when nurses and doctors came rushing in with breathing things and Ivs needles and just overwheliming things, They did many tests and couldnt firgure out why he couldnt keep his O2 up. I told them well what about his chin do you think it is cutting his airway off cause its so far back . they said it shouldnt make his airway that bad to close it off that extreme . the next day was christmas eve and still no answers. so he got admitted and they ran more tests still no one would listen to me or my S.O. about his chin. The sadeest day was that day where we had to leave our newborn son on christmas eve in the PICU unit to go home to our other 2 children for christmas cause we had to make it normal for my older son to where he wasnt left out. christmas morning came we had our christmas which was so sad for me but i hid it as best as i could. We left early that morning after presents to go up to the childrens hospital to find that "SANTA" came for Corbin they actually took a picture of Corbin and Santa" together which was the sweetest thing and they had gifts for him. I cried it was so thoughtful .
Well after a week of being in there and in another wing of the hospital we were able to stay with him at the ronald mcdonald house . we were able to bring him home since he was able to keep his O2 up. It was a day later where we had to take him back because of the same thing this time they had the nerosergeon and cardiologist, ears nose throught people in there doing all there test to see what was going on. They found out his chin was blocking his airway (which I had mentioned before)and he needed a chin Extraction which they had a special plastic surgeon break his jaw and extend it with plates and screws. well the dr. wasnt going to do it but he noticed it was life or death. so the schedualed it right away they did it . let me tell you I could NOT look at my son in that kind of circumstance it brought tears to my eyes just seeing the bandages it was the most horable thing to see your 2 month old go through. after he got that done airway was much better O2 was better and he was home in march 08.
Well now that he is 2 I have a new challange with him NOT sleeping always waking for no reason and not wanting to go back to sleep . he thrashes in his crib all night long where I think he is going to come through the wall. He has had a recent sleep study ,but before we could do that they put him on Iron suppliments a different med and so on , nothing worked still the same.We have told the drs that daddy had the same thing at that age and when they had test done on him he was having mild sezures well they havent checked for that yet , they keepo telling us that Corbin is a mystery , I keep getting that same excuse for everything I ask the drs about. Well mommy and corbin hasnt had sleep in 2 years basically and would like answers. I find out more answers next week after they look over his results from the sleep study. their has to be something wrong, I feel it. So if you are a mother of a child with special needs please let me know if there are moms out their like me where the doctors dont listen or if you have gone through this. By the way the cromosome testing they found out that there is no syndrome at all.
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