Since today is the start of Prematurity awareness month I thought I would do my first post on What it's like in the Nicu..The rollercoaster that all family's experience and the fight that our preemies endure after they are born...Before Xander was born I was already in the hospital on bedrest due to my high risk pregnancy..The doctors were optimistic but you could tell that having a premature baby in my case was a harsh reality that was going to happen..Xander was born via emergency c-section at exactly 3 a.m. weighing 2lbs 5ozs
..Being born at only 27 weeks gestation, 13.5 inches long and no fat on his body, my husband and I were prepped for the the long road ahead of us..I could probably write a book on those first few weeks in the nicu but I just want to sum up the reality of my experience..After recovering for a couple hours and the doctor's stabilizing Xander, I went to the nicu to see my baby for the first time in a issolette, hooked to a number of mechanical devices and a ventilator and then cpap doing some breathing for him..To say that was traumatizing is a under statement, little did I know that this everyday re occurrence of guilt, heartache and non stop worry would stay with me for a very long time..Even some of the nurses try to make you feel better by saying, oh he just needs to gain weight, or as soon as he doesn't need any o2, or as soon as he can take a bottle it will all be o.k..I think a lot of people think that as well..That these babies just need to gain weight and do this and that, and yes that is all some need, but what your not told is that a large majority of premature babies are so sick, that they will face life long challenges and some even life long disabilities..I was not told a whole lot while in the NICU, as far as statistics on Xander having any disabilities..I do remember one of the Doctor's telling us he had a 70% chance of living, which was so hard to hear..I was so very desperate to know that Xander would survive and have a great quality of life, but in reality i just wanted him healthy and home and then I could make it all better! There were a ton of days that when we went to the hospital Xander was very sick and couldn't be held, or he needed a blood cell transfusion, because his body wasn't producing enough yet, or he had to be bagged because his o2 levels were unstable...Phone calls in the late night or early morning saying "we think Xander had a seizure and are getting ready to do a ultrasound" or "he has a infection"...At one time I felt that this ride would never end, but it did, thank god! After 65 long days in the NICU Xander came home.
.It has been a little over a year since coming home, we so far have avoided a lot of the long term issues that preemies can face and I still find myself checking to make sure he is breathing o.k. when he is asleep and I still stress about his weight(though it is fine)..Our Nicu experience changed our lives, as it does thousands every year and a piece of good advice I was given and would like to share is to enjoy and appreciate the good days in the NICU, and to do whatever you can to get through the bad..Xander today is 16 months old/ 13 adjusted..He is healthy, happy, vivacious and has a way of making anyone's day better with his smile, he is a miracle! I left out so many details, and I know everyone's experience is different and unique..I hope I can do at least one thing this month that helps raise awareness for preemie babies, in hopes "that one day all babies will be born healthy"
..Being born at only 27 weeks gestation, 13.5 inches long and no fat on his body, my husband and I were prepped for the the long road ahead of us..I could probably write a book on those first few weeks in the nicu but I just want to sum up the reality of my experience..After recovering for a couple hours and the doctor's stabilizing Xander, I went to the nicu to see my baby for the first time in a issolette, hooked to a number of mechanical devices and a ventilator and then cpap doing some breathing for him..To say that was traumatizing is a under statement, little did I know that this everyday re occurrence of guilt, heartache and non stop worry would stay with me for a very long time..Even some of the nurses try to make you feel better by saying, oh he just needs to gain weight, or as soon as he doesn't need any o2, or as soon as he can take a bottle it will all be o.k..I think a lot of people think that as well..That these babies just need to gain weight and do this and that, and yes that is all some need, but what your not told is that a large majority of premature babies are so sick, that they will face life long challenges and some even life long disabilities..I was not told a whole lot while in the NICU, as far as statistics on Xander having any disabilities..I do remember one of the Doctor's telling us he had a 70% chance of living, which was so hard to hear..I was so very desperate to know that Xander would survive and have a great quality of life, but in reality i just wanted him healthy and home and then I could make it all better! There were a ton of days that when we went to the hospital Xander was very sick and couldn't be held, or he needed a blood cell transfusion, because his body wasn't producing enough yet, or he had to be bagged because his o2 levels were unstable...Phone calls in the late night or early morning saying "we think Xander had a seizure and are getting ready to do a ultrasound" or "he has a infection"...At one time I felt that this ride would never end, but it did, thank god! After 65 long days in the NICU Xander came home.
.It has been a little over a year since coming home, we so far have avoided a lot of the long term issues that preemies can face and I still find myself checking to make sure he is breathing o.k. when he is asleep and I still stress about his weight(though it is fine)..Our Nicu experience changed our lives, as it does thousands every year and a piece of good advice I was given and would like to share is to enjoy and appreciate the good days in the NICU, and to do whatever you can to get through the bad..Xander today is 16 months old/ 13 adjusted..He is healthy, happy, vivacious and has a way of making anyone's day better with his smile, he is a miracle! I left out so many details, and I know everyone's experience is different and unique..I hope I can do at least one thing this month that helps raise awareness for preemie babies, in hopes "that one day all babies will be born healthy"
Thanks so much for this great post and for spreading the word about prematurity.
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