Skip to main content

Going Home: Our NICU Experience

March 15, 2011 was a fantastic day. I was finally getting to take Christian home from the Vanderbilt NICU. But to get to that point was grueling, exhausting, and heart breaking.

To describe briefly the experience of having a child in a NICU, it's like watching someone you love be imprisoned. You know that them being there is what's best for them and that you really can't complain because they are being well cared for; But somehow, there is an emptiness in the pit of your stomach and sometimes you feel like just grabbing the prisoner and running out the doors as fast as you can. There is this constant pit in your stomach. That pit is caused by the lonely drives home every night. It's caused by the phone calls that you make at 2am when you wake up and start wondering what he's doing. And by every family you see out in public enjoying their baby.

Getting discharged from the hospital was a hard day. We packed our bags and the nurse wheeled me to my car. And as i got up from the wheelchair to get in the car, I remember looking in the backseat and seeing Christian's car seat, empty, and his diaper bag. We cried the whole way home. We had to leave our baby boy 60 miles away, and go home to an empty bassinet all ready to hold a sleeping baby, and a quiet house that should've been ringing with the sounds of a baby's cry, and it was hard.

I know Christian had to be in the NICU, and he needed to be there. But at the same time, I hated it. I wanted him home. I wanted to have a normal baby, and a normal experience. I wanted to take him to visit family, and cuddle up with him at night. I wanted to hold my baby and not have to worry about ripping his IV out. I wanted to lay beside Christian and not hear the constant beeping of his monitars. I wanted to be with him every second of the day.

And because he was in the NICU, I couldn't. I had to drive an hour and a half one way just to "visit" my son. I had to ask a nurse how his day had been. When he was hungry I had to ask someone to bring his food, I couldn't just go make him a bottle.  I felt like I wasn't really getting to be his mom and that i missed the first 25 precious days of Christian's life. I was stressed, and broken, and exhausted.

Before I was allowed to take him home, Vandy made me take a baby CPR class, a class to learn how to run his machines, and spend the night to take care of him for 24 consecutive hours, and it made me furious. I know it was all in Christian's best interest, but why did I have to go through so much extra hassle when I was already going through so much? It just didn't seem fair to add more burdens ontop of the burdens I was already carrying. I was already bitter because i didn't get to have a normal baby and I couldn't.

Finally though, the day came, and I was able to take my little boy home and try to begin to be a normal family. Of course, normal for us means weekly trips to Vanderbilt, eating through a feeding tube, and constantly tracking and planning doctor visits, surgeries, and procedures. But despite the fact that we will never get to be "normal," I think we're finding our place.

If I had to do it all over again, the only thing I might do differently is stay at Vanderbilt more. I regret not being there more than I was.

Christian's first NICU room.

Our first famiy photo, at 7 South Vandy NICU.


Post a Comment

Popular posts from this blog

Why I Won't Allow My Toddler to Have Cosmetic Surgery

It strikes me as odd that I have been asked many, many times if I will have Christian undergo cosmetic surgery to repair his birth defect. Apparently, it's not an odd question to most people, because I could not tell you how many times I've been asked. The number literally lurks somewhere close to 500, if I had to guess. I am not AT ALL offended by the question, and I enjoy explaining my answer, but still, I find it odd to be asked. Imagine your beautiful child that you simply adore. Her little button nose, those ears he got from his daddy, that little smile with that one not-so-straight tooth right up front, those freckles that dot her cheeks, that bright red hair, or that jet black hair. As you imagine that, I am sure you have a few emotions that go along with it: adoration, admiration, love. You probably think that your child is the prettiest thing you've laid eyes on. Well, when I look at my child, with tissue in the place of where eyes should be, and a crooked s

My Experiences with Bullying

For anyone who follows us on Facebook, you have probably, at one time or another, seen someone make a rude or hateful comment on a photo I've posted of Christian. It has been happening pretty much since he was born. In fact, much of the reason that I decided to make the video that went viral was because of all the negative comments that we would receive, whether through social media or face to face when we were out in public with Christian. And I have to say, I am tired of it. I sometimes find myself unable to deal with a hateful comment on a particular day, or exhausted with the idea of checking my email and finding another rude comment left on my YouTube Channel. So this blog is my outlet to vent my frustrations and share my wisdom on the matter. I consider myself a professional at handling bullying, after all, considering all the bullying I've dealt with over the last few years. At first, the comments hurt. I remember the day that I first took Christian out in in public

If it Was Easy

Last week we visited Tennessee School for the Blind. This was a trip that I have been hearing about for about a year. I’ve known it was coming, but I had no idea what to expect. There was some anticipation with a touch of dread mixed in about this trip.  The purpose of this visit was an evaluation. That single word is too small to really describe what all took place, really. Christian was evaluated on pretty much everything. His vision was checked (no brainer, but they did have an ophthalmologist just take a look, to confirm his vision impairment. It’s always good to have it documented on paper.) The school AKA TSB also brought in physical, occupational, and speech therapists, vision teachers, orientation and mobility specialists, assistive technology experts, a psychologist, and just an entire array of specialists to do this evaluation. He was ranked against other blind children his age to get a more accurate measure because it doesn’t really give us a good picture to try to co