Things Not to Say (or do) to a NICU Momma

My son was born premature at 30 weeks due to complications I had from preeclampsia. He spent seven weeks in the neonatal intensive care unit at our local hospital. I cannot compare the pain I experienced in a single word or perhaps even an entire blog entry. It was enormous. Throughout the experience we felt the love and compassion of so many people.

And then there were the jerks. The ones who pried a little too much, didn't know what to say and others who lacked any common decency at all. And I realize that not many people have encountered a person with a child in the NICU, but it doesn't make some of these comments/questions/actions hurt any less.

1. "Oh, X number of weeks? That's not too bad."
From the moment a woman discovers she is pregnant, she dreams of holding that baby. Nursing him. Loving him. Bringing him home and gathering with friends and family to celebrate this new life. NICU parents don't get these oppotunities as soon as their child is born. For a month I could only hold my son for 20 minutes a day. I was told when to hold him, how to hold him and was often told to leave the room if another baby had to be treated or a new baby was about to be admitted. I had to untangle multiple cords that were attached to his teeny body each time I held him or changed his diaper. Mix in three other children who are not allowed to see their new brother and are confused about what is going on and you have yourself a mentally, physically and spiritually draining experience and no matter how long or short the stay is, it feels like an eternity.

2. "Where's your baby?"
The night I was discharged from the hospital I waited in the lobby for my husband to pick me up. There I was--suitcase, flowers, balloons and a visible post-baby belly. But no baby. A woman walked by and asked where I got one of my balloons. I simply told her that I received it from a family member and didn't know. She nodded and then looked around me. "Where's your baby?" I wanted to scream at her. I wanted to tell her what an insensitive person she was. I wanted to let her know the pain I was already experiencing without her blatantly pointing out that I didn't have my baby with me. Instead I simply told her he was in the NICU and she walked away without an apology.
The fact is, a lot of babies DON'T make it out of the hospital and many mommas leave the hospital empty handed for a variety of reasons.

3. "When is he getting out of the hospital?"
This question is a little more understandable, but sometimes equally as frustrating as the others. NICU doctors know that parents have one thing on their mind--bringing their baby home. For this reason they are very hesitant to give a specific date on when babies will join their parents outside the walls of the hospital. Three different doctors gave us three different estimates on when James would be coming home. There were certain criteria he had to meet before he left and he didn't really meet any of them when we thought he would. He was off of oxygen for weeks and then suddenly had to be put back on it when he began to have trouble breathing. That was a set back. Three babies that were admitted after him and around the same gestational age were released two weeks before him. That was an emotional set back. NICU stays are a day-to-day waiting game. We really were not expecting him to come home when he did. We showed up at the hospital one day and they gave us about two days notice when they had JUST told us he would be there at least another week. So most parents never know when their little one will be joining them.

4. That face you make when I tell you how old he is.
You asked. I told you. Please don't give him (or me) the look like we are the freaks. I could go on and give you the whole schpeel about how he is two and a half months old, but he was born 10 weeks premature so he is really more like 4 weeks, but frankly that's none of your business and I don't have time for anything outside of small talk with strangers. I'm sorry that my five pound 12 ounce two and half month old is smaller than your newborn child/grandchild/niece/nephew/friend's baby. Congrats to you or them on getting a "normal" pregnancy and birth experience though.

5. "Is he going to have any...you know...problems?"
This is a question every preemie parent asks themselves at some point, but it just stings when other people ask it. Yes, he will be developmentally delayed for about the first two years. Will he have physical or mental handicaps that will last the rest of his life? I don't know and only time will tell. Until then I am just trying to enjoy being Momma to this precious tiny miracle that I had the privilege of watching grow and develop outside of the womb.



I think most NICU parents know that others are trying to help with some of their comments (such as #1) or they have just a general curiosity or concern. But what helps more than anything is just a simple "we're thinking of you" or a listening ear.

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NICU moms and dads--what were some things you heard that you didn't particularly care for?

James David King: A Birth Story

The past week and a half has been incredibly difficult and while I'm sitting at this keyboard, I still find it difficult to put into words exactly what I am feeling.

Last night, at 5:58, I gave birth to a tiny little miracle. At just 2 pounds 12 ounces, James David entered my life and this world just a little sooner than we anticipated.

It all started on November 7 when I went in for my weekly appointment with my high risk doctor. My blood pressure was high again and she decided to keep me for 24-hour observation at the hospital. They would do a 24-hour urine collection to determine if I had preeclampsia and make decisions from there.

As I feared, I did have preeclampsia. The protein in my urine was just at the level where they diagnose pre-e: 300. My doctor informed me that I would be on bed rest for the remainder of my pregnancy and she wanted to keep me another day. Great.

The following day, Saturday, I was fully prepared to start packing to go home. Until Dr. Ware showed up. She informed me that the protein had doubled over night and that it was an indicator that things could get really bad with the pre-e. They would begin steroid shots to build up James' lungs in case we needed to deliver early.

My protein levels continued to rise and despite being on blood pressure medicine, my blood pressure was still spiking at times. On Tuesday morning I woke up and felt like someone was sitting on my chest. I couldn't breathe. I could barely get out a sentence without coughing and gasping for air. After the 7 am shift change doctors began ordering various tests including a chest x-ray and an EKG. While I waited on the test results, I was given oxygen to assist my breathing. That evening my doctors informed me that the pain I was experiencing was due to fluid building up on my lungs as a result of the high blood pressure. The first course of action was to administer a diuretic to help drain the fluid out of my body. Dr. Ware informed me that there was no way I could wait until 37 weeks to deliver James. At best we were looking at 34 weeks, but even that would be a stretch.

I didn't panic initially. But when a doctor from the NICU came to visit and answer any questions Brian and I had, I shut down. I absoultely couldn't believe that I was here. In this situation. This wasn't how it was supposed to be. I was supposed to have a smooth delivery via induction at 38 weeks just like I did with Thomas.

Thursday night Dr. Ware came into my room with a somber look on her face. I knew it was not good. I knew what she was going to say. My protein level was just short of where they would normally deliver James. It was likely that I would reach that level the following day.

I didn't sleep that well that night. I prayed like I haven't prayed in a really long time. I didn't really pray for my protein level to decrease. I didn't pray for James to arrive at a normal birth weight and not need the NICU. No, I simply prayed to be content. To be okay with whatever the following day's outcome would be.

As expected I was told that I would deliver that day, but due to a backed up operating room and my OB's schedule, it was unknown when I would be taken back for a c-section. The next few hours were the longest of my life. I felt like a prisoner awaiting his lethal injection, not a mom who was preparing to meet her new baby. I played over the last 30 weeks in my mind--what did I do wrong? Was this my fault? What specific action did I do to make this happen?

Around 4:30 pm the room started erupting with nurses preparing me for delivery. Anesthesiology showed up and that's where things start to get hazy.

I remember sitting in my room with Brian and the nurses wheeling me out into the hallway. My mom was standing outside my door, and I waved to her as I rode away on my glorious bed chariot.

I remember being placed on the operating table, unable to move anything below my waistline. The thin blue curtain I had seen in so many baby delivery shows was put up in front of me and I heard Dr. Bartley enter the room shortly after that.

I remember her asking, "Did you feel that?"

"No," I responded.

"Okay, well I just pinched your stomach really hard," she told me.

"Well that wasn't very nice!" Oh yeah--the drugs were working.

At that point I remember being terrified that they were going to begin operating without Brian in the room. Who would hold my hand? Who would check on James while I was stitched up? Who would walk down to the NICU with him?

I felt a huge relief when one of the nurses announced his arrival. As soon as he was by my side I reached for his hand.

I don't remember them actually telling me that they were beginning to cut, but I do remember there being a lot of pulling and strange sounds coming from behind the curtain. I remember Brian talking to me, but I don't remember what he said or what I said.

Suddenly I felt Dr. Bartley mashing on my ribcage over and over--like she was trying to kill me with CPR. Then there was a pause and I heard several people scurry over to my bed. A moment later they called Brian to the corner of the room. He left my side and that's when I heard it.

Crying. The most beautiful cry I have ever heard in my life. It was teeny, but strong. Soft, but loud. It was perfect. Tears began streaming down my face. "That's a good sound, isn't it, Momma?" Dr. Bartley asked as she and her team repaired my tummy. All I could do was nod.

Brian and the team of NICU nurses brought him by my bedside so I only got to see him for a moment, but it was cherished nonetheless.

After my surgery, I was taken back to a recovery room for about an hour. I was told that they would take me to the NICU to see him and I was itching to get out of there.

When I finally made it back there I was in love. Again, just like with Thomas, I was completely infatuated with this tiny creature that had grown and moved inside my belly. As scary as it was to see him in that incubator, hooked up to all those monitors, I knew that everything was going to be okay.

It has to be.

James' first photo.

Breathing okay on his own.

In Room #2 in the NICU.