Living Unabridged

Our family recently welcomed our newest family member: our sixth child here on earth. Our second baby boy. From his daddy to his older brother, we had all eagerly anticipated his arrival.

What we hadn't anticipated was a four day stay in our hospital's NICU.

None of our other children had ever required this. He wasn't premature. I gave birth to him naturally. He was only one day overdue. He didn't aspirate meconium. His birth was beautiful (and hard and incredibly messy, but mostly beautiful).

But he was only hours old when the hospital staff took him from us and our family had to walk an unexpected path.

What emotions can you expect to find in the NICU?

Fear

The NICU isn't part of anyone's "Plan A". Even parents expecting multiple births or other troubles have the hope that maybe everything will work out without a NICU visit.

When a hospital pediatrician you don't know is telling you that there's a problem with your seemingly healthy newborn's lungs, fear is the overpowering emotion. The unknown is scary. When you hear x-rays and other tests being ordered for your tiny new human, that's scary. When they're asking you questions about possible infections or complications with your pregnancy and birth (there were none, in our case), you think about everything you ate or did while you were pregnant.

Which leads to the next emotion:

Guilt

You are this baby's mother. Why couldn't you protect him from this? Why can't you hold him skin to skin the way you did all his older siblings? Why can't you nurse him? (In our case, nurse him again, since he had already nursed once in the delivery room.) If any of this is your fault (and even if it isn't), moms are excellent guilt carriers. Babies who are born prematurely leave their moms particularly vulnerable to this. What did I do wrong? Could I have done something differently?

You will feel guilty.

Anger

Our baby's diagnosis turned out to be "spontaneous bilateral pneumothoraces". Which means he had two pockets of air under his lungs that were compressing his lungs and how they functioned, but the doctors didn't know why it happened. (None of the usual risk factors or causes applied. Hence: "spontaneous".) Not knowing "why" can cause anger.

One phrase that drifted through my head far too often:  "This wasn't supposed to be this way."

We had an uncomplicated pregnancy and I had managed to give birth without any drugs. Wasn't that supposed to result in a quick recovery, "good job", and you'll be home 24 hours later? Not this time.

I really fought anger (which had to be related to my desire to control things) the first day. That day I wasn't allowed to hold our baby for hours. And we couldn't nurse, even though he had already nursed once (before his diagnosis). It felt arbitrary and ridiculous. Newborns belong in their mommy's arms. Not in a bassinette all alone.

Loneliness

NICU life is lonely, even when you're surrounded by babies, nurses, doctors, and other various people. Only a few visitors are allowed for each baby. (In our NICU the rule was 4, including mom and dad) No one really interacts with each other. Parents pass in the elevator or wash room and nod, but everyone is too tired to take on the struggles of another family.

Our second night in the hospital my husband went home to be with our children. It was a good decision: I didn't need assistance (my recovery was uncomplicated and quick). I had to walk to the NICU, two floors and another building away every 3 hours to nurse the baby (by this time he was eating on his own). I didn't need my husband to help with that.

So he went home and I spent my first night alone in a hospital room.

I'm an introvert of the first degree but that was hard.

I spent the following nights alone too, in a room closer to the NICU, because I was already discharged as a hospital patient. That was even stranger because it was kind of like no one knew where I was or cared what I was doing. I felt like a ghost haunting the hospital hallways as I walked from my little room to my baby's NICU bedside at all hours of the night.

I was exhausted, but I would stay up too late texting my husband or, one night, my sister, because I was just so alone.

We were covered with prayer support from all over the world (literally: missionaries in Scotland and Romania let me know that they were praying for our little guy) but practical support fell mostly on our two sets of parents. If you want my advice on how to reach out to a NICU mom: text her. Call. Send a facebook message. Email. You may think that's nothing but it matters to a mom sitting alone by her baby. (There are other things you could do, too, but this would be a great first step.)

Overwhelmed

NICU life is like getting thrown in the deep end of medical school. There are acronyms flying. There are choices, some of mild importance, some of extreme importance. There are neonatologists, residents, fellows, nurses, PCAs, therapists, lactation consultants, and more. There are questions and orders and directives.

You probably aren't sleeping well, or much. You aren't eating great meals at regular times.

Watching your baby endure tests and poking and prodding is exhausting too. Listening to a baby cry and not be able to pick him up...that's hard, to say the least.

And then there are the things you witness while you stay: babies who struggle for every breath, every feeding. Babies who are fighting addictions. Babies who cry and scream and have to wait for the first available nurse, when all the nurses are already busy. Babies who are never visited by a family member. Sometimes this is because their families live too far away and sometimes it's because of terrible drug or alcohol related situations. (This is seriously heartbreaking. One baby just a bed over from our son never had a visitor the entire four days we were there.)

Strength

Sure, I just told you that you'll be afraid, tired, lonely, and overwhelmed. But you may also find a strength you didn't know you had.

I've never done well with the sight of blood. When our kids get hurt, they go to Daddy because he can clean them up and bandage them without losing his supper. That's never been certain with Mom (me).

Not so with our NICU Baby. I hated every time they had to draw his blood or reattach his leads or examine him, or, worst of all, replace his IV. I hated every single time something like this happened and yet I stood by him, comforting him, giving him drops of sugar-water, holding him still so it would be over faster.

I did that. (And I never felt sick to my stomach. Never had time.)

The first time you see your baby covered in wires and tubes is overwhelming. But soon enough you are an old hand. You pick him up and rock him without disturbing anything. You know how to re-apply the leads he accidentally pulls off. You know how to swaddle him without snagging the wires. You change his diapers without disturbing anything or making too big of a mess. You know what questions to ask when the doctors make their morning rounds. You learn what all the flashing lights and numbers mean.

You do these things without a second thought, because he is your baby, and even if he's in the NICU, you can take care of him and you are grateful to do it.

Hope

The NICU is the last place in the hospital you want to be, and it's the best place in the whole hospital. You watch the nurses: they know their stuff and they are the BEST nurses in the building.

Every positive sign in your baby is rejoiced over. You feel excited for the families you see taking their own NICU babies home (and a little bit of jealousy too, of course.) You see tiny babies thriving. You see sick babies getting better. You carry tiny vials of breastmilk (or colostrum) to the NICU and feel hope that you will, in fact, be able to nourish this child. (Not going to lie: you feel ridiculously proud of even those small efforts too. Pumping is hard, y'all.)

There is laughter and joy in the NICU. It flows from one baby bed to another, probably carried by the nurses. You watch them handle a new arrival, a tiny human who might not be alive except for their skill, and you know you are witnessing miracles on top of miracles all day long.

Love

Anyone who has more than one child knows that you don't need to worry about how to divide your love between your children. The new baby brings the love with them. Love multiplies.

I just didn't realize how quickly that could happen. When our baby was taken from my hospital room, first to the regular nursery and then to the NICU, I felt the loss. As the events unfolded, I knew I would do whatever it took. The fighting "mama bear" instinct happens quickly. Maybe it's hormones, or maybe something else much greater, but it's amazing to realize how much you love someone you just met and what you will do for that child, if they need it.

And it isn't just the baby that inspires love. I can't describe for you what love you feel as you watch your husband gently pick up your baby, covered in wires though he might be. Or when you watch your husband change those tiny diapers...love is a verb and you will see it often in the NICU.

Gratitude

Like I said, the NICU is no one's Plan A. But when you end up there and especially when you leave with your now healthy baby, you feel nothing but overwhelming gratitude.

To the neonatologists, especially that first one who gave you the go-ahead to nurse him for the first time in a day, you feel gratitude for their no-nonsense expertise.

To the support staff, including the woman who held your baby and rocked him while you were at lunch (the "professional cuddler") you feel gratitude.

To the unknown hospital staff member who bought your lunch when the cash registers locked up in the cafeteria and wouldn't let you pay her back: you feel gratitude. (Some angels wear scrubs.)

To the nurses: you feel immense gratitude that makes you wish you could stay in touch with all of them, because they are surely the nicest, most capable women on the planet. So, Jill, Carly, Kelly, Beth, Janet, Jenn, Jen, Harriett, and Courtney: you are the best and I hope you know it. Thank you for being so gentle with my baby. Thank you for advocating for us. Thank you for holding him and rocking him. Thank you for swaddling him with his hands out, just the way he liked. Thank you for using his name (and all the adorable nicknames). Thank you for finding him a swing in the middle of the night. Thank you for helping us nurse. Thank you for treating us like we knew what we were doing. Thank you for greeting me with a smile, even at three in the morning. Thank you. You are all amazing.

To the Healer: thank you for leading us on a path we would never have chosen. Thank you for healing our baby. Thank you for our parents who took care of our other children (and our house). Thank you for everyone who prayed for him. Thank you for plot twists that help us seek you in ways we haven't before.

Do you want to help someone with a baby in the NICU?

I've known several families with NICU babies. I prayed for them but I didn't really know what they were going through. Now, in an admittedly small way, I do. I didn't have a preemie or spend weeks (or months) in our NICU but the four and a half days that we spent there were enough to open my eyes a little bit. So, how can we help these families?

• Pray. It matters. It works. Really, it's the highest work. Encourage others to pray. Let the family know you're praying.
• Contact. The NICU is isolating for more than the baby. Text messages and emails are a lifeline. (Phone calls might not be a great idea since most of the time you can't use your cell phone that way in the NICU.) Don't tell horror stories you know about babies who didn't make it. Listening is more valuable than telling. The Facebook messages I got from a church friend whose baby recently came home from the NICU (he was born 10 weeks early) were great encouragement. You can visit, if possible. Just be aware that you may not be able to enter the NICU or stay long. But a NICU Mom needs to see friendly faces every once in a while. (I really appreciated our families who visited, including my grandparents and my in-laws - particularly when they brought my other kids to meet their new brother.)
• Give. Take their other children for a little while or overnight. Bring bottled water or healthy snacks (cafeteria food gets old, not to mention expensive) if you can. Make sure these are resealable so they can leave them in the proper place - our NICU didn't allow water or food to be carried in and these had to be left in the waiting room fridge. (Another possibility: a gift card for takeout might make a nice change.) Give a frozen meal for when they get home. (You can also consult this Gift Guide for the NICU Mom from Go Haus Go if you need more ideas. I'd add nice lotion to that list. Every time you enter the NICU you have to go through an elaborate wash-up routine that leaves your skin cleaner than it's been in your whole life but also horribly dry.) Give blankets or decorations for their NICU area, especially if their stay will be long.

Our NICU experience is not how I would have chosen to spend our first few days with our new baby, but I'm thankful for the experience. At the very least, it makes me more aware of what fellow moms might be going through. I never want to take those lessons for granted.

I hope I never take a minute of this little man's life for granted either.
If you have a NICU story to share, I'd love to hear it.