I feel weird writing this one, but for anyone who hasn’t had a child in the NICU or a family member, it is really hard to understand that experience. I should also preface that in the general scheme of things we were EXTREMELY lucky.  There were babies in the NICU that were very sick and required a lot more care and intervention than Liam did.  But all the families and parents in there can relate to the overall experience. I think the biggest feeling I experienced in there was that this was just not what I pictured.  I pictured going to the hospital with my hospital bag packed.  I pictured the baby being born and put on my chest for bonding time and having him sleep in my room.  And having visitors to the hospital to meet him bringing balloons or flowers. And leaving the hospital two days later totally not ready to take this show on the road.

I did not picture driving feverishly to the hospital with nothing that I needed, or having him be born only to have the nurse hold him up in front of me and then wisk him away or sleeping (somewhat soundly) in the hospital room with only the sounds of other people’s babies down the hallway to wake me up. Or leaving the hospital in a wheelchair with an “It’s a Boy Balloon” but with no baby in my arms and random people asking me where the baby is…

It’s just not what you imagine and it is so emotionally taxing. Even for those of us lucky enough to have a relatively short stay and relatively few complications.  My friend who had a daughter born with a health condition called CDH and had surgery at just a couple days old, posted this video on Facebook from Motherly Media that shows a little about what it is like to have your babe in the NICU.

I sort of compiled a list of some of the craziness related to having your little one in the NICU.  I’m sure it doesn’t include everything, and I wish I took more pictures, but this was the general gist of our experience for the first 10 days of Li’l LJ’s life.

• What is That Noise?
  • It is incredibly scary to see your baby hooked up to a million wires.  And like I said, we had a relatively “unplugged” baby compared to a lot of others.  But there are beeps and bells and things going off all the time and his leads kept falling off so all of a sudden it would be like RED ALERT no pulse, no heartbeat and I would panic and then a nurse would come over nonchalantly and just reattach them.  It would happen a couple times per hour at least.  The best is when it would happen when you’re feeding or burping him and you think you blocked the airway or something.  Mildly Terrifying.

So many cords.  But look at that little butt chin!

• Your Phone Is Disgusting
  • The NICU unit was like Fort Knox.  For good reason, but you’d have to buzz yourself in and then sign in and ask if you could see your baby.  You go into a super intense handwashing station, which, not gonna lie, I kind of wanted to buy to have at my house.  And there are signs everywhere telling you that your phone is dirtier than a public toilet-not surprised, but still.  Wipe that Shit Off ( literally).  They’re gross.  When you’re in the hospital you kind of just stroll down the hallway whenever you want, but once you get released you have to get a visitors pass and go through this whole process.  Glad it was secure but also felt like a whole thing to see your own child.  After a few days visiting , they start to recognize you.  You still feel like you’re trying to get into the hottest club and hoping they’ll let you past the velvet rope.
• No, You Can’t Come See the Baby
  • One of the hardest things is being so excited about your new arrival and not being able to share it with people.  The more visitors you have, the higher likelihood of infection so you have to keep it pretty tight.  You want to share this exciting moment with family and friends but you really can’t.  It definitely feels a little lonely and isolating.  You feel like you’re missing out on part of the new baby experience.
• Bili-What?
  • When Liam was born, he didn’t need CPAP or a feeding tube which was great news.  I expected him to be in an incubator when we went to see him for the first time but he was just out in the open.  It was so exciting.  My mom and brother came down so we were excited to introduce him, but when we got back to the NICU he was in a NICU with a tiny eye mask under these bright blue lights.  It was kind of shocking because he wasn’t originally like that.  We were told his biliruben levels were high and he needed to be “under the lights” to keep the numbers low and prevent liver damage and worse. I was thrown off since he was out and we could hold him and then all of a sudden he’s in this tiny tanning bed sort of locked away from us.  I never even heard of biliruben but a lot of babies need this treatment, even when they’re not early. It was very scary to go from having full access to the baby to having them in glass.

I just needed a little tan!

• Tiny Diapers
  • Do you know how small a preemie diaper is?  About the size of a maxi pad.  About half the size of the pad they give you after birth, lol. When the first nurse asked if I wanted to change the diaper, I was like umm sure. Then she just handed it to me.  Now, I’ve changed lots of diapers but none this small and not through two tiny holes in an incubator.  Needless to say, I failed miserably at this task.  I kind of thought she’d give me a lesson, but nay. She did not.  She was like sink or swim mama.  I sank.  But I got the hang of it eventually. Also, yes, boy babies will pee all over an incubator if you don’t go fast enough. Fun fact.

Very challengin to change a diaper through this hole!

• Pump Station
  • When you have a preemie, if you plan to or want to breasfteed, they give you a hospital grade pump while you’re there.  If you have an on time baby, your milk supply is usually created by the demand of the baby itself.  But when the baby is in the NICU, there is no demand to be created so you need to essentially fake it and a regular pump you get through insurance just won’t cut it.  They had a lactation team that would come give you a lesson and it is brutal.  When you first start you are legit getting droplets.  Spending half an hour doing manual compression (yes it’s exactly as fun as you think) then strapping yourself up to the cones and getting hardly anything.  But the nurses want you to deliver it anyway because it’s full of antibodies and good stuff so they feed it to your baby in a syringe until you start making enough for a bottle.  It is emotionally and physically exhausting.  Kenny was doing late night deliveries from labor and delivery of thimble size milk drops.  Luckily the supply came in eventually and we were driving our little cooler of “the goods” to and from the hospital for the next week. The NICU even has a pumping room with little stations since most of the moms there need to pump every 1-3 hours. You’d walk by and hear a symphony of suction every hour of the day.
• No Food Allowed
  • There was a tiny waiting room for family.  It was surprisingly small to me, but then again we weren’t supposed to have visitors.  But for us who weren’t from there, we basically treated it like a job, it was sort of our home away from home…away from home.  We were there from about 9am until 6pm every day.  That way we could participate in the feedings every three hours, change him, do skin to skin, soak in all the bonding time possible within the rigid schedule they were all on. You weren’t allowed to eat in there.  I was like wait, we are here all day and we can’t even have snacks?  Seemed outrageous to me.  There was a cafeteria and Au Bon Pain in the hospital on a different floor.  But when you’re pumping and cleaning parts and feeding and changing the baby by the time you’re done all that you have like 15 minutes to eat.  We broke the rules a few times.  I know, this is shocking.
• NICU Nurses are Superheroes
  • Legit.  These nurses are amazing.  They had so many tiny nuggets to take care of with all kinds of issues, tubing, cords, specific needs.  They were throwing around these tiny beings so calmly and confidently, and providing emotional support and coaching to the parents.  They honestly got us through this ordeal. High five a NICU nurse if you know one.  They are the shit.
• Infant CPR
  • In the waiting room, there were signs for support groups and classes and all kinds of resources.  They offered, sort of required, you to take an infant CPR class before discharge.  I’ve taken CPR a bunch of times for teaching fitness classes, but never with the intent to use on my own child.  I know a lot of people will take this class on their own before they have a baby. But the fact that it was kind of required was a scary wake up call to me.  As was the mom in the waiting room, awaiting discharge of her baby, who told us she took her little one home and then she stopped breathing due to infection and had to be readmitted.  “Good thing I took the class” she said.  Ok, lemme go sign up right now…
• PUPP
  • The day or two after I got discharged I had this little rash around my waistline.  I thought it was just an irritation from the sexy mesh underwear the hospital gives you but over the next few hours the rash covered my whole body from shoulders down to my knee caps.  It was unbelievably itchy.  We thought it was an allergic reaction maybe but to what?  Everything I’m using is not my normal stuff so who knows.  It was AWFUL.  Sitting in the hospital for 9 hours a day wanting to rip my skin off.  Finally had to go to the doctor and was givin steroids, took 5 days but eventually went away.  I thought it might not ever go away.  Thanks to Kenny’s sleuthing online we ended up figuring out it was this thing called PUPP, a rash that often develops in pregnant women in the third trimester and can last until birth.  But sometimes it develops after birth, lucky me. Picture skin to skin or pumping on top of a full body rash. Hot.  Literally. If you’re feeling brave, look PUPP up on Google Image.
• Just give it to me straight
  • I like information. I know that medical things change, and not everything can be predicted to the T, but we got all sorts of crazy info in Labor and Delivery and then different information in the NICU.  And then different information every time we got an update.  When you’re more than 4 hours from home, don’t have any of your stuff, dealing with hormones and fear and confusion, you just want to know what you’re in for.  Am I here for a few days? Weeks? Longer?  We were told on Friday, if he passes the carseat test you can probably leave Monday, then we were told mid week, then end of week, then we’ll have to see.  All based on whether or not he was eating enough, what his biliruben levels were, etc.  I know those things can change but the pushing back process was rough for my mental state.  I just wished they told me the longest time possible and then anything sooner would have been great.  I walked in one morning thinking we were leaving in a day or two and the nurse nonchalantly says maybe this weekend and I lost my shit.  Kenny was parking the car so I was alone.  It just through me over the edge to have it pushed back again.  We didn’t have clothes, we had to buy underwear at Target, like what the hell.  Then the nurse told me he can sense that I’m upset.  OK LADY, That is not helping me feel better either! Ugh.  All the staff was great, but I was like don’t tell me a date until it is a HIGH likelihood that is happening.  For the love of God.

Overall, like I said, we were incredibly lucky.  There were moms who went back to work because their babies were in the NICU for so long.  They would come in as we were leaving with their cooler of milk dressed in their work clothes.  There was another baby in our nursery who coded while taking his vitamins. After a couple of minutes of chaos, we hear the nurse say “Well, welcome back sir.”  Terrifying.  Can’t imagine what that mom was going through.  Another baby was readmitted after her and her twin were released, and the parents didn’t listen to the no visitors rule, ended up being treated for meningitis.  All in all our NICU experience was positive and on the low scale of risky.

But for first time parents, especially after everything we had been through to get to this point, that shit was scary as hell anyway.  As was taking him out of the hospital right into a 4+ hour drive back to Massachusetts.  NOT the chillest road trip I’ve ever been on.  But an amazing feeling to be wheeled out of the hospital 10 days later with baby in the baby carrier and headed home.  Who knew when we picked the name Liam, that the meaning Strong Willed Warrior would be so on point!

Up next on the blog, the first few weeks home, or as I like to call it Groundhog Day.