Our Journey in the NICU of Northside Hospital

They say every pregnancy is different. I guess they are right. This is the story of our second pregnancy that ended abruptly in the NICU of Northside Hospital at week 30 and 6 days.

Our 2nd pregnancy

This post is meant as sort of a conclusion of my earlier posts (Pregnancy: Don’t Freak out About Low PAPP-A results, Pregnancy can be a BUMPY Road and Lessons Learned: Fetal Tests and Checks During Pregnancy) dealing with our second pregnancy. It’s dedicated to all those parents out there who either expect their baby to be born prematurely or who have a baby in the Neonatal Intensive Care Unit (NICU) or Special Care Nursery, as Northside Hospital calls it.

Kathy and I read “Baby 411” when she was pregnant with Isabella and I remember that we intentionally skipped the part dealing with preemies. We never figured that soon, we would be having a premature baby.

Someone moved our cheese

Fast-forward to December 28th, 2015. During a “routine” ultrasound (routine considering the situation Kathy was in) we were told by the Perinatal specialist that he recommends immediate delivery via cesarean section. We still had 8 weeks until our due date and Kathy and I will never forget the feeling in the pit of our stomachs when we processed that statement. It felt like tears were getting in line behind my eyeballs, ready to storm out. But somehow I managed to keep them from pouring out. My wife did notice however that I suddenly became a bit “jumpy”, a sure sign that I was nervous.

C-Section and other surprises

Surgery was planned within the hour but thanks to a cookie Kathy had for breakfast we got delayed until 1:30pm. Everything felt surreal as we were brought into the C-Section waiting area. Shortly after 1pm the anesthesiologist came to place an epidural and I scrubbed up.

Then we were brought into the OR and in less than 15 minutes Lucas was delivered by Dr. Garcia. Weighing in at only 992 grams (2lb 3oz) he looked nothing like what we expected our baby-boy to look like. He did however express his displeasure for being forcefully removed, from what he knew as home, by screaming his head off. That was actually a pleasant sound as it indicated that his lungs were somewhat functional.

Neither of us knew what to expect

A team of neonatal specialists (led by Doctor Drohan, who incidentally looks like Kristanna Loken in Terminator 3, as both Kathy and I noticed later) immediately took care of him and made sure his vital signs were stable. He didn’t need a ventilator but was put on oxygen using a so-called CPAP to help keep up pressure in his airways. His APGAR score was 8 and 9, which was surprisingly good compared to the 2 and 9 our full-term daughter had.

NICU: And so our journey began

While Kathy got stitched up, I followed the neonatal team up to the NICU, where Lucas was placed in what would become his home for the next couple of weeks: a fully spec’d out and air-conditioned incubator with built-in scale, called an isolette. I wouldn’t have been surprised if it had WiFi too.

Lucas’ incubator

The NICU at Northside Hospital

The NICU is a busy and interesting place with beeping monitors everywhere and nurses roaming around to constantly check on all the babies. We didn’t know anything about what to expect in a NICU. In retrospect we should have read the book Preemies, which we only started reading much later into our NICU adventure.

But after a few days you get the drill and into the routine. Nurses are on 12 hour shifts (7 to 7) and work for up to 3 days a week, often on consecutive days. Our baby gets fed and cared for every 3 hours at 5, 8, 11 and 2. You learn what the numbers and waves on the monitor mean and you breathe a sigh of relief when the alarm going off is not your baby’s but that of a baby next to yours. You’re supposed to stay close to your baby’s incubator and not be curious about what’s going on at the next one, but you can’t help but notice other babies’ alarms showing on your baby’s monitor. Over time you learn the names and pod numbers of your neighbors and you kind of build a relationship with those babies (or at least their pod numbers and names) — even though you may have never gotten a good look at them. I still remember some of the names that we shared Pod F with on the second floor and I felt especially bad for a baby next to us, who appeared to be in more critical condition than Lucas was.

I don’t know what happened to any of the babies we had as neighbors, but given the incredible track record of Northside Hospital, I can only assume they’re doing well. Weeks later we met one mom whose name I remembered from our days in Pod F at a NICU parents meeting. She confirmed that her baby was doing well and were relieved to hear that.

NICU Level 2 vs. Level 3

The 2nd floor at Northside Hospital is a Level 3 NICU, where most, if not all admissions arrive. We spent only a few weeks at the 2nd floor before being transferred to the step-down unit (Level 2 NICU) on the 7th floor. Those few weeks on the 2nd floor are often the most critical ones because you don’t know yet how your baby is and will be doing. Fortunately for us, Lucas was doing really well and didn’t have any major complications. He came off oxygen fairly quickly and started gaining weight after the expected initial weight loss. Besides weight gain, and getting off oxygen, the next milestone was his head ultrasound to make sure he didn’t have any intraventricular hemorrhages. Fortunately the scan came back clean and so he was moved up to the 7th floor.

Later on the 7th floor, Lucas’ eye scan for retinopathy of prematurity (ROP) was his next milestone. Fortunately also that scan came back without any major issues other than confirming that his retina was still immature.

So many questions (and answers)

How much time to spend in the NICU?

That’s the million-dollar question I’m sure all NICU parents ask themselves at some point. The bad news is, I don’t think there is an easy answer. Here is what has worked for us, based on the following circumstances: I work full-time, my wife runs the household full-time (with support from her mom at the moment) and we have a two-year-old toddler (Isabella) at home.

Staying in the NICU 24/7 was out of the question for either one of us. So we decided to split up and visit Lucas in the NICU once a day each. Kathy would go in the afternoon, while Isabella was napping and I would go at night, after Isabella went to bed. That way, she wouldn’t get the impression that we’re in the hospital all the time and giving her less attention.

We would stay for about 60–90 minutes, enough time to change his diaper, feed him and do an hour of kangaroo-care (skin-to-skin). Sometimes, especially on weekends, we would both go at the same time and stay 90–120 minutes. That way, we could enjoy some “normal” time in the evening, have dinner together or watch a movie.

Kangaroo care or skin-to-skin

While reducing the risk of our toddler getting jealous, our cadence also allows us to keep up a somewhat normal life. We heard from other moms, who spend most of their time in the NICU. After a while, they started hating that place and got frustrated. I don’t think that makes any sense. Like they say in an airplane when the oxygen masks drop down: “Adjust your own mask first before helping others”. That sounds harsh but I firmly believe that I can be the best parent I can be (for a preemie or otherwise) if I’m somewhat well-adjusted and happy. I don’t see myself being the best I can be when I’m frustrated, desperate, sleep deprived or otherwise unbalanced.

Plus, there is only so much you can do with your baby (especially a preemie), who can get easily overstimulated and is supposed to sleep in peace most of the day.

But whatever you decide works for you, don’t feel guilty if you can’t spend as much time in the NICU as you want or thought you could.

The NICU is horrible and I can’t stand it anymore

For us, quite the opposite is true. Well, we certainly wished Lucas was born full-term and didn’t need to stay in the NICU at all, but that wasn’t under our control. Now that he is in the NICU, we actually embrace the opportunity and experience. I can’t tell you how much we learned about perinatal and neonatal medicine that we never thought we would learn. It has certainly widened our horizon and I’m glad we got this opportunity, given the circumstances.

Also, in one of my last posts I wrote about gender disappointment. Since we learned that our second pregnancy would take a slightly different route than we had originally planned, gender really has become a non-issue for us.

Don’t worry about everyone else

It’s easy to compare your baby to the one “next door”. Don’t! You don’t know the circumstances that led to another baby getting admitted to the NICU, so you could be comparing apples to oranges. And even if other parents tell you how great their baby is doing, making you feel like your baby isn’t progressing fast enough — forget about all that. Some parents tell you what they wish was true and some babies may in fact be progressing faster than yours. For example, we were told that black girls progress faster (and thus get released sooner) than white boys. Well, we happen to have a white boy and I’m OK with that. Can you imagine the discussion I would have had with my wife if we had delivered a black girl? :)

We have heard parents get upset, frustrated or depressed when they see other babies getting discharged before their own. That’s the same as getting upset when you find out that your neighbor drives a nicer car than you do. Jealousy is ugly, that’s all I can say about that.

The last few days or weeks feel like an eternity

Nurses keep telling us that the last few weeks or days in the NICU feel like they would never end. What they mean is that once your baby is stable and has become a so-called “feeder and grower”, it may feel like an eternity until he finally meets all criteria to be discharged. For Lucas that means no more bradycardia (which he hasn’t had in over a week) and taking all feedings by mouth (bottle or breast). As of this writing, he takes 4 feedings by mouth and it’ll be a couple of more days until he will have enough stamina to take all 8. Neither Kathy nor I are biting our nails, nor are we counting the hours until his discharge.

Of course we want him to come home but we are also acutely aware of the fact that he is living in what appears to be an all-inclusive hotel right now, giving us time to properly prepare for his arrival, while he is well taken care of.

Who moved my cheese?

I would say we have had a fairly smooth ride so far, considering the circumstances: Low PAPP-A, weekly monitoring, 3 hospital admissions (over Thanksgiving and Christmas), cancelled travel plans, emergency C-section, premature baby and what will probably end up being at least 6 weeks in the NICU.

While in the NICU Lucas had some intermittent drops in weight and he was longer on caffeine (to counter episodes of apnea and bradycardia) than I expected. And while he is a good breastfeeder, his skills on the bottle are still modest at times.

We live only about 25 minutes away from the hospital (with no traffic) and we have had a lot of help from my mother-in-law.

So I guess we could have had it much worse. But we could have had it much better too — especially when compared to our first pregnancy. At the end it doesn’t really matter how good or bad you have it as long as you learn to deal with whatever life throws at you. Remember, someone or something will move your cheese and it is up to you how you respond to it.

Conclusion

Having a baby in the NICU wasn’t your choice (I can only assume) and there isn’t much you can do to change that for now. Worrying to a point where it makes your life miserable doesn’t make any sense. Instead, embrace the experience, learn what you can and know that nobody can take that experience and those special memories away from you. It’s something you and your baby will share for the rest of your lives. Or as the parting CEO of Delta Airlines, Richard Anderson, liked to say: “Sit back, relax and enjoy your flight”.

I’d love to hear about your experience in the NICU and would like to say special thanks to the awesome staff at Northside Hospital Atlanta!