The NICU & You: When You Go Home Before Your Baby
This week, Amalah and Alexa discuss preemies, extended hospital stays, casseroles, stupid relatives and Google University.
This week’s update was made possible with a heapload of help from the amazing Alexa Stevenson of flotsamblog.com. Amazing, I tell you! We interwebmailchatted about her postpartum experience as the mother of a micropreemie, complete with a pretty substantial stay in the neonatal intensive-care unit. Being sent home from the hospital before your baby is a whole different ballgame, but Alexa has some awesome advice for coping — or for helping a friend or relative cope — with a baby in the NICU.
Q. Okay, just in case there are a few readers who are not familiar with your story (FOR SHAME, FEW READERS), hit us up with a little background: How long was your daughter in the NICU? When did you get to go home?
Simone was born on February 8th (a bit over 25 weeks, 1 lb, 11oz) and came home four days before her due date of May 17th, so she was in the NICU for…yeah, a long time. 96 days. I went into the hospital for bedrest in late January, in the middle of winter, and we took Simone home just before summer began, so I essentially lived at the hospital for the better part of four months.
Q. What was YOUR first night at home like, especially being sans baby? (And I apologize for the ObviousDuhVille nature of this question. I’m like a newscaster asking someone “So how do you FEEL?” while their house is on fire in the background.)
Leaving the hospital without your baby feels painful and wrong on a physical level. Probably there is some specific hormone designed to make you feel like dying if you leave your baby postpartum, originally meant to discourage ape-mothers from leaving their offspring somewhere and going shopping or something. I lost. my. shit. when I left the hospital, even though I knew it was the best place for Simone to be.
Technically, I didn’t have to leave — my NICU had all private rooms, and in each there was a breast pump (genius) and a fold-out couch. But the nurses really encouraged me to go home because with the constant beeping and vitals checks and such, no one gets any sleep in the NICU, and I WAS recovering from major abdominal surgery, and wanted a night in my own damn bed which I hadn’t seen in more than two weeks. Our house was less than 5 minutes from the hospital, so we left, and that was the best possible decision. I got rest, and I got out of the hospital. (More on that later).
I did, however, call the NICU in the middle of every night when I got up to pump, and I would highly recommend this, even if you feel like a pest doing it. You are NOT a pest. It is your baby, and you can call anytime you want. It also gives you a heads up on what is going on so you don’t walk in to a surprise the next morning. (The one night I didn’t call, something happened, and walking into Simone’s room to find it full of chaos I wasn’t expecting but would have known about had I called SUUUCKED).
Q. How did your friends and family help you guys out?
My mother, who lives in Switzerland, somehow managed to organize a sort of Scott and Alexa feeding schedule, whereby various friends and relations would take turns bringing us dinner, which was amazing, and probably kept me sane, not only because it ensured that I actually consumed food at some point, but because it meant I got to speak to “outside” people. For a few minutes every evening while a cousin, etc. dropped off takeout, I would make jokes and small talk and remember the world outside my dark little NICU bubble.
I appreciated jokes, and congratulations (so many people forget that a BABY was born, after all), and comments about how beautiful Simone was (even if privately they were horrified by the tubes, etc.,), and concern, and assurances that I was handling things SO WELL, which everyone kindly said, but I did not feel at all, especially when the postpartum hormones started flowing, because let me tell you that that little baby blues crash about a week PP is NOT HELPED by your offspring being in a hospital.
Q. Food, jokes, and congratulations. Check! Now the opposite question: what didn’t help? What should friends and family of a NICU baby NOT do or say?
It was fine to ask questions, but one of the most exhausting parts of having a baby in the NICU was the constant barrage of phone calls and questions about Simone’s condition, and well what does that MEAN? and either I would be faced with explaining something very complicated to well-meaning but clueless relatives OVER and OVER, or I would just have to keep repeating “I don’t know,” underscoring to myself how uncertain Simone’s condition was and ultimately making me cry.
I highly suggest anyone with a baby in the NICU get themselves a website to post updates for family. Most hospitals have partnerships with a site like CaringBridge.org and someone should be able to help you get one set up. There is probably a whole “family resource center,” or similar, with computers and helpful people who are just dying to shower you with resources. In my case, I already had a blog, which I had studiously kept secret from my family until this point, when I was so overwhelmed by the questions that I finally snapped and said “I HAVE A BLOG! CHECK IT!”
That’s another thing: expressing concern = good, crying to me on the phone about how scared you are = BAD. It puts the parent in the bizarre position of having to comfort someone ELSE about their own critically ill baby, which is just exhausting and frankly a little tacky. Butch up, relatives!
And DO NOT EVER SAY “She’ll be fine!” because you don’t know that, and it may cause the mother to cold cock you with an ambu-bag. Stories about other preemies who have been fine, however, are accepted.
Q. How many hours a day did you spend at the hospital? What about your husband? Looking back, was it about right? Too few? Too many?
I got to the hospital early in the morning (I want to say around 8?) and left about 4:30 or 5:00. For the first couple weeks my husband either came with me or came later in the day, around 11:00, and after he went back to work he stopped by in the afternoons. Weekends we were both there all day.
Later, I did take the occasional morning off, or left in the afternoon to do something (a pedicure or Target or a movie with Scott), which was great, but early on when Simone was so unstable, I just couldn’t do it. People kept telling me to leave the hospital, but honestly I think being there was good for me, because it felt like I was DOING something, even if all I did was sit there and pump and stare at my baby or my laptop. However, we went home every night and sat on the couch eating our takeout and watching the most mindless thing we could find on TV, and that was essential.
It was also WONDERFUL when friends took us out for dinner (not least because I hadn’t had a drink since August), and we did that a whole lot. Technically I could have stayed overnight in the NICU, even showered there, but I think that would have ended very badly, with me a gibbering mess. This way, I got a break every night, so that I could be there all day long and be present. And remember, if you get sick, you’re not allowed in the NICU at all — you have to take care of yourself, or better yet, put your partner in charge of taking care of you, because frankly you probably suck at it. People brought us snack-y food to eat in the NICU, which was great, because I was too afraid of missing something to go to the cafeteria.
Scott and I handled Simone’s time in the NICU completely differently, especially in the beginning. He didn’t want to watch the procedures, I wanted to see everything, however awful-looking. He mostly slept all day on the NICU couch, while I stared at the monitors and tried to help the nurses with Simone. For me, the hospital actually came to feel like home, because that was where my daughter lived. We had very different tolerances for the hospital, and that is fine — not everyone is helped by being there all day, and needing to get away does not make you a bad mother. It makes you a smart mother who knows how to take care of herself so that she can be there for her baby when he/she needs it.
Q. Possibly a dumb question, but how did Simone’s NICU stay affect maternity/paternity leave?
Not a dumb question at all. We were really lucky in that Scott got a month of paid paternity leave, and I got eight weeks. He split his paternity leave so that he had some time at the beginning of Simone’s NICU stay, and some time after she came home. Some people go back to work while their baby is in the hospital so that they can have their leave when the baby is at home and not being cared for by a squadron of trained medical professionals.
I decided not to go back to work when my maternity leave ended and to freelance instead, which we couldn’t entirely afford without help from my family, so we were very, very lucky to have that. Of course, I say “decided,” but Simone’s pulmonologist made it very clear that she could not go to day care for the first two years, so the decision was a fairly easy one. I really, really feel for the parents who aren’t that lucky, and I can’t imagine how hard it must be to sit in some inane Best Practices meeting while your BABY IS IN THE HOSPITAL. My freelance career hasn’t exactly bloomed like a thousand roses, so our situation may get more complicated if something doesn’t change, but that’s a whole other story…
Q. Googling medical lingo during a NICU stay: helpful and necessary or PUT DOWN THE LAPTOP FOR THE LOVE OF GOD?
For me, it was essential and sanity saving to understand what was going on, and be able to talk to doctors in their own language in order to trick them into keeping me fully informed (otherwise they have a tendency to gloss over things they assume you won’t understand — I had to specifically say to the nurse/doctor who were talking in low tones “You do not need to whisper. I will not break down. I want you to tell me everything.”
Of course I took this a little far — I (almost) never cried in front of the doctors, because I was so afraid they would stop telling me everything, for instance. But I needed the information, and I needed to know what all the numbers meant (what good blood gas values were, and what Simone’s chest x-ray looked like from day to day, because people rattle off numbers and acronyms like crazy). But surprisingly, the internet was not very helpful. It was great for acronyms and such, but there just wasn’t a lot of information, because neonatology is still sort of bizarrely experimental in a way.
So I had to rely on the doctors and nurses to explain things, and on my wonderful Preemie book I got when I was on bedrest, which I cannot possibly recommend enough (PREEMIES, by Wechsler). Don’t be afraid to ask questions, and if you don’t understand, say so. BUT, like the spending time at the hospital thing, your mileage may vary. Not everyone likes to know everything. My husband was in that camp–he did no research, he relied on me to tell him what was going on, and that was best for him. For me that would have been scarier, but for him it meant he didn’t live and die by the results of every ABG, because he didn’t know what that meant.
Q. What was Simone’s first night at home like? Was there anything about having her finally home that you weren’t totally prepared for?
HA HA HA HA HA! Oh, Amy. Well, the oxygen and apnea monitor and fleet of medications were very intimidating at first, as was getting out of the house for our many medical appointments (seriously, you think leaving the house with a newborn is hard under normal circumstances, try doing it while carrying an oxygen tank). And the first time she had an apnea episode during a feeding at home, where there are NO NURSES, took a good decade off my life. And all of the normal stuff — is anyone ever really prepared to take a baby home for the first time?
But actually, a lot of it was easier because we had three months with training wheels, basically, to learn from the nurses how to care for Simone. So we weren’t as skittish around her as we would have been if we’d held her for the first time, like, the day before. In that way it was easier.
Oh, and another thing that was a total surprise was almost (almost! only almost!) missing the NICU once or twice–the nurses had become our friends by this point, and it had been my routine for 1/3 of a year. It’s actually pretty common to have a time shortly before the baby comes home when you aren’t sure you want to leave. Stockholm Syndrome, maybe?
Q. If someone knows their baby will likely spend some time in the NICU after birth, is there really anything they can do to prepare themselves for it?
Yes! Well, to a point. Part of it, no. But you can lessen the culture shock, so to speak. First of all, get thyself to a bookstore and buy a copy of the PREEMIES book I mentioned above.
Nextly, visit the NICU and/or talk to the neonatologists. I was on bedrest at the hospital and couldn’t tour the NICU because I wasn’t allowed up and about, but the neonatologists came to see me every week and give me statistics about what my baby’s chances were that week, what problems they were likely to face, etc. This was amazing, because it turned out all the statistics I had found online were totally misleading, and Simone had a MUCH better chance than I had been led to believe. I was at a hospital that routinely handled 23 weekers, and their statistics with babies like Simone were very good, and just hearing them treat it like something routine and DO-ABLE helped. Neonatologists, as a whole, are some of the kindest doctors you will ever meet, and they are whip smart, because the process to become a neonatologist takes about a million years, beginning when they are actually neonates themselves, I believe.
Third, bring lotion. It sounds stupid, but you are going to be washing and sanitizing your hands dozens of times a day with harsh take-no-prisoners hospital soap, and you will develop reptilian NICU claws if you do not moisturize. Do it for your baby, because no one likes to be stroked with something akin to coarse sandpaper, especially when their skin hasn’t even finished developing.
Set up a website ahead of time to keep family/friends updated.
Rent a hospital grade breast pump. Trust me.
Once your baby’s born and you’re in the thick of it, get yourself a primary nurse (NICU nurses are often assigned as “primary” nurse to a specific baby, one they then care for every shift). Primaries learn your preemie’s quirks—important when the first sign of infection is often that baby “just seems different.” Our primaries became like family, explaining medical jargon and celebrating Simone’s successes almost as much as we did. It’s easier to leave at night knowing your baby is in their hands. We still keep in touch.
Ask your nurse if you can change your baby’s diaper and take his temperature (this was done every few hours along w/ BP, etc). It will build your confidence and help you from feeling helpless, and on days she’s too fragile to hold it will give you a chance to touch her. Speaking of which, don’t be afraid to ask the nurses to get your baby out to hold, even if it seems like too much trouble (it is a 2 nurse job when the baby’s on a vent).
Which reminds me: you need a healthy dose of chutzpah in the NICU. If a nurse is talking too loudly and it’s upsetting your baby, ask her (politely) to keep it down. Show up for rounds, and if you have concerns, voice them. Doctors and nurses sometimes change from day to day; you’re the constant. NOBODY knows your baby better than you.
Read all about Alexa and Simone (who is now an adorable chubbykins with a knack for unspooling the toilet paper and driving her mama crazy, AS GOD HIMSELF INTENDED) at flotsamblog.com. I would just save yourself the time and start with her archives and read that way, because you know you’re going to want to after an entry or two.
If you landed here but are still pregnant, visit Amalah’s Pregnancy Calendar. You won’t regret it.