Today, I would have been 37 weeks pregnant. I’ve written at least two posts like this in the past, usually detailing third-trimester woes, to-do lists I’m rushing through before baby’s arrival, and the annoyance of having no clothing that fits properly. Instead, this time I have a nearly 10 week old baby in the NICU. I thought I would write about my day as a way of remembering what this time in my life was like. Here goes.
A Day In the Life of a NICU Mom
1:30 AM – My phone alerts me (with the least obnoxious melody I could find) that it’s time to pump. I turn it off in record time so as not to wake my bedmates. I grab the flanges attached to the bottles and manage, in the dark, to attach them to the breastpump’s tubing. The hypnotic whoompa-whoompa of the pump begins and I grab my phone. I read posts on the preemie parenting message forum at BabyCenter to pass the time.
1:50 AM – I unhook, turn off the pump and take the bottles of milk down to the fridge. Drink water, maybe eat a quick snack (waking up to pump makes one unusually munchy). Use the restroom, go back to bed. The one advantage of my sleep being interrupted in this way is the extraordinarily pleasurable sensation of slipping back into the covers.
4:30 AM – Ditto. Whoompa-whoompa. I delete spam comments on my blog and read my favorite blogs while the pump does its thing. I put the bottles and flanges into the fridge. It makes the flanges cold, which is quite… bracing, but it keeps me from having to wash them each time. Who wants to do that twice in the middle of the night?!
5:00 – Back to bed.
7:30 AM – My 2 year old wakes me. She has an internal alarm that goes off at the exact same time each morning. We snuggle for a bit and I pump again.
8:ish – I drag myself out of bed, and go downstairs to see if hubby has made breakfast (most of the time he has). I eat oatmeal almost every day, having left it out soaking the night before. All hubby has to do is warm it, but then he makes grits, eggs and bacon for the early crew (our younger kids wake up at around 7:30, but the boys often sleep late because they go to the NICU with him). My husband usually brings me hot tea in bed every morning, but today he’s running late so I put on a small pot of French Press coffee (he’s a tea guy, I’m a coffee girl. Somehow we make it work. 😉
He updates me on Josiah’s condition, as we haven’t talked since about 8 PM the night before. He visits the NICU every night to give Josiah his 9 PM feeding, and usually gets home around midnight, long after I’ve succumbed to the bed. “Did he have any episodes?” is the biggest question now, as this is the primary thing keeping him from discharge. He has to have 5-7 days with no episodes of bradycardia or apnea. At this point, it’s highly likely that he’ll come home on a monitor and caffeine, since he was unable to be weaned from it yet. (Can’t blame him, can you? See above.)
Ruby, 4, gets up and requests “tea and milk” with her breakfast. She sits at the table and won’t begin eating until all the elements are in place. Exacting high standards, that one. I sip my coffee, open the laptop and start this post.
9:00 – I kiss my husband good-bye for the day then start a load of laundry. I notice he has brought home dirty baby clothes from the NICU. I grab them and spray the tiny onesies with a non-toxic stain remover to get out the vitamin spit-up blotches. (Josiah gets my breastmilk mixed with iron, vitamins and a fortifier made from donor human milk. Called Prolacta, it’s a true miracle for preemies, who require more calories than their termie peers. It helps them gain weight properly and lowers the risk of NEC, every preemie parent’s worst nightmare.)
I hope that by the time he’s home, he’ll weigh enough not to need it, as I don’t want him to have bottles anymore. He will probably still require iron, however, as babies get their iron reserves from the final weeks of pregnancy – something Josiah didn’t get the benefit of.
The nurses have a sense of humor. Biohazard, indeed. One onesie has a huge poop smear all the way up the back.
9:12 – The big kids are up and cuddling Victoria, scrounging around for breakfast, brewing tea. I head upstairs to dress Vic, change her diaper, watch her brush her teeth. I jump on my rebounder for a few minutes. (I bought it after reading that NASA published reports saying that rebounding is a great exercise for recovering from bed rest.) Clean myself up, get dressed.
10:00 – Pumping again. I call the kids to my room and we hold a quick family meeting to discuss the new laundry schedule. Normally, we would begin school now, but a consignment shop has just opened less than 2 miles from my house, and there are a few things I need. Nesting, and all that. I want to get everything done before Josiah is home. I don’t plan on leaving my house for 6 weeks after he is discharged, and I won’t be taking him anywhere except to the pediatrician’s office until spring, when RSV and flu season are over. (Viruses that would be mild in a healthy person can kill a preemie, and when a young preemie gets sick, he often ends up back in the hospital.)
11:32 – Back from the consignment shop, with new dresses, shoes, and a baby swing in tow. I remind everyone to wash their hands (I’ve never been a germaphobe, but having a preemie has turned me into one. I carry hand sanitizer with me and have ramped up my own handwashing habits.) I start making lunch while the girls model their new clothing for me. The 2 and 4 year olds are hungry and fighting. There’s some pushing involved.
It’s at this time of day that I experience that familiar anxious, panicky feeling.
It feels like a corkscrew twisting in my chest, making it hard to breathe. I miss my baby, it seems like cruel and unusual punishment, and the twisting won’t begin to unwind until I’m driving to the hospital to see him.
11:44 – Lunch. I put grilled cheese sandwiches, orange slices and mustard on the table and call everyone, put Vic in her booster seat. I’m feeling uncomfortable so while they eat, so I go pump again.
Pumping sucks. I hate it. While I’m very grateful for the technology that allows me to provide my milk for my newborn, the pump represents everything that is unnatural and wrong about this situation, about being separated from my precious baby. I hate the hard plastic-ness of it. I hate the mechanical replacing the biological. I hate how my breasts hurt for two months (until I learned to lubricate the flanges with coconut oil, a tip I learned online – I use my CapriClear spray-on coconut oil. Ladies, if you are pumping or know a pumping mom, GET some! Thank me later!).
But, there is one good thing about pumping: it acts as a virtual newborn that needs to be “fed” every 2 hours. While I don’t yet have my baby, pumping has helped me integrate the needs of a newborn back into my life. I’ve made changes to my schedule to accommodate that, so once he is home, there won’t be a big adjustment in our routine.
12:37 – The kids have all started their schoolwork. I help Sadie with multiplication. The little girls play in their room and listen to Pandora on my phone. Lion King is the soundtrack of choice. I vacuum up the box of raisins that “nobody” spilled all over the floor. When I get back from the NICU it will be too late for me to cook, so I brown some stew meat and then throw it in the slow cooker along with red wine, garlic, onions. Stroganoff. I’ll add the sour cream just before I serve it. Suppers have been very simple around here lately and I use my slow cooker almost every day.
I notice it’s sunny out so I send the kids out the door to play. Caleb is singing and playing “More Than a Feeling” on his guitar. I hear screaming and dash outside. One of the neighborhood kids is pretty happy about having found a passel of playmates. There is a collection of kids, mine and not-mine, in the driveway.
I go to the laundry room and inspect each of Josiah’s tiny little pieces of clothing to make sure the stains have come out before I put them in the dryer. I can’t do much for my son other than pump, visit him once a day and do his laundry, so you’d better believe that he’s not going to wear stained clothing. After I examine them and see that they’re to my liking, I throw everything in the dryer and start it.
I try to stay busy.
If I stop doing long enough, I might start feeling all the feelings. But handling Josiah’s clothing overwhelms me with sadness and longing. I blink back tears.
Victoria finds me and begins whining which is a departure from her normally sweet disposition – she’s tired so I scoop her up and we cuddle in bed until she falls asleep. Meanwhile Ruby comes in and out of the room to talk to me and ask me, “Mom are you leaving yet/when are you leaving/ is it time for you to go yet?”. The reason she’s eager for me to go is because this is the time that I allow her to have screen time. She’s eager to watch Tarzan.
I clean up random detritus around the living room and kiss everyone goodbye. Sadie is doing Bible studies in her room. Ilana is on the computer doing math with Khan Academy. Julien is during I’m not sure what, and Caleb is putting in a movie for Ruby.
2:00 – Before I leave for the NICU I check to make sure I have remembered everything: pump parts and breastmilk, Josiah’s clean laundry, my parking pass, nipple shield, charged up phone.
Getting into the car, the twisting pain in my chest finally starts to unravel and I feel like I can take a deep breath. I’m going to be seeing my baby soon.
I feel guilty at leaving my little ones in the care of their older siblings because no one is coming by to help today, but I quickly dismiss that thought. I think my children are learning some very valuable things in this experience, even though it’s been stressful painful and difficult for all of us. For instance, the big kids have all gotten closer to my 4 year old. I think that the act of caring for her and having to do more things for her has made them have more affection for her. My children out of necessity have become more independent in their studies because there is very little time for me to be involved. I see this is a good thing, at least for now.
All the children are learning that in a family, everyone sacrifices and pulls together to get through a difficult time. I think they’re learning some important life skills. At the very least, my sons will be amazing husbands because they know how to take care of babies, how to entertain a preschooler, how to cook basic meals and do household chores. (Future daughters-in-law: you’re welcome.) This is true of any large family, but especially right now – my kids are learning to serve one another. My 9 year old spent an hour the other night teaching the four year old letter sounds and phonics.
I have a coupon to get a free item at Starbucks so I swing by for coffee, ice water and an oatmeal cookie to hold me until supper.
I’m going to see my baby.
I try to make my daily “commute” as productive as possible. I listen to Bible readings, podcasts, French videos. Today I turn on NPR and sip my coffee.
I follow the same routine every time. I started doing that because in the first couple of weeks after Josiah was born, I was in such pain, exhausted and in an emotional twilight zone. I had to develop a routine so that I wouldn’t forget something important. I take the same bag with my gear in it, take the same route to the hospital, park in the same parking spot the parking deck. I always use the bathroom before I go into the NICU because if I don’t, inevitably I have to go while I’m sitting there holding my baby and if I put him back in the crib I have to go see the hole hand washing routine again.
I dread walking into the NICU. It’s so dark inside. They keep it this way so it’s not overstimulating for the babies, more womblike. I should have taken a few minutes to sit outside and watch the kids play. By the time I leave the NICU it will be dark out. But if I had done that, I would not have had time to start supper.
There just isn’t enough time anymore, there is no margin. I hate the busy-ness of my life lately. I have no social life, I barely squeeze in a few moments of exercise each day, I no longer enjoy getting up early in the morning to have time to myself before the children wake up. My personal goals have been thrust a side. Sleep is a bigger priority right now.
Parking decks creep me out so I always park at the top. I grab my bags and head for the stairs. Gotta squeeze in exercise where I can these days.
I use the bathroom and brush my teeth (can’t have coffee breath when I kiss my baby).
I check out my profile in the mirror. It normally takes me 6 months to get back into my regular clothes, but they’ll probably fit me in a few weeks. I didn’t experience my third trimester. But I would rather have a gut for the rest of my life than have given birth 3 months early to a medically fragile child.
Tears. Crap. My eyes are bloodshot again.
The long walk down the hospital corridor.
Every day, I remind myself that one of these times will be the last.
The NICU is like a minimum security prison. I have to pick up a phone that rings the nurses (a security camera is behind me) to be buzzed in.
I step into the scrub room and first squirt sanitizing foam on paper towels to clean my phone in case I touch it while inside. Then I do the straps on my purse.
Finally I step up to the large sink, rip open a sealed soap-infused brush, roll up my sleeves and begin carefully scrubbing up to my elbows. I always glance at the clock on the wall to make sure I wash for 3 full minutes.
Once a visiting grandmother came in after me, washed up to the wrists for a minute, and walked inside. It made me so angry. If she isn’t willing to follow these very important safety instructions clearly posted on the wall, what other risks will she take with her grandchild’s health? What other rules will she disregard?
I glance at my arms, red from hot water and scrubbing. I can still see the scars from multiple IV sticks, bald patches from medical tape. It seems like a lifetime ago that I lay in a hospital bed, leaking amniotic fluid, in constant terror that I would go into labor at any moment.
I don a fresh hospital gown and walk into the NICU. The nurses, anticipating my arrival, have set up two privacy screens around Josiah’s bed for me, creating our little “apartment” so I can pump and breastfeed him in privacy.
I walk inside the screens and surprise! Josiah no longer has a feeding tube down his nose! I’m thrilled at this development.
His nurse comes over and says that his 12 o’clock feeding went well, that they “snuggled for a long time afterwards” and that she “didn’t want to put him down“. She tells me everything that’s happened since I saw him last, and that she’s “so proud of him“.
If it wasn’t for the incredible people caring for my son, I would have cracked up long ago. They don’t just do their job with skill, they do it with love.
Unfortunately, he had an episode this morning which resets the one-week clock. I was so hoping that he could come home on the 1st but it isn’t to be. Wimpy White Boy Syndrome strikes again.
I change his diaper (a huge poop – he always seems to save them for me!) while she takes his temperature. I wash my hands again. He wakes up and is clearly hungry, trying to eat his fists while fussing at me.
We sit down in the rocking chair. It takes me about 10 minutes to get him to latch on (at this point, he can only do so with the aid of a nipple shield but I’m for breastfeeding, not nitpicking). I squirt drops of milk on his lips to remind him what we’re doing.
Once he gets going, he nurses well for about 15 minutes before falling asleep. It’s taken us weeks of practice to get to this point. I am so thankful that, after exclusively nursing 6 babies and volunteering as a La Leche League leader for several years, at least one of us knows what they’re doing. If this was my first experience, it would be very discouraging.
I decide to suction his nose a bit. This makes him mad, but he needed it, and it wakes him up so he’ll nurse longer. If he doesn’t feed well, the nurse will insist that he get my milk through a bottle to make sure he gets enough calories. So far I’ve been able to avoid this. I don’t mind his daddy giving him a bottle, but I don’t want Josiah to know that bottles and mommy are a thing that can happen, so I always ask that they tube feed him after we nurse. Lately though, he’s been feeding well enough not to need anything else, which pleases me greatly. I’m also thankful that he seems to have no nipple confusion.
He’s done, content and with milk running down his chin. I put him next to my chest, skin to skin, and settle in to cuddle him for an hour or so.
I look up at the clock and it’s nearly 5. How did that happen!? I just got here! My boys call this phenomenon “NICU time”. An hour here feels like 10 minutes. I dread putting Josiah back into his bed. Often, he cries and I have to pick him up and get him back to sleep so I can sneak out. I can’t leave him crying or awake. It kills me inside.
While Josiah naps, I chat with the nurses. As eager as I am to never see this place again, I know I’ll miss these people who have been such an important part of my daily routine.
Josiah nurses again for a few minutes. Dessert. This makes me happy. He’s starting to act like a newborn: nursing a little, napping a little, nursing a little. Finally, something normal about mothering him. He falls back to sleep and I gently place him back into the baby swing the nurses have for him.
Goodbye little one. I miss you already.
5:36 – Head home. I swipe my parking pass through the meter – it’s one perk of being a NICU parent. If it weren’t for this pass, Zeke and I would be spending $11 a day on parking, which would have amounted to $759 so far. Driving back and forth to the hospital, we’ve gone from filling the tank in my car weekly to once every three days.
6:12 – Supper with my family. Caleb has cooked rice and broccoli to serve with the stroganoff and everyone is sitting at the table waiting for me.
6:38 – Pump. My 4 year old has left flowers she picked in the yard for me on my desk.
At 6:55, the hospital calls. I see the number on my phone’s caller ID, and it makes my heart skip a beat every time. Even though Josiah is doing well, there is the constant ghost of death that hangs over the consciousness of a premature baby’s parent. It’s not just me, I’ve heard other preemie parents express this same thing.
It’s only a reminder call that I need to renew my breast pump’s monthly rental (their timing is oddly … appropriate). My husband calls them back with his debit card number (it’s true love, because doesn’t every man relish the idea of calling a stranger and saying, “I need to renew the breastpump“?).
7:01 – Work on this blog post. Try to convince Victoria to get into the bathtub, to no avail.
8:17 – Sadie and I do her Bible study. Zeke comes in to get the bottle of milk I pumped and say a prayer with me. He’s leaving for the NICU now. I won’t see him again until breakfast.
8:31 – Victoria invites me to a “tea potty” with her and Ruby. Pretend-eating of plastic food commences.
8:44 – I cut the party short, remembering that I need to wash cloth diapers. Ilana and I fold laundry and talk. My other toddlers were potty trained by this age, but Victoria has no interest in the subject and frankly, I don’t have time for it until Josiah is home. I’ve never had two babies in diapers before.
I tidy up for a few minutes. Julien and I make a grocery list for tomorrow’s shopping.
9:10 – Make a snack for Ruby, then brush my and the little girls’ teeth.
9:38 – Read a story to the girls. By the end, all the kids are gathered in my room. We read another book.
10:07 – I send everyone off to bed. Check my phone to make sure my alarms are set, and turn off the lights. My last thoughts are of the baby. I miss him. I pray that he matures so that he can come home soon. I’m pretty sure I fall asleep before I say amen…