Eleanor, Tobias and Callista, lined up for a photo op not long after we got home from the NICU.
All three of our sweet triplets were discharged from the NICU on the same day. Born at 28 weeks and 1 day gestation, our trio spent 9 weeks and 5 days in the NICU – we came home on their 67th day of outside life.
The transition from the NICU to home has gone as smoothly as we could have hoped. Rob is spending some time off work to help us all get into some sort of rhythm. With these three, that rhythm will last approximately two days before it changes. I’ll call it a win as long as we can roll with the changes and maintain good physical and mental health.
So far, I’ve washed four sink-fulls of bottles (and just filled the rest of the dishwasher load with a bunch of bottles I didn’t feel like washing), I’ve done two loads of baby laundry, and we’ve changed an unknown number of diapers. We’ve eaten all our meals and have even managed to shower and clean.
We’re either in some sort of honeymoon phase or we have superhuman powers.
As I type, at 3:30 a.m., Callista is stirring in her crib. She’s pretty much on time to demand her next bottle. Eleanor started stirring early, so she’s been snoozing on my chest for the last 30 minutes or so. I propped her on my chest while I pumped using both hands till I gave up and held her with one hand while I pumped with the other. I may need to invest in one of those hands-free devices finally. I’m so cheap that I have been avoiding it.
And Toby, you ask? He has maintained the mellow demeanor he displayed in the hospital. He only fusses when he really wants something and is often patient enough to quietly wait while his dramatic sisters act as though the world will end if they don’t get held/fed/changed/looked at soon enough.
I have a few new blog entries up my sleeve, so stay tuned. I’ll find time at some point to write a not-selfish (I really needed that, though) entry about how I survived our time in the NICU. I also want to write about the baby-type things we’ve used to this point – mainly the things we’ve loved (hi, Emmy! I didn’t forget to write about this for you!). For instance, this grasssy bottle-drying rack is the bees’ knees!
On one hand, I’d love to blog my brains out about my trio and all the cute and crazy things we live through each day. On the other, I want to keep that to ourselves. Part of me feels like I’d be unfairly exploiting their lives in some way. We’re all embarrassed by the stories of our young lives – especially when we’re teens. I can’t imagine knowing my mom told everyone about how I pooped a fountain and got it all over my isolette in the NICU. (It totally happened, but I’m not naming names.)
Hungry baby calls. Peace out, homies.
As we near the end of our NICU stay, I find I’m needing to remind myself how to survive. Yes, it’s still a struggle, even here on day … 63? 64? Something like that.
In the early days, I had a lot of time to think, pray and focus. Now, I am on the move for most of the day – wake, pump, household stuff, drive, get updates, pump, visit, temperature, diaper, feed, pump, eat, pee, temperature, diaper, feed, pump, eat, pee …
You get the idea. What free time I do have is spent on a smidge of social interaction – just enough to keep me from going mute or at least only speaking in “Shhhh, shhhhh, shhhhh” language.
You’d think by now that survival would be on auto pilot, but I realized tonight that it isn’t.
We’re on a countdown. What happens near NICU graduation is the doctors review charts and count ahead the number of days that, should the baby have no issues, it is safe to go home. “Issues,” in our case mean apnea and bradycardia events and/or trouble maintaining a healthy level of oxygen saturation. If an event occurs, the countdown is reset to X amount of days from that event. Anything that happens while the baby is sleeping earns that baby another 7-8 days in the NICU. Situational events, such as events caused by choking, refluxing or pooping (it’s hard to poop and breathe!) are up for debate on how long the baby has to stay. I’ve heard anywhere from 2-5 days after an event.
So.
We had a date, and that date got moved. All three babies had events. We’ve had our new date for a few days now and have been event-free. Till today.
Callista had a brady after she ate this afternoon. I haven’t talked with a doctor to see how much this will set her back (if at all – the jury is completely out), so of course I jumped straight to worst-case-scenario thoughts.
Bad idea, Batman.
NICU survival rule No. 1: Don’t assume the possible worst.
Like my pal Van Wilder said, “Worrying is like a rocking chair. It gives you something to do, but it doesn’t get you anywhere.”
Worrying is always wasted energy, but that energy is even more valuable as a NICU parent.
It’s an exhausting gig that spreads you thin in ways you never imagined. If you’re a NICU parent of multiples, just go ahead and assume you’ll feel like ketchup your grandma added water to just so she could use every last drop in the bottle.
If you’re a new parent, you’re not only learning how to parent, but you’re also learning a buttload of medical jargon, treatment information, condition symptoms and prognoses, yada yada yada. Breastfeeding? You’re also learning to pump and feed your sick/premature baby.
You can see how much brain power a NICU parent needs, and all worrying does is eat away at that needed energy.
Worrying not only eats energy, it slows time. If you’re worrying, you’re in that damn rocking chair, watching the seconds tick. If you forget the what ifs and focus only on what’s going on right that second, days will fly by, and you’ll be celebrating 2-month birthdays before you know it.
Which leads me to NICU survival rule No. 2: Take NICU life one moment at a time.
We’re dealing in newborns. Their milestone “birthdays” are marked in weeks, while ours are marked in years. Their lives are concentrated down to a much smaller measurement than what we’re used to. Because of this, things change in the blink of an eye. They can go from so-so to great, from bad to worse or from bad to amazing so fast your head will spin.
If you’re going to be in there a while like we knew from the start, completely ignore the initial discharge goal. We were told to count on the babies’ due date, should all go well. We heard it, we knew it, but we told people when asked that coming home near their due date was a guesstimate, but it was completely up to the babies – could be sooner, could be later. We’ll worry about that as we get closer.
Now that we’re so super close, I’ve done a bad thing by letting myself forget rule No. 2. It’s wretchedly hard, though, to not look forward to a day only a few days away, especially when you’re in a frenzy at home trying to prepare for that day.
I’ve gotten so focused on Discharge Day and all the prep we’re doing on our end that I’ve written off all the things that can happen between now and then.
For instance, the babies had their 2-month vaccinations on Friday. All three refused to eat for at least one feeding. They were sluggish. They choked when they did eat. They ate only a fraction of their average. They acted as they had a few weeks ago, and I had visions of feeding tubes being replaced, oxygen cannulas going back on – basically regaining the equipment they had to match their behavior. Within a day, they bounced back, and my fretting was for nothing.
Babies are fickle, and they are going to change. They’re going to cycle through good and bad, and they’re going to jump ahead as well as fall behind. Predictions are impossible – even those predicting discharge – and, while it’s hard to do when predictions are needed for preparation, it’s best to ignore the predictions and take each moment as it comes.
Long before discharge was even up for prediction, reminding myself to live life in moments saved my sanity a number of times. Like I said, babies’ short lives to this present second are so few that each moment is huge. Many NICU parents know the moments (both long and short) in which you face a very real fear for your babies’ lives. The moment that determines life or death is often just as long as the moment that determines a clean or dirty diaper.
Hours after Callista’s bradycardia event, I broke down in tears. She may need to stay longer. We may have to split our family even more. Then I realized how much time is between now and then and just how many opportunities we have for more setbacks, from one or all three babies.
That thought simultaneously comforts me and sends me into panic mode.
It’s during those times that I need to remind myself of NICU survival rule No. 3: Time in the NICU may seem to last forever, but it will someday feel like a tiny blip on life’s radar.
One bad day won’t be as memorable as hundreds of good days. Time will heal stress. It may not heal pain, but it will numb it.
Speaking of time, my NICU survival rule No. 4: Celebrate each milestone.
NICU milestones can be the same as those shared by all parents – the first outfit, the first outfit in the next size up, the first bath, etc. – but there are many unique to NICU parents. For instance, celebrate eating. I cheered for the first 1 mL (1/30 oz.) of milk each baby tolerated, given to them by a tube that ran into their mouths and down to their stomachs. I celebrated just days ago when each baby ate, by bottle, a full 2 oz.
When I say “I celebrated,” I really mean it. I cheer, clap and give kisses for each tiny milestone. You burp? Kisses for you!
Likewise, NICU survival rule No. 5 is also important: Encourage after setbacks.
Setbacks aren’t only hard for NICU parents, but they’re visibly difficult on the babies. They’re often more tired. They can be fussy. They may not eat well, if they eat at all. They don’t like it any more than we bigger folks do. Soothing a baby after a setback and giving them a pep talk to encourage them to overcome it may not do much for the babies except provide a bit of comfort from Mommy and Daddy, but I know it does a lot to me. I’ve never been a coach, but I imagine coaches get a lot out of team pep talks just like team members do. It reassures me that we have a goal and that it’s OK to falter while working toward that goal. We aren’t going to give up. We’re just going to keep trying. And, no matter what, we love each other.
NICU survival rule No. 6: Write a bottom line and focus on it.
They’re alive and thriving.
That’s been my bottom line since day 7. It took me 7 days to get there, and it takes a breakdown sometimes to get back there, but my bottom line puts the hiccups – big and small – into perspective.
Early on, the fact that the babies were managing to continue living and thriving was HUGE. They’re older, stronger and much closer to being mature vs. premature, so living and thriving in their current condition isn’t as monumental as it once was.
Once upon a time, though, living was a miraculous accomplishment.
My trio were born three months early. I was ONE WEEK into my third trimester. Without today’s modern technology and knowledge as well as lots of good, old-fashioned prayer, I’d be a mother with empty arms.
The woulda-coulda-shoulda game gives great value to life in the NICU.
If they weren’t alive and thriving, you wouldn’t face today’s difficulties. You wouldn’t celebrate today’s milestones.
Acknowledge the difficulties, remember the bottom line, and focus on the moment.
NICU survival rule No. 7 had something to do with getting adequate rest, but I’m overtired and have begun to unravel my thought process. I need to stop for a nap, but before I end this in a terribly abrupt manner, I’ll apologize if it makes no sense. I started writing to help myself focus on the big picture rather than just discharge day, and I decided to publish it just in case it helps someone else get over a hump.
Stay classy, Sandy Eggo. Over and out.
That crazy song is going to be stuck in your heads. I’m sorry. Sort of.
Actually, I kind of hope it’s stuck in your heads for a bit. Maybe you’ll think about us just a bit longer today and consider all the other families like us or who never got the chance to be like us.
Us? We’re a family that survived premature birth.
Providing good health and clearance from our doctors, the artists formerly known as PB&J will be joining this year’s March for Babies to raise awareness and support for March of Dimes.
Because of its work, our babies, all three diagnosed with patent ductus arteriosus, didn’t need heart surgery. MoD discovered that PDA can be treated and often corrected with medication. Thanks to MoD, we are surgery-free.
Thanks to MoD, our babies were treated with sufactant therapy to treat respiratory distress syndrome, which they were diagnosed with at birth because of their young gestational ages.
I blogged about the Fight For Preemies less than a week before my own preemies made their early debut. I knew they’d be born early, and I knew they’d have to fight, but I had no clue what was in store for any of us. March of Dimes not only made our fight less difficult, but it made it possible.
On April 30, our family of five will walk 3.5 miles in Charlotte, NC, celebrating each other and being grateful for March of Dimes. We’re going to have awesome T-shirts (and onesies!) with the dancing banana representing the song that was stuck in my head all through my pregnancy and the names of our sweet trio who have opened my eyes to an entirely new world. We’ll be with family, friends and complete strangers, all coming together for future fighting babies.
We’d love for you to join our team. Walk (with us in Charlotte or in the city closest to you), raise money, give money, spread the word – whatever you feel compelled to do. If there’s another team you’ve already joined or would like to join, please don’t feel bad. It isn’t about teams. It’s about the babies.
If you have questions I may be able to answer about how to get involved, either leave a comment or e-mail me at jennandtonica@gmail.com. I may be a bit slow to answer, but I’ll do my best to get back to you soon.
In true NICU style, the light at the end of the tunnel we thought we saw moved further away because of setbacks. We have a new light, but I’m afraid to depend upon it.
On one hand, I’m A-OK with it. I want the babies in the NICU as long as needed. I want to take them home knowing they’re ready and worrying only about normal mom things. I want the doctors and nurses to reassure me with confidence that the babies’ bodies know to keep their hearts beating, to keep breathing in and out – two skills they’ve “forgotten” often, and their main “illness” and reason for being in the NICU.
On the other, I’m so over it. I’m over the nursing issues, wondering if we have a NICU nurse who knows what she’s doing or a floating nurse from a sister unit who isn’t trained to care for preemies. We’re so close to being out the door that our quality of care is sometimes – not so much compromised, but the babies don’t need the NICU nurses as badly as others do if there aren’t enough to go around (our NICU is FULL right now).
I’m over having only one semi-comfy chair that I need to move constantly so the wires connected to particular baby I’m breastfeeding or holding at the time will be able to reach without coming undone.
I’m tired of getting tangled in wires while changing diapers and wrestling said wires out of baby toes in fear of said wires being dragged through poop. I’m wicked slow at changing diapers with all the muck, and I’m tired of my babies crying because I’m taking so freaking long.
I’m done with being homeless. I sleep at home. I shower at home. I spend 10-14 hours a day in the NICU caring for my babies. I eat where food is – never in the NICU and rarely at home. I’d say the NICU is my current home, and it is in many ways, but one can only be so comfortable under such strict supervision.
I’m used to being away from my babies for long periods of time. I don’t want that. I don’t want to be so attached that I can’t go to Target without crying as I drive away, but I want …
I don’t know how to explain it, but I’m tired of being away from my babies being a part of normal life. I know countless working moms leave their babies for hours and hours eventually, many right around the time we’re at right now. I feel like a chump for complaining about being away from them, but I never got my maternity leave. I’ve been away from them since day one. That’s just unnatural.
I’m ready for normal life to be filled with diapers and cries and bottles and piles of laundry. Our normal to this point has been filled with medical jargon, charts, monitors, beeping, wires, tubes, blah blah blah blah blah.
All these things have saved our babies’ lives, and I’m eternally grateful for them, but I’m ready to graduate.
I think.
It’s late. Really late. I should be catching a few Z’s or at least doing something productive – like putting away the laundry that’s been sitting out for more than a week.
Instead, I’m looking back through photos from the last eight weeks and trying to fight back tears.
Eight weeks and two days have passed now since Tobias, Eleanor and Callista made their debut in the outside world. That blows my mind.
The photos from their first days – images that carried me through countless minutes I spent away from my trio and gave me the hope I needed to last until I saw them again – are somewhat painful to see. It isn’t because I think they look sick or too tiny or whatever. It’s because the progress they’ve made as thriving people and the progress we’ve made as parents hasn’t seemed like a huge leap because we’ve taken each moment as it comes. But looking back at the early photos shows me just how far we’ve come in these long-short eight weeks.
There was a time I couldn’t choke out the words to say goodnight because I was afraid it’d be goodbye. I’d cry and pat their isolette, trying my hardest to squeak out some sort of definitive sound so they’d know I was there.
Now my goodnights are cheerful and sweet – a promise that I’ll be back in the morning.
Their skin was once so fragile and sensitive that removing the thermometer from their armpit was a delicate procedure because their skin could have torn.
Now we’re burping them with back pats and rubs.
We once relished at the chance to dab a tiny sponge in the teeniest drop of breast milk that we’d use to moisten their lips.
Now they eat more than an ounce – sometimes close to 2 oz. – of milk every three hours. They’re champs at the bottle and at the breast.
It wasn’t long ago that we needed a nurse to pull out a baby with his/her mess of wires and tubing and place him/her exactly in the right position on us. All we did was sit and make sure nothing came undone or went out of place.
Now we can pick them up for a cuddle whenever we want, and while they still have wires coming off them, the epic game of cat’s cradle is now child’s play. Rob and I both can pick up a baby, sit down, organize wires, maneuver a boppy and start feeding without the help of another single soul.
What hasn’t changed is the celebration of each day. We tell the babies each night how proud we are of them and the progress they’ve made that day. I fall asleep each night thanking God for such beautiful and strong babies and for a husband who is my rock and the best daddy I could ever imagine for my trio. Each poop, each burp, each good temperature get cheers. We love hearing their cries of hunger – a sure sign of awareness and simple life skills that they once didn’t have.
One of the lactation specialists at our hospital asked me recently if there were days when I was just sure we wouldn’t overcome everything we were facing. Yes and no, I answered. There were days when I couldn’t imagine Toby not needing some help with his oxygen. I’ve become patient with bradycardia events, in which the babies’ heartrates drop, their oxygen saturation drops, and they occasionally turn greyish-blue. It’s been some time since that’s been a daily occurrence, but the memory and the patience and calm I developed have stuck with me. It happened so frequently, though, that I assumed we’d experience that for a long, long time.
I didn’t see an end to many of the problems we’ve faced and now overcome on an individual level, but the big picture has remained positive since our first weekend in the NICU.
After falling apart repeatedly because of some terrible-sounding test results (which ended up fine), I had an epiphany that has been my saving grace through this whole experience: All three of my sweet babies are alive and fighting, and that’s all that matters.
We’re nearing the end of our NICU stay. This time will eventually be a blip on our lives’ radars. We have a discharge date we’re working toward depending on the babies’ abilities to keep their heartrates and oxygen saturation up in the coming days. All three could be discharged on the same day, something a nurse of 16 years told us tonight she’d never seen in triplets.
I’m excited. I’m terrified. I’m proud. I’m uncertain.
Despite all we’ve been through, I’m normal. I just wish my fears were strictly imagination and not flashbacks.
Lucky for me, I don’t have much time to dwell on the what-ifs. Healthy, 8-week-old triplets pretty much solve that problem.
