Tuesday, January 7, 2014

NICU Nostalgia & Tips

Well I've been saying sometime I would post "A Typical Day in the NICU" of sorts, but it's hard for me to go back...

But this time of year, and especially with the twyns turning 5, I look back constantly and wonder where the time has gone. It literally feels like two days ago, I was rocking their little doll-sized bodies tucked into my shirt during kangaroo-care in the NICU.

One of our favorite nurses handing Baby A to me for Kangaroo Care
So I'll just try to jot down some moments, and hopefully it will give a clearer picture of my life *five* (wow, was it five!?!?) years ago...as usual, I know I'm no expert, but I do offer tips as best I can at the end of this post.

This bit of nostalgia was inspired by a friend who is a NICU nurse posting about a hard time she was having at work. I tried to reassure her by posting this photo of my Thank You note I sent to our NICU ,along with a gift, at the end of our stay, for the staff there:
Our Thank You's from A to Z

Breast-feeding in the NICU
Yes I think the first memory that comes to mind is the many different nurses who gently (or not-so-gently) touched my breasts while helping me get those tiny mouths to latch on to a breast larger than their heads. Yes, I'm a bit well-endowed, but seriously, those babies are TINY. There's NO WAY they are going to breastfeed. But, lo and behold, with the right hold (small, skinny, lumbar-type pillow under their bodies, propped up on the arm of the chair so that they are higher up at an angle, not parallel to your lap like on a Boppy), and an eye on their little noses for clearance, and you've got a good head start. Thanks, nurses. Thanks especially to the ones who coached the children OUT LOUD and made me laugh and not take myself so seriously. Sometimes in a foreign language (D.C. is a very International area, and who knows what languages babies actually speak.) Thanks to the nurses who knew when I was starting out I would need the privacy screen to shield me from other patients. And then thanks to the nurses who knew I was "old hat" and didn't care about the effin screen and gave me a knowing wink to make me feel at home.

When breast-feeding was a long shot: holding and diapering
Taking temperature
Calming her through a difficult medical treatment for her PDA
This look says it all: gratitude, exhaustion, having hope while giving up control
Breast-feeding wasn't until the final 1-2 weeks of our stay! For the first 5-7, it was holding, diapering, taking their temperatures, and pushing the little tiny ounces of breastmilk into their tubes before trying to bottle-feed. It was surreal. It was a struggle. It was SURREAL. You don't believe there is a little person in front of you; it feels more like the zoo. You don't know how to feed this animal, and the zookeepers are there to give you a fish you can throw at the seal during feeding time. Without the zookeepers, you would just stand on the other side of the glass and watch the animal. SURREAL. In these early days, "Open Crib" time was the best. There were a few times of day when the Isolettes (once called Incubators) could be open and you could be closer to your baby. Then the few times of day when you could actually hold your baby. You think you are supposed to comfort your baby, but you just cry because there are so many tubes and wires stuck on them. You wrap your arms around them carefully so you don't break them, and then the nurse swings them back into the Isolette so matter-of-factly that you start to realize you can do that, too. And you get braver and braver with each tutorial on how to change a diaper by sticking your hand into two holes in the wall with five hundred wires sticking out of your baby. Honestly that is the first time my husband had changed a diaper!! I reassured him that it is easier without all the wires. The NICU nurse who taught him how was so calm and NOT condescending at all. He took it like it was an engineering class. It was very special and sweet. I'm sure she does that five hundred times a day, and makes it seem special every time.

The tips, the chats, the notes
Just sitting there watching your baby breathe is fun, but the nurses are at their job, so they are chatting about all kinds of things. And most of them are mommies, too, so they now have, literally, a captive audience, prime for pieces of wisdom. I didn't remember ANYTHING they said at the time, but it came back to me through the YEARS, seriously! YEARS. One was a twin-mommy and she said one of her twins' favorite things to do was take off each other's diapers and play with the poop. Poop, poop, poop, everywhere. Sounded disgusting. But there I was, in poopville, about 16 months later, remembering she told me to PUT THEIR DIAPERS ON BACKWARDS, so they couldn't get them off as easily. Brilliant.

A lot of talks also turned into reassurance. That the preemie clothes wouldn't last long (it's true, we were out of them within two months), the heart monitors would be a thing of the past (lucky I didn't throw them out the window before returning them properly), and that the girls were always stronger than the boys (my little sweetheart was tinier and struggled with more ailments than the boy, and she was the first to walk, talk, and manipulate. She's now the girl in charge, naturally.)

The nurses, especially on night shift, would often leave us notes or phones messages letting us know how the babies did over night. I coveted these notes and messages SO SO much. You always worry someone is going to "Brady" [have a bradycardia, or cardiac event] overnight and prove to be a major setback in his/her progress. Circumstances can change in an instant in the NICU. We, unfortunately, bore witness to this fact a few times on the 'floor', and it is heartbreaking to watch. You hope for more 'ups' than downs in your roller coaster ride to that ever-gleaming goal: homecoming day.

The reunion
Then there are the good stories. The inspirational moments. I remember the Nurse coordinator recommending I attend one of their monthly reunions, when "graduates" would come visit and the Nurses would get a chance to see the preemie babies "all grown up." A very enthusiastic man swung into the lobby that night with an infant seat dangling lightly from his arm. He visited the reception desk and started to tell his story. "LOOK AT HOW BIG!" I start to hear. He two-stepped down the hall into the meeting room, and I followed directly after him. He danced around the room, proudly displaying his little baby in her car seat and shouting to the rafters, "15 POUNDS! MY. BABY. GIRL!" He took her out of her seat and talked to everyone and anyone there about his "BIG" girl. His smile was as big as she was, and I was instantly renewed.
Two babies in two cribs instead of Isolettes! A double reason to celebrate.
Everyday occurrences
During the first two weeks, there were a lot of critical care issues and things were touch-and-go. I would not have made it through without some very powerful friendships, and family. Never have I ever leaned on them so so much, and thankfully they were strong enough to bear the burden.

After the first two weeks, it was New Years, vacation was over, so my husband started commuting from D.C. to Philly again, and I hit a routine. Every morning I would pump at home while staring at photos of my babies, and drive to the hospital. This was a large maternity ward, so I would often see a new mommy in a wheelchair, holding her newborn baby, waiting to be picked up at the front entrance to go home. I will never be able to not cry when I think or see this. My jealousy will always get the best of me. I just wanted, at that very moment, and every moment of everyday, to get my babies home. I will always wonder what it must be like to take your baby straight home, and I will never forget the feeling of *not.*

[Don't get me wrong; we are intensely lucky with our infertility and birth story. But it's still something I'd love every healthy woman of every healthy baby to not take for granted!]

I would cheer myself on the way upstairs to the NICU by getting one latte and one piece of bread pudding. I say 'piece' because it was like a cake. It was delicious. It was exactly what I needed to give me strength to get through the next feeding, hold back tears and lactation, and head straight to the hospital pump room for emotional and physical release.

I'd return to the babies and read a book by their bedsides until the next holding/feeding sequence (no smartphones back then!). Sometimes, if someone was off-schedule, I would miss one of them at this mid-day time. I'd have to wait until the 3:00 feeding to be able to hold that baby. You wouldn't want to wake them and have them getting cold before a feeding and affect their strength; so the best time to hold them was after a feeding.
Our first 'family photo'.
If my husband could join me for the 6:00 feeding we would meet there and then head home. We'd usually eat dinner out or get take-out, because neither of us had the energy or desire to cook in our little temporary apartment. We'd call the NICU around 10 or 11 to hear the report if we needed to, and I'd pass out before waking up in the night to pump, and waking in the morning to pump again.

And so started another day...in three-hour-intervals...with various milestones (clothes! bottles! maintaining body temp! cribs! breastfeeding!) peppered in our lives until our favorite new holidays: Homecoming Days.

 The day we put them back together again
*Home*



Their Homecoming Days are something we hope to celebrate further down the line, when they can understand them, and when they may want their 'own' days, rather than a shared birthday, (especially one so close to Christmastime).

So with those stories recounted, I try to give you tips, if you are there in the NICU right now: 
  • Listen to the nurses (and doctors), they are the experienced ones in this surreal world; only they speak the language; they want what's best for you and baby. Don't be afraid to ask questions.
  • Get comfortable. You will be here a while. It may only be a week, but it will still be way longer than you ever anticipated. Use tricks & trinkets to help you stay calm and centered, like accepting gifts of blankets and buying a comfy kangaroo-care-friendly shirt. 
  • Know you are not alone. Especially moms of multiples, many have been in your shoes. Reach out to your networks, because there is likely a friend-of-friend who can have a kind ear during this time. Some NICU's also offer mentoring. 
  • Don't expect to be super-mom yet. This is not reality. There is no way to 'prove' your worth or skill. Pumping breastmilk, if you can, does make you feel like you are 'contributing' something, but honestly just being present with your child is the most important thing you can do. 
  • Go out while you can! Shop for those last few baby items you will need; get a mani with a friend before night-feedings at home begin; shop for birthday cards for the year if you have to! Keep yourself busy outside the hospital so you remember what real life is like, because you will be back there soon. If you want to or are able to go back to work for these few weeks before maternity leave, I say go for it. I was not emotionally capable but I applaud those women who are. 
Love, Hugs, Patience and Peace be with you. 

Also, hopefully, a friend and a latte.

Email me at twynmawrmom [at] gmail [dot] com if you want to lean on me. 


3 comments:

  1. That's something I have NO frame of reference for. It sounds like you and your family are rock stars! It is super of you to share so much, I'm certain it will be comfort to someone going through something similar.

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  2. Oh, man, reading this made me laugh out loud a few times, and weep openly for the rest of it. My little guy is 5 months old this week, and spent his first month in the NICU. This brings everything back - thanks for sharing your memories! When we were there, we just tried to live through it day to day with as much optimism and sense of humor as we could summon. After he came home I exhaled in relief, and then had the cathartic emotional and mental breakdown of letting myself acknowledge how insanely stressful the whole time had been. It's such a paradoxical environment - full of the hope and potential of new life, mixed with the stress and uncertainty of the fragile ones who face challenges and poor odds. It takes a leap of faith to hang onto the vision that tiny, tiny little fragile bundle of tubes and sensors you are afraid to hold in case you break something, is going to turn out to be an utterly OK little person. And that you are going to be OK too. But it's true!

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  3. You sound like exactly the kind of mom I'd LOVE to work with!! Unfortunately, a lot of our parents don't visit that much or at all (we sometimes have to call parents and remind them they have a baby! haha not but really!). It's just a different world.. West Philly, low socioeconomic class, no value in prenatal care, etc.... Anyway, I don't know where I was going with that… but just to say that it sounds like you handled it beautifully and it's good for me to read things like this and remember what it's like from the parents' perspective (we do sometimes get involved and engaged parents like you, and it's a treat!!)! I always think preemies are better equipped for the world than the rest of us because they've already had to fighter harder than anyone else just to start their little lives. Your kids are beautiful and seem so sweet…. I appreciate them more knowing they were once tiny 28 weekers… preemies are my favorite and just better and wiser than everyone else:)

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