You almost died.
You were five days old and five weeks early and you almost died.
When the doctors and nurses rushed into your room, this little world within a world within the NICU, your dad and I looked at each other and we knew it was bad. We were told to go to the family room while they called in an emergency x-ray. As you howled in pain, in confusion, in trying to understand life at five days old while your intestinal walls filled with air bubbles that almost burst through into your gut, your dad and I looked at each other and we vowed:
No Googling about NEC.
Only when you were in the clear did we finally do the reading, did we look at the statistics. Only then did we realize how incredibly, amazingly, blessedly lucky we were.
“Necrotizing enterocolitis is a serious disease with a death rate approaching 25%.”
When we tell people about why you were in the hospital so long, when we talk about NEC, we talk about morbidity and mortality rates. We don’t actually say, “Our son almost died.”
But you very nearly did. We don’t drop the “D” word like it’s some taboo, some Voldemort, some verböten verbiage never to be uttered in front of the newly born.
You almost died.
In another Universe, in another version of events, you’d have been gone just as quickly as you came into our lives.
[break]
In the almost two months since you’ve arrived, I wonder if now, I feel like I have to step up my game for every moment you’re awake, for every breath you take. Even with the NEC long gone, that 1 in 4 statistic still looms large in my mind. It makes us vigilant, sometimes even hyper-aware. We worry over every fussy feeding, the spit up, the gas. Is it too little of a poopy diaper? Too much poop? The crying – my G-d, the crying after he eats…
We worry and we think, “My G-d, is it coming back?”
[break]
Sometimes I feel that because we almost lost you, we have no right to complain. Because we dealt with infertility, I should be a trooper about all of this.
That we should cherish every single second of your life – and we do, believe me, we do: when your room is dark and quiet and you’re nursing at my breast, your breath punctuated by that soft suckling sound and the tears roll silently down my cheeks as I blink them away, thanking G-d with every breath of mine that you’re here, my G-d you’re really here now after all this waiting, after all this time, after all the heartache and pain and shots and morning sickness and gestational diabetes and NICU and NEC you are really and truly here…
Who am I to talk about how overwhelmingly exhausting, challenging, confusing and bewildering it is to be a new parent?
Who am I to complain?
Who am I to voice anything except praise and humble joy at this living answered prayer in my arms?
[break]
I have never known guilt like I have in the last eight weeks.
I should have taken better care of myself so he wasn’t born early. I shouldn’t have gone out shopping with my mom in the morning the day he got sick in the NICU so I could have seen that something was wrong earlier. After everything with the NEC, I shouldn’t be giving him formula two times a day. I should be producing more milk, so that he could have gained more weight a few weeks ago so he shouldn’t even be on supplemental formula in the first place. I should answer his cries sooner instead of playing the wait-and-see game in the middle of the night. I should be picking up around the house more. I should be writing more. I should finish start my baby shower(s) thank-you notes from two months ago at this point. I should be getting out of the house more. Getting dressed on a daily basis. Showering more regularly. I should be talking to him more, engaging him more, making sure he’s developmentally okay.
Should. Shouldn’t. Should. Shouldn’t.
I vacillate between priority and obligation with no clue what the hell I’m doing at any given moment, trusting my gut as much as I can, pinging into that “mother’s intuition” that doesn’t really feel intuitive at all.
[break]
You are in the trenches when you have a baby. To the untrained eye it seems pretty straightforward and easy — you feed them, you bathe them, you pick them up when they cry — but it’s more than that. It’s perpetual motion with a generous layer of guilt and self-doubt spread on top, and that takes its toll. (Source.)
And you’re falling into a love you’ve never known. It’s like quicksand; the more you struggle the deeper you fall. Only you’re not struggling, because it’s a gorgeous catastrophe, and there’s nowhere else to go. (Source – and worth the full read.)
And while… I certainly asked myself whether I might have PPD [post-partum depression], I generally didn’t find that line of questioning helpful.
Don’t get me wrong—it’s an important question that we should keep asking ourselves and each other, and we should seek treatment unapologetically if the answer might be yes. But the problem with that question as our primaryapproach to the struggles of new motherhood is that it suggests that the post-partum experience itself is just fine, unless of course you have a legitimate clinical illness that distorts your perception of it. And the post-partum experience is not just fine. It is immensely, bizarrely complicated. It is, at various times and for various people, grueling and joyful and frightening and beautiful and disorienting and moving and horrible. There’s a lot going on there that will never make its way into the DSM V. (Source.)
We know it’s true that they grow up too fast. But feeling like I have to enjoy every moment doesn’t feel like a gift, it feels like one more thing that is impossible to do, and right now, that list is way too long. Not every moment is enjoyable as a parent…
You’re an actual parent with limits. You cannot do it all. We all need to admit that one of the casualties specific to our information saturated culture is that we have sky-scraper standards for parenting, where we feel like we’re failing horribly if we feed our children chicken nuggets and we let them watch TV in the morning. (Source.)
[break]
Body odor and personal hygiene aside, I really do need to shower more.
The sound of the water from the shower head is a kind of white noise. Between that and the bathroom fan, I can’t really hear anything when I’m in the shower. Not the noisy window air conditioners that run 24/7 because of this ungodly heat, the cats meowing for more food, the baby that cries and cries and cries, often inconsolable no matter what we do.
The shower is my retreat, my escape. A fig and honey and orange and cherry blossom body wash scented escape.
It’s the reset button. It’s when I’m washed anew, when the water washes away the dried milk, the dried spit up, the dried pee, the dried poop, the dried, salt-stained trails on my cheeks – and the still very wet tears.
The shower, a baptismal of quiet relief, however momentary, however fleeting, both blessing: “Thank you G-d, for this moment, for this child, for keeping him alive and safe” – and prayer:
“Grant me the strength to keep going.”
Heather says
What a precious post. The guilt always seems to linger, but we do the best we can. Hang in there, Keiko, it gets easier. Lots of hugs xxx
luna says
this is all so natural, what you’re feeling. it’s so traumatic some suggest PTSD is not an unusual diagnosis after such an experience.
there is an incredibly overwhelming sense of awe and gratitude after what you’ve been through. yet such elation is also tempered by sheer exhaustion and frustration and the internal probing, eg, what more could I possibly be doing (hence the guilt), and on and on.
as new parents we just do the best we can. hell, that’s all any parent can do. sometimes we nail it and sometimes we flail as we try to figure it out. that’s how we learn. ask for help when you need it, find what works for you, take what you need and ignore the rest. rinse, lather, repeat.
these surreal days and oh so long nights will pass. they will. now you need to take care of yourself too. whether it’s a shower or a walk, a book or a nap, a day off from work, whatever you can do for yourself. your boy is SO loved. you’re getting him just what he needs right now. go easy on yourself. xo
luna says
also, has anyone suggested reflux as a possible reason for the crying after feeding?
Keiko says
We’re looking into it with our pediatrician. Combined with the frequent/copious spitting up, nursing issues (he’s got a tongue-tie to boot) and the way he arches his back as if in pain a lot of times, we need to seriously consider actively treating him for reflux or even GERD.
Robin says
Love and hugs! All a parent can offer is their best and I have zero doubt Judah is receiving every last ounce of energy and love from both you and his daddy.
Kim S says
I think you are so brave and strong, Keiko. I just wanted you to know that.
Nikki P says
My little guy was born not breathing and then spent time in the NICU as well. We are lucky to have a now healthy one year old but there were times I was scared it wouldn’t happen. I am still dealing with some PTSD and guilt even a year later. You aren’t alone. Congratulations on your son. He is beautiful.
Tigger says
Who are you? You are a parent, a new parent. You have entered a new world that has no set rules or routines or guidelines. Every child is different, every parent is different. There is no “one size fits all” piece of information that will make it all better. So who are you to do the things you do? You’re YOU, and I love you. I do not envy you this time – I’ve done it and it SUCKS. It’s great to be able to go through it, because it means your dreams have finally come true…but it still sucks. Just because you struggled for so long doesn’t mean you don’t have the same rights as the women who get pregnant at the drop of the hat. We’re all parents and to some extent, we all experience the same things. I love you, Keiko, and I know you can do this. Not because you’re strong (good heavens I hated being told I was strong all the time) but because you have a good support system both IRL and online, and we’re all here to catch you and to listen when you need it.
Esperanza says
What a beautiful post. What a stunning portrait of new motherhood. Thank you for this.
Jess H says
As you said you were blessed and lucky but you are also human. Give yourself a break and take as many soothing showers as you can get. After infertility and adoption I remember well my first bout of guilt and thinking I had no right but to be grateful every minute. But we are human, and parents, and parenting is hard and perhaps harder the longer we tried and wanted to become parents. Let.the.guilt.go. As quick as you can and you’ll be a better parent for it. You are beautiful and amazing and inspiring and as hard as it is to believe now, things will get better quickly. Hugs to you all. Hang in there Mama! And def look into the reflux-sounds just like some babies I nannied that had it.
Lori Lavender Luz says
Under the best of circumstances, new motherhood can slippery and difficult. You are an inspiration for the strength you’ve mustered. But I can already hear you saying, “what choice did we have?”
XOXO
Justine says
Oh, Keiko. This post makes my heart ache. I know this guilt, even though my own children were never in the NICU. My son spit up too much. My daughter never slept. So much I could have done differently, so much I was sure I did wrong.
I’m not going to offer advice, because I’m still sensitive after Kathy’s post yesterday. But I will tell you this: sometimes it’s easier to get stuck in the dark places in our heads when we are physically, mentally, spiritually exhausted. I hope that you find light in your beautiful little boy; that picture at the end of your post is a precious reminder of the gift, complicated (yes, complicated) as it is to receive.
xo
L says
Honest and wonderful post. This picture at the bottom is simply beautiful. YOU look lovely and in love with your son. Looking forward to you being able to post more regularly again…but not pushing.
Lori says
Darling..
Sweetheart.
It gets better. It gets easier. The long nights of inconsolable crying for hours fade one day and it becomes a distant memory. New worries, new challenges will come and go… But each day it feels a little more natural. A little more bearable. And it’s all worth it. I’m sure you remember that most of the time, but I too know the dark moments, the hard seconds of rock bottom desperation and that’s ok too. You cAn feel bad and have a hard day. You have been so strong for such a long time. You are doing everything right. You are making the right choices. You are an amazing woman, and an amazing mom.
I just wanted to let you know that. Thanks for sharing.
Athena says
Beautiful post. I too struggled with infertility and am very thankful now for a healthy 16 month old. Don’t be too hard on yourself–we all have those guilty feelings! You are your baby’s world, never forget that. In a few months it will be so much easier.
P.s. have you considered supplementing with donor milk instead of formula? Mothers milk bank of New England is right near you, and peer-to-peer networks eats on feets and human mom for human babies are great as well. I have donated via all 3.