Day Seven.
I had planned to finish the post I fell asleep writing last night, a post about pumping, but Simone had a bad day today, and I just don’t have the energy to hold forth on the subject of nipples. Everyone tells you that the NICU is a rollercoaster, that there will be highs and lows. But “low” doesn’t really convey the experience of watching your daughter push her wrinkly, 1/2 -inch wide arms wildly behind her head and grimace open-mouthed in distress, or seeing her oxygen saturation dive on the monitor while an alarm shrieks at you accusingly. And the highs? Let’s face it, your baby’s still in the hospital. I’ve had bowel movements that got me higher.
She’s okay, now. And I keep repeating to myself something I read in Julie’s post of NICU wisdom: “She won’t remember any of this.” Oh, how I need that to be true.
82 Comments
Ugh - I can’t imagine what any of this is like. :-( I swear the thing about babies is that it really highlights how fragile this mortal coil crap is. Horrible. Ever since I had my daughter I get physically ill at the thought of babies getting hurt. And it’s been 4 years now, so I think my weepy fragile feelings where babies are involved are staying.
But the beauty of babies? Resilient. Amazingly resilient. They can bounce back from just about anything. She won’t remember, and you won’t forget. But when you take her home? It’s one of those climb any mountain to get there.
And the pumping - God’s little joke on us all perhaps? Did anyone tell you to look at pictures of babies yet? I had a pumping room set up at work and they put up pictures of babies everywhere you can look. It was like infant p0rn or something. And no, Federal Govt, not *that* kind.
Pumping is a necessary evil, and its eviler than most evils. After a while your milk will let down to the sound of the pump, and then your body dumps hormones and you pass out, the way you might if you were lying in a cozy place and feeding your infant. And then you wake up, an hour later, still freakin’ attached to the milking machine. Remarkable, to say the least. I support the idea of pictures of babies. I only posted pictures of my very thin daughter, but when I’d see my friend’s much older and plumper baby in person I had a strong desire to snatch her and run off so I could feed her, so I bet pictures of any baby will help inpire you. Aa my 15 months of pumping went on, I began to enjoy it as my reading time, once I stopped passing out whild doing it.
As for the hospital, you’ll just feel all that gutwrenching stuff for ages (and you might kill one nurse and worship another) and pretty soon another new mom and her baby will join the NICU flock and you’ll be comforting her and giving advice and you;ll realize you have gained strength, if nothing else. You’ll make it, you are tough as nails.
Hi Sweetie,
You and your family have been in my thoughts and prayers for the past two weeks. I really don’t know how I came upon your blog last month, but I did and I have been thinking of you and your family so very much.
My nephew was born 18 years ago and weighed 1 lb 9 oz…he was in the NICU for 3 months… he is now in college and brilliant and striving and amazingly healthy. He does not remember his first year. My sister had to intibate (sp?) him so many times during his first year that we lost count, on his first birthday, he could not walk, had no teeth and was clearly behind on the growth charts… I never imagined that he would be so completely perfect after that horrendous year.
Hang in there. I pray for you and your beautiful daughter and your husband and family.
Much love to you and your family,
I remember our days in the NICU and honestly, she does not remember any of it. Unfortunately, we do. But as adults we can set it aside every day we see her miraculous face. Keep strong. You and Simone are amazing. I have faith you will come out the other side of this soon. Much Valentine’s Day love to you and yours.
You are a legend!!! You are a fab mummy and I know how awful the pumping is, I remember it well. I have been checking your blog at half hourly intervals for an update on you and your precious baby Simone. NICU is a rollercoaster ride and certainly one you never want to get on, but you are doing so, so well. You and your family are in my thoughts and prayers tonight.
lots of love
Sarah xxx
thinking lots of good thoughts for you over here! I can’t even imagine. But that last picture on your previous post was simply amazing–one of the most touching images I’ve seen.
Oh how I remember those NICU days and nights, I will never forget them. But she will get through this, and so will you.
When my former preemie, now 15 years old, looks at her old pictures in the NICU, she is very proud of herself. So will your daughter be one day.
Those children are my heroes. They really are. And they are SO special.
My daughter and I are sending you loads and loads of good thoughts, prayer and sunshine. You and your little girl are never far from my mind.
Oh, sweetie, I am thinking of you and praying for you and Simone and Scott. Hugs!!
Wishing I could give you more than kind words…
Sorry for the downs, and here’s hoping for more ups. Better ups. The absolutely best ups ever.
(((hugs))) and I am thinking of you.
Oh - forgot to say. There will be ups. When you see her steady rise in weight and see her make those milestones - every time they take off another tube - there are many ups waiting for you.
We’ll be here to share them with you.
Thinking of you guys. It must be so hard, I can’t imagine. I hope there are only UPS from now on.
No brilliant words here. Just kind thoughts. Hang in there Alexa, we are with you.
Hang in there, we are all sending our love to you guys and especially little Simone. And keep on pumping. You will be so glad that you did the first time they go to give her food and it will your breastmilk with all those great antibodies!
Ah, nice lady, I am thinking of you constantly.
I don’t know what the future holds for you and your family. Even once Simone’s home and safe, the bald truth is that you’ll probably worry about her for a very long time to come. But the worry comes with a kind of wonder I’d never known, and that wonder is what I wish for you.
Been thinking of you and Simone a lot. We are all rooting for your little angel.
It is awful but she won’t remember it. And eventually you will have her home and it will feel like all that time in the NICU was a very long time ago. I brought mine home from the NICU 1 year ago today. He was only in for 16 days but it felt like forever at the time. Looking back I realize it was just a small blip in his life.
It’s true she won’t remember it. But someday when she’s a healthy happy eight year old, you’ll be able to tell her stories of her first few months and how much you fought for her then and in the years before.
And she’ll know exactly how much she was wanted and loved. What a gift.
Thinking of you.
She won’t remember, but you will. Here’s hoping that time will soften the memories for you as she grows into a strong and healthy little girl.
Pumping sucks.
I think so much about you and little Simone. I can’t even tell you how often I think of you during the day w/o sounding kinda weird!
Go Simone! GO GO GO! And mom, be kind to yourself physically and mentally. For her and for yourself.
Thanks for the update, Alexa. I’m sorry that it’s so hard. Thinking of you and your sweet family…
Thank you for this post and for the link to Julie’s post (which was quite good, I might add). So, if I may, take to heart everything she said — including the “take care of yourself” part. Get rest. Drink fluids. Eat. All those things. If you have to, make a schedule for yourself and add these things to it. Simone needs her Momma and Daddy to be healthy. If you’re sick, they won’t let you in the NICU. That would be the ultimate torture.
Stay well — my thoughts are with you, Scott, and Simone (with the long feet).
Another reader just letting you know that my thoughts and hopes are with you and your darling girl. BTW - I hope it settles you a bit to know that babies often grimace in the womb also.
You are in my constant thoughts Alexa. And Julie is so right, she will not remember any of it, you may, and that will give you all the more reason to be elated years from now when you are playing with Simone in the park and she gives you the largest grin ever!!
I’m keeping you, Scott and Simone in my thoughts. She’s already proven she’s a fighter - you will all get through this! And as you said, she won’t remember a thing.
Still thinking of you and your family.
I’m so sorry for these lows, and I know that your highs at this point aren’t super high, but with the collective force of all these commenters thoughts/prayers/well-wishes, etc., you’ve got a lot of good energy coming your way, and surely more “high” than “low” moments in your future.
I cannot imagine what you are going through. I’m glad that Simone is doing better now!
Thinking of all of you, and hoping that the NICU time will fly by, insofar as that is possible, so that soon you will have Simone home and, although I don’t doubt you will always remember it, that it will *only* be a memory.
You know, it still just amazes me that you can write so clearly, poignantly, and–yes–hilariously during this unfathomably difficult time. You are an amazing woman, and Simone is an equally amazing little girl. Seven days old!!
And Julie’s absolutely right–Simone won’t remember a single second of this time. I wish the same were true for you…
I think that babies who are still in utero are probably also frequently distressed and pissed off — we just don’t have to watch it, and can think, “Oh, she’s kicking, how cute!” while inside she’s all like, “Get me out of here RIGHT NOW!” Really, who knows?
She looks like a good strong baby. She’s going to be ok.
Alexa, I don’t know what to say. I feel like I keep repeating myself; I’m praying for you and Simone, I love you, I’m hoping the best and rooting you on. It doesn’t seem adequate for all that you are struggling through.
I love what Doctor Mama said and I think she’s right. Hang on to that. And to what Julie says. She won’t remember any of it. You will because you’re the keeper of her story. And you’ll give it back to her as a reaffirmation of how much you love her and always have, right from start.
You’re in my thoughts and prayers, Alexa and your darling girl.
You are incredible to be pumping! Keep it up and Simone will soon (not soon enough I am sure) be at your breast, her little fingers rubbing against your skin. Wishing you strength and admiring the herculean amounts you have all already shown!
I am so sorry that you (all of you) are having to go through this. I will keep you in my thoughts and prayers.
Sending hugs your way. My boys were born at 28 weeks and spent 13 and 15 weeks in the NICU. It was the most draining experience of my life, and that was on the good days. The bad days took me to a place that I hope to never visit again.
If you ever want someone who has been there to talk with about the NICU experience, I offer myself to you.
Take care.
Like Simone, our 27-week surviving twin, Ben, won’t remember weighing two pounds in the literal, traumatic, trapped-in-a-plastic-box- with-all-that-incessant-beeping sort of way.
But I do believe the circumstances of his birth, the life and loss of his brother Liam, the constant poking and prodding.. it’s all been imprinted onto his soul. It’s left him so full of joy, patience, unbridled delight at the world. Ridiculously so… more than what’s normal.
It seeps onto me by sheer proximity, pokes holes in the sadness of what happend to liam. Simone will do this for you. xo
I love what sweetsalty kate said. Hang in there, all of you.
I’m thinking of you and Simone and wishing you love and comfort.
Sending thoughts and love to your family
Thinking of all of you,
xx
J
From one Simone to another…love & best wishes xx
That beautiful baby girl is a week old!
Happy 1st week baby Simone.
Keeping Simone and you and your husband in my prayers. Congratulations on the birth of your beautiful daughter.
My daughter is an NICU nurse. I’m sure that they are not all as awesome as my girl (how could they be?) but, in general, they are tender-hearted and tough-minded professionals who will care for Simone and help her to get through this. As mentioned by a previous commenter, please try to take care of yourself. Simone and your husband need you so very much.
I’m sorry that you’re going through this. May she be home with you soon.
Wishing for lots more ups for the Flotsam family. She is so precious.
still thinking of you, and still (always) glad to read whatever you feel like posting, whenever you manage to post it.
For fear of jinxing everything, I’m just going to say: I’m thinking of you, drink water, use moisturizer.
Stay tough Simone, fight hard.
Been praying for all of you. Take care of yourself so you can take care of sweet Simone!
Thinking of you, hang in there. Big hug to you all.
Thinking of you and rooting for Simone.
Alexa - I am fairly new to your blog here, but I work in the medical field - not as a nurse, but typing doctors reports. I don’t know a lot about NICU, but I do know that the hospital will probably give Simone breast milk from a breast milk bank - of which there are such things. I have read miracle stories of babies being as tiny as 10 ounces at birth and making it just fine. I don’t know what they do at your NICU, but at the one in Grand Rapids, Michigan where I live, they have 150 beds and almost all are filled 99% of the time. They cover the babies isolettes with blankets, to darken and simulate the womb. Sometimes they lay the babies on water mattresses. It probably wouldn’t hurt you to pick up a teddy bear that plays womb sounds - that may comfort Simone. Maybe your NICU has such a thing - you can ask.
I will continue to pray for Simone as well as you and your husband. You need to heal too - you have a broken heart as well. Sleep and tears are the best healers for grief. And please, don’t make any major decisions until Simone is home and healthy. I wish you, Scott and Simone well.
Also forgot to say…….there also is infant massage techniques - please do ask about this of your NICU nurses/doctors. This might help as well.
Thinking of you Alexa
Thinking of you and lovely little Simone as always, sending lots of good vibes.
And dont forget that she has a high every time her Mama and Daddy are there to hold her head and feet!
x
Sending love and light your way.
Oh I wish you could talk to my mother — who stood beside that isolette for months in 1972 — and I promise — I don’t remember a single second…and I am happy, healthy, and by all accounts.. have thrived.
My good thoughts to you all.
Pam
A friend had her baby in a NICU for seven months (!) and when the baby finally came home, they had to do a spoiled-brat detox on her; after so much affection and constant handling, she had grown too used to all the fuss. If anything, what she did remember, was a whole lotta lovin’ so try to think of a few Led Zeppelin lyrics when you hurt for her, as that will be the overriding memory, if she even has any. I’m very happy for you that your beautiful daughter is doing as well as can be expected. I empathize with you as I had a NICU experience I won’t venture into–my baby was just not destined to live for genetic reasons. Just know, we are all rooting for you, and some of us have actually lived this, so please don’t ever feel alone.
The NICU sucks. And the best advice I got was actually not to expect *myself* to be healed just because my baby eventually came home. That it would take time for all of it to recede, but that one day I would smile and feel joy again. It was hard to believe it at the time, but it turned out to be true. It took a long time to heal. But how do you not feel pure, unblemished joy at the sight of a child standing on a table clad in only a diaper singing “Shake, shake, shake, shake your body”? My NICU son is four, and we live with special needs (genetic condition completely unrelated to mild prematurity), and we have plenty of laughter that we embrace with whole hearts.
I just wanted to say that I am hoping and praying for a post a year from now that is full of exploding diapers, toothy/toothless smiles, and OMG she’s CRUISING. Everyone has been telling you how amazingly strong and heart warming you have been. They are right. I am just one more voice talking to the universe on Simone’s behalf. I really hope it works.
I don’t know anything about the NICU. I didn’t have to go there. So I can’t pretend to understand.
But I so admire your story so far, I so love the pictures of Miss Viking Simone, so wish and hope that all is going as well as can be expected (whatever that means).
Your words have taken me on a wonderful journey over the last few months (since I had the fortune to find your Meisterwerk of a blog). I’m sending you some paltry words in return - some words that sum you up: Patient, Determined, Hopeful, Courageous, Very Very Funny, a MUM.
She’s so sweet! Hang in there!
I’m so sorry for all the ups and downs. Thinking nothing but the best, most positive thoughts for you and your family.
Still sending lots of hope and prayers your way. You deserve a medal for enduring all of this. And Simone, keep kicking those beautiful tiny feet and grow, grow, grow!
Love and love and love and strength and grow! baby, grow! from the heart of Pennsylvania.
Sending you and little Simone lots of love.
I don’t believe there were any high’s in the NICU for us eiher. I hope Simone is having a better day. We’re here for you.
Just thinking of you…
Just wanted to let you know I’m thinking of you Alexa and sending lots of love and support to you, Simone, and Scott!!
Another reader thinking of you, Scott, and Simone constantly, and hoping everyone is well.
Hoping all the best for you, your family, and your beautiful daughter with the strong legs.
Someone else thinking of you all.
Thinking of you and Simone…
Another…thinking of you, Scott and your dear daughter!
I am thinking of you and praying for you, Scott and sweet little Simone.
Alexa, thinking of you and Scott and baby Simone. I think the greatest imprint will be that this child is surrounded by love. Hang in there. You are fantastic.
xx
I’ve lurked long enough. Time to celebrate the birth of your strong baby daughter who is lucky to have such an amazing mom. I think of you often. Best wishes.
Delurking - big hugs to all.
As a 2x NICU veteran all I can tell you is that the happy day will come - and though you’ll be terrified, Simone’s homecoming will be the best day of your life. Congratulations on your sweet baby girl - hang in there, and know lots of people are thinking of you.
Thinking of you and your girl.
xoxo
You’re in my thoughts, every day.
Thinking of you and Simone (another NICU veteran here). I can’t wait to hear how’s she’s doing!
Thinking of you guys everyday and praying for the very best. >