In predictably unpredictable NICU fashion, Simone had a difficult day after my last entry. She stopped peeing, her oxygen needs increased, and she had her first bad nurse, a woman who both failed to find me charming and kept slamming the isolette portholes even after I asked her to for the love of god stop DOING that. She pooh-poohed my concerns about Simone’s blood pressure and it wasn’t until my favorite nurse practitioner drove out of her way on her day off to check on us that medications got ordered and the peeing restarted in earnest. That evening Simone turned the mythical corner we had been hearing so much about and THE OSCILLATOR was banished forever. And the next morning they found Bad Nurse’s body face down in a drainage culvert, a note reading NOT WITHOUT MY DOPAMINE crumpled in her mouth.
Back on the conventional ventilator we had two excellent days and then a less-than-good day and then a marginally bad day followed by a greatly improved evening. This is how we move forward here, via a herky-jerky sort of tango, back a little after every stride ahead, an ET tube in place of a rose clutched in our teeth.
But we are moving forward—Simone is now eating two milliliters of my very own milk every two hours, which means I can add “nourishing” to my so-far limited repertoire of mothering tasks (“hovering” and “hand-wringing” making up the bulk of said repertoire). When nurses, machines, and a stunning variety of plastic products are attending to nearly all of your baby’s needs, it is easy to feel superfluous. Feeding her, even if with the help of a hospital-grade pump, a syringe, and an OG tube, seems like a step towards a more normal motherhood, a motherhood as yet in the future, where my milk let-down reflex is no longer triggered by my baby’s oxygen alarm.
But the most exciting development of the past few days started Wednesday morning, when Simone raised her eyebrows and I saw a pinprick opening at the corner of her eye. Her eyelids were starting to unfuse, and that afternoon I was holding her up in her isolette so that the nurse could remove a drooled-upon blanket, when one eye slid open and stared straight at me. I very nearly dropped her in surprise, and by the time Scott heard my cry of “Her EYE opened!” and scrambled to my side, the eye was closed again. And closed it remained, until yesterday evening when Simone lay on her stomach, chomping on a tiny pacifier as I obligingly held it in her mouth. Then, with a great deal of effort and vigorous eyebrow activity, she opened the eye not mashed into the blanket and looked around.
“Hi! Hi sweetie! Hiii!” I burbled into the porthole. Scott and I watched her watch us for a few seconds before her eyelid drooped back down, and then she struggled to raise it again, peering at us in a charmingly unfocused way as she gnawed busily.
And now, some pictures:
Here I am, holding Simone this morning for the first time since her surgery. I can’t tell whether it is the unflattering perspective or just Simone’s diminutive size, but I look like a giant, a delighted giant holding a human baby she found abandoned on the forest floor:

And here is Simone one hour later, fast asleep with her mouth hanging open, dreaming her girlish dreams of extubation:

Please ignore the crazed camera-wielding mother reflected in the isolette.

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Oh, how I waited for an update. What wonderful pictures, thank you so much.
beautiful mother, gorgeous girl.
May you only know good days and nights and nice nurses!
She’s lovely, and it’s touching to see her able to be held against your skin. I’m sure hearing your heartbeat is incredibly reassuring to her. You look like a proud mama, not a giant. :-)
Thank you so much for the update — I check your site many times a day – after that last couple of posts- praying for something good. I am glad that things seem to be on an upswing – she is adorable.
amazing, amazing. that must have been incredible to look into that eye! and I’m so delighted that we get more pictures.
She looks lovely and fattish. Good work with the nourishing!
She looks wonderful and perfect. And you look proud as punch.
Oh. Oh. Thank you so much for sharing your beautiful pictures. She is beautiful, sweet, divine. I am sending you so much love and good wishes from down here.
xoxoxo
It’s wonderful to hear an update…it is the way of the NICU, the back and forth, up and down, love and hate. You are doing a wonderful job mothering her, and giving her your milk! WOW! She is bound to blossom with it. Sending you loads of positive, healing thoughts and keeping you in my prayers.
Oh my God–been checking in several times a day, anxious for good news. I am in tears reading about Simone opening her eye…such wonderful news. I came across your blog a few days ago and just read and cried…heartwrenching what you have been through. Add me to your army of supporters.
I am so happy you are able to “kangaroo” hold Simone now! You are a lovely lady and Simone is gorgeous. Congratulations! I am sure daddy will kangaroo hold Simone too if he hasn’t already.
I’m sorry about Big Bertha nurse, people like that should not be working in a NICU!
My continued prayers for your beautiful little girl. It won’t be so terribly long and you’ll be bringing her home with you. God’s blessings!
I’ve been checking and checking and was so relieved for you to see your post. What a brave and clever girl Simone is to be doing so much better. My heart just swells for you all. You have people here (in Canberra, Australia) thinking good thoughts for you every day. Way to go Team Simone!
Jules
I only stumbled upon your site via A Little Pregnant two days ago and have been thinking of you & your gorgeous little girl ever since. You are already an amazing mother by listening to your heart & knowing the signs for good nurse/bad nurse, please keep speaking up for Simone when you unfortunately encounter Nurse Ratchett, it is your right!
You are providing Simone with a protective super powered turbo charged shield with your milk, yahoo, so special….Your little one is so treasured and loved by you and prayed for and nestled in the hearts and minds of all of us out here in cyber parent world.
Go Simone Go!
xoxoxox
PandA Family
Am I imagining it or is Simone’s nappy getting a bit small? Your milk obviously agrees with her ;-)
Thanks you so much for posting, Alexa, and sharing pictures of Simone with us. What a brave, amazing little girl you have there.
Make sure you freeze every drop of that milk left over!
I’m all teary now, cheers for that biiiiitch. What lovely, lovely photos, like I wasn’t crying enough BEFORE I set eyes on though.
She’s beautiful, you’re beautiful, and I’m so beyond pleased that the good times are currently outweighing the bad. She wouldn’t be doing her daughterly duty if she didn’t give you stress-induced heart palpatations every day.
As it’s Mothering Sunday over here, Happy Mother’s Day. It suits you well.
Simply radiant.
She’s so beautiful – I am wishing for nothing but the very best for you all
This is my first time reading your blog, and I read for about a hour or more. My thoughts and prayers are with you and your family. She is beautiful. I hope that nurse gets hit in the face. lol I work in a hospital and closely with NICU and those biatchhes can be very insensitive sometimes.
Have been exceedingly anxious about you all! So pleased that your gorgeous girlie is munching her tenacious way towards coming home with you. And sooooo well done for being intrepid and doing battle with the breast pump! Not sure how your breast pumps measure up over there, but British hospitals seem to hand out machines that are bursting with nipple-hating malice, and have only one setting… Violent! She’ll be bruising your boobs with her very own chomping great gums sooner than you think. Continuing to pray for you all.
My obsessive blog-checking pays off! I am so thrilled to hear of your daughter’s progress and to see these wonderful photos. I think of your family often and am continuing to pray for all of you.
She’s looking so good! It’s wonderful to see such a beautiful picture of the two of you together.
Dear Alexa, like Pru, I was crying even before I got to the pictures, but then oh man. You are beautiful, both of you, and I am so glad that Simone is getting a bit better, even if it is by way of that terrifying tango.
Goodbye, oscillator. And that image of the NICU nurse’s grisly demise was gratifying indeed. What the hell is she doing in that profession?
You and Simone are absolutely Beautiful!! (and are in many of my thoughts each day)
Thank you for sharing your pictures and updates with me.
She is so beautiful and you are positively beaming when you are holding her. I would absolutely love to see a picture of all three of you!
I am saying prayers for your little family and looking forward to the day you can take her home!
Way to fight for your girl, as if we expected anything less.
You guys are doing great.
Awww…! I hope she and you will have lots of eye conversations !!
I have just found your blog. If you can write so eloquently about THIS experience, I look forward to reading you when you reach easier times.
You reminded me of 30 years ago, when I was where you are, but with a slightly older babe. She would fix me with her navy blue stare, and I will never forget that. Here’s to two open eyes – and you already have the only mothering skill that really matters.
Best wishes for all of you
Thank you. I check your site a couple times a day and whenever you post I pause at the title, trying to decipher what it might mean, good or bad news ahead. I’m happily relieved for you and Simone and your husband too of course. And still praying for you and for a happy ending where Simone gets fat and sassy and you all go home where she grows up testing your strength and patience not because of any health issues but simply because she won’t clean up her toys and later because she wants to get a tattoo or something.
Banish the bad nurses. There are a few, unfortunately. So glad Simone got a glimpse of you.
So relieved to hear from you. I’m in awe of the three of you and all that you are going through. I love the pitures. She’s so cute!
Hoping for a steadier ride out of the NICU from here on out.
yay progress! yay eyes! boooo bad nurses. glad to hear things are improving a bit.
Hurray! what fabulous news to those of us who have been hovering and hoping this amazing news would happen! Congrats!
What beautiful pictures! So glad things are improving, even if in fits and starts.
I will continue to hold you all tightly in my thoughts and prayers.
I’m found you through “in the trenches”, and I’m so glad that I did! I am thrilled for your progress, and will continue to check back for updates… Simone is beautiful and you look so proud (as you should!).
She is absolutely positively beautiful. That must’ve been such an amazing moment when she looked at you.
What is with that bitch of a nurse? She needs to get a new job.
Simone is beautiful!
Oh how I remember the days of Kangaroo Care and trying to hold your baby with all the leads attached. Our son was born at 32 weeks and spent 4 weeks at the Fairview Southdale NICU. It is a rollercoaster ride of emotions, but will be a faded memory once you have your beautiful daughter home. Keep up the good work, Simone!
Yay!!! Finally my obsessive blog-checking can cease and I can leave the computer for the first time this weekend. Ok, maybe it hasn’t been that excessive… but I have been checking a lot. So happy and relieved to read this update.
She is just so precious. Hooray for all of you!
What a marvelous baby. Absolutely marvelous.
Like others have said, your silence was a bit terrifying (not that I expect you to write during such a hellish roller coaster ride) so to see that things are going okay was a relief. Simone is sooo sweet and you have that new mother glow. Rest assured, your mere presence with Simone is all the mothering she needs and does more for her than any plastic tubing can. Continued good thoughts and many prayers to all of you.
i’m new, and just catching up to the backstory. i am so sorry about Ames, and so delighted about Simone, and i think Bad Nurse got what she deserved.
and i remember that moment of an eye opening. for us, it was a gift unparalleled.
she rocks, that little girl of yours. as does the smile on your face. and your writing.
The rollercoaster ride must be hell…but when this is over, the results will far outweigh the ride there.
Now, as for that cow of a nurse: if ever you don’t like what a nurse is doing (any nurse), find the charge nurse and let them know that you don’t approve and want it changed immediately. If you don’t get any results from that, head on out to the front desk and ask for the hospital administrator. You don’t have to be nasty with them, just firm in that you expect for your tiny infant to be treated with respect as well as you. This is a trying enough time in your life (and little Simone’s) without someone adding to the mix. If all else fails, the administrator will take care of it. If the administrator doesn’t, remind them of your gazillion readers and how you’re posting to this website.
I’ve never had a child in a NICU but I have had a father in the hospital, in and out of ICU, and this technique worked at the charge nurse level. For myself, I’ve used the administrator with stunning success. All without getting nasty. It’s called Patient’s Rights — and they all know about them.
Be well – all of you!
Anne
I’m just so glad to hear the movement is herky jerky in the direction of good!
The sight of the two of you brought tears to my eyes. What a beautiful baby! Best wishes and lots of love sent your way!- Love- Carla, Brady and Oscar
I love what Anne said. Do that! Wield the blog!
Love to all of you and much, much joy at the improvements. Thank you so much for sharing.
Yay, photos! And open eyes!!
Oh wow, wow! Simone’s really grown! You look lovely together. Keep tangoing! it takes three ;)
Thank you, thank you for taking the time to update all of us! I know I’m not the only one checking reader multiple times a day hoping there is an update. How selfish I am that I want you to take the time to write.
I’m so amazed at how you keep your humor through all of this. I’m afraid I would be all pitty me, and leave everyone in blogland hanging.
And that sweet little girl! Positively plump I think. Yeah for mommy juice! And for opening her eyes!
I hope you’ll let us know if there is anything at all any of us can do for you. Again, thanks so much for the updates! What a beautiful mommy and daughter you are!
I’ve been so worried. SO WORRIED. I don’t even know you, but I’ve been so worried.
I’m so glad she’s doing well. While I want updates every day — twice a day! ignore us, your time with your precious girl comes first.
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