Tag Archives: NICU

#PPDChat 02.01.16: NICU & Mental Health

NICU PPD February

My second daughter spent 21 days in the NICU. 21 long days. We had no idea there was an issue prior to her birth so the complications which arose were a complete shock. To go from expectations of a typical normal birth experience to one which involved a lengthy hospital stay and separation threw me for a total curve. The emotional roller coaster was not one I anticipated.

Tonight, we will discuss the emotional upheaval which occurs within families who spend time in the NICU, how parents can care for themselves, how NICU parents often delay treatment, and the crushing guilt which crashes down upon us in addition to any mental health challenges we are facing. We’ll also discuss knowing the difference between NICU stress/fatigue and PPD. It’s nuanced, but there is absolutely a difference.

I sincerely hope you will join us tonight at 8pm ET as we open up about the difficulty of navigating the NICU as a parent. See you on Twitter!

#PPDChat Topic 5.20.13: More than Postpartum depression: Coping When Baby Has Issues Too

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As I have addressed recently on the blog, facing challenges with your baby in addition to a Postpartum Mood and Anxiety Disorder is hell.

Today, we’re talking about those struggles with a specific focus on the challenges of being a NICU mom during the 8:30pm ET session. Joining me for that session will be @notjustaboutwee, a fellow NICU veteran, and co-administrator of the closed FB group for #PPDChat.

I hope you’ll join us as we discuss the challenging road that is a Postpartum Mood Disorder along with the struggles of being a special needs mom. See you there!

 

Reanimating my past

Reanimation

Image via Wikipedia

Some time ago, I blogged about how brushing my hair triggered my PTSD from the birth of my second daughter. Not too long after her birth, I chopped all my hair off. It’s long again and I am finally okay with brushing my hair but still mindful of how long I brush. I make every effort to brush only as long as necessary, forcing myself to put the brush down and walk away.

Today, for the first time in over five years, I am listening to Linkin Park’s Reanimation.

Why is this significant?

This is the album I listened to the day my five year old daughter had surgery for her jaw at just 9 days old. I took the MP3 player into the sleep room at the Children’s Hospital right outside the NICU, curled up, cranked it up as loud as it would go, sinking blissfully down into the rhythm of the pulsating beats and the angst of their screaming voices. Thing is, I sank so far down I did not want to come back. I yearned to stay there, hidden, safe, with their angst. Lost in the darkness. Because there, there I did not have an imperfect newborn. There, I was just a soul moving to the rhythm. Nothing was wrong. I was not angry. I was not sad. I was NUMB. I wanted to be lost forever in the solitude of peace which existed amidst the digital beats, the persistent piano tones and haunting echoes behind the remixed rhythms. My womb, my saviour, my peace. I clung to the MP3 player until my knuckles were stiff, refusing to let go, closing my eyes to sink deep beneath the surface of reality.

But today, I sit here, each song echoing into my ears, my soul, my heart, and I am shaking as I type. Breathing deep through pursed lips and wiping away tears. This is music. This is just beats. Just rhythm. Just voices. This is NOT my daughter’s surgery. This is NOT the pain I felt five years ago. It’s not. Today I am letting all of this wash over me and turning it into the music it’s meant to be, not the hell it used to be for me. Today I am not numb. Today I am feeling. Today I am listening. Today, I’m singing with the words. I’m dancing to the beats. I’m reclaiming the music for joy instead of pain.

Today, I win.

Today, I refuse to let this music trigger me any longer.

It’s taken me five years but I’m finally strong enough to refuse to let this beast control me anymore.

Not easy, but necessary. A step toward the new me. Toward the healed me.

Why am I sharing this with you? To let you know that yes, healing takes time. It’s a process with each step presenting itself as you are ready. If you falter, don’t despair. The step will come. You’ll overpower the step with strength from an unknown place when the time is right. It won’t be easy. But it will be powerful. And once you’ve done it, you’ll look back and see just how far your journey has brought you… and how much strength it has added to your life.

Own it instead of letting it own you.

Prematurity Awareness Day: Remembering to Breathe

[youtube=http://www.youtube.com/watch?v=jPz3YaIJkjQ&fs=1&hl=en_US&rel=0]

2 AM and she calls me ’cause I’m still awake

~Anna Nalick, Breathe~

I couldn’t sleep. It was time to pump again. If I did not pump, I stood to lose the precious supply of breastmilk I struggled to establish. Every three hours I hooked myself up to a yellow hospital grade Medela pump. The plastic horns were cold. Hard. Definitely not the warm natural manner in which I expected to be providing milk to my new baby girl. Never-mind she was in Atlanta about an hour away.

I sat on the couch, in the dark, hooked up to a whirring machine via tubes. 70+ miles away, my daughter was doing the same thing, hooked up to machines, whirring and straining to keep her alive.

‘Cause you can’t jump the track, we’re like cars on a cable
And life’s like an hourglass, glued to the table
No one can find the rewind button, girl.
So cradle your head in your hands
And breathe… just breathe,
Oh breathe, just breathe

~Anna Nalick, Breathe~

She was a little over 4 weeks early, my second daughter. A late-term preemie but a preemie none the less.

We had no idea she had a cleft palate. Or a recessed jaw. Or a compromised airway. Or a floppy tongue.

No idea she would be in an ambulance less than 24 hours after birth heading toward a NICU in the nearest large city.

No idea we were about to get a crash course in medically fragile infant care.

No idea of the plan to take our lives and turn everything completely upside down.

The plan was to have a baby. Go to the hospital, give birth to a healthy baby, nurse, go home.

Our plan failed. I failed. I wailed. I cleaned. I screamed. I cried. I wanted to leave her at the hospital. She was not mine. The hospital had made a mistake. They could keep her. I could not do this. I couldn’t. I just… I…. I was delusional. In shock. Processing but yet…. not.

Detached. Clinging to a series of routines. Clean, brush, wash, change, pump, meds, yell, scream, argue, repeat.

Stuck at home.

What I wouldn’t have given to have had her stay inside for a few more weeks.

To have known before we had her of the issues we would face.

But we did not.

I do not know if knowing would have changed a damn thing. I think it would have sometimes. But then I realize I cannot change what has been. Only what will be.

There’s a light at each end of this tunnel,
You shout ’cause you’re just as far in as you’ll ever be out
And these mistakes you’ve made, you’ll just make them again
If you only try turning around.

~Anna Nalick, Breathe~

The day we were to learn how to place an NG tube, I sprained my ankle as I got up from pumping on the couch. My husband freaked out along with me. Then I instructed him to bring me an ankle brace and ace bandage, bag up some ibuprofen and tylenol, and grab an ice pack. There was a grown up hospital across from Children’s. If things got worse, I would go, I promised. I never went. The nurses asked why I was limping. When I told them, they chided me. I did not care. I had limped around since arrival. 42 hours of labor wracked my body. I had the shakes, fever, signs of trauma. I kept going. I burned and re-tore. I should have slowed down. Rested. But I could not. My daughter needed me so I threw myself gleefully under the bus, a Cindy Crawford Pepsi ad smile glued to my face.

Why?

Because this is what a Mother does. Right? Right?

Everyone told us just get through the first year. The first year is the worst.

What they didn’t mention was the follow up appointments. The speech therapy. The potential for behavioral disorders. Allergies. Orthodontia. Additional surgeries. Ear Tubes. Feeding Tubes. Depression. Developmental delays. Hell.

They also did not mention the joy we would feel when our daughter, at four years old, finally blew out candles on her birthday cake all by herself. I cried.

Or the joy when she finally started talking and could TELL us in her voice instead of with her hands how much she loved us.

Or how much joy would spread across her face as she blew up a balloon after surgery #6 which created a pharyngeal flap to close off excess nasal emission of air previously preventing her from blowing up a balloon.

Or her giggles when she first blew bubbles.

Or how big we would grin as we listened to her teach her 2 year old brother talk.

How good it would feel to as she finally made progress.

How good it would feel to understand 80-95% of her speech instead of 25-50% of her speech.

How good it felt as we both recovered from depression and felt the sun’s warmth on our faces and in our hearts.

How grateful we would eventually be to God for carrying us through such a huge storm.

2 AM and I’m still awake, writing a song
If I get it all down on paper, it’s no longer inside of me,
Threatening the life it belongs to
And I feel like I’m naked in front of the crowd
Cause these words are my diary, screaming out loud
And I know that you’ll use them, however you want to

~Anna Nalick, Breathe~

When I became pregnant with her brother, I began to blog here. Not so much for others at first, but for me. I needed the support. I needed to vent. I needed to know I was not alone. Writing became a solace for me.

I know I am not alone.

You are not alone.

We are together.

There are thousands of us scattered across the world, just as scared as the next one. But we are not alone. We are not alone.

But you can’t jump the track, we’re like cars on a cable,
And life’s like an hourglass, glued to the table
No one can find the rewind button now
Sing it if you understand.
and breathe, just breathe
woah breathe, just breathe,
Oh breathe, just breathe,
Oh breathe, just breathe.

~Anna Nalick, Breathe~

Today I breathe. In. Out. Just as before.

But everything around me, in me,  has changed.

I have changed. For the better, I think.

Today I am stronger. I am braver. I am not stuck in that moment. I move forward. Not because I have to but because I want to do so. Because I choose to do so.

I am far from perfect. Far from June Cleaver.

I am me. Unapologetically me and unapologetically me as a mom. I do not worry about what I am doing right or wrong according to others. I don’t worry about what she says or she says or she says. What she says does not matter. All that matters is if my daughter has laughed with me today. Has she felt loved? Has she been hugged? Is she warm? Clothed? Fed?

Our house is a wreck. My kids watch TV. My kids eat junk food occasionally. I do too. We are imperfectly perfectly us.

And for that?

I am grateful.

So I breathe. I exhale. I move forward as an empowered unapologetically me.

The day I gave birth to my daughter four and a half weeks early was the same day I gave birth to a stronger me.

It just took me nearly five years to really figure that part out.

(This post is part of the March of Dimes Blogger’s Unite to Fight for Preemies event. You can learn more about Prematurity Awareness at the March of Dimes website.)

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Graham Crackers & Peanut Butter with a side order of crazy: Part II

Welcome to Part II. Today I’m sharing how I ended up in Part I. Tomorrow we’ll be at the doc’s office and then the ER. Read that section here.

Our daughter was 56 days old. She had spent just 15 days more at home than in the NICU at that point, having been born with a cleft palate, micrognathia, and glossotopsis. This is known as Pierre Robin Sequence. By the time we got her home, she had endured major surgery, been in a medically induced coma for a week, and had a feeding tube placed. More surgeries would be necessary to close the cleft of both her soft and hard palate. The cleft was complete and bilateral, meaning there was NOTHING up there but a gaping hole.

The day of her jaw surgery, I checked out. Curled up in the sleep room with Linkin Park’s Remix album and wanted to sink deep down into the chair. It was dark there. And safe. Oh so safe.

I cried, no, bawled, my body wracked with tears that I had muscle aches the next day. I wanted to leave her at the hospital. How the hell could this have happened to us? Why us? What the hell was He thinking? I pushed her away from the very beginning. Her cleft destroyed all of my expectations. Birth, breastfeed, go home. All of this in between NICU crap wasn’t in the plans. Formula wasn’t in the plan. abandonment just 30 minutes after a 2 day active labor wasn’t in the plans. My new daughter going to Atlanta without us at less than 24 hours old – SO not in the plans. My mom picking me up at the hospital – not in the plans. Our 23 month old daughter’s life being turned upside down – I felt guilty.

I didn’t take my pre-natal vitamins. Clefts can be a result of poor maternal diet, folic acid specifically. I had severe nausea and wasn’t able to eat most days. SO I didn’t take my vitamins. Ever. Looking back, depression flecked the entire pregnancy. And now this? I would have fared better in a ring with Mike Tyson.

No one told us anything. My mom did research. She got me in touch with an online PRS support group (Thank YOU, Nancy, for all you do to keep us connected.)

The NICU doctors and nurses were great.

I wasn’t.

The night of her birth, I woke up at 10pm to pee. I stood there and brushed my hair for 10 minutes. I didn’t see myself in the mirror. What I saw was a shell. I willed a spark to appear – but none did. Eventually I gave up and went back to bed, lying there, confused, exhausted, worried – slipping in and out of sleep only because physically I needed to collapse into bed!

The next day I yelled at our nurse when she tried to get us to sign consent forms for C to go to Atlanta. But she wasn’t supposed to go until later in the week. What do you mean this AFTERNOON? Where are you taking my baby? Why are we.. you can’t take her. You just can’t. you.just.can’t.

More hustle and bustle. In and out. Charlotte seems to spend the entire day away from me. I spend the entire day away from her. But at one point, I am in the bathroom and she’s in her bassinet in the room. I hear a door open. A man walks in and I freak out. He prays with me and leaves. I’m scared and go to the desk to ask that no one be allowed in the room unless they are on a list I’ve scribbled up. On the list are our parents. No one else, no one else. I am not in the mood for random strangers to stop by. (I think he went to our church)

By that afternoon, we meet the transport team. They seem nice enough. Chris has bought a little lamb to ride in the incubator looking rig with her. She’s healthy, they tell us. Oxygen sats are good, breathing is good, she’s healthy. She’ll be fine. We’ll meet your husband there. We sign the first of a slew of paperwork.

Chris hangs out with me after she leaves and eventually he has to leave too.

I pace in the hospital room when I am alone. Pace, pump, clean, pace, pump, clean.

I am a caged animal blaming myself for my daughter’s issues. I caused this by not taking my prenatal vitamins. This hell is all my fault. I did this to my poor baby girl.

Later that evening, my in-laws swing by with On the Border and my daughter. They stay for a few minutes. It’s painfully uncomfortable, perhaps a misconception on my part. After they leave, I voraciously eat my now cold food as I watch Nothing to Lose, my go to happy movie. It doesn’t work.

By now, Chris is in Atlanta. I call him around 10pm and cry so hard he can’t understand a damned word I’m saying. We hang up and I wail myself to sleep. If I had given birth via c-section, I am sure I would have torn stitches. Again, I wake up to pee in the middle of the night. Again, I stand and brush my hair. But this time I straighten up the already immaculate room as well before going back to bed.

The following morning, one of the OB’s from the practice offers me Prozac. I decline, saying that I want to see how far I can get on my own before I go jumping into meds. I’m stubborn like that. The OB I hated came by to tell me we were doing a great job and everything would be okay. I wanted to believe him.

Later that day, my mother picks me up. We pick up Allison and head home. I collapse. We manage to get a rental breast pump delivered that night (oh sweet relief as my milk has finally started to come in). I double pump in front of my mother using a t-shirt as cover. Eventually I give up on trying to hide the pumps.

That Friday I went to Atlanta to see her in the NICU. I’m heartbroken. I don’t want to be there. We’re not supposed to be there. What do I know about NICU babies? Why am I mother to one? Who the hell approved this script change? I didn’t.

Over the next few days, Chris and I spend some time together at his Uncle’s house as we ferry back and forth to the hospital. We talk about having another baby (see how far gone I was!) and I quietly wish we could leave her a the hospital but don’t tell him this for a couple of weeks.

That first week the feeding team wants to get Charlotte up to speed but she’s not cooperating. So the Plastic Surgeon suggests a jaw distraction which gets the feeding team pissed and puts us in the middle. We go to the garden at the hospital and I cry on Chris’ shoulder.

We decide to go with the surgery. At 9 days, she’s prepped and we leave her for surgery downstairs. I cry – again. His parents are there. I don’t want them to be but he needs support and I’ve chosen to respect that. I get the Mp3 player and disappear into the sleep room. I’m safe there. Very safe and lost in Linkin Park.

She comes back up in a medically induced coma. A machine breathes for her, she’s swollen, shiny, and tiny. But she’s had a good surgery. She made it through.

That afternoon, my husband calls the OB for me. I’m not doing well. We make an appointment for the next day. I made it 9 days, I tell them. I need something. I need help. I want to function because right now, right now I am not.

Right now, I’m brushing my hair, changing my pads, washing my hands, washing my pump parts, and it’s all very routine and necessary but it’s also very comforting. Very very comforting. I use the same bathrooms at the hospital. I use the same sinks at the NICU. I don’t stray outside my comfort zone. I kept to this routine the entire time she was in the hospital. I got edgy if it changed. At all.

Beginning of April I sprain my ankle as I get up from pumping. It’s the day we’re supposed to learn how to place an NG tube so we don’t have to have more surgery for a G-tube. I wrap up my ankle, bag up the ibuprofen and tylenol and go. There’s a grown up hospital across the street if it gets bad, I tell my husband.

I can’t place the NG tube. I officially suck, I tell myself. I suck. She’s angry at me because I suck. I can’t take care of my daughter. What the hell kind of mother am I? She’s my daughter. I should be able to do whatever I need to care for her. But I can’t. And so I have failed. Again.

We decide to go with a g-tube. It’ll be easier for me. I feel guilty for making her go through a surgery because it’ll be easier for me but easier for me means better for her. So that makes it okay, right? Right?

Right.

At 21 days old, she comes home. The ride home we can’t figure out how to get her pump to work. That night we can’t get it to work. I stay up with her because I can sleep the next day. Chris has to go to work. I don’t sleep well. I pump, I feed, I care for our 23 month old daughter and two dogs. A vicious cycle has begun.

Within two weeks, I ask for my meds to be upped. They’re not working. I’m stressed. My thoughts are getting more and more intense. They need to stop. The meds will make them stop. Make them stop. MAKE them stop.

Within three weeks, the thoughts are firing so rapidly at me I wonder if I’m in front of a death squad. I’m disgusted and repulsed. Pillows, visions of death, horrible deep dark secrets slam into me every few minutes. They’re like contractions on speed, really, waves that don’t ever seem to stop.

Within a little over four weeks, I’ve broken down. Irretrievably.

 

Follow me to Part IV

@karma_D finds her Postpartum Voice

@karma_D, Lisa, found me via the #PPDChat at Twitter. At this week’s Just Talkin’ Tuesday, she expressed a desire to share her story but said she wasn’t ready to do so on her own blog yet. Lisa wanted somewhere to share her story anonymously in order to help other moms. I offered her a place here at My Postpartum Voice. This is truly what I want this site to be about – the power of sharing our stories to help one another find our own Voice as we journey through recovery.

Lisa’s story is powerful. Her NICU start reminds me of my own postpartum after the birth of my second daughter. It’s a rough start for sure and I hope Lisa finds the same strength as I have as she journeys towards recovery. Please don’t hesitate to send @karma_D some love. And if you’re a mom in need, you can follow me by clicking here. You can also visit Postpartum Support International to find a Coordinator near you. You are not alone, you are not to blame, and you will be well.


I have post partum depression.  That might be a shock to friends and family, but no one was more unprepared for it than I was.  My pregnancy was incredible.  I felt amazing, better than I have in years, both physically and emotionally.  I felt strong, hopeful, like a dream a lifetime in the making was finally coming true. Those months were full of planning, anticipation, expectation, all culminating in the beautiful instant my son was born.  It was the best moment of my life, euphoric almost in the sudden absence of pain and joy of meeting him.

Within hours of his birth, he was taken to the NICU for breathing difficulty, and so began the downward spiral, full of broken expectations.  Instead of bonding with a newborn in the hospital room surrounded by adoring guests, we shuffled back and forth to the NICU to stand around a helpless baby attached tubes and wires.

The night we came home from the hospital without our son was horrible. Pulling into our neighborhood late that night I vividly remember looking out the car window and feeling like I was witnessing life from another person’s body.  Reality seemed unrecognizable.  We arrived home to flowers and hospital bags dropped off earlier by our parents, mountains of gifts and food cluttering the house.  In that moment I couldn’t see this wonderful outpouring for the blessing it was, but instead as anxiety inducing clutter.  Exhausted, my husband went to bed but I stayed up and cried.  I felt alone, scared, not myself.  It was not at all the homecoming I had anticipated.

When we finally did bring our son home a week after his birth, things didn’t get better.  Breastfeeding difficulties often left one or both of us in tears.  It was not at all the bonding experience I had hoped for.  I pushed through because I wanted so desperately to do the right thing, to act like a good mother even if I didn’t feel like one.  I was tearful and scared because I didn’t feel like myself, and when I did manage to communicate this to my husband all I could muster was, “It’s so hard.”  He did his best to reassure me and I tried to reassure myself it was just “baby blues” and sleep deprivation.  I minimized my symptoms to the OB and Pediatrician, who screened me for PPD but didn’t pick it up early on.  I tried to will it away and hoped things would get better, and kept acting like everything was fine.

Months went by and it never did get better, and the mood swings actually got worse.  One moment I was okay, the next agitated or enraged, then crying and despondent.  I yelled a lot, mostly at the dogs or my husband.  One afternoon when my son was crying I yelled at him to “SHUT UP!  JUST SHUT UP!”  The guilt of yelling at him was awful.  I believed it was going to be burned in his psyche forever and he’d always think I was crazy.  Still not wanting to think the mood swings could be PPD, I blamed it on my IUD.  Eventually I did tell my OB about my symptoms (though admittedly I glossed over them again), and she said she “wasn’t getting a good read on (me).”  She agreed it could be the IUD but convinced me to give it some more time, and encouraged exercise and DHA supplements.  Finally I demanded the IUD removed as I wasn’t getting better, but even then no one diagnosed me with PPD.

I spent 6 months of maternity leave waiting for things to look up.  I kept hoping to turn the corner but never did.  Instead, the mood swings continued, and intrusive thoughts began.  I pictured horrible things happening to me and my baby and felt helpless to prevent them.  I often lacked motivation – even the simplest tasks seemed too much to manage. Once I went an entire week without leaving the house because it was just so overwhelming.  My mood wasn’t always down.  There were lots of times I felt fine, happy even, and capable, but they never lasted long.  These moments of calm made me think I was okay.  I never wanted to harm myself nor my baby, I got up and dressed every day, and I didn’t really feel like what I believed depression to be, so I never admitted what was happening in my head and never asked for help.

Returning to work was a blessing and a curse.  It gave me a much needed break but the guilt was crushing.  The mood swings got progressively worse until one night (Valentine’s Day), I got so worked up over my son’s difficulty going to sleep that I exploded.  After slamming the door to his nursery I went and hid under the covers, my body buzzing and feeling like I might explode out of my skin.  My thoughts raced and I just wanted to go away.  I didn’t want to die but I didn’t want to exist either, at least not then.  Later that night I had another fit when the baby woke up.  My husband asked, “What is wrong with you?” in a tone I’ve never heard from him, one that suggested disgust. That was my rock bottom.  I couldn’t hide it anymore.  The next day I finally told my husband I thought I had PPD and made an appointment.  I saw a different doctor and started treatment.

The improvement has been rapid.  I feel hopeful again, motivated, more clear headed.  I can reason rather than shutting down.  The anger is better, the crying is better.  The anxiety still creeps in and I do have setbacks.  On those days I just try to survive until tomorrow.  I’m learning to recognize triggers and figuring out coping mechanisms – Blair’s STOP has been helpful, as has reading and chatting with other moms who’ve experienced PPD.  (At the same time, I feel the need to control what I’m exposed to so I’m careful about following blogs and such and limiting potentially upsetting material.) I’m trying to let go of expectations and enjoy the moment more. My bond with my son is growing and I am starting to appreciate those wonderful Mommy emotions I had hoped to experience immediately. I wear a locket every day and inscribed on the back is “Before I understood your words, I understood your love.”  I have an amazing son and I know he understands the bond, too.

I think a lot about what it will be like next time – the “do over” as I call it.  In the darkest moments of PPD I swore we would be “one and done” – I couldn’t fathom ever going through this again.  Now, I am hopeful.  Things will be different.  Per my doctor, I’ll likely start meds immediately.  I’ll make a strategy for how I’m going to get support, something like a birth plan but for postpartum, and share it with my “team.”  I am almost certain I won’t breastfeed.  The stress of nursing was a huge trigger, even after all the initial issues as I worried about pumping and supply. I’ll also know I’m not alone.  I wish I had believed that months ago.

The Great Return

Tomorrow we go to Atlanta with Charlotte for follow up with the Cleft Palate Clinic.

I would be lying if I said I was not nervous.

This appointment was supposed to have taken place when she was nine months old.

She’ll be three years old next month.

Charlotte in the NICU

Charlotte in the NICU

It took me this long to get to the point where I could even think about facing the hospital where she spent her first 21 days of life without having an anxiety attack.

This is the same hospital in which I tucked myself into a corner of the sleep room in the NICU area, blasted Linkin Park over the MP3 player and checked out. No desire to come back. Just wanted to stay curled up under the blanket and pretend none of this was happening. Nope. Not to me. I didn’t have a baby in the NICU. She wasn’t downstairs having major jaw surgery at just nine days old. We weren’t doing this. I was stuck in the middle of a really bad dream and I’d wake up at home with a normal baby.

I can still see that hallway, that sleep room, my nostrils fill with the scent of the surgical soap that killed my hands as I washed them every time we went into the NICU, every time i pumped, every time I went to the restroom there.

I remember the pumping rooms in which I spent most of my time staring at the clock wishing I could nurse my daughter instead of shoving my breasts into hard cold flanges, flicking a switch on a massive antique pump, adjusting the suction to just below Holy Crap that Friggin Hurts.

But tomorrow is the day we finally go back.

Chris is going with me as a safety. I don’t know how I will handle this. I’m hoping for the best. Praying for the best. I keep thinking about how far we’ve come since then and how lucky we are that we don’t have a lot of the problems a lot of parents have with their Pierre Robin kids. She’s talking, using sentences nonetheless. She’s breathing on her own. She eats – oh lord, she eats – she’d eat herself sick (and has) if we let her. No oral aversions here.

But she does have a fistula – an opening in her palate repair. It’s at the back of the throat. And her enunciation is off – it’s nasal. She can’t say “s” without blowing air through her nose. Chris and I understand maybe 75 – 80% of what she says and it breaks our hearts that we can’t even understand our own child all the time. It’s led to frustration on both sides and is now turning into a discipline issue.

I’m afraid we’ll be told she needs surgery. I’m afraid of what that will mean for us and for her. I’ve talked with her about the possibility of surgery. She knows that they would give her some medicine to help her go to sleep and fix her mouth while she was asleep. That she might be owwwy when she wakes up and that they’d have medicine ready to help with the owwwy.

She seems cool with it.

I’m not.

I have forgotten how to let her go with the doctors – I got so good at it when she was in the NICU but she’s been all ours for almost three years now. I don’t want to hand her over to be taken to surgery. I want to go with her! That’s my baby you’re taking!

But now I’m thinking too much and need to stop and let God do all this worrying for me.

Please pray for us as we face tomorrow.

Pray for a peaceful heart and soul for me.

Pray for a pain-free and comfortable day for Chris as he goes with us.

Pray for a positive evaluation.

Pray that I am able to handle any news of surgery with strength and grace and truly give it to God.