Post Op Day 2 - Off the Vent!

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I cried a lot of tears, today. That dang vent tube finally came out. I wish I could convey the fear that thing instilled in me—more than the surgery. I’ve known too many kiddos who have struggled with getting off the ventilator. One who was lost because she couldn’t. Every day longer on the vent comes with a price. While I suppose Lydie wasn’t on it for an extremely long time, the terror in my heart and the delays along the way made it feel like forever. And to watch the monitors knowing that my child was not breathing—she was dependent upon a machine to breathe FOR her; to force life into her...

I asked God for some miracles, today. When her sedation wore off enough for some sleepy smiles to sneak through, that was a gift. When it wore off a little more (gotta be awake to want to breathe, apparently) and those big blue eyes that I haven’t seen for days locked on me, it was a bigger gift. “Hi, Baby!! Mama’s here for you!” And when that dang scary but life-sustaining tube came out and her low-muscle-tone, swollen airway held and filled with THE MOST BEAUTIFUL hoarse little cry I have EVER heard... that was a miracle. I am still crying. Once again, every day, a thousand times a day, God is good. 🙏🏻 #misslydiefaith #openheartsurgery #heartwarrior #theluckyfew

Post Op - Next Day

Little Lydie is doing well, today! She is making small but important strides. We started feeding her (yellow nose tube) today and I am sure that feels good! You’ll notice she still has the ventilator tube in her mouth. That was going to come out today, but girl took things into her own hands and extubated herself at 4 AM last night. Ouch, but can’t say I blame her—no one likes a tube in their throat. The nurses were right there to put a new one in and she’s fine, but did cause some swelling to her poor little throat so they are giving her an extra 24 hr for that to calm down. Also she is well swaddled, now 😉 They’ve been weening down the vent today in hopes of extubating early tomorrow, so both those tubes could be gone 👏🏻👏🏻 Her heart looks good and some of the things we thought would be huge problems she has just cruised through! 💪🏻🙏🏻 Her heart rhythm is still a little off, so we are hoping that issue resolves in the next couple days 🙏🏻🙏🏻🙏🏻 All in all she is doing well. It’s hard to see her like this, but we stroke her and talk to her and keep in mind that this is all baby steps to a better life! Huzzah for modern medicine!!!

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Tiny girl, many machines  

Tiny girl, many machines  

The hospital IT system went down the day of Lydie’s surgery so Dan spent the whole next day putting out fires and responding to requests for his dept. Because he had nothing else to stress about, already 🙄❤️

The hospital IT system went down the day of Lydie’s surgery so Dan spent the whole next day putting out fires and responding to requests for his dept. Because he had nothing else to stress about, already 🙄❤️

The Playlist in My Brain #2

I spend a lot of time listening to and pondering music, these days. During those long and sometimes frustrating feedings, singing or listening to music calms both me and Lydia. When I write these posts, I envision someone reading the description & excerpts, then listening to the song, one by one. Whether that’s what actually happens or not is up to you, but that’s what I had in mind if it helps these posts make sense. I love poetry, so this series comes in part from that. This is the "moving forward" set of songs and the ones that help motivate me during the hard moments. Truthfully, today was a frustrating day, so here's to sending good vibes out into the universe and hoping that tomorrow goes better. 
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For acceptance. For driving down the canyon with your arm lazily riding on the wind out the window. For parking and sitting on a remote rock with your eyes closed while the sun warms your face. For finding peace with the here and now and realizing that life is beautiful, even with the hard. For seeing and appreciating everything with new eyes.

Little Wonders - Rob Thomas

Let it go
Let it roll right off your shoulders
Don't you know
The hardest part is over?
Let it in
Let your clarity define you
In the end
We will only just remember how it feels

Let it slide
Let your troubles fall behind you
Let it shine
Until you feel it all around you
And I don't mind
If it's me you need to turn to
We'll get by
It's the heart that really matters in the end

Our lives are made
In these small hours
These little wonders
These twists and turns of fate
Time falls away
But these small hours
These little wonders still remain

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For Dan, who knows. 
 

If That's What it Takes - Celine Dion

You're the bravest of hearts, you're the strongest of souls
You're my light in the dark, you're the place I call home...

Through the wind and the rain, through the smoke and the fire
When the fear rises up, when the wave's ever higher...

When the storm rises up, when the shadows descend
Ev'ry beat of my heart, ev'ry day without end...

I will lay down my heart, my body, my soul
I will hold on all night and never let go
Ev'ry second I live, that's the promise I make
Baby, that's what I'll give, if that's what it takes

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For Lydia. A promise.

I Won't Give Up - Jason Mraz

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold

And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?...

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make

Our differences they do a lot to teach us how to use
The tools and gifts we got, yeah, we've got a lot at stake...

We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not, and who I am...

We've got a lot to learn
God knows we're worth it...

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

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From a mama to my baby girl. For the ten sizes my heart has grown since you came into our lives. For the tiny sacred moments that make everything else worth it and my awe at the depth of you. For love and peace and a very bright future.

Lullaby - Dixie Chicks

They didn't have you where I come from
Never knew the best was yet to come
Life began when I saw your face
And I hear your laugh like a serenade

I slip in bed when you're asleep
To hold you close and feel your breath on me
Tomorrow there'll be so much to do
So tonight I'll drift in a dream with you

As you wander through this troubled world
In search of all things beautiful
You can close your eyes when you're miles away
And hear my voice like a serenade

How long do you wanna be loved?
Is forever enough, is forever enough?
How long do you wanna be loved?
Is forever enough?
'Cause I'm never, never giving you up

Birth Story

Preface

Journal Entry for March 29, 2018

“I wonder if I opened up this journal and wrote ‘my heart hurts’ every day if it would eventually hurt any less?”

That is the first and only thing I have been able to write in my journal since Lydia’s birth, so far.  Because it’s hard. To relive the memories and the emotions and honestly write them down is hard. But now, now that she’s six weeks old, I’m caught between “I need to write it down… maybe I’m finally ready…” and “If I don’t write it down now, I’m going to forget.” So we are going to try.

But if it’s hard to write, I’m sure it will be hard to read, so if you’re feeling judgmental or weepy, maybe just don’t. Especially since it took an incredible amount of courage and vulnerability to write these things down. And for those who keep going, and maybe even Lydia herself who might read this one day, just know that this is a real life example of “opposition in all things,” “for if they never should have bitter they could not know the sweet.”

One week before delivery-day.

One week before delivery-day.

 

***

“Did you know? Did you have any idea?”

It’s the question that everyone asks. Friends, neighbors, nurses, technicians. Everyone wants to know: did we know? The short answer is, no. We did not. It wouldn’t have made much difference if we had—we would have still welcomed our girl with open arms—but maybe I would have been a little more prepared for our first meeting.

Of course, I was flagged at my 20 week ultrasound because her lungs “looked a little bright” and her femur was measuring small. The nurse told me not to google anything before going to Maternal Fetal Medicine for a more detailed ultrasound, but of course I did. Searches for bright lungs, the primary concern, revealed a lot of scary conditions that could require surgery after birth. And the short femur, well, that IS a marker for Down syndrome, which completely freaked me out. But her brother had measured exactly the same in utero (I actually looked up his ultrasound measurements and compared them) and he was completely fine. Still, I prayed (BEGGED), “Please, Heavenly Father, PLEASE let her body be fine. Please let there not be anything majorly wrong. And PLEASE bless her to not have Down syndrome.”

So we went to Maternal Fetal Medicine, where the specialist looked her over really well in the ultrasound. They examined everything---the brain, the fluid behind her neck, her heart, her femur. After a lengthy investigation, this is what they told us: “She’s fine. Her lungs look bright because of the settings on their machine and because you scan well. As for her size, I’m not even worried about it. COULD she have Down syndrome? Well, yes. But there is nothing here to indicate it. Everything looks fine. I would say you have the same odds as anyone in the population.”

Exact words.

We had a follow-up appointment with Maternal Fetal Medicine four weeks later, just to make sure things still looked good and to make sure the placenta looked ok (there had been some questions about how the umbilical cord was attached to it). A different specialist looked at the ultrasound. The placenta issue had resolved! Again, they looked at her heart, her fluid, her size, and everything else. This specialist also confidently said, “Looks good to me! She’s fine. Congratulations! You don’t need to come back.”

So at that point, I put my fears aside. I trusted that everything was ok with about 98% of my heart. The other 2% were reserved for her birth, when, I told myself, “I’ll finally FULLY relax when I can see in person that she’s perfect.”

 

I’m shaking. My whole body is shaking, especially my hands. That’s how hard it is to relive this. To get it out.

 

We went to the hospital about 9 pm on Friday night. Dan had spent a grueling day in job interviews up in Salt Lake, then had driven home in a snowstorm, picked up the kids from Grandma’s (she babysat them while I had a doctor’s appointment that afternoon), and we learned that one child was complaining horribly about an ear ache, so Dan ended up taking him to the instacare. Meanwhile, I was in labor, and trying to decide if my water had actually broken or not (it had).  So with kids home from the instacare, antibiotics administered, everyone finally put to bed, and Grandma called to come over, we headed to the hospital where they admitted me and labor began in earnest.

I was as prepared as I could be for labor, and it went smoothly. We walked around the hospital halls, looking at the beautiful pictures of newborns that lined the walls, wondering what our sweet baby girl would look like and what she would be like. In the room I bounced on a birthing ball and Dan applied counter pressure during my contractions. It wasn’t until I hit about an 8 that I said, “You know, this day has been long enough, let’s get the epidural.” It was my first successful epidural! The anesthesiologist was great, our nurse was sweet, and we laughed and talked our way through labor, anxiously and excitedly waiting for baby girl.

Before long, I was pushing and then she was here! The cord was wrapped tightly around her neck, and she was “stunned.” They took her over to the bassinet and worked on getting her to cry. None of my kids have been criers at first, so I wasn’t worried about it. Sure enough, before too long they were handing her to me.

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The first thing I saw was a bright red face and a lot of blonde hair sticking straight up. Classic newborn attractiveness. I later realized that there is a picture of me as a newborn that looks exactly the same: swollen red face, blonde hair. Totally not my favorite picture, but also completely endearing now since my little girl looked exactly the same! But I didn’t think about that at the time, because I was busy looking closer. And that’s when I saw.

While the picture above doesn't fully portray what I saw, her face had all the markers of a child with Down syndrome—the shape of her eyes, especially. But wait! MFM had told me she was fine! And all of a sudden that 2% of doubt that I had filed away until I could see her in person came roaring back to the forefront and became my whole reality. I knew.  She did have Down syndrome. I was completely shocked and devastated.

But no one around me was saying anything. The nurses were all busy doing their thing, and nobody acted like anything completely earth-shattering and life-changing was going on. In a brief moment of privacy I turned to Dan. “She looks like she has Down syndrome to me,” I gasped. “That’s what I thought, too!” He said, equally surprised. More frantic glances at the nurses, the doctor--anybody. No response. Finally I turned to my labor nurse, who was a sweetheart, and feeling awkward and almost ashamed in that traumatic moment, tentatively asked, “So… she looks a little… different to me…” “Yes,” the nurse replied, “Someone from nursery will come up to look at her.”

And that was all.

But we knew.

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***

The nurse did come up. By a tender mercy from heaven, she “happened” to be someone who knew Dan growing up. I took so many human and child development classes in college that I lost count of them all, and as the nurse pointed out the markers to me (she couldn’t offer an official diagnosis), I knew what they meant. Poor muscle tone, low-set ears, almond shaped eyes, extra skin at the back of the neck, flat bridge on the nose, single deep crease in the hand: She has Down syndrome.

I made a decision in that moment: I was not going to deny this. I was not going to hold out false hope for the results of the genetic test to come back. This was it. This was the proof. As unbelievable and shocking and hurtful as it was, this was real.

My daughter had Down syndrome.

To be honest, I don’t remember much after that. I remember Lydia nursing well, and how happy and relieved that made me (nursing is always my biggest stress). I don’t really remember leaving the delivery room or arriving in our recovery room. I don’t remember when they took her away to the NICU or why. I do remember them telling me the pediatrician would be by in the morning and that he would be able to “tell us more,” (did that mean give us some official diagnosis?). And I remember being left alone in my room with Dan. I’d never been left without my baby after giving birth, before. It felt so wrong. Everything was wrong. But it was real. And it was night, and we were supposed to be “getting some sleep.”

Thus began the longest night of my life.

I didn’t sleep. They turned off the lights, I laid down on the bed and closed my eyes, but I didn’t sleep. I prayed. All night long.

I don’t even remember what I prayed for. Strength, probably. Perspective? Hope? That, since she was in the NICU, she’d be ok? I think I just reached out to Heaven because more than any other time in my life, I needed Heaven to reach down to me. To be with me. To help me through this. Because if I knew anything I knew this: I couldn’t do this. This was for someone stronger. Someone without my weaknesses. This was not for me. My heart was broken, and I was terrified.

Hours and hours went by. I must have at least drifted into some kind of sleep because I had the sensation of waking up and realizing that it wasn’t just a dream. The nightmare was real. My heart was sick and bleeding. My baby was still gone and Dan and I were alone in the hospital room where a picture of a “normal” newborn hung on the wall looking down at me.

“That’s not my baby,” was all I could think.

***

That was probably the low point. In the morning, the pediatrician did come in. He confirmed that she “did have several markers of Down syndrome” (I guess no one wants to give the official diagnosis in a case like that without the genetic test results to back it up). I had already accepted this, but then that sweet man took me by surprise. Tears filled his eyes as he told us, shocked and grieving parents that we were, how special children with Down syndrome are. What a blessing they are to their families and to others. He cried with us and comforted us. In our moment of tragedy and trauma he offered both empathy and hope.

It melted me.

I will love that man forever.

The NICU nurse from the night before was back, as well. When the pediatrician was finished speaking, she added something through her own tears. “You need to grieve,” she said. “It may seem strange, because you just had a baby, but this is not the child you thought you were going to have, and you need to acknowledge those feelings and let yourselves grieve.” The permission to feel the hurt was a gift. Because you feel guilty crying over a precious new baby you’re supposed to be excited about. She was beautiful and strong, true, but completely different than what we were expecting. We were traumatized. We were scared. We were in shock. It was all so much to feel. And allowing ourselves to feel the hurt was the first step toward healing.

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Thoughts on World Down Syndrome Day

I’ve always been awkward around people with special needs. Never knowing what to say or how to act. How to relate and not offend. Feeling like it was easier to just avoid interaction and keep us all comfortable. To love and respect at a distance. That was me.

And then I had a daughter with Down Syndrome and my world changed. Drastically. Pushing me way, way out of my norm and my comfort zone.

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Over the last three and a half weeks I’ve had the opportunity to care intimately for someone with special needs. To make major decisions regarding her care. To be the resident expert on her. And yes, even to be her advocate. And you know what it’s like? Basically just being a mom to my new daughter.

Not to minimize her diagnosis. It’s also been a three week crash course in Down Syndrome; reading books, meeting with doctors and social workers, arranging tests, and planning for the future. It’s been emotional and eye-opening and life-changing. But one of those life-changing elements has been learning to see with new eyes. To look at my Down Syndrome baby and see… Lydia. Lydia the person, instead of her diagnosis. Lydia with her own personality as a unique member of our family and someone new to love. Just, Lydia.

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I’m not an expert on this yet, but I hope that with practice I’ll become one. That some day *Lydia* is all I’ll see. Of course, she’s a newborn, so there is a lot that you just can’t tell, yet. But, while it does profoundly affect our lives, there’s more to her than Down Syndrome.

Who is Lydia?

First, she’s curious. While she still sleeps much of the day, when she is awake she is actively looking around, EVERYWHERE. That little head and those little eyes are going, going, going. Trying to take in the whole world around her. I love that.

Second, you should see this girl do tummy time. I remember subjecting my boys to this most miserable of newborn exercises, and they always gave it a few tries before collapsing in a face plant of infant tears. Yesterday I tentatively put Lydia on her stomach, expecting that with her low muscle tone she wouldn’t be able to do much and would quickly get frustrated. And it’s true, she struggled, but she didn’t give up. She didn’t collapse into tears. She fought. It was pretty remarkable to watch that little girl strain to lift her head, rest, then try again. She didn’t cry. She is fierce and persistent and determined. It amazed me and gave me a lot of hope. We’ll need exactly those attributes.

Finally, there’s a quiet, optimistic peace about this girl that I appreciate. She is gentle and positive by nature, and that is a gift. And she likes to cuddle, which this mama loves.

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I’m so new at this. And awkward. And incredibly imperfect and humbled. But if there’s one hope that I have for my daughter and her future, it’s that people will make the effort to get to know her and love her and respect her for who she is: Lydia. And that they’ll allow and encourage her to be her fullest self.

Today I’m grateful for all those who have gone before. For researchers and doctors and interventionists. For parents and teachers and members of society and friends who have realized that people with disabilities are people, first.

And I’m grateful for Lydia. Who came to earth as her own person, and who already is a gift and a blessing and an expert at opening her mother’s eyes.