Pictures On the Wall

The night Lydia was born, my water broke and we checked into the hospital full of all the excitement and hope common to parents who have just spent nine months (or longer, as was our case) dreaming of their child to be. During the early stages of labor, my husband and I walked the halls of the labor and delivery wing, gazing at the beautiful pictures of newborn babies that lined the walls while I pushed through contractions. “What will she look like?” we wondered, placing ourselves and our little girl in every image. “Who will she be? What beautiful love will be ours?”

As labor progressed, we left the pictures in the hall and returned to our room. The work was harder, now, but still full of hope and excitement. Once I had my epidural, there was even laughter! And then it was the final push and at last, at last! The baby girl I had been dreaming about for all my life was here!! The nurses weighed her, bundled her up, and placed her in my loving arms. But as I gazed for the first time on that beautiful face, my heart stopped. It actually filled not with hope, but fear. This beautiful, beautiful miracle rainbow baby was not the little one I had expected. She was markedly unique. As I looked on her in shock, no one around me said anything. No one even looked at us. I had to ASK, and with that asking came a sense of shame and brokenness.

There’s so much you don’t know in those first hours during and after a birth diagnosis. You don’t know, for instance, that everything will actually be ok, even though you feel like your world just fell apart. You don’t know that your heart will fill with ten (100?) times the amount of love and even thankfulness that it feels fear in that moment. I know a lot of moms regret the initial feelings and thoughts they had in that moment, but I try not to judge myself too harshly. Because it’s new, and it’s painful, and you JUST DON’T KNOW.

But the emotions are real, and they have to be dealt with. And I was not in a good state of mind when they took my baby to the NICU and took me to my room to “recover.” The first thing that greeted me when they wheeled me into my room was a large picture of a perfectly healthy, typical newborn. It seemed in that emotional moment like an affront. A brutal reminder of what then seemed like a lost ideal. “That’s not my baby,” I thought, in shock.

The whole time sweet Lydia was in the NICU I walked up and down the halls of Mom and Baby from my room to my daughter’s, passing picture after beautiful newborn picture. There were full body shots and detail shots of babies of both genders and every race. But there were no special needs babies. There were no NICU babies with monitor leads or tubes. For the first time in my life, I was part of a real minority group living in someone else’s world. And it hurt.

One of those early days, when everything seemed made of emotion and haze and time, the CEO of the hospital came to us. The hospital had recently received an email from another mother, he said. This family had also had a baby with Down syndrome, just one year before, and they too had a birth diagnosis. While the mother complimented the excellent care she and her child had received in the hospital, she mentioned that she wished for one thing: that there had been a picture of a baby with special needs on the walls. Instantly recognizing the need for change, the hospital considered buying a stock photo of a baby to hang on the wall. But then Lydia was born, and there was the opportunity to make it much more personal. “Would you mind,” he asked, “if we had a picture of your daughter taken to hang on our walls?”

Well, we cried. It’s hard to articulate what that moment and offer meant to us. It meant that our feelings were validated. It meant that even though it seemed like it, we were not alone; another family out there had walked this path, before, and they were reaching out to us in love. Most importantly, it meant that our daughter mattered. Her life was worth celebrating, too. And even being born with a disability, at just six days old she was stepping up, making a difference, and changing the world for the better. “Oh, you thought she was limited?” Heaven seemed to be saying. “No, no, Mom. Think again.”

 Photo Credit: Matthew Schramer

Photo Credit: Matthew Schramer

This is the picture that now hangs in that hospital. It doesn’t match any of the other carefully posed and minutely edited images that hang alongside it. It was taken on a hospital bed surrounded by beeping monitors instead of in a studio surrounded by fluffy props. But it is real. So real. That’s my girl, and she, like so many unrepresented babies like her, is beautiful. While it is flattering that my girl is now the one whose image is on the walls, that’s not the most important part. What matters most is that these kids are represented and valued and their lives are celebrated, just like everyone else. It’s a lesson we learned early in this journey, and one I am entirely passionate about.

Through a series of miracles, I was able to befriend online (and eventually meet in person) the mother who sent the email to the hospital, and her darling, amazing girl. We’ve messaged each other almost every day since then, and they have truly welcomed us into this community and offered such love and support. We consider each other dear friends. It is amazing how God will place just the right people in your life at just the right time. That mother not only reached out to me in love in a critical moment; she also empowered me. Through her example and influence she taught me about value and love and advocacy and what being a special needs mom is all about.

This account used to be my photography account, before it got hijacked by more important things. And with this hospital photograph thing I’ve thought a lot about that. I hope, in the future, to use my voice and Lydie’s light (as well as some of her friends’ if they’ll let me) to "put these kids on the wall” as it were. Because now I know what I didn’t before: that they are beautiful not broken, and life with them is beautiful and full of hope and completely worth celebrating.

Is there a picture of a child with critical care or special needs hanging on the walls in your hospital? Write a letter. Give them a call. Let's get those kids up there.
 A close friend recently delivered at our same hospital and sent me a picture of her son “meeting” Lydia.

A close friend recently delivered at our same hospital and sent me a picture of her son “meeting” Lydia.

Out

Out and about at the park. We’ve got a whole summer to make up for! 😘

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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 🙄❤️

Open Heart Surgery Day

Well, miracle of miracles we made it. I am still a little under the weather but steadily getting better. Maybe 87%? 😂🙏🏻🙏🏻 Amazingly Lydia is healthy and cleared for surgery. After a rather nervous day yesterday we finally got some sleep and made it to the hospital for check in before 6:00 AM. Back in the pre-op area we dressed Lydia in her gown and giant pants after swabbing her down with a second round of “kill all the things” wipes (first round was last night). We met with the surgeon, Dan for the second time and me for the first. He is an extremely talented man with an excellent reputation. Hearing the rundown & risks from THE man himself was sobering, as I’m sure he could tell from my huge eyes. Then a couple of nurses stopped by to evaluate Lydie and finally the anesthesiologist came to talk us through things and walk us down the hall. He was sweet and reassuring and I felt ok handing my baby girl over to him at 7:35. It wasn’t like just one moment of hand off for me as much as a thousand little moments all morning. All weekend. My heart is on that table with her. 

We can feel the prayers and God’s love lifting us and bringing peace that truly “passes all understanding.” I’m sure there are angels with us all.  

The surgery is scheduled to last 5 hrs. Send all the prayers. 🙏🏻🙏🏻🙏🏻❤️

 

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Pre-Op

Well, it’s been a crazy week over here. We’ve been running around doing all the last minute pre-op stuff and dodging curve balls, besides.  

On Tuesday, I took Lydie in to her pediatric cardiologist for our last visit before surgery. I really appreciate her cardiologist; he always answers all my questions in a way that I can understand, and he respects my opinions. Having said that, cardiology days are always hard because they are so dang long. Appointments can take up to four hours and inevitably everybody is hungry and tired by the end of it! I was ready this time with two bottles in reserve and I did NOT forget the binkie for the echo (unlike last time). True to form, though, we only got just over one ounce of food in baby girl before we had to leave. It’s like she knows when the pressure is on and will not be rushed. Dah! So I pretended like that wasn’t frustrating or going to haunt us later in the day (it DID) as we tried to make quota, and headed out the door. 

The appointment itself went really well and miracle of miracles we didn’t have to do another echo!! First time, ever I believe! So we got to leave early—wahoo!! But before that we did an EKG. This test involves placing  13 sticky sensor pads on her chest and then hooking them up to wires which just measure how fast her heart beats and how well it conducts electrical energy. It doesn’t hurt at all and putting the stickers/wires on takes way longer than the actual test, which only lasts about 60 seconds. Here’s my girl all suited up:

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After that the doctor reviewed the results, listened to her really well, and answered my questions about surgery. Day one of pre-op stuff in the books! Back at home we continued the feeding battle and it did not go well. Some days are like that, but this one was on track to set a record. We had gotten 7 ounces in her by the time it was time to start her last feeding. We’re supposed to be getting a minimum of 15. She’s supposed to be gaining weight and staying healthy for surgery. I was in despair. So we prayed really hard and got in 3 more ounces which landed us at 10 (my bottom level intake limit) for the day because God is good. 🙏🏻

Then Wednesday came. I woke up not feeling so hot. I’d had a sore throat for like 6 weeks that we couldn’t pin down or get rid of and the doctor at the instacare had prescribed sleep 😂😂😂 Right. But Wednesday morning that sore throat showed up with a vengeance and took me down. Back at the instacare they told me I was running a fever and tested me for strep and mono (second test for that). And I panicked. Because my baby is scheduled for open heart surgery in FIVE days, she cannot get sick, and Mom is sick & contagious. NIGHTMARE!!!!!!

Dad to the rescue. Bless his heart. I called Dan and told him I needed him now and ps cancel all your plans and important work things because we are in EMERGENCY MODE. He did. He came and took over while I vacated the house and fled to my mom’s where for three horribly long and stressful days all I did was eat and sleep and panic over not being there for my daughter.

It.  was. agonizing. 

After a lot of prayer, a priesthood blessing, a lot of forced sleep and all the healthy food I could find... I was able to come home to my girl on Saturday feeling like a human again. 🙏🏻😭🙏🏻  

While I was out, Dan got NO sleep, went to zero days at work, and took Lydie to her pre-op hospital labs/x-ray/meet the surgeon meeting. 

Here’s a picture of our warrior after she had her blood drawn—which is no small task on such a small person with blood as thick as mud. 

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It was rough for all involved. And for Mom who was purposefully uninvolved. 💔💔💔

So here we are. It’s Saturday night. I am home and although I feel good I’m keeping my distance & wearing a face mask. Dan is doing the Lydie stuff and I went grocery shopping. But we are all here, alive, healthy 🤞🏻, and together.

I don’t know, guys. Is this happening? Are we going to make it?!!! Please say yes, because I can’t go through this circus multiple times!