All of It.

Nearly 8 years ago, I wrote in real-time the experiences I had with the death of my youngest son, Gabriel. I uploaded our story in pieces, linking one to the next. I put them all together here so readers don't have to go searching bit by bit.

This story mirrors that of our firstborn, his big brother Samuel, who would be turning 14 this year had he come home. I did not write as in depth as I did with Gabriel and he has his own story I wrote from memory that I'll link here. 

For those who read this, I can't tell you how much I appreciate you taking the time to do so. Even nearly 8 and 14 years later, I can still hear the sounds Sam made. I can still see Gabriel's raised eyebrows. I can still smell their newborn smells and feel the weight of each of them in my arms.

They were a very real part of my life, and my prayer is that in my writing, they are real for you, too. 

When you see a "................." it's a former break in the story. The verb tenses are sometimes a little weird and the story may not flow as well as if I'd just written it in one piece, but I choose not to alter what I've written before. I honor the 8 year ago me who bled words from the open wound in her heart. I'm thankful for her.

Here we go-->>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

I'm sitting here and I'm just staring.

I don't even know where to start. Where? Gabriel's birth? My feelings now? Everything in between?

3 weeks ago I was still in the middle of processing his diagnosis. I was still planning his birth. I was still working on coordinating our calendar to see genetic counselors and neonatologists.

I had to cancel those appointments the week after he was born. I guess we don't really need to see all of you anymore.

We still will see a genetic counselor soon. We have many questions that need answered. Tests that need run. Fears still to face. This isn't over. Much of this has really only just begun. All the while processing a grief that runs deeper than I could have ever imagined.

I hate to write this as a to be continued kind of thing, but there is SO much to tell. So many wonderful things about Gabriel's birth. And so many awful, horrible things. I don't even know if I'll be able to put words to some of what we went through. I want to though. I'm going to try. This is how I process.

I'll start with April 13th. We had two regular appointments scheduled with my OB and Maternal Fetal Medicine in the afternoon. Edward had an eye doctor appointment that morning, so I took him. I was trying to get all of our checkups taken care of before Gabriel was born just so I wouldn't need to worry about them right after.

For some reason, I decided to make an extra appointment at Stork 4D Imaging after Edward's visit. I knew we wouldn't get normal 3D images of Gabriel, but I wanted to try. I was hoping to get something because we were heading to my parents' the next day for a party and I wanted to share new pictures. I love the owner, Becky. She had told us earlier on in our pregnancy that we could come in any time we wanted to make as many happy memories with Gabriel as we could. I'm so glad we went in for that appointment. We hadn't been there in almost 2 months. Little did we know that would be the second to last time we would see him moving on the screen. His little hand up in front of his face, mouth opening and closing. We smiled and chatted through the whole session as the kids played.

That afternoon we went to see my OB and MFM. We saw Gabriel once again, but this time it was focused on diagnostics. We saw his little kidneys, still filled with cysts. Looked at his brain, his heart, his stomach. We were just so happy to have another chance to hear his heartbeat. They measured my belly, took my weight, blood pressure, and urine.

Everything was normal. I was perfectly healthy.

The next morning we got up and got ready to head to my parents' for a day trip, just over 2 hours away. We hadn't left our area since Gabriel's diagnosis 3 months before but everything was looking good and we thought we would be just fine for the day. I was so excited when we first woke up, because I felt some real baby kicks. 30 weeks, 4 days pregnant and I hadn't felt real kicks until then. I grabbed Jamey's hand and put it on my belly. Feel that? I asked. He was still half asleep but opened his eyes and smiled. Yes I do. Gabriel gave his Daddy his first little kick the day before he was born.

Heartburn was bad that morning, and I couldn't drink enough water on the ride over. I felt like I had a lump of food sitting at the base of my throat. I always have heartburn in my 3rd trimester and always end up needing Zantac. I hadn't started it yet in this pregnancy, so while we were at my parents' Jamey went out and bought me some, along with Maalox. I decided that I'd start taking it that night before bed.

The party was sweet. I met my nephew Abel for the first time, and I spent the entire day snuggling that sweet chubby boy. He took a good long nap on my belly, arms draped over the sides, hugging his baby cousin. People came and went, congratulating my sister and her husband on Abel's birth and giving me hugs and kisses saying how sorry they were that we were facing this yet again. I was so happy for my sister and all the cute clothes and baby gifts she opened that day, I really was. I loved kissing and cuddling baby Abel.

But as she opened clothes and toys, I opened Willow Figurines and crosses. I opened Scripture verses and sympathy cards. I loved every single thing I received, celebrating the life of my own sweet boy. I just wished I could have opened clothes too.

The entire day people asked me if they could grab me something to eat or drink, but I kept having to say no. The heartburn was just too awful and I needed to wait it out. The party ended, people started going home, and Jamey and I made a last minute decision to stay the night and leave early in the morning. We'd be fine staying a few hours more.

Jamey and I stayed up late talking with my Dad about all things politics. It always gets a little heated, but it's how we are. It's crazy, but I love it. I was so uncomfortable with this horrible heartburn that I just stayed up talking and talking, until we finally needed to say goodnight.

I had a moment with my Dad before he went to bed where he told me just how sad, mad, and sorry he was that this was happening to us again. I don't see him cry often, but when he did that night, I hugged him and told him I felt all those things too. It's so awful and so healing to see someone cry for you like that. Especially when it's your Dad.

Jamey and I headed downstairs to go to sleep. I told Jamey I was hurting too much from the pain to sleep laying down so I needed a recliner.

It wasn't until I sat still that I realized just how much I hurt. I don't know how I'd held off that long, but as I lay in the recliner, I knew I wouldn't be able to fall asleep. I felt like someone was stabbing a knife into the base of my sternum that went through my back and radiated out across my shoulder blades.

Jamey, I need to call my OB and just ask if this is a nasty case of heartburn.

Poor guy. He was so tired. Fine. But I'm sure you're just having bad back pain from sitting in a hard chair all day he said. I so wish he'd been right.

I called my OB and told him my symptoms. You're out of town?! That does NOT sound like heartburn. You may be having a heart issue. You need to head to the ER right away.

I relayed the message to Jamey and he groaned. Please. I'm really in THAT much pain. I wish I were kidding. 

We went upstairs and let my Mom know where we were going and why. Mira was asleep next to her. We should be in and out, they just want to check and we don't want to take any chances, I'd said. She asked us to keep her updated throughout the night.

We got to the ER around midnight. Someone had just passed away in a room next to ours, the family outside a crying mess. Someone on the opposite side was vomiting so loudly it could be heard a mile away. Please, God, don't let us catch the stomach flu here. We've already had it twice this spring. My biggest concern. The stomach flu. Ha.

The ER ran a series of tests. My blood pressure was high but they said with the pain I was feeling, that could just be a normal pain response for me. They ran an EKG. Abdominal CT. They ruled out a heart attack and blood clot in my lungs. They mentioned something about my gal bladder. I hoped that maybe it was just that and they'd give me something to calm it down, worst case need surgery to have it removed. The last thing on my mind was this was pregnancy-related.

Have you ever had any pregnancy complications?

Me, personally? No. I've always been healthy. With the exception that two of my babies have been very sick, I have had normal pregnancies. They gave me Tylenol for the chest pain, took labs and a urine sample. Routine stuff, but they were sure we would be sent home soon with a diagnosis of esophagitis.

Cool. Bad heart burn. The ER bill is going to suck, but I'm glad it's nothing more. At that point it was around 5am. Jamey had been sitting in a wooden chair for nearly 5 hours, and I had been in so much pain I'd gotten maybe 30minutes of sleep. The Tylenol kicked in around 4am. My blood pressure lowered and the doctors told me that was because I wasn't feeling such pain anymore. Awesome. Please send me home so we can get some sleep.

I texted my Mom. "All is good, we are just waiting on these last labs and we'll head home."

"Okay, you guys can sleep when you get here," she responded. I so looked forward to sleeping in a normal bed.

The ER doc opened our door. Hey, some of your labs are looking abnormal and there is protein in your urine. We are consulting with the OB emergency department across town right now to see if they'd like to see you over there. She left to answer the phone.

What does that mean? Abnormal labs? I'm pregnant. How abnormal could they be? What's odd about them?

The doc came back in. Your liver enzymes are high and with the protein and high blood pressure, they've recommended that you head over. We need to transport you via ambulance. 

Ummm....no. I am much too cheap for that. It's a 5 minute car ride to that hospital, my husband can take me thank you very much. I'm not paying $1000 for you to take me to another place and hold me hostage just because you want to cover yourselves. I have an OB team back home, I'm not even from here. You don't even know what's going on with us. We'll head home right now and follow up with our team. I'm feeling much better, thank you.

No I'm sorry, she said. We cannot let you leave here without an ambulance. If you have a seizure on the way over, your husband will not be able to help you. You're not stable enough to leave on your own. They should be here very soon to transport you, we already made the call.

My first (and hopefully last) ambulance ride. I smiled and chatted the whole way. I had no idea why they said I could have a seizure, but I figured it really was just them being overly cautious.

They weren't.

…………………………………………….

When we arrived at the OB Emergency, I was wheeled into room 75. The place looked pretty empty, and I was glad for it. Just a few years before I had visited this hospital to deliver a newborn crochet set to a new momma I had gone to high school with. It felt odd to be back as a patient.

I really thought they'd be running some tests and sending me home.

I was hooked up to a blood pressure monitor, labs were drawn, urine sample taken (again). That blood pressure cuff was so uncomfortable and inflated every 15 minutes. Every single time my blood pressure registered high. Every time the nurse had to come in and shut off the annoying beep.

Hi Kaila, we'd like to introduce you to Dr. Townsend. Can you tell her what's going on?

I don't even remember exactly what I told her, other than I CANNOT get stuck here. We just cannot deliver here. I have a whole team up at Rush Copley. They know what I need, we've been planning for months. 

Rush Copley? I live up there. Who do you see? 

I explained everything to her and found out that she had worked with my OB in the past. She even had his phone number. I'll call him and we will discuss what we should do.

Honestly, at this point I'm fuzzy about the details and Jamey had fallen asleep on the couch in the room. We were right at shift change, so the doctor who knew my OB was leaving and a new one entered. People were in and out of our room, asking so many questions and I just kept telling them, I NEED to get back to my doctors in Aurora. Please just make sure I get back there.

My labs came back and my new doctor came in to talk to me. I wish I'd woken Jamey up. I don't know why I didn't. His snoring was loud and I knew he was exhausted. Just tell me what's going on, please discharge me. I promise we will head straight to Rush when we leave.

Listen. Your labs are not where they should be. Your liver enzymes are triple their normal value and your platelets and red blood cell count are dropping. Your blood pressure is high, and there is protein in your urine. With all of this put together, we are sure you have what's called HELLP syndrome. The only way to "cure" this is delivery, and we recommend sooner than later.

My jaw dropped and I started to tear up. Sooner...as in maybe next week? 

No, we don't have that kind of time. Sooner, as in the next 30 minutes. And we need to get you started on magnesium to prevent you from having a seizure.

That was when I woke up Jamey. I started to sob. I don't have any of his things. I don't have his memento-making box, the blanket I made, the baby book to take footprints...I don't have a photographer on call here. What are we going to do??

We googled HELLP syndrome. A little blue bar showed up at the top of the screen. Very rare. Fewer than 20,000 cases/year.

You have got to be freaking kidding me.

Once again, this is blurred for me. I remember calling my Mom and saying, "You need to get up here. They're going to take him." "What?!? We'll be right there," she'd responded.

We thought we were there for heartburn.

I asked them to take a quick check of my gal bladder to make EXTRA sure they weren't wrong about this diagnosis. How do you know it's this for sure, especially since it's so rare?

It's not so rare that we've never seen it before, my doctor said, In fact, my wife had this syndrome with our last baby.

But...my son is going to die when you take him. We hadn't even had a meeting yet with our neonatologist. We still had time.

Doctors and nurses scrambled to prepare for Gabriel's delivery. Jamey told me later they called someone on their way home from the night shift to turn around and come back. Their neonatologist came in and started asking questions. At that point they had started the magnesium and I was beginning to feel foggy. Question after question.

I was afraid I'd answer incorrectly or forget something. Maybe he could be saved by some crazy miracle and he would now die because I'd forgotten an important piece of information. About a week after his birth, I had called my maternal fetal med physician, absolutely sure I had just let him die. That I didn't care enough to try. That I'd missed something. A better mother would have made sure he lived. Even when you know there's nothing that could have been done, the guilt is crushing.

My Mom, Dad, and baby sister arrived. They brought a sweet blanket with angel wings and Gabriel's name that had been gifted to me the night before by my cousin. I had something for him. I was so happy for that. They started asking questions, the same I'd had.

The team answered everyone's questions and said, we called a photographer for an organization called Now I Lay Me Down to Sleep. Are you familiar with them? We are just waiting on her right now and we will take you back. 

Oh my goodness, yes. We had an amazing photographer when Sam was born who volunteers with NILMDTS, and I had already contacted another volunteer photographer in our area too. I was beyond grateful this team of doctors were making sure our needs were met. We want to make sure we take care of you not only physically, but emotionally and spiritually during this time, my doctor had said.

We need more doctors like him. He even asked me who I would like to join me in the OR. Can my husband AND mom come? 

Of course. We'll bring in extra scrubs for them. 

The photographer is here. We need to take you back to be prepped.

Are you ready? 

Nope. I'll never be ready.

They wheeled me out. I was in a bit of shock. Unfortunately at this point all I could focus on was the catheter they'd put in after they started the magnesium. Is this really what I'm going to remember from this? The catheter? This thing is awful. I'm so ready for the spinal so I don't feel it anymore. Just. Breathe. 

They put me on the table and injected the spinal. Sweet. Relief. They laid me back on the table, inserted the oxygen tube into my nostrils, and started prepping. All I could see was the infant warmer across the room, and I could hear the beeping of machines. Oh my goodness. Gabriel's going to be in that soon. I'm not ready. Let me go. This is not what I want.

Would you like to listen to some soft music? 

Music? Who wants to listen to music? I don't care. No, I thought.

Yes, I whispered.

I heard the radio come on with some quiet music. My doctor started telling them to change the station, a couple changes and he said, Yes, this one. Stay here. He chose KLOVE.

Tears started to roll off my cheeks and fear started to set in. Someone grabbed my hand. We're right here with you honey.

Feel that pinch? Yes, yes I do. Okay, another 5 minutes. 

They put the drape up and continued working. I felt another pinch but no one said anything. Hey, I felt that, I said.

Oh, you did? Okay, tilt the table. Another couple minutes. 

Jamey, my mom, and the photographer came into the room. The video camera starts, and now my memories are backed up with tape. Jamey put his forehead to mine. I have no idea what we said to each other, but you can tell in the video we are whispering. I wish I remembered.

Jamey had his phone, my mom had hers, the photographer had her camera. Everyone seemed ready but me.

Then I heard it.

Let's get started.

……………………………………………………………………….

Beep....beep....beep.....

I can hear all the machines chiming away as doctors begin my c-section. This isn't my first section so I know it will only be a matter of minutes before Gabriel will be out. I stare at the little baby warmer as I hear the doctors talking.

I can't help but think that just the day before I had said, I'm just really tired. I want this to be over. 

No I didn't. I didn't want this. I wanted this to be a beginning...not over. I wanted to bring him home...not have an emergency c-section that would save my life. This is not what I meant.

"Baby's out," I hear one of the doctors.

My biggest prayer when I was pregnant with Sam was just that we would hear him cry. God, just let me hear his little baby cry. That's not too much to ask, is it? Doctors had told me multiple times it would be unlikely given how immature his lungs would be. But the minute Sam was in the baby warmer and suctioned out, I heard the sweetest little kitten mew-cry. My prayer was answered.

This pregnancy, I pretty much expected that we would at least get to hear Gabriel cry when he was born. This time, I had prayed that we would get more time with him. It's an awful thing to pray for the "at least"s. Of course I prayed for healing, but I had accepted that was not likely going to happen.

When Gabriel is born, there is no sound. No kitten mews. It's silent.

Still I can hear those beeping machines.

"Ohhh. He's just so little," my mom whisper-sighs.

How little? I think. Does he look strange? Is he too tiny to hold? Will he look like my baby? 

...will I love him?

It's an odd thing to not be sure if you'll be okay looking at your baby. We knew what to expect from Sam's birth that his chest would not be full and his abdomen would be swollen, but we were not prepared for a preemie.

I see two little feet sticking straight up from that table. They're all red, covered in blood. I feel like I may have closed my eyes at this point because I felt like it was just a glance.

And then he's next to me.

"Baby has a heartbeat but was unable to take a breath," we hear.

"Oh, okay," I answer.

My baby isn't breathing. And all I am able to say is okay. I have to say okay. I cannot ask them to save him. I have to watch this end. I have to let him leave me.

I have to say goodbye. 

They unstrap my left arm so I can touch him. Jamey holds him up on my chest. He's so very warm and sticky. Soft. Perfect. Tiny, yes, but perfect. Our perfect boy. Jamey, we have 3 boys. I can picture them all together, and if they're anything like middle brother...life is crazy. I imagine an entire life lived with this new son of ours.

I want to cry, but I can't. All I feel is joy that we have him in our arms. He's so cute! Look at him! Look at this nose. Look at these toes. His hair! How much hair he has! It's dark...mommy's hair. I kiss him over and over. I whisper I love you more times than I can count.

At times, it's hard to see him from my angle and I can only see the top of his face.

Did his eyebrows just raise up??

Yes! Jamey and my Mom tell me that he's making faces. Later in the video, I see each and every face he makes from their point of view. All I see are those tiny dark eyebrows. Gosh, they go straight up, just like Edward's. Jamey tickles his foot.

He smiles. 

Did you see that?? We may not have heard him cry, but we got a smile.

He's wrapped in a little blue polka-dot blanket. I open it several times just to get a good look at him. I want to memorize every detail. The teeniest toes. The itty bitty fingers that barely wrap around one of my own. He's a little hard for Jamey to maneuver, and I keep asking him to hold him back a bit so I can get a better view.

Jamey tells me later that he wanted me to have as much skin to skin time in case I needed the hysterectomy and missed out on the rest of his life. I had completely forgotten that risk. Such a sweet man, thinking of those precious moments I would get with Gabriel.

I ask the doctor at one point about the placenta. "Placenta looks good, no accreta," he replied.

"Finally. SOMETHING," Jamey says. I agree. It's about time we didn't hit a 'worst case scenario' option. We both breathe a sigh of relief.

My chest gets tight. So much pain. I feel sick to my stomach. They bring over another blanket for Gabriel and lay it on my chest. I can't move. Ugh this hurts. The anesthesiologist pushes morphine. My mom tells me later my blood pressure is so high at that point that she is internally freaking out for HER baby. I'm very grateful it does not show on her face. All I remember is the calmness of her voice telling the doctor, "Umm...she says it hurts." We are two mommas keeping their cool while on the inside crying out, SAVE MY BABY.

The morphine kicks in and I start to feel a little better. Thank goodness, our time is short. I do not want to only remember this physical pain.

I touch Gabriel's nose. I kiss his forehead more. I remember with Sam I had forgotten to tell him I loved him, so I make sure I repeat it over and over. You need to know how much we wanted you. How loved you are. You must know. Please know that sweet baby. 

"Mira and Edward MUST meet him. They need to see their baby brother," I tell Jamey.

He agrees, but reminds me that Edward hasn't been feeling well and may not be allowed into the unit.

"Oh don't you worry about that. We will make it happen," the doctor chimes in as they're finishing closing up my incision. Thank you. Thank you. Thank you. This will be their only chance to meet him.

The drape comes down and I'm flipped to a new bed. I can still move my toes. Jamey holds Gabriel while they get me situated. It feels like forever. Please hurry, I need him back.

Jamey puts him back in my arms before I am wheeled out of the OR. It is so quiet. Everyone is somber. He's still with us, and we are taking him back to my room so he can die.

I glance up and see giant snowflakes falling outside. Goodness, it's April 15th.

Gabriel's birthday.

………………………………………………………………….

We are back in room 75. My Dad and sister are sitting on the couch...it seems almost like they're afraid to get up and come see, but I know they're giving me some space. There's a lot of shuffling and adjusting wires.

I just sit and stare in awe of this tiny boy in my arms.

I keep asking to have his heart checked.

He's still here, honey. Each time.

I am joyful that he is here with us still, but I bring him close to me, cheek to cheek, and I whisper to him: It's okay to go sweet baby. I love you.

My heart aches for more time with him.

But it aches more that he's alive and not breathing.

At one point, I ask if anyone would like to hold him, and he goes around the room, being loved on by everyone there. I remember taking a photo of Jamey kissing him. I'm only able to capture a shot of the top of his head, but the photographer has a better angle.

 

 

He is placed back in my arms within minutes and I continue to stare, trying to take a mental snapshot, knowing it will eventually fade. The photographer is snapping away, and all you can hear is the click of her camera and the beep of the blood pressure cuff each time it measures high. I have one distinct memory of a photo I ask for. Could you please get these tiny little feet? I want a picture right now please. She reassures me that she will capture the detail images later, but takes a picture anyway.

It's one of my favorites.

Those precious, tiny toes. All the wrinkles. Perfect. I can still feel his little foot in my hands when I look at this picture. I can see the photographer to my right; I can hear my voice asking for THIS photo. I don't know why this particular image is so powerful for me, but it is.

I feel this sudden urge to be skin to skin. Unwrap him please. Put him on my chest. That's where he should be.

He looks so peaceful. So content. All new babies look that way when they're snuggled close to Momma. He's still so warm. I can smell his new baby smell. I close my eyes and savor this moment. I want to stay here forever. Just like this. I want time to stop. right. now. Although it's not the strongest, this is my very favorite memory. I pretend for just this moment that he is here to stay.

 

Eventually it's time to check him again.

 

2 nurses place their tiny stethoscopes on his chest and listen.

 

And listen.

 

And listen.

 

It's too long. One closes her eyes and looks at the clock. Time of death...

 

One hour and 53 minutes he stayed.

 

I hold him for just a little while longer before handing his body over to be cleaned, dressed, and more photographs taken. He is weighed and measured. One pound. Fourteen ounces. Twelve inches long. Our tiny fighter.

 

His life here on earth is finished. And our grief begins.

 

❤

……………………………………………………………………

It's been almost 3 months since this moment. It feels like an eternity. And yet, when I look at that photo of his little foot in my hand, I am taken right back as if it were yesterday. I loved those teeny feet. I loved that they looked just like mine and Mira's. 

 

I loved them so much, I made them permanent today.

 

 

I cradled him right in that spot. I held him, kissed him, whispered to him, and loved him all the way to Heaven right there. 

 

It's the perfect place for those tiny perfect feet.

 

 

Update as of June 2019:

 

 

Big brother's feet are now there as well. So when I hold my middles...I feel like all 4 are in my arms. ❤

 

…………………………………………………………

 

Update as of Summer 2019

don't even know how to start this. I wrote an entire blog post just moments ago and hit save instead of publish, because while I had intended to write about test results, I wrote about upcoming milestones and my momma heart. Maybe I will post that one in the next couple of days, but I realize more and more that I simply have not been wanting to write about "the end."

 

The answers we've been waiting for.

 

The answers we weren't sure we'd ever get.

 

If you've read my previous posts, we have had multiple genetic tests run on both Sam and Gabriel. None of them had come back with answers after Sam died and so we were told to try again. We would only ever really know if we were genetic carriers for a disease if we had another sick baby. 

 

We've had 4 pregnancies. And we've never truly gotten to experience the joy and excitement that comes with that 20 week ultrasound. "Boy" or "girl" has never been the most anticipatory part for us. It's been "living" or "dying." 

 

I don't want to write about this. I'm tired of my own story.

 

At the same time, I desperately want to share.

 

I have so many complicated emotions surrounding everything about this year, but one that has been surprising, unexpected, and just downright awful has been shame.

 

Guilt and shame are trying to squash my words. There is no reason I should be feeling those emotions.

 

I just do.

 

We had an amniocentesis when Gabriel's ultrasound showed enlarged, cystic kidneys back in January. Our doctor was certain she had seen a case like ours before and had 2 gene tests she wanted to run.

 

One came back negative. The other, positive for polycystic kidney disease (PKD).

 

Or so we thought.

 

I never wrote about this, but for much of this Spring, we were living with the idea that Jamey was a sole carrier for what is called Autosomal Dominant PKD or (ADPKD). It's *fairly* common.

 

But it meant kidney disease in the next decade or so. It meant our kids may also suffer from it.

 

I pictured over and over nursing my entire sick family through their deaths. Or through kidney failure and transplants. It sounds dramatic, it sounds unlikely.

 

But listen. Two of my kids are dead. That was unlikely too.

 

To say the Spring was a roller coaster is an understatement. I felt like we were in a tiny boat in the middle of the ocean during a hurricane. Every single time we got a chance to breathe, another wave would crash down and we would just hold on for dear life trying to ride out the storm.

 

Just a month after Gabriel's birth, we finally met with a genetic counselor. We were supposed to meet her sooner than that, but Gabriel was born the week of our first scheduled appointment. We drove into downtown Chicago and met in a tiny office at Rush University Medical Center.

 

We were expecting to talk about polycystic kidney disease and the next steps we should take in testing Jamey and the kids. We thought she would recommend kidney ultrasounds and blood tests.

 

Instead...

 

"I don't think Jamey has PKD. Yes, the results came back with changes in his gene, but those changes are labeled "uncertain significance." I do not believe that this gene is to blame for your boys' birth defects. I have another test that I would like to run on a panel of 100 other genes. It takes 6-8 weeks. I believe you are both carriers for an autosomal recessive ciliopathy."

 

I know that last bit is pretty technical, and I'll try to make it easier to understand. It was WAY better news than Jamey being a carrier for ADPKD. Instead of Jamey being a carrier for a dominant disease that he would likely suffer from later in life, this would mean that Jamey and I both are carriers for a disease that ONLY affected Sam and Gabriel. It means that our 5 and 2 year old may potentially also be carriers for this disease, but not affected. And the likelihood of them marrying another carrier one day and having sick babies too is less than 1%.

 

I called our counselor this last Friday, curious if she'd gotten the test results back. 

 

"Yes, I have. We have an answer. I'm sorry though, I just got the results back and have not had time to prepare for your questions. Would it be at all possible for us to talk on Tuesday? I'm really very sorry to make you wait, but I want to be thorough."

 

Of course, I understood. But it was a very. long. weekend.

 

Tuesday came, and Jamey was home so we could do the call on speaker phone. She explained the disease, the gene affected, the way the gene copies were mutated, and what this means for our family. I'm not ready to share the name of the disease, mostly because I'd rather not have people Google and share with me their thoughts on it. 

 

But we do have a diagnosis. So...what does that mean for us?

 

It means that for the time being, our family is done. We have a 1 in 4 risk of this happening with all future pregnancies (and we unknowingly ran that risk every single time we got pregnant). Mira and Edward so happened to hit the healthy 3 in 4 odds. 

 

1 in 4 might seem like a small number, but we've hit it twice.

 

Jamey recently shared his fears with me.

 

"Kaila, I'm afraid if this happened again...you wouldn't recover."

 

As much as that hurt to hear, I appreciated his honesty. And I think he's right.

 

For now, I'm dreaming about the future of our family. I recently had a conversation with friends about plans that may or may not ever happen. "Just let me dream," we'd said. Even if we never have any more children...

 

just let me dream.

 

Yes, there are so many other ways to become parents again.

 

I'm not ready to talk about it right now.

 

Let us grieve the loss of our ability to have more children naturally. Please, don't at least us. Just let us feel this sadness. This added loss to the loss of our second child.

 

And even with all this new information, we still have more testing to cross all the t's and dot all the i's. We have our answer for Sam and Gabriel, but next Jamey and I will be tested individually to find which one of us carries which gene mutation. 

 

This will never truly be "over" for us. There are parts we will be able to get closure from, yes, but these results impact the future of our family forever. While we are happy to have gotten this answer, we are still very grieved that this is our reality. All we ask is that you be here for us in this. Lean in closer. Give extra hugs. Send extra love. And pray. 

 

That's all we need. <3