A HUGE announcement!

In case you missed it on Instagram or Facebook this week, we have HUGE news on the infertility front.

Yesterday, I came across a giveaway for a FREE IVF cycle. It was from a clinic that someone in my loss support group had mentioned to me months ago. I knew it was such a long shot, but we entered the contest. Then so many wonderful people supported us by posting videos to nominate us!

And I am still in complete shock as I type this, we won!

I was with my best friend when I got the news and I instantly burst into tears and screamed, “Oh my God!! We won!” We hugged each other so tight while ugly crying. Just a few days before we were hugging while sobbing because our last round of IUI failed, and now things have totally changed.

I quickly FaceTimed Brian, and he was completely speechless as I gave him the news. He was totally shocked, and tears filled his eyes as the news sank in. All he could say was, “Wow.”

Fast forward to this morning…

I was grumpy for a moment when I woke up. I actually thought that I had dreamt about this winning this IVF cycle. As the sleep cleared from my eyes and I came to my senses, I remembered that this is REAL LIFE! And then I cried again. I still cannot believe it. I don’t think I’ll ever get over how amazing this is. We are forever indebted to all of you for supporting us, and CNY for making our dreams a reality.

Infertility after loss has been the absolute cruelest thing I have ever had to endure. As much as I hate to admit this, I was beginning to lose hope. In the blink of an eye, our prayers have been answered and hope has flooded every inch of my body. That light at the end of the tunnel that was quickly vanishing from sight has suddenly flooded everything around me, and all I see is light. Life feels full and wonderful.

The thing I love most is that Aria feels so present in this. I can’t thank her enough, I know she’s been guiding us every step of the way.

I cannot wait to begin this next chapter. It’s time to have a sibling for Aria.

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Infertility: 2, Us: 0

Here’s the thing about doing rounds of fertility treatments back to back, it gives an instant rebound of hope and purpose after the first round fails. However, when the second one also fails it’s rapid fire disappointment.

And that’s where we are right now. I had so much hope for this round. Stronger meds and better numbers all seemed like things were lining up for a positive result but it just wasn’t meant to be.

Yesterday was spent considering our next steps. Our original plan was that our 3rd round of IUI would be completed with stronger meds, and I was comfortable with that. However, as the reality of two failed rounds and the costs associated with them sank in, I’m now very hesitant to move forward with another IUI. Our insurance provider doesn’t cover fertility treatments so we’ve been paying all of our medical bills 100% out of pocket. A third round of IUI with stronger medication is literally 3x the cost of one of our last treatment cycles, and it only nominally improves the success rate. Naturally my biggest fear is that we would throw all that money toward that IUI and still fail, then be that much more in the hole before moving to IVF.

So we changed gears a bit and started discussing IVF as a potential next step. It made me so hopeful. The success rates are so much more positive when compared to IUI, and my doctor has said several times that we are excellent candidates for IVF. But as I studied the cost sheet, I realized once again that none of this would be back and white. It’s never simple.

I told a friend of mine yesterday that I felt like I was being asked to buy a baby. It’s ridiculous how little fertility coverage most Americans have, and how much the costs associated with fertility treatments are. Then you add in the emotional and physical costs and it’s almost too much.

But then you think, “What if it works?”

I used to think people were crazy to spend so much on fertility treatments, but it’s impossible to put a price tag on your children. I would have paid absolutely anything to save Aria.

When I think about the moment Aria’s sibling is born, and hearing those first cries as I hold a living, breathing baby in my arms, fifteen thousand dollars feels like such a small price to pay.

But it isn’t. And that’s the hard part.

But I refuse to accept that this is it for us. I don’t even know how to process that kind of a reality. My mothering spirit has been so conflicted from the moment I said goodbye to Aria and she needs purpose again.

I’m not sure where we are going from here. But we’re not giving up. I’ve still got a lot of fight left in me.

The comeback kids.

People love a comeback story. They love it when the underdog ends up on top, and gets what they’ve been fighting for all along. It’s the stuff movies like Rudy and Rocky are made of. So after Aria was born, people were extremely quick to ask me when we were going to have another baby. I was asked that question several times before we even said goodbye to Aria’s body at the hospital.

But I didn’t want another baby. I wanted this one. I wanted Aria.

However, as my longing for the experience of raising children on earth began to overwhelm me, I came around and decided we would try again. People loved that decision. Their faces often lit up with excitement. They couldn’t wait for us to get our happy ending.

This is where things get really messy. Infertility, loss after loss, and a failed fertility treatment cycle have made for a really crappy comeback story. Most days it feels like we’re even further from redemption now than we were the day Aria died. Society and all of their expectations of what life after loss should look like makes it hard to not feel like a total failure. I’ve watched almost every mom in my infant loss support network go on to have a healthy baby, and yet I’m still waiting. People have distanced themselves from us, some because they no longer wanted to support the weight of our grief. Some because they assume the space will be helpful to us in some way. Some just grew weary of our lack of a happy ending.

“She’s still so sad.”

Indeed I am. My daughter died.

But if you could see our lives the way we do on the good days, you would see so much more.

So what exactly is our comeback story? What makes our story full of redemption?

A husband and wife that have weathered countless storms together, and grown stronger despite them. Two parents whose love for their daughter has refused to be negated by death. A father who still gets up each day and provides for his family despite wanting nothing more than to lay in bed and cry. A mother who speaks openly and publicly about her daughter, despite social stigmas that constantly whisper that she should stay silent.

We go out and explore new places. We learn new things. We build relationships. We laugh. We play. We live.

And at the heart of it all, there’s a sweet baby girl in heaven whose sick body has been fully healed. She’s safe. She’s free.

There’s still a lot of heartache in our story, but to deny the parts of it that have been redeemed is to ignore so much of the goodness our lives hold. We’re still a comeback story, and it’s only the beginning.

Infertility 1, Us 0

It’s official, our first round of fertility treatments has failed.

I tried so hard not to get my hopes up, and remind myself that it can take several tries for it to work, if it’s going to work for you. But I was encouraged by my doctors who looked at all our labs and felt that this protocol would likely lead to a pregnancy for us. Although they did make sure to remind us that it could take more than one round. As our first round progressed, and everything continued to look good, I let hope take root in my heart and grow like a weed. “This could be it!” I thought over and over again.

I instantly began to cry as I listened to the nurse’s message on my phone. “It’s negative. I’m sorry.” All of my hopes and dreams slipping away as quickly as the tears rolled down my cheeks. I thought about the date that I had hoped would become my due date, the day before my next birthday. I thought about the trip we’re taking in the spring, and how I hoped it would become a babymoon. I thought about the empty nursery upstairs that would remain empty even longer. It just wasn’t meant to be. At least not yet.

I despise the rollercoaster that infertility takes you on. The hope and anticipation, then crushing devastation as it all comes crashing down as you hold yet another negative pregnancy test in your hands. Add that to our already difficult journey with bereaved parenthood, and it’s downright miserable.

Of course, there is still hope. We talked to my doctor, who said she would have liked for me to respond a little better to one of my meds, so we’re changing the dosage and hoping that’s the boost I need. If not, there’s other options for the round after that.

Of course, that all sounds promising if that was all there was to worry about, but it feels like flushing money down the drain when a cycle fails. Especially since most American health insurance providers cover 0% of infertility treatments. But I’ll keep my soapbox in the closet, and save that speech for another time.

Here’s to more meds that make me extremely hormonal, shots expertly administered by my husband, and more needle pokes than I can count! Bring it on, round two! We’ll be seeing you soon.

Dear Aria: A letter to our baby girl on her second birthday in heaven.

Sweet Aria,

If I could sneak into heaven today, I would do it bright and early. I’d tip toe into your room and kneel alongside your bed. I would pause for a moment as you slept, and take in the sight of you, my perfect sleeping angel. I’d brush the wisps of hair from your eyes, and whisper, “good morning, birthday girl!”

But today I will whisper from afar, and pray that you can hear me.

“Good Morning, birthday girl.”

Two. Sweet girl, today you are two. In the blink of an eye, two full years have passed since we first held you in our arms. Two years since you took those big beautiful breaths, showing us just how strong and brave you are.

I could spend hours repeating how much I miss you and wish you were here, yet deep down I know that you wouldn’t wish for that. Today is a day to celebrate. Today is about giving thanks for the gift that was and is your brief and perfect life.

So today there will be cake, there will be the Rose family birthday song, there will be birthday candles in remembrance of you. There will be joy, there will be laughter, and most of all, there will be love.

I hope you have the most wonderful second birthday in heaven sweet baby. I hope all of your wishes come true. I hope you have a belly full of birthday cake, and a heart that knows just how much you are loved.

We miss you. We wish you were here.

Happy Birthday, Aria.

Goodbye 2017, Hello 2018.

It’s officially that time of year. We’ve swapped out our Christmas greetings with, “Happy New Year!” Shelves are being stocked with 2018 calendars, and there’s talk of New Years resolutions everywhere you look.

Last year, as we rang in 2017, we were so hopeful that this year would be one of redemption. We had been praying that we would be blessed with a sibling for Aria for a few months before the new year, and it felt like our time was coming. But month after month went by, winter turned to spring, spring turned to summer, and still no baby. Then one doctor’s appointment turned into ten, and test after test showed nothing conclusive. We were confused, they were confused, so my doctor made a shot in the dark, which led to me holding a positive pregnancy test on an early August morning. And then that turned into me in my doctor’s office hearing things like “I’m sorry.” And “this happens all the time.” As I struggled to cope with the reality that we had miscarried.

But we did as we’ve had to do with every single heartbreak in the last two years, we dried our tears, held onto each others hands, and kept going. We found new doctors, better doctors, who ran even more tests. We talked about options, started saving, and came up with a plan. So as we welcome 2018, we are embarking on another adventure. Hopefully one thousand steps closer to growing our family once again.

And as hopeful as we are, I will admit that the spending the last year fighting infertility has been hard. So unbelievably hard. But we’re pushing back as much as we can.

We also have a project of a different kind that we’ll be unveiling this summer, and are so anxiously excited to share it. I wish I could say more about it, so I could fill this paragraph with more detailed anticipatory statements, but it’s going to be good. So very good. And I can’t wait for you to see it.

Of course, the real big day for us isn’t actually New Years Day. It’s January 2nd. Aria’s birthday. This coming year, she would have been turning two. I’m even less ready for it this year than I was last year. It doesn’t get any easier, or simpler, or less agonizing. I can’t stop thinking about all that we’re missing now. Her hair would be so long, because I know I would have refused to cut a single centimeter of those gorgeous dark locks. She’d be communicating, and bossing us around, and likely giving validity to the term, “the terrible twos.” But we’d love it all, and sweet Aria would be loving us back tenfold. She’d be blossoming, and growing, and thriving more and more each day.

God, I miss her.

All in all, 2017 has been quite a challenge. But there’s been such an undeniable bright spot in it, Lana. Our sweet dog who also turns two in January. She came to us at the start of this year and has made every hardship much more bearable. 2017 also gave Brian a very unexpected work trip to Disneyland, which I was able to tag along for, so with the combination of those things I suppose I can’t say it was the worst year.

But 2018 will be a better year. At least that’s what I’m hoping.

December 23, 2015

Today’s post is a retelling of the events of this day, exactly two years ago.

We woke up the day before Christmas Eve with a game plan. Brian would come home from work early so he could accompany me to my appointment with the fetal specialist to check on Aria’s development and make sure her tumor wasn’t getting any bigger. It had already increased in size once, but everyone was fairly confident that it would stop growing and become less of an issue as Aria continued to grow in the womb. There were still concerns, but mostly there was hope.

We were planning on leaving Florida and flying to Maryland early the next morning (Christmas Eve), to spend the holiday with our families and return just before the New Year. Since Aria’s condition is researched and treated most often at the Children’s Hospital of Philadelphia (CHOP), and because we would already be on the east coast visiting family for Christmas, our team agreed it would be a good idea to set up a consult with them during our trip. So we made an appointment at CHOP on Dec. 28, 2015, perfectly squeezed in before our flight back to Florida a few days later. It would be helpful to have them be familiar with us, and Aria’s specific case if she got worse and needed more intensive care at birth. This was still mostly a precaution, as we were continuously assured that based on statistics of other babies with her condition, Aria would be just fine.

With our schedule jam packed with doctors appointment’s with Fetal specialists and my OB/GYN over the last few weeks, we had been too frazzled to pack or shop for Christmas gifts. So I spent the first half of the day scrambling to finish off my Christmas list, not an easy task with a large pregnant belly in the way. When Brian got home, and it was time to head to my appointment I still had a few things left to buy. Luckily, the hospital was across the street from the mall so planned to make a pit stop there right after.

We were the last appointment of the day before the office shut down for Christmas Eve & Christmas. You could feel the excitement in the air as the staff started to close up the office. They just had to do our ultrasound, and we could all get on with our holiday festivities.

The ultrasound started off very routine, she let us listen to Aria’s heartbeat which was nice and strong. She gave us a good side profile of her face, and she was adorable as ever. Then she scanned her belly, and I saw her write a word that I had recognized from an online support group for babies with Aria’s diagnosis, “ascites.” My heart sank, suddenly this was looking like the worst case scenario we never imagined would happen. She remained calm, and said the doctor would be in shortly to explain our images.

As she walked out of the room and the door shut behind her, I looked at Brian and said, “She has hydrops.” Always the optimist he responded, “You don’t know that, we don’t know what we are looking at. Just wait for the doctor.” Then I told him I saw her write ascites, and what that word meant – she had fluid in her belly.

Before that conversation could continue, Dr. W walked in. “So tell me what you already know about the baby’s condition.” This seemed like an odd question, but I replied with everything I had been told. He nodded, then grimaced, then tried to hide the concern on his face. I could tell he was fumbling with his words in his head. He confirmed my suspicions, Aria was showing signs of hydrops.
“Do you still have that appointment in Philadelphia?”
“Yes.”
“Good. When is it?”
“The 28th.”
He grimaced again.
“We might need you to get there sooner. We might need you to go now.”
He asked the ultrasound tech to call the Children’s Hospital of Philadelphia (CHOP), so he could speak with a fetal specialist there and get their opinion. In the meantime, he brought us into a consultation room next to the nurses station. As we were walking into the room, a nurse informed Dr. W that CHOP is an hour ahead of our time zone and their offices had already closed. She didn’t know if we would get ahold of anyone.

This is when chaos erupted around us. Every nurse was told to grab a phone and start dialing until they found someone. This was the moment I fully understood the seriousness of the situation. We didn’t have time. It couldn’t wait. We listened to the frantic clicking of the buttons on the phones in the lobby, and after fifteen minutes of this it felt like we were fighting a losing battle. Then a nurse shouted, “Dr. W, I got a cell phone number for Dr. K in Philadelphia!”

Relief washed over me. Hope returned. Now we were getting somewhere. Dr. W called Dr. K and I could hear them coming up with a plan. Brian assured me everything would be fine, we now had a very experienced doctor in Philadelphia on our side.

Dr. W finally came into the consultation room to inform us of their plan. We needed to get an injection of steroids, because in previous studies it had been shown to reverse hydrops and prevent these tumors from becoming any larger. He explained that the injections are given in two parts, and they need to be done 24 hours apart. So once we got the first one, we had to be in Philadelphia within 24 hours for the second injection. It was currently 6 PM. Our flight was scheduled to arrive in Baltimore the next day at 1pm, so we had plenty of time to drive to Philadelphia in time for the next injection. Everything was falling into place.

After receiving the first dose, we decided to grab dinner at Olive Garden. We ordered way too much food because both of us were feeling incredibly stressed and needed to eat our feelings. As we ate, I suddenly felt like I couldn’t inhale as deeply or lean all the way forward because something was in the way. Then it dawned on me, Aria’s feet had reached my ribs. I marveled at this little developmental milestone, and took it as a good sign that despite her challenges she was still growing like a weed. Our little fighter was going strong.

By the time we completed our Christmas shopping at the mall and made the hour drive back to our house, it was nearly 11 PM. We had to be up at 4 AM for our flight the next day, and neither of us had packed our suitcases. We were both ready to crawl into bed and cry ourselves to sleep, but we had to get this done. So we started to pack, and this was when I lost it.

I grabbed a few maternity shirts, and started trying to decide how many I should bring. Suddenly I realized I didn’t know how long I would be in Philadelphia. I didn’t even know if I would be coming back before Aria was born. Should I pack regular clothes too, so I would have things to wear while Aria is in the NICU? I started grabbing armfuls of clothes from our closet and tossing them into my suitcase, and once it was totally full every ounce of heartache and fear that I had been suppressing over the last five weeks bubbled over and poured out me. I struggled to see through the hot tears pouring down my face as sobs escaped my lips. This whole situation was terrifying. How could this be happening?

Brian held it together as he consoled me, then helped me finish packing. The pack and play we got for Aria had arrived in the mail that afternoon, and we quickly set it up next to our bed so she would have a place to sleep that was close to us when she finally came home. Then we finally poured ourselves into bed. As I drifted off, I thought to myself, “This day has surely been the hardest day of my entire life.”

I didn’t know then that I would be repeating that thought many times over the next few days.