Holding Our Angel

Loving After Loss


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It’s 6 o’clock somewhere…

Well, it is 6 pm and no word from the geneticist today.

I’m slightly annoyed, but mostly worried. This is actually unlike her to not respond to us–normally she is great about getting back to us right away.

She was supposed to call this morning, and when I hadn’t heard by 2:30 I emailed her. Actually, I emailed at 2:15 even though I was trying to wait until 2:30 (the patience thing is still a work in process). No response or call. I’m going to email again tomorrow around noon and see what’s going on.

This has me worried our results aren’t good, and they found anomalies with our genes, but I’m trying really hard to not think like that. I need to hold onto the hope–that this delay in her getting back to us probably has nothing to do with us and our results are good. That we’ll be able to conceive naturally without a high chance of this happening again.

Just hurry up and wait. Motto of the last 6 months.


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Getting Ahead of Myself

I need to get this out, and you wonderful readers are such good listeners (and thank you for that!). Bear with me as this probably won’t make much sense.

Tuesday is our (hopefully final) appointment with the genetic counselor. And I cannot lie, I’m scared and nervous, but also so excited and hopeful. I’m starting to dream of all of the possibilities. Of hearing, for the first time in MONTHS, some good news from a doctor. Of being able to start TTC and having a second child.

I’m day dreaming about the future kiddos we’ll have, and that Theo is handpicking them out in Heaven right now. Of what we would name them.

I’m thinking about how we’ll decorate the nursery again, and imaging us 10 years in the future…. with 1-2 kids in elementary school and being a stay-at-home mom (and if you know me IRL, you know how much a shock that last one is!).

And I so, so want to keep day dreaming like this. I like this hopefulness. But after every happy thought, I feel like I’m jinxing myself. That by being hopeful for the future, I’m counting my chickens before they hatch (and holy crap, that phrase has a whole new meaning to me) and that I shouldn’t talk or even think like any of this is a guarantee. Because it’s not.

And when I remind myself that none of this is guaranteed–that we could lose another baby–I feel even worse. Because what if I’m jinxing myself again, and it’s all because I stopped being hopeful and thought of the worst happening again?

And then I wonder if I’m up for this again. It would be so much easier to say that we don’t want the heartache and so we won’t open ourselves up to it. But by giving up on that possibility of heartache, we’re also giving up on the possibility of so much joy and love. And that is incredibly difficult to give up on.

And yet, I know no matter how we conceive, no matter how happy we are to be pregnant again, I know we’ll both be scared shitless the entire pregnancy. Because I, and so, so, so many other parents, have had normal and healthy pregnancies (by today’s standard, at least) only for it to end tragically. And then my brain kicks into overdrive and starts to think about all of the ways the pregnancy could end tragically, and I get all freaked out and guilty for thinking these thoughts.

And so, I’m constantly bouncing between happy, joyful dreaming, and fear of jinxing myself, and fear of living all of this over again, and also the fear of not having any more children. Because it’s worth it. I know all of the heartache would be worth even just seconds with my child. But it still scares me.

Anyway. I’m going to have ice cream and wine for dinner, because it’s a three day weekend and it’s hot outside.


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It’s a Boy!

I wanted a boy. Even though I was never 100% sure I wanted kids, I knew that if I did, I wanted boys. Mostly because I remember what I put my parents through during my teenage years, and that karma would bite me in the butt if I had a girl. So boys it is!

When we found out we were pregnant, I immediately began referring to the baby as a boy, long before we found out the sex. Maybe it was mother’s intuition, maybe it wishful thinking on my part. But every time I called him a him, everyone’s eyes would light up and ask if we had found out. No, sorry guys, not yet. And my friends were great, because for 20 long weeks they asked that question a hundred times, each time looking as excited as the first.

On July 11, 2015, a Saturday, we had our 20 week anatomy scan. Our appointment was at the ungodly hour of 7:30 am (on a Saturday!), and we had to be there 15 minutes early, which means we had to leave by 6:45 am. And of course you can’t go to the bathroom before the appointment, which is just cruel. Our third wedding anniversary was a few days before, so we decided we would go to San Francisco after the appointment to celebrate our anniversary.

Our appointment went ok. Theo is an incredibly stubborn baby, and for every scan he always managed to be in the worst possible position. This scan was no different, and despite our best efforts we could not get all of the images we needed. The ultrasound tech had me try everything-I switched sides, coughed hard, laughed, bicycle crunches, jumping jacks, walked around the office, touched my toes…. Kenny enjoyed watching me jump (literally!) through of all these hoops a little too much. I should have made him do the exercises with me, and if we get pregnant again and make it to that scan and have another stubborn baby, you can bet I will.

After almost an hour and a half of this, I was finally allowed to pee. She was hoping that would move Theo into a better position.

No luck.

So she finally decided to give up and that we would have to come back in a few days to get the rest of the images. At that time, she asked us if we would like to know the sex. Our original plan was to have her write it down, and then we would open it up on the beach in SF. But I couldn’t wait, so I asked her to tell us the sex.

She began moving the wand around and before she even said it, I saw it.

We were having a boy!

I was so happy, but mostly I felt like saying, “Duh. What have I been saying this whole time?”.

On the drive to SF I text everyone telling them we finally found out and we were having a boy. Everyone was incredibly excited for us. Those texts are going into his baby book.


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Dejay vu

Here we are again.

We received Theo’s genetic results on April 28th. The results were devastating for me. Immediately after our appointment with the genetic counselor, Kenny and I went to have our blood drawn so we can be tested for the same variants. We were told this round of testing would take a month to complete.

Tomorrow would be exactly one month and I hadn’t heard anything for any of our doctors. So I emailed the genetic counselor and asked for an update. She responded right away, saying that the results came in yesterday but she is out of the office through this weekend, and hasn’t read the results yet. So we made an appointment for Tuesday, where she will give us our results.

I’m feeling all of those emotions I felt the first time all over again. I’m so excited, nervous, impatient, scared, name it, I’m feeling it! I haven’t had a straight forward emotion since Theo died.

But I also feel so hopeful. I have hope that our results are normal and we can start trying to conceive naturally soon. And perhaps most importantly, I know that if the results aren’t what we want to hear, we have options we can pursue. Even if we are carriers for a genetic disease, more kids aren’t completely out of the cards.

And it’s weird, but it’s comforting that my baby is making such a splash in the medical world. He won’t be forgotten any time soon.


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Anger

The anger over my son’s death hits me randomly. I’ll have days, weeks even, where my anger is minimal.

And then waves of anger will hit.

Saturday we are planning on visiting Theo’s tree, and then his grave. He finally got his gravestone (the stone was out of order and blah blah blah). I shouldn’t be planning a day like this. I shouldn’t be looking forward to watching a freaking tree grow in a park. Or feeling relief that his grave is no longer unmarked.

This isn’t how parenting is supposed to be.

Kenny and I should be arguing about whose turn it is to change his diaper again, not saying how much we miss him. We should be sleep deprived over his relentlessly crying, not over grief.

God didn’t cause our baby’s death, but He could have saved him. He didn’t, and it’s incredibly hard to accept that. I’ll never understand why, and honestly, I don’t think I ever want to.

And it’s not God’s plan that our son died. Nor is it better that he died. Nope. It’s amazing that my son is in Heaven and I’m eternally grateful I’ll see him again one day, but that’s not where he should be. I should be seeing him now, every day, not when I die.

Not everything happens for a reason, sometimes shit just happens.

Yes, good things can come from bad. And someday I really hope that I will be in a position to help others experiencing the death of their newborn. But my son didn’t die to help others. His death isn’t good. If we’re able to extract some good, that doesn’t make him dying any less bad. It will always be the worst thing that ever happened to me.

My son should be in my arms (well, at this point, he should be crawling on the floor and causing untold mayhem).

On Mother’s Day he turned 5 months old. It didn’t hit me until a couple of days ago. Was I in denial for that week? Was my brain protecting me from facing that fact? And if that’s the case, why ripe off the bandaid now?

I just want him back. I love him so much, and I want him back.


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Third Trimester

I don’t know why, but I’ve dreaded writing about the last trimester. I think because his birth was so traumatic, and writing about the third trimester is just one step closer to his birth.

But the third trimester was amazing in so many ways.

We were completely in love with Theo, though still wrapping our mind around the fact that soon we would have a baby.

I was majorly showing, and I felt like an elephant. But everyone kept telling me I was so tiny and the bump was so “cute”. It made me fearful that Theo wasn’t getting big enough, but he was always on track for development at every appointment.

We went to Vancouver, Canada in September and had a blast. It was so much fun showing Theo the world, and we talked about the places we would take him next. I really feel it’s important to expose my children to the world as much as possible.

I walked every day. Less toward the end, but I tried really hard to exercise on a regular basis. I definitely developed that waddle pregnant women get. I tried really hard to fight it, but I couldn’t. I waddled.

Two weeks after we got back from Canada we did our maternity photos, on September 30th. Shopping for the maternity photos was so hard. My stomach was getting bigger every day and I was continually out growing my shirts. The day before the photoshoot, I went shopping and bought a beautiful purple blouse. Kenny wore my favorite shirt of his, pin strips with purple and blue. He rolled up the sleeves a little, just the way I like (his arms are his best feature 😉 ). We had the photoshoot done in a nearby park right after work. It was so much fun.

It was raining that day, and I was a little worried about the rain ruining the photos. But the photographer said she would bring umbrellas and we could do the photos in the rain if necessary. It stopped just in time for our photos, and they turned out great. They have a woodsy look to them that I love.

On October 17th we had our baby shower. I wanted a casual, co-ed BBQ-type shower. And that’s exactly what we got. Again I was worried about the weather, as it had started to rain but stopped just as the shower was starting. It was so much fun, and our friends really went all out for us. Friends traveled from out of state to party with us. The decorations were so cute, and my friends made so many wonderful and yummy desserts. It was amazing.

We only played one shower game because I hate shower games. My friend asked Kenny and I questions about babies (i.e. when do they start crawling? How long do they stay in the carseat?), and we wrote our answers on a white board, and then showed everyone our answers. Our friends played along with us. Kenny answered each question with a joke answer, and he was so funny. When asked when babies start crawling, he said when Theo sees a toy we won’t give him. We had so much fun at the shower.

Our friends truly showered us with love and gifts. We got so many wonderful and cute things for Theo. It breaks my heart that we won’t be able to use everything we got for Theo. I’ve set aside a few things that will always just be Theo’s, no matter how many more boys we have. Everything else we’ll pass down to any future children, just like we would if Theo had lived.

Every test was normal during the third trimester. They never had any issues with finding his heart rate, and he was a super active baby. Pretty quiet in the morning, but non-stop kicking in the afternoon and evening. You could watch my stomach move from several feet away, that’s how active he was. We joked that Theo was dancing in a night club, and made jokes about how much of a handle he would be once he started crawling.

When Kenny was 2 years old, he had a penchant for running around his neighborhood naked (yep, he was that kid!). When we took walks around our neighborhood in the evening, we planned out the routes Theo would take as he ran around the neighborhood naked just like his father. We wanted to be prepared for all of his escape routes. 😉

My first day on maternity leave was 11/13/15. I watched Netflix and worked on the nursery during my leave. I’ll write another post dedicated to just the nursery later.

My only complaints during the third trimester were the heartburn and back aches. The heartburn was horrendous. Some nights, I had to sleep on the couch in a slightly reclined position because the heartburn would keep me awake. I’m pretty sure Tums saw a significant decrease in profits after Theo was born.

My due date came and went. I was due 11/27/15, the day after Thanksgiving. On December 7th I went in for what was my final appointment, at 41.5 weeks. We agreed to induce the next day, but my doctor wanted me to have an NST done first. At the NST, they saw I was having contractions and I was admitted to the maternity ward.


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Mother’s Day

Unsurprisingly, Mother’s Day was an incredibly hard day.

My mom died when I was 19. It’s never been a good day for me for that reason.

But this year was especially tough. This time last year I was pregnant. This time last year I was blissfully naive, even a little smug, about pregnancy. I thought nothing could go wrong, and that was life was only getting better. We were living “the dream”: married young, great jobs, 20160508_184002house, and a baby on the way.

This year was a storm. So many conflicting emotions, but that’s par for the course. I haven’t had a straightforward emotion since Theo died.

This year, I both wanted to burrow my head in the sand and pretend Mother’s Day was just your typical day. But I also wanted to celebrate as “normal” mothers do, and be celebrated as a normal mom. I both wanted everyone to not say anything about the day to me, and wanted everyone to acknowledge me.

I told my husband I wanted him to do something special for me on Mother’s Day, and he was so amazing.

He went to Build-a-Bear and made a Teddy bear for me. The Giants uniform is because he loves baseball and wanted to teach our son how to play. And in February, I gave him a birthday present of a private tour of the Giants stadium with a custom jersey with our son’s name on it.

The ice skates are because I used to figure skate and wanted to teach our son how to as well. It’s a little bit of both us, Kenny said. The bear also has a heart beat, and a “birth” certificate. The name on the certificate is our son’s name and his birthdate. I plan on framing the certificate, and scanning in a copy to put in the baby book I’m making.

Not in the picture, but he also included a mini Wookie doll (like the Star Wars wookies). It’s an inside joke between us, and really has nothing to do with our son, just an extensive joke we play on each other. 😀

When he gave me the bear, I sobbed. I was so surprised. I had dropped hints of wanting a birthstone ring of Theo’s birthstone, so I was expecting that. I was not expecting this, and I love it so, so, so much. For the first time in a long, long time, I cried tears of happiness. I cannot say how much I love having this bear, and how much it has comforted me. The heart beat, though I know it’s not Theo’s, is so comforting to hear. It truly surprised me, and Kenny, how much comfort the Teddy bear brings us.

It’s of course no replacement for our son. I don’t think I can accurately describe what having this bear means. We have a physical representation of our son now, something we can hold when the physical ache in our arms is too much to bear.


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Letting Go

The appointment on Thursday did not go as we expected. I’ve been so numb since then, I can hardly get my head above the water.

Ever since Theo died, doctors were constantly telling us they had no idea what happened. The cardiologist at the children’s hospital said he had only seen one similar case, 20 years ago. The rest of the staff at the hospital had never seen anything like it. The case 20 years ago was similar, but there were some key differences in our children. Namely, Theo was perfect aside from his undeveloped lungs; no other medical issues were found.

When they started the genetic testing, they emphasized the likelihood the results would return nothing. Because Theo was such a medical anomaly, they really weren’t expecting what they found.

They found variants on the genes RYR1, TTN, and NOTCH1. But the variants they found have never been reported before. The doctors literally know nothing about these variants. They could be harmless variants unrelated to his lung issue, it could be a genetic mutation that caused his lung issue, or a genetic disease. So… that means we’re still in limbo.

My husband and I are being tested for these same variants. Fortunately, this test will only take a month, so we should have the results by the end of May.

There are a few possible outcomes from the test.

  1. We are both free of this variant. This would mean the variants are either harmless and unrelated to his lung issue, or a genetic mutation that caused his undeveloped lungs. Either way, if we are both negative the chance of this happening again is as close to 0% as it can be. In terms of trying again, we would try again naturally right away. My OB encourages us to do genetic testing during the pregnancy to test for the same variants, to be on the safe side. If we find the same variants, we would then make the decision to terminate the pregnancy or carry to term knowing our child might die.
  2. Only one of us has the same variants. This test result means it is a genetic disease, but only one of us has it. This would actually open up a bunch of more questions for me. Because only one of us would be a carrier, technically it would mean Theo would have been a carrier at worst and he would not have had the genetic disease. But I’m dovetailing… In the end, the chance of this happening again if only one of us is a carrier is the same as #1. Which means we would also be able to try again naturally and do genetic testing during the pregnancy.
  3. We are both carriers of this variant. This means it is a genetic disease, and more than likely the cause of his lung issue. If we are both carriers, there is a 25% chance of us having another child with undeveloped lungs and dying. If we’re both carriers, we have two options in terms of biological children. Conceive naturally, do genetic testing during the pregnancy to test if the baby has the disease, and then decide if we should terminate or carry to term knowing our child will die. Or… we do IVF. We would have the embryos tested, and only transfer the normal ones. Or, surprise option #3, we decide biological children aren’t in our cards.

I feel like we are in a horrible place. The consequences of us both being carriers is high. And it’s all I can focus on. I’m trying not to, but the consequences are so high I can’t get them out of my mind. I can’t bury another child, and knowing there is a possibility this is a genetic disease that can be passed on again is terrifying. And the idea of “gambling” and getting pregnant when there would be a 25% chance our child would die when born? I don’t think I can do that.

We have a lot of praying and thinking about what God wants us to do. Regardless of the results, we know we need to trust Him, though it’s hard.

And honestly, everything that has happened with Theo has made me super crazy. I’ve become such a hypochondriac. The most random things spook me, or give me anxiety attacks. On the plus side, it has pushed me to take my health more seriously. But I’m so scared now that I’ve realized how fragile life is. I’m scared of leaving my husband a widower, I’m scared of becoming a widow. Of losing other family and friends.

There’s no point in holding onto these worries. I can’t change them by worrying and giving myself anxiety. And so, I’m trying to let go. Let go of these worries, let go of my fears, even my dreams, and just trust in God to get me through everything. Replace these worries with resolve, endurance, and faith.