Holding Our Angel

Loving After Loss


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Eternal Sunshine

I’ve been thinking a lot about the movie Eternal Sunshine of the Spotless Mind. It’s a great movie that came out about 13 years ago (jeeze, that feels like forever!). The movie is about a couple that breaks up, and each decides to have a procedure done to erase all memories they have of each other and their relationship. The man, however, starts to realize that he made a mistake in trying to erase the memories as he realizes he still loves her. The movie makes you think: can you really learn from your mistakes and past if you keep erasing those memories? Or are you doomed to repeat your mistakes?

Sometimes it feels like we’re forgetting about Theo. Logically, I know this isn’t possible. You just don’t forget your child, and I never will forget about Theo. But Artie is requiring so much of us right now (and for obviously good reasons!), that we have little time or energy for Theo. Life has gotten in the way a couple of times too–I developed an infection (nothing major, just annoying and inconvenient) and our AC went out at the same time. But there’s so much guilt with not thinking about Theo as much. It feels like we’re replacing him with Artie. If Theo were here, Artie would still be getting a lot of attention, but more than what currently is would be going to Theo.

I think some people see Artie as the equivalent of that procedure to erase memories. Like, now that we have a living child, all the bad that came with losing Theo is undone and has been made right. That our grief is over. But that’s not how it works. We can’t just pretend to be perfectly whole now, we never will be. And if we were to forget the grief from losing Theo, that would mean one of two things: either we forgot about/never had Theo or we don’t love Theo as much as we do. And neither of those are possible, so we accept the grief. You can’t erase the bad without also erasing the good, the two are intertwined.

Mother’s Day was an incredibly emotional day for me, and I spent a large part of it crying. Having Artie here is a hard example of what should have been with Theo. The joy with Artie is all that we should have gotten with Theo, instead of this grief we got. We ended up not doing much for Mother’s Day, which was fine with me. Even if we would have been able to go out, I don’t think I would have been up for seeing all the happy families everywhere.

On Mother’s Day, I got more people wishing me a happy Mother’s Day than last year. It could be because I now have a living child, but I am giving those people the benefit of the doubt. This time last year I wasn’t as open about what I needed from people, and maybe they were unsure of what, if anything, to say. I’m more open and vocal now, so maybe they felt more comfortable reaching out to me because of that. It was sweet they thought of me.

What hurt though, were all the well wishes I got that mentioned Artie but not Theo. Either mention both of my kids or none at all (nothing wrong with a “Happy Mother’s Day!”), but to leave one out hurt like hell. I even got a “Happy first Mother’s Day!”  (emphasis mine). Uh…. my first Mother’s Day was last year….

There was….an incident… involving a recent visitor and Theo. Visitor came to see Artie, and was looking at a photo of Theo we have displayed on a bookcase. There is an empty frame next to Theo’s picture, where a picture of Artie will go. This person  covered up the photo of Theo with the empty frame. Did this without asking, without saying anything at all, just picked up the empty frame and laid it against Theo’s picture so you could no longer see him.

Unacceptable.

I surprised myself with how calmly I told the person to uncover it and not touch the photo again. Guess I’m maturing a little bit (only took 28 years!). Kenny then took over talking to this person, and let him/her know why this was not ok.

But that hurt so much, to have someone come into my home and cover up my son. I’m not ashamed of him. Yes, pictures of babies on life support are hard to look at because who wants to picture a baby dying? But while it makes you uncomfortable to briefly see a photo of a dying child, it is a reality I deal with every second of every day. So fuck that. I will not apologize for my son, for being proud of him, or for keeping him a part of our family. Especially in my own home.

We had the newborn photos done. We used the same photographer who did the maternity photos, and she was incredible again. We incorporated Theo bear and a picture of Theo into some of the photos, just like we would if Theo was actually here. She even got Artie to hold onto the picture of Theo for a few minutes, which was so cute! Turns out the photographer has a good friend who lost a child at birth. She kept making me cry though while we were taking the photos, so I had to retouch my makeup a few times.

Kenny goes back to work in a few days (for a few weeks, then he’s taking more time off). I’m both looking forward to this and dreading this. I’m excited for it to just be Artie and I, and for me to have the chance to work on some projects while he naps. But… it’s also going to just be Artie and I during the day. No Kenny to take over when I need a break. We’ve been talking about me becoming a stay at home mom, so this will be a trial run to see if I like it/can do it. Me staying home will require some sacrifices too, so that’s something we have to consider.

I am going to say something I feel a little guilty about: I hate breastfeeding. It’s technically going well, I have no issues with my supply or his latch or anything like that. But I hate it. It’s exhausting and I feel trapped at home because I have to always be available to Artie when he’s hungry. So I decided to stop and try exclusively pumping. We’ll be switching Artie to formula for a couple of days while I get used to pumping and build up a supply. And if this doesn’t work, we’ll be doing all formula.

Every June, the hospital where Theo died holds a remembrance ceremony for babies and children who died there. This year, it falls during Kenny’s second round of paternity leave. I haven’t decided if we’ll be going. It would be so nice to go, this may be our only chance since they hold it on a week night and the hospital is 2 hours from us. And taking Artie would be so bittersweet. But…. I don’t know. I have a few days before I have to RSVP, hopefully I can make up my mind.

Here’s a funny video on PPD.


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Body Image and Loss

I’ve been thinking about this for months, but I’ve been so hesitant to write about it. And even when I started to write, I had to do it very slowly and over time. This hits a very vulnerable and raw spot, and for a lot of reasons I’ve taken some steps back in being completely open about things. But… this is something I haven’t really addressed before and decided it was time.

After Theo died, my confidence and trust in my body was destroyed, and I felt so worthless as a woman and a mom. I hated my body and myself for what it did to Theo.

I think it is a special type of hell when your baby dies inside you or because he didn’t develop correctly. Knowing my body had one job, and it couldn’t even do that shook me to my core. It really made me question what I was capable of, and how else my body would fail me, and when it would happen. I wondered what else would be ripped away from me because my body failed. Would I still be physically capable of doing what I love, still enjoying life if I couldn’t trust my body and health to be there for me? Suddenly I was anxious about things I was never worried about before. I felt fine my entire pregnancy, and yet Theo was so sick, so how could I trust what my body was telling me now?

Though I know rationally I did everything right and I didn’t chose this or have any control on how Theo’s genes formed, I felt like my body killed my son. And I hated my body, myself, for that. How could my body betray me like this? How could I have not known something was wrong? How much of a mess could my body be that it killed my son despite me doing everything right, when there are so many women who do stupid shit while pregnant and their children live?

On really bad days, when my anxiety or PTSD is at its strongest, it’s so easy to take one little thing that goes wrong (like forgetting to pick up the dry cleaning) and have that end with “Why did you think you could do this, you couldn’t even make a healthy baby?”. My “rationale” in these moments is pretty simple: a women’s body is made to produce health babies->my body couldn’t do that-> therefore I can’t do anything right.

Then to have my milk come in was a slap in the face. It was just another way my body couldn’t get it together–it created a baby that couldn’t live but was too stupid to recognize that and so my milk came in despite there not being a baby that needed it. I pumped for a short while after Theo died, and that was helpful at first but quickly turned not helpful so I stopped cold turkey. Which you’re not supposed to do, and I’m glad I didn’t get an infection or anything, but I did find it cruelly ironic that I didn’t get an infection. Like again, here’s my body not doing what it’s supposed to do, even though this time it strangely worked in my favor. It’s weird, and I have weird feelings over this, and I realize it sounds very strange to be complaining about not getting an infection.

There is so much emphasis on having kids in our culture, and tying a woman’s worth to her children. And because my body failed in that regard, failed to produce a healthy baby, I felt like I wasn’t worth much as a woman and a mom. It’s hard to fight against the constant images of pregnancy and babies that are everywhere. It’s in TV shows, movies, commercials, books, and the small talk people make. The #momlife and “Mom life is the best life” sayings that are plastered on coffee mugs and bumper stickers. The picture-perfect Pinterest lifestyle. The jokes about wanting to get rid of your kids. None of these versions of motherhood include the bereaved mother and the children who are no longer on Earth. It’s no wonder I felt worthless–almost everywhere I turned I was being told, directly or indirectly, that I didn’t count as a mom and my son didn’t count. And this exacerbated my hatred for my body because I viewed my body as the cause of my son’s death.

When people kept silent about Theo, it only reinforced my lack of worth and hatred of my body. Because I KNOW they would have talked to me about him if he had lived. They would have asked for pictures and for me to tell his birth story and they would ask me about so many other things. But some people kept silent instead. They treated me as if I was the carrier of some disease that could be caught–like their child(ren) would die because they knew me. They ignored my motherhood, pretending as if Theo was non-existent because it made them uncomfortable. All I heard in their silence was that only the pretty, happy parts of life were worth acknowledging, and the biggest part of me (the most important part of me) didn’t meet those requirements anymore. Theo is perfect in so many ways, but he wasn’t good enough for them. And that crushed me and made me feel even more worthless, because I had failed my son and it was because of me that he wasn’t good enough.

This body trust issue has had an interesting effect on pregnancy after loss. Part of me wants my body to prove itself–that it can get something right, to redeem myself. The other part of me says that in no fucking way am I trusting my body with this, and I can’t tell you the number of times I’ve almost begged my doctors to take Steam Bun early (and in some of those cases, REALLY early). Because at the end of the day, I want him taken out while I know he’s alive because I trust machines and science more than I trust my body. As Einstein said, “The definition of insanity is to do the same thing over and over again, expecting different results”. And yet, here I am, pregnant again, expecting to get a living child out of this when my history has been the opposite.

Loving myself and self-care after my baby has died is really freaking hard. It is a long, hard road up a steep mountain with lots of obstacles. It often feels like there’s no point in trying to be healthy. After all, if I could do everything right and still have the most important thing ripped away from me, then doing everything right clearly didn’t matter. So what’s to motivate me to keep doing what’s best for myself? Being there for Kenny usually does, but not always. I often felt like I didn’t deserve to be healthy, to take care of myself, because of what happened to Theo. During these periods I would not care about what I ate or if I exercised. It’s a dark, dark hole to be in. These are the moments when I tend to hear “I wish you would be happy”, etc. the most and this only made me feel worse. It felt like I wasn’t worth anyone’s time if I wasn’t happy and smiling and looking on the bright side. It felt like Theo and his life and death, and the effects it had on me, weren’t good enough.

There is another extreme I’ve swung to, and that was to be obsessive about food and exercise. To take control from fate and become invincible. I ate “clean” and exercised a lot for long stretches of time and became obsessive about what was in all the products I used, eating only organic, etc. I exhausted myself trying to be perfect in this way and would beat myself up if I ate junk food. I convinced myself that every “slip up” would result in another child of mine dying. I put a lot of pressure on myself to be the epitome of health.

Obviously both extremes are neither healthy nor sustainable, and I have evened out in this regard. I still occasionally have that second bowl of ice cream, but it’s usually vegan, organic, hippie ice cream so that totally balances it out. 😉 The majority of what we eat at home is still organic and I’m still super careful about what products we use (don’t even get me started on BPA and all of the signs in CA that state “there are chemicals here known to the state of CA that cause birth defects”. Ugh, I’m rambling.), but I have a much healthier attitude toward it overall.

There are so many wounds that have to heal after you’ve lost a child, so many issues you have to face. You can’t work on everything at once, so some things get shoved down the list. It doesn’t make these issues any less real or hard to deal with though. I’m slowly rebuilding my body image and trust, but it won’t happen over night.


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It’s complicated

I took a short break from blogging because I needed to reevaluate if being so open about grief and child loss was still helping me. I think being honest and real about these topics is so important, but it also has some challenges and I wanted to make sure there were still enough benefits for me. Especially as we near Steam Bun’s birth, I expect there to be so many emotions if he lives. I can’t predict what I’ll feel, but I am prepared to face whatever I am feeling head on. That will make some people uncomfortable, because the truth and life can be uncomfortable, and I needed to make sure I was up for dealing with that.

Kenny and I have gotten very specific in our prayers over Steam Bun. We prayed every day for Theo, always asking God to watch over him and keep him safe. Which, technically God is doing, but so not what we meant (obviously). So now when we pray fro Steam Bun we say things like “Please let Steam Bun continue to develop properly, be born alive and screaming, and be born healthy. Please make sure his worst illness isn’t something over-the-counter medicine can’t fix, and make sure he lives on Earth for at least 60 years, dying only after we die. And make sure we don’t die until we are at least 60 years old, and only if we die together”. I used to also throw in something about not going into premature labor, but I’m not as worried about that now. It’s still hard to trust that God will answer our prayers regarding Steam Bun, and I think I’ll be struggling with that for awhile, even if Steam Bun is born healthy.

So I’m on maternity leave now, at the end of my second week actually. It feels like it has been forever already! I’m already ahead of my schedule in terms of completing projects, apparently I work more quickly than I realize (when I want to, lol). Kenny teaches at a university part-time, so I volunteered to do all of his grading and everything for the rest of the semester. Gives me another project to focus on. Lol.

My first project was to remove the koala decal from the nursery and put up the new decal I bought for Steam Bun. It unbelievably sucked to take down Theo’s decal. I cried for most of that, I felt like I was giving up on Theo in a weird way. And there’s no graceful way of removing a decal that size, so many of the koalas and parts of the tree ripped as I was removing them, which made me feel worse. It’s just awful to have to change your child’s room because they died, even if it is to potentially welcome another one home.

Putting up Steam Bun’s decal (owls in birch trees), was easier on me and fun, but part of me thought, “This is going to be a huge pain in the ass to remove if he doesn’t live”. This actually made me laugh, as I remembered Kenny commenting that the koala decal would be a pain to remove when Theo decided he no longer liked koalas. And it just seemed so morbidly funny to be making almost the same comment, a year and a half apart, and yet the comments be so very different.

Putting together Steam Bun’s nursery has such a different feel than when I did it for Theo. With Theo, there was no doubt he would come home. We were past the “safe point” in the pregnancy and naively thought a healthy baby was a given at that point. We naively believed healthy pregnancies end with a healthy baby, that SIDS and childhood cancer were the only threats we faced. And those were things that happened to “other people”.

Now it’s a weird tug and pull, torn between wanting to prepare and be excited for this baby, but knowing that every additional thing I do is just one more thing I’ll have to undo if he doesn’t live. I think we’ll have to move if Steam Bun doesn’t come home. And preparing for Steam Bun has brought up new aspects of grief I didn’t know before. I mourn the rose-colored glasses I used to have regarding pregnancy, but mostly I mourn what Steam Bun is missing out on. As I change the nursery, I’m keenly aware that it’s not changing how it’s supposed to be changing.

At this point in my alternate life (the one in which Theo lives), we would be debating if we should even bother with buying Steam Bun a crib. After all, both the boys would have to share a room and we would eventually need to buy a bunk bed. Would we try to move Theo to a bunk bed now, and let Steam Bun use his crib? Would we keep Steam Bun in our room for as long as possible, to let Theo keep his crib for as long as possible? Would we use this opportunity to change the theme of the boys’ room to a more typical boy theme, like superheroes or dinosaurs?

I’ll never know the answers to these questions.

Instead of talking about how to prepare Theo for having a younger brother and sharing the spotlight, we talk about the best way to tell a younger sibling their older sibling is dead, and when. We talk about if we think Steam Bun will grieve because he sees us grieving, and if that is healthy or not. Instead of learning to prepare an older sibling for a baby, we talk to loss parents about how they deal with handling their grief while parenting a living child.

Steam Bun will never have the older brother he should have. He won’t have an older brother to torment him, play with him, protect him. I’ll never be able to say “go play with your brother” unless I want Steam Bun to play with Theo bear, or an imaginary Theo. And though it’s normal for kids to have imaginary friends, what if Steam Bun says his imaginary friend is Theo?? I realize I’m getting ahead of myself here, but is it normal for a kid to have their deceased older sibling as their imaginary friend? These are the things I think about.

Last weekend we were hanging out at a friend’s backyard and I got so many mosquito bites. It was a last minute thing and I forgot to put on bug spray, not that it helps me much as I am candy to mosquitos. Every time I get a mosquito bite, the bite welts and I will get hives if I scratch it. I wasn’t sure what I’m allowed to use for the bites while pregnant, so I called my doctor to double check. She also gave me a list of symptoms to watch out for (for West Nile Virus, etc.). I was not at all concerned about the bites until then, and now I’m paranoid. Lol. I’ve managed to resist googling WNV + pregnancy so far, hopefully I can keep holding out.

I had appointments with the fire department this week to have the car seat checked in both of our cars. It’s strange driving around with the car seat base in my car again. The car seat itself is in the closet, and there it will remain until we leave for the hospital. But it’s still strange, opening up the door to the back seat and seeing a car seat base. As I walk past cars, I peer in and see if they have car seats or other signs of kids in the car. I wonder what their family is like–have they lost a child? Was the road to the family they have an easy one? I wonder if people will walk past my car and see the car seat base and think the same thing. (This sounds creepier than it is: I’m not going up to each car and sticking my face against the window. Lol. I just glance in as I am walking by.)

I’ve been meticulously saving the receipts and boxes for everything I’ve bought for Steam Bun. Last time, I threw out all the boxes right away and saved receipts for only the big items or the things I wasn’t sure would work. Now I’m saving receipts for even the nightlight I bought, with all of the boxes piled up in the hall closet.

Grief, pregnancy hormones, and loss brain are a dangerous combination. It’s exhausting dealing with all of this honestly. Though I am not wishing for a preemie, I’ll be so grateful when this pregnancy is over. I think Kenny’s looking forward to it being over too. 😉

Since I know I’m having a c-section this time, I’ve been doing research on c-section recovery. My postpartum care last time was definitely lacking, and that can only be partially blamed on me discharging myself against medical advice from the hospital. At my 4-6 week postpartum appointment, I was cleared for exercising and when I asked what kind of exercises were safe to do all I was told was “go slow”. Fortunately, I soon found a loss mom who is also a personal trainer, and she was able to give me really good information on how to safely return to exercise after a c-section. I’ll also be trying a belly binder this time, which I did not know about after my last c-section.

I’ve been off facebook for a few weeks and it’s been so refreshing! I did sneak on to Kenny’s facebook and immediately regretted it. My anxiety and PTSD were immediately triggered, and this only confirmed facebook is no good for me. There is one thing I miss though, a small facebook group of loss moms that focused on mental and physical health after loss. Having that community for support in dealing with PTSD, body image after loss, etc. was so great and I miss it. The loss community is truly like no other. Maybe I’ll try to start something like that locally after Steam Bun’s birth.

This upcoming week I’ll be working on Steam Bun’s baby book. I’m so conflicted about this one. Ugh.


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A lovely trip

**Trigger warning**

So last week I’m in the office, and I decide to walk around the block on my break. Gotta combat all the fro-yo I’m eating some how…

And I slip on some freaking leaves and fall forward. Fortunately, I did not hit my abdomen against the ground, but my wrists and knees got a little banged up.

I was tempted to just sit there, but I was close to another building so I walked there and sat in their lobby while I called my doctor’s office. Told the nurse what happened, she said she thinks I should go to labor and delivery, but needed to call them first to double checked. After putting me on hold, she tells me L&D won’t accept me since I’m not far enough along (by like 3 days but whatever…) and tells me my options are to go to the ER or come in that day for an appointment. First available appointment is 2.5 hours later, which I accept.

After I hung up I was feeling like I should go to the ER instead, so I text a friend who agreed with me and headed to the ER. The doctors and nurses there were very nice, agreed that going in right away was the right thing to do, and saw me pretty quick. Steam Bun had stopped moving about 20 minutes before the fall (which is normal so far–that time of day I tend not to feel anything), but I was telling Steam Bun the whole way to the ER to start moving so I would know s/he is ok. As soon as I entered the ER, Steam Bun started kicking (already listening to mommy!) so I felt some relief.

Everything looked good and heartbeat was fine.

I felt…mostly relieved, though I was still fighting to ignore that voice in the back of my head. Fortunately, a couple days later I had a regular prenatal appointment scheduled, and my doctor was able to confirm again that the placenta and everything was fine.

One small victory in this: I resisted playing Dr. Google and reading all horror stories after a fall. Woo! Usually Google is the second place I turn, and it always makes it worse.

But in other news, I was about ready to throw my computer at the HR department the other day. I plan on going on leave sometime in the next few months, so I figured now would be a good time to gather all of the paperwork I would need to complete. This is what I did last time I went on leave, and had no problem getting the paperwork early. I emailed HR a couple days ago and was told to reach out 2 weeks before my scheduled leave date and they would provide all information then.

Uh, not an acceptable answer to me (especially considering last year). So I pushed back, saying that I want to have all of the paperwork now so if I need to go on leave earlier than planned (such as premature labor), I have it ready for me to fill out. I was told no, HR will not give me any paperwork or tell me what information they need from my doctor until 2 weeks before my scheduled leave date. I was told it is “just easier” this way.

So I emailed a second HR department, which technically does not oversee my division but they have a reputation of being more helpful. Told them I know it is early but I would like all of the paperwork and everything now so I can be prepared. They had no problem with this, and were able to give me all of the paperwork I need. I mentioned the first HR department wouldn’t help me and why, and the second said there is nothing wrong with getting everything ready early and that it actually helps them when employees are on top of stuff like this (imagine that…).

I emailed Kenny a copy of the paperwork, so if something should happen (knock on wood) he can complete it for me so I have it ready to send to HR at a moment’s notice.


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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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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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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.