Holding Our Angel

Loving After Loss


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That’s 1

I realized I forgot to give an update last week on the fundraiser!

We are now at over 15% raised! I’m so excited, and I can’t believe we’ve already raised so much. If you would like to check out our fundraiser it is here. In addition to the money donated through the link, we’ve also received some cash and check donations! I’m very thankful for everyone who has donated, and is honoring our Theo in this way. Someone asked me what happens if we don’t meet our goal and the answer is nothing bad. The goal is arbitrary, and even if we don’t meet it, all of the money raised will still go to UCSF.

If you are a loss parent, I would love to honor your child at the party! Donations are NOT required for this, I do not care if you donate or not but I would still love to remember your child at the party. Don’t forget to email me at tpldigidesigns@gmail.com with a picture of your baby, your child’s name, birthdate, and date of passing, along with your child’s story. They will be added to the slideshow I am creating. I’ve already gotten several emails, and I’m so excited and honored to remember all of the children at the party!

**Trigger warning**

Saturday night I went to Labor & Delivery because I thought my amniotic fluid was  leaking.

It, thank God, was not. Steam Bun’s heartbeat was fine, and I got to listen to it for about an hour, which was so nice. His heartbeat is very soothing. I forgot how sensitive those heart monitor straps are, and a few times I moved or Steam Bun hit the monitor and all of a sudden it said his heartbeat was 30 or 40 because it was no longer positioned correctly. I was also not having contractions, which I knew I wasn’t anyway, but it was nice to get that confirmation.

An ultrasound was also done and the doctor showed me the fluid level (no issues there), Steam Bun’s diaphragm (perfect), and fetal breathing movement (looked great, yay!). I breathed a huge sigh of relief. The doctor took plenty of time to answer all of my questions and didn’t act like I was being paranoid, which I so appreciate. He told me our perinatologist will likely look closely at the fetal breathing movement at our second anatomy scan.

I asked him what I could do to tell the difference between leaking amniotic fluid and leaking… other stuff. He confirmed what my OB has told me, do the “gush test”, but would prefer I come in every time I have any concern. Not that I was doubting my OB, but it was nice to have him confirm what she said too.

I normally go grocery shopping Saturday or Sunday mornings, since there’s much fewer people in the stores at that time. But I didn’t go Saturday morning because I was lazy, and didn’t go Sunday because I overslept. So I went grocery shopping today, on my way home from work.

I only had a few items, so I got in line in the express checkout. And right in front of me was a dad with a stroller. The baby couldn’t have been more than 4 months old. The dad was picking up a few things, so he put all of the food in the bottom of the stroller. I immediately thought of Kenny and how much he is missing out on. Kenny was so excited to take Theo on silly errands, and I can totally picture Kenny loading up the stroller with the groceries instead of getting a bag. Kenny would have been proudly pushing the stroller everywhere we go too. It’s been awhile since a trigger has knocked me off my feet, but that one did. It’s just not fair that Kenny, who is a great dad to an angel but would be a great dad to a living child, can’t parent the way he is supposed to. And I can’t watch Kenny be the dad he was supposed to be to Theo.

I started tearing up in the store, but didn’t really start crying until I got to my car. And then Kenny had one of those moments that has me convinced he really is psychic and just hides it from me. A few minutes later he text me he loves me, which made me feel a little bit better.


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Big Steps

I have a Barnes & Noble credit card, and they send you a gift card once you get a certain number of points. Since Theo died, I’ve used every B&N gift card to buy books on grief and child loss. Until this week that is. I got my gift card and I bought two cookbooks with it. There’s still some books on child loss that I want to buy, but I have a few books I already own that I haven’t read yet, so I decided to buy something fun with the gift card. It feels strange. If you look at my Amazon wishlist of books, you’ll notice a clear divide in the books I added pre- and post-Theo’s death. Even if you didn’t know my story, you would be able to guess I lost a child around that time just based on the wishlist. I’m not sure what this means for my grief journey, but it feels like it means something.

**Trigger warning**

*

There’s also been some big steps in the pregnancy.

A couple of weeks ago, I asked my doctor to prescribe me something for heartburn. I had horrible heartburn with Theo (and he was born with a full head of hair, proving the old wives tale true for me at least), and popped Tums like they were candy. The Tums helped, but not enough. I started getting heartburn around 13 weeks this time, and finally had enough and asked for something stronger than Tums. This may seem like nothing major, but it is a huge step for me. I hate taking medications in general, but that increased even more after Theo died.

We had our fetal echocardiogram this week and it went well. It took forever though because Steam Bun is officially the most stubborn baby in the world. He was in a bad position for a lot of the scan (like every other scan), and I ended up being there for sooo long.

I’m not done with the scans though: at 30 weeks I will have a second anatomy scan, and our perinatologist will make a decision at that point if we need a fetal MRI or not. Our doctor warned us that he’s going to recommend NOT doing an MRI unless he sees something very wrong on the 30 week scan. Lungs cannot be seen on an ultrasound, hence the possibility of an MRI. But fetal MRIs to check lung development is still new enough, and our doctor has seen cases where doctors overanalyze the MRI and make a recommendation that ends up hurting the mom and baby more than necessary. I get his reasoning, and a large part of me agrees with him. Kenny and I went into the pregnancy knowing *if* Steam Bun has the same genetic condition, there’s nothing we can do. But we both started the pregnancy wanting to know as much as possible, so we can make certain arrangements in advance if necessary. Though now, the farther along I get, the more we’re both changing our minds. We haven’t swung completely to the other side, but we’re on the fence now. We’ll probably be relieved (for multiple reasons) if the doctor recommends skipping the MRI.

We are also past the point of viability. I was not expecting to be relieved by this, but I did breathe a small sigh of relief once we made it to that point. Not because this means it is more likely that Steam Bun will live, but because if I were to go into preterm labor that cannot be stopped (knock on wood), the doctors will perform life-saving measures if Steam Bun were to be born now. That made me feel better: knowing everything will be done now to save Steam Bun’s life.

But… now I have to keep track of my “kick counts”. And I am stressing so much at how much he is and isn’t moving. But more than that, I am worrying that I won’t recognize when he stops moving. I’m getting used to his kicks–I feel them, but they’ve become second nature if that makes sense. And I only seem to notice when he is NOT kicking, as opposed to when he is. The app that was recommended to me is certainly helping, and I like using it. I don’t let myself use it everyday though, because I can see myself get a little obsessive about it. So my plan (for now, may or may not change) is to use the app about 3-4 times a week, logging as many kicks as possible. The other 3-4 days I plan on doing “hourly check-ins”: every hour make sure I feel some movement, maybe logging kicks to compare to a different day’s kicks. Ugh. I am stressing so much about these kick counts. I wish I could just enjoy the kicks, and not worry about when he is and isn’t kicking.

I’m debating if I should do one of those 3D/4D ultrasounds. I googled to see how many are in my area, and there is a highly rated one a few miles away from our house. And because we live in the age of Google, alllllll of my ads immediately became ads for these ultrasound places. I just love seeing these ultrasounds whenever I go online. </sarcasm> I wrote down the info of the place not far from me, in case I decide to do this. I didn’t get one for Theo, and that’s why I’m so hesitant to do this for Steam Bun. I wish I did one for Theo, just to have more pictures. And if anything should happen to Steam Bun, I will probably regret not doing this. But… Theo was an accident and Steam Bun wasn’t. And I have a lot of guilt over how I initially reacted to finding out I was pregnant with Theo. I constantly wonder if he would have lived if I had a different reaction, or worry I didn’t love him enough. And so, I feel like I need to do the same things for Steam Bun that I did for Theo: to show that I love them the same. It’s crazy I know, but it is what it is.

I had a long cry the other night with Kenny. It kills me to see women embracing their pregnancies and being so happy about them. I want that SO bad. I want that joy. But I can’t have it. It’s just not that easy, though I wish it was. I can’t just make myself that carefree and happy about pregnancy, no matter how much I wish I could. Sometimes I wonder if Theo’s condition had been diagnosed before he was born, would that make this pregnancy easier? Would it be easier for me to accept this pregnancy is going well and accept good news from the doctors, if I hadn’t heard the same for Theo? I doubt it, but I still wonder.

We have a lot of people asking us about baby showers. And I have no idea how I feel about that. One friend suggested we just do a casual BBQ thing instead of a shower, just to celebrate Steam Bun so far. I like that idea more than any other idea. Emotions are complicated. Lol.

And finally, I’ve been planning Steam Bun’s nursery, which both kills me and is fun. And I feel guilty that I find it fun. We’re going with gray and navy, and owls/woodland theme. The nursery stuff we bought at IKEA a few weeks ago is still sitting in my car trunk, I can’t bring them inside yet. I don’t think I’m going to buy anything else for Steam Bun until after Theo’s party in February. Come March 1st, I’ll buy everything at once to give myself enough time to slowly work on the nursery before Steam Bun’s birth.


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Economic impact of grief

Earlier this week someone in one of my online groups posted this really interesting article on the economic impact of grief.

The article rang true for many of us. I know my work productivity has been impacted, I am much less productive at work than I was before. It’s hard to get through work. I wish I had taken more time off after Theo was born, I took my 2 months of paid STD and that was it. I thought going back as soon as I could would be good for me, but while it helped in the short-term, I don’t think it helped in the long-term. Several women also regretted going back to work too soon, but were forced to because of medical and funeral bills. I also regret going back to full-time work right away, but I didn’t have the option of starting part-time and easing my way in because I needed to keep my health insurance, as all of the extensive genetic testing was billed to my insurance.

Kenny had a different reaction: he threw himself into work after Theo died, because he felt so helpless and work was the only thing he could “fix” or make any progress on. Kenny agreed in the beginning he wasn’t as productive at work as he used to be, but says he’s slowly returned to his pre-Theo levels of productivity.

There was one point in the article which I really liked, and felt like a small victory:

The effects do not depend on the age or birth order of the child or on family size.

As I’m sure many, many parents who have experienced stillbirth or infant loss will tell you, I’ve experienced people telling me to “get over it” quickly because Theo was “just a baby”, implying that my grief and pain aren’t valid because Theo wasn’t alive long enough. I’ve also heard from my friends who have living children, that people will say they shouldn’t be grieving as much because “at least you have your other son(s)/daughter(s)”. I have to admit, I love that this study supports what all loss parents know to be true: it does not matter if you have living children, have no living children, if your child never took a breathe, lived for 30 years, etc. the death of your child is always the worst thing you can experience.

Anyway, I’m a numbers person so stuff like this I always find fascinating. I’m curious what additional research will show on the impact of child loss.


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1/24/16

On this day last year, we buried our son.

We took so long to have a funeral, because we just couldn’t cope with having to plan one.

It was just Kenny, myself, and our pastor.

In November, I received a letter from the funeral home that asked if I wanted to have an ornament made for Theo and participate in a candlelight service. I said yes, but I completely forgot about the service. I felt so bad, but since I had turned in the postcard saying I wanted an ornament past the deadline, I assumed I wouldn’t have gotten an ornament anyway.

The ornament from the funeral home arrived today.

 


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Nope, just nope

Yesterday I bought a few things for Theo’s party. I had some fun shopping, it was bittersweet like all things are now. That’s just my go to word for life now. We are having a raffle, and I was able to get most of the supplies for the raffle baskets. There’s still a few things I need to get, but they’re mostly done. Yay!

Then we had dinner at a friend’s house. We talked a little about this pregnancy, but fortunately not too much. At one point the friend told us about his sister’s pregnancy, and said some things that immediately had me concerned she may have preeclempsia. I wasn’t sure how to broach that with him, I didn’t want to panic him unnecessarily or stick my nose into something that isn’t my business (or, you know, pretend to be a doctor when I’m obviously not). But I also would not be able to sleep at night if I didn’t say something. So I asked if he knew if she had addressed these issues with her doctor, and his answer was reassuring. She has, and they’re monitoring her. He also took my question very well, thankfully.

Today our church had a guest speaker do the sermon. I was pleasantly surprised by the sermon. I admit I was a little weary because this person is known for being a super optimistic and sunshine-y person, and well, I am not handling that kind of person well right now. But the entire sermon was just on how important it is to be kind and show people love and compassion.

The speaker told a story about a friend of his, who lost his 2-year old son. Apparently some lady came up to the friend and said “I know exactly how you feel, my dog just died.”. The friend responded with “What was your dog’s name?”.

I was pretty shocked, that friend is a far bigger person than I. Should anyone compare Theo’s death to the death of their pet, I would lose it. I would probably break down crying and run away at best, say something bitchy at worst. Most likely, I don’t think I would say anything in that moment, I would just be so shocked that someone actually compared the death of my child to the death of their pet. Not knocking how it is hard to say goodbye to your pet, but to say it is “exactly” like the death of a child is just ridiculous. Apples and oranges.


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Purging

Christmas weekend I started “KonMari’ing”  the house. If you aren’t familiar with Marie Kondo, she wrote “The Life Changing Magic of Tidying-Up”. Her method of decluttering is pretty simple: go category by category and only keep what “sparks joy”.

I got a good start by getting rid of 3 bags of clothes and accessories (which included some of Kenny’s clothes) that weekend. The decluttering has come and gone in waves since then. Not long ago I did the pantry and tossed a bunch of expired food, and this week I did the rest of the kitchen. While going through all of my kitchen stuff (I have a lot), I found some baby related things: the Kiinde BreastFeeding Starter Kit, Kiinde Foodii Start Kit, Baby Bullet, and some sippy cups. These were all shoved in a cabinet we don’t use.

I almost closed the cabinet and moved on, but I decided to organize it. I moved some of the Kiinde Breastfeeding kit to our bedroom, where I will hypothetically be nursing or pumping most of the time. This kit comes with a rack to store breastmilk in the freezer, so I moved that to the freezer. Doing that required me to make room for where the hypothetical breastmilk will be stored in the freezer, so I moved a bunch of food around.

Now I’m realizing I kind of got ahead of myself, making room in the freezer for breastmilk is assuming a lot and a little over the top considering I’m not in the third tri yet. Even for a non-loss mom, that’s over preparing. Lol. There’s no guarantee I’ll be able to breastfeed/pump (I have no issue with using formula–whatever keeps the kid alive!).

Decluttering has felt great though. I think it’s more about control than nesting. Decluttering and organizing the house gives me some sense of much needed control in an otherwise very chaotic period of my life. I’m slowly learning there is very little in life I have complete control over, and trusting God with everything has been tough. But clutter is one of the few things that is completely in my control, and there’s been a surprising peace that has come from ditching things. Maybe it’s because those were possessions from our B.T. (before Theo) life and it feels good to shed that life a little. And I’ve noticed that the more cluttered and disorganized the house is, the more anxiety I feel.

 

I told Kenny last night I love “our bubble”. I like the little world we’ve built, it’s the outside world I don’t like. I’m finding myself more and more content by myself or just with Kenny. I’m not withdrawing myself from people, but I appreciate the moments by ourselves more than ever.


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Struggles

The past couple of months have been really hard.

I feel like they have been harder than any other point in this journey so far. We are now just over 13 months from his birth and death. I still can’t believe it. Time moved so slowly at first, but has been moving so fast lately.

So much of my day I struggle to stay on task, to do what I have to do. I’m so scared for Steam Bun, for facing another potential loss. And that fear gets stronger the farther along I get. I’m scared what impact grief will have on parenting a living child or that we will screw up Steam Bun somehow.

I feel like I have been constantly defending how I feel and my reality. My reality is that so far 100% of my pregnancies end in death. If Steam Bun lives, my reality will be 50% of my pregnancies end in death. Pregnancy is not easy for me anymore, and I hate that what should be so joyous can no longer be. I can’t “just” separate this pregnancy from my first. I’m jealous of those who have never experienced a loss, who are able to enjoy pregnancy. My body has failed me in the biggest way it could, and I trust machines more than I trust my body.

I’m exhausted, angry, and I feel so alone. I feel like I can’t participate in my old normal life or in the world in general, because I’m not as optimistic and happy as others want me to be. Not every moment is this hard, but I feel like admitting I have struggles means I’m failing and I need to be fixed.

At work the other day someone told me I am “so weird about this pregnancy”. Earlier this week I was asked how my holidays were and when I answered truthfully (they were awful), one of the responses I got was “but your cell phone case is so cute!”. (In fairness, I got good, comforting responses from others. But that one cut like a knife and hurt so much.)

None of this is fair. I don’t want to have to put in this work, to be dealing with this struggle. I’ve been changed permanently, and I’m figuring out this new person.

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Fundraiser Update

So far we have reached almost 10% of our goal! I’m so excited for this, the money we raise will truly make a difference in the lives of the children hospitalized at UCSF and their families. If you are interested, here is the link. (Note: none of the money raised is going to the party, everything we fundraise goes directly to UCSF Benioff Children’s Hospital through CrowdRise. It does not come into our pockets at all.)

I’m so grateful for everyone’s generosity so far, I was so not expecting to reach this point so quickly!

I think I’m more happy though that so far I’ve received a few emails from parents who want their child honored at our party. I’m so honored they are sharing their babies with me. We will have a slideshow playing at the party that will show off all of our babies and tell their stories. If you are interested, please email tpldigidesigns@gmail.com (this is my email) the following: your name, your child’s name, a picture, your child’s birthdate and date of passing, and your child’s story.

Kenny and I also settled on a theme for the party. The party’s theme is board games, so we will have game stations set up around the room for people to play. We’ll also have a raffle and hot chocolate bar, along with a catered dinner. We’re so excited to be having a belated birthday party for Theo, and the chance to celebrate him with friends and family. Though part of me wishes this was happening closer to Theo’s actual birthday, I know that I was simply not up for it in December but still wanted to have a party for him at some point.


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Not-so-normal normal things

 

We are having a bad storm right now, expected to last another week. We are getting a crapload of (desperately needed) rain and very strong winds. As Kenny and I prepared for the storm, I thought about how there are things that are now normal in our lives that aren’t normal for most people.

Last year Kenny and I got our first safety deposit box. Not because we decided we no longer wanted to keep important documents at home, but to keep safe the only photos we will ever have of Theo. Even though I have the photos backed up on an external hard drive in addition to on my computer, I put them on a flash drive to keep at the bank as well. We also got 2 moldings of one of Theo’s feet (for a total of 3, instead of 2) and we are keeping the “extra” in the bank. If there’s ever a fire or our house is broken into, I want to know the only images and moldings of Theo I will ever get are safe.

Then there’s Theo’s grave. Never before Theo died did I know people went all out to decorate graves. I’d seen graves with little American flags and flowers, but that was about it. At his funeral I looked at the graves of the other children and noticed all of the decorations and toys. We visit his grave every few months, and each time we notice the decorations for the children’s graves have changed for the season. We don’t have a lot of decorations on Theo’s grave (a couple pinwheels), but before the storm hit we went to his grave to take them down. I didn’t want them to get damaged or blown away in the storm. And I noticed that the other parents had the same idea as me: most of the children’s graves no longer had the decorations and toys they used to. I expect most of these will be put right back once the storm passes.

And then there’s Theo’s tree. We actually didn’t do anything to prepare his tree for the storm, and I am worried his tree won’t make it. The winds have knocked around our patio furniture and took out a good-sized tree in our neighborhood, so it’s entirely possible for Theo’s tree to get knocked down. And it’s just so ridiculous and unfair and rage-inducing that I have to worry about the safety of a fucking tree instead of worrying about Theo being scared of the storm. Or worrying about Theo staying warm and dry, and debating with Kenny if we consider it safe enough to drive with Theo in the car. And I’m wondering how you prepare trees for storms anyway, should we have put sandbags at the base of his tree? Once the rain lets up we’ll take a visit to his tree and make sure it’s ok.

I hope you are staying safe if you are in an area getting hit with a storm.


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We found out

**Trigger warning**

We found out several weeks ago that Steam Bun is a boy.

Finding out wasn’t nearly as exciting the first time. We both reacted like someone had told us our shoelaces were untied.

As the weeks have gone on, we’ve gotten a little excited about having another boy. Knowing Steam Bun is a boy has certainly helped us get more attached to him and personify him. We even discussed names too. We started talking about everything we would do with him. We waited until we had some time to adjust to having another boy before slowly telling people the news.

Knowing Steam Bun is a boy is a double-edged sword (but really, what isn’t in life after loss??). Though there is nothing about Theo’s genetic condition that led our doctors to believe it would only affect boys, there was a small part of me that thought if Steam Bun was a girl, she couldn’t have Theo’s genetic condition. That false hope gave me a sense of peace and slightly calmed my anxiety early in the pregnancy.

Now that we know Steam Bun is a boy and we are getting attached, it’s scary. We were both very detached from the pregnancy in the beginning, as a coping mechanism for our fear (and are still somewhat detached honestly). Though our brains knew that being detached wouldn’t make another child of ours dying hurt less, our hearts weren’t there yet. So finding out Steam Bun is a boy turned it from a “theoretical pregnancy” to a “holy shit, there’s a real live baby inside me right now”. Which was, and still is, terrifying.

There’s also a huge worry of how much Steam Bun will look like Theo. If they look too similar, how hard will that be on us? How will we feel if they don’t look enough alike? Will we confuse Theo with Steam Bun, and treat Steam Bun like he is the child who died? And with them being so close in age, we fear people will think Steam Bun is a replacement for Theo, and forget all about Theo. I’m not going to lie, sometimes I think this last part is already happening, though it’s hard to say if that’s what is really going on or if I’m just overly sensitive to this because Theo isn’t here. This was the biggest reason I put off telling people we are having another boy–I don’t want them to think of Steam Bun as a replacement.

We booked our maternity photos this week. We are using the same photographer who did our photos with Theo. I’m nervous about the photoshoot. I know I’ll regret not doing the photos, but it’s still scary. Like we are jinxing ourselves. I thought about going with another photographer just to change it up, but then the new photographer would ask all of these questions that I didn’t want to answer. So I went with the original photographer, and when I emailed her I mentioned that Theo died. Her reaction was perfect–all she said was she was so sorry for our loss and she would keep this baby in her thoughts and prayers. Brief and sincere, without any meaningless platitude.

The weekend ended up being very baby filled too. We had an additional scan to get more images of Steam Bun’s heart, and then went to IKEA to get a couple of things for his nursery. These were also not as fun as they should’ve been. It was just so bittersweet, Theo should have been there with us helping us pick out things for Steam Bun. And in the back of our heads, we couldn’t help but think that there is a chance all of this is pointless and Steam will never use any of it, and then we have to once again begin the painful process of taking down the nursery. But not having a nursery for Steam Bun would also be difficult for me, I would feel so guilty that I didn’t do for Steam Bun what I did for Theo.

(Because I’m having a dumb moment, I published this post and then accidentally deleted it, so here it is again. Lol.)