Holding Our Angel

Loving After Loss


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Breathing

Sometimes, just breathing is an accomplishment.

Officially diagnosed with PPD (who’s surprised? Bueller?) and I’m on medications. It will take a few weeks for the meds to take full effect. Kenny is very relieved I’m finally on meds, I think he was starting to feel a little helpless in dealing with my emotions. Can’t say I blame him too much for that, my emotions have been rather intense lately.

Artie wouldn’t take a bottle the last time we tried, so I’m still exclusively breastfeeding. We’re trying a bottle again next week. I think he’ll take it, as I finally got him to accept a pacifier earlier this week (I think it was this week, I have a terrible sense of time right now). I’m really looking forward to Artie using a bottle. I’ll no longer feel trapped at home, like I can’t go too far away in case Artie gets hungry. I do bring him out with me sometimes, but there’s not a lot of places that have convenient nursing areas. The mall and baby stores are just about it. Which really surprised me, considering this is California. 

Artie has been having some reflux. Mostly I feel awful that my baby is in pain and he can’t sleep, though sometimes I feel frustrated at him when we have difficulty putting him to bed. And then the guilt sets in, because I know how much worse it can be and I feel like I should just be grateful he’s alive (which I am!). And then my anxiety kicks in, as I start to imagine Artie dying. Imagine isn’t really the right word though, it’s more like I’m forced to watch a movie of him dying. I can see it happening before me, and I’m helpless to do anything.

A couple of weeks ago, Artie began smiling at us–and not just when he poops. He has such a beautiful smile, I love it. He smiles the most in the mornings, when he gets up for the day. But, like everything else, soon I start to think about how I never got that with Theo. I bet he would have a beautiful smile too, but I can’t say for sure and that kills me.

I think this is what I feel most guilty about–these thoughts of what I’m missing with Theo after everything Artie does. I don’t want to be constantly comparing my kids, and I really don’t want Artie to feel like he’s living in Theo’s shadow. Or that he has to “fix” our grief or be responsible for our happiness. But how can I make sure he doesn’t feel any of that when I’m constantly comparing them?

I found something I think I would like to do with Theo’s clothes. I’m thinking of having a quilt made out of them. I’ve been searching Pinterest for ideas, and I’ve found a few patterns I like. I am so not crafty though–and especially not good at sewing. I think I’m going to see if someone local would be willing to make the quilt for me (for pay of course). I do have some time to find someone-Artie won’t outgrown Theo’s clothes for a few more months at least. Though I’m still unsure how I feel about Artie wearing Theo’s clothes, I at least want that option, hence why I want to wait. 

Artie and I are now officially on Kenny’s insurance (my insurance used to be through my job but it’s considerably cheaper to have the three of us on Kenny’s than to keep us separated now), and Artie saw his new pediatrician today. I was filling out the new patient forms and they asked about siblings. So I wrote Theo’s name and then deceased in paraenthesis right next to it. Though I obviously write that Theo is dead here many times, writing it out in the “real world” was different. I wanted to scratch it out, or more like stab the paper with my pen. I was bracing myself for this part of the form and it was still sucky. 

I’m not sure if I like this pediatrician though. She was very friendly and seems very smart, but I felt rushed through our appointment. Maybe I just got used to getting extra time and attention during my pregnancy, and need to get used to a doctor who is treating us as normal. I don’t know. I wish kenny had been able to come, so I could bounce my impressions off his.  Artie is getting his shots in a couple of weeks, so I’ll see how that appointment goes. 


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Not a clue

Many people, both loss and non-loss friends, have been asking me how the first few postpartum weeks are going.

I honestly have no idea how to answer my non-loss friends.

How can I explain to someone who has not lost their child the complete mind fuck that is postpartum and grief? I don’t even know where to begin, and I get overwhelmed just thinking about it. 

My non-loss friends who are asking me this are the ones who have walked with me this entire time and have listened without judgement, so when they see I’m struggling to answer, they ask if I want to talk about something else. And that’s what I need. 

I had lunch today with a loss mom, and it was like a huge weight was lifted talking to her. Just having someone who can say “yep, I get it” is more comforting than pretty much anything else right now. When I say that a sleeping baby looks like a dead baby, she knows exactly what I mean. 

When I say that I sometimes look at Artie and think that he’s not Theo, she gets it. 

There’s no need to explain what I mean, which is just what I need because I don’t have the capacity right now to explain what I mean. 

This postpartum period is just as rough as the one after Theo, just in an entirely different way. I feel like I’m back at ground zero, wondering what is going on and where to begin. 

Like another loss mom blogged about, I find that when I say I’m tired most assume it’s because I have a newborn. That may be part of it, but mostly I’m exhausted from trying to process and deal with everything, exhausted from walking this shitty path. 

I feel like I’ve been robbed of the joy of parenting. 


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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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Being Defined

I think it’s safe to say I define myself as a mom. And a large chunk of my identity is as a loss-mom.

But I don’t always want to be defined as a loss-mom.

I posted in a scrapbook group I’m a part of pictures of a few layouts I made for Theo’s baby book. Because he’s hooked up to life support in the photos, I briefly mentioned he died so I wouldn’t have to answer 100 times “Is he ok?”. There were a lot of comments commenting on the layouts themselves, and several commenting on how handsome Theo is. Normal comments that a parent of a child who did not die would have received.

And there were also a lot of comments stating how sorry they are for my loss, and unfortunately a few sharing their stories of lost children. The outpouring of love from complete strangers truly touched me.

But it bugs me how I can’t talk about Theo like a “normal” mom. I can’t make small-talk about Theo with non-loss parents without the sympathy looks. I can’t talk about Theo to strangers without the inevitable coming up: he died. And once that comes up…it all changes. I’m out of their club and into a different club no one wants to acknowledge (except those of us in it).

I ran into a former coworker today and she asked to see a picture of Theo. I happily showed her and she asked who he looked like more. We chatted like that for a couple of minutes. It felt so normal, like what a non-loss mom would get to talk about. It felt so good. And then she noticed that the picture was on instagram and that the caption said “Happy 3 months birthday!”.  She commented that it’s been longer than that, and I said yes. I was about to say I could find a more recent picture of Theo and then I realized.

I can’t.

I will never have more recent photos of Theo. I’ll only have my same stories to tell about Theo, the same facts to spout off. Only guesses at where he would be developmentally right now; I can’t tell non-loss parents that I think he would be crawling like crazy and chasing the cats now…because they’ll give me “those” looks.


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The Birth and Death

*Trigger warning*

Little by little, I’ve been working up the courage to write about Theo’s birth and death. What should have been one of the best days our of lives turned quickly in a nightmare. As I worked on Theo’s baby book today, I felt it was time to finish the story of his birth and death.

My due date was the day after Thanksgiving. I was so sure Theo would arrive early, like I felt it in my bones he would arrive early. Ha. My appointment that day showed I was nowhere close to him arriving. Was told this was typical for first babies, but I was really hoping my obsessive need to be early would have worn off on Theo. NST went fine.

So we waited. The following Friday I had another appointment and NST, all fine. Monday, December 7th at 10 am was my last appointment. I was 41.5 weeks. Doc said we were getting to the point where we would need to induce, and we agreed with we induce the next day. We wanted to give Kenny a chance to wrap up a few things at work before going on leave. My NST showed I was having contractions every 5 minutes, and they were lasting almost 1 minute each.

I was in labor! I couldn’t feel these contractions, and I naively thought that meant the contractions wouldn’t be so bad later (HAHAHAHAHAHAHA!!!). I was admitted to labor and delivery. Kenny ran home to change out of work clothes, and I told him if he missed the birth I would turn our son against him. He got back in time.

Hours after I was admitted, they decided I wasn’t progressing fast enough, and I needed some help. I remember walking around with the portable fetal monitor, and we saw a couple also walking around in the courtyard. She was Asian, he was white (the opposite of Kenny and I), she was short and he was tall. I remember thinking that our babies would probably be born on the same day and wondering if we would see them again.

The portable fetal monitor wasn’t cooperating and they decided they weren’t going to let me walk around anymore. I was disappointed, but agreed to it. What mattered was a healthy baby. Over the next day they did a lot to try to progress my labor. I wasn’t progressing as quick as they wanted, and they were worried about the quality of the placenta. I got an analgesic for the pain, and Theo’s heart rate started to decelerate during contractions. They thought it might have been the pain-killer, so they said once that wore off I wasn’t allowed another one, for fear of how Theo was reacting to it.

It wore off and very quickly I learned how painful contractions are and I got an epidural. Theo’s heart rate stabilized for a bit, but around 1 pm it started decelerating again. They couldn’t get it to stabilize again, and at 2:30 the doctor said enough was enough, and had me sign the paperwork for a c-section.

I was in labor for about 28 hours. We got two hours of sleep during that time.

As I was being wheeled to the OR, the doctor and I were joking about how stubborn Theo was being. We were making fun of Kenny, she commented that he looked like a stubborn man and I confirmed. The whole trip to the OR (which now feels like a lifetime but was probably less than 20 seconds) we joked how much Theo was like his dad already.

Kenny entered the OR and they started testing my epidural. I told Kenny I was getting a little freaked out and needed him to tell me how much he loved me. He did. A nurse commented that they appreciated how hard we were working to stay calm, that calm patients made it easier for them.

Theo was pulled out and I immediately felt a rush of emotions. I knew he was out even before they told me and the room was silent. All I could focus on was the silence.

They started doing everything they could to get him breathing, but he wasn’t on his own. I asked over and over if he was ok, and they kept saying he would be ok. I could see the doctor working on him out of the corner of my left eye. I kept asking, and the next thing I knew I was waking up to recovery. They had knocked me out completely, because I was starting to panic.

Theo was born at 3:10 pm on Tuesday, December 8th. He weighed 7 lbs 3 oz.

Kenny was sitting in recovery when I arrived, and he was so somber. He didn’t look like a man who just had a baby. He told me Theo had been taken to the NICU and there was talk of transferring him to a hospital in San Francisco (we are about 2 hours away from SF). Kenny said there was something wrong with his lungs.

The nurse who was with us during recovery was so sweet. She kept us talking, and did a great job at balancing hope and realistic expectations. She didn’t know what was wrong with Theo, at that time no one did, but she knew enough to know the best case scenario was a long hospital fight ahead of us.

I don’t remember how long, but soon the doctor who did the c-section came up and told us Theo didn’t have two lungs, that he couldn’t breathe on his own. I asked her if if was possible for him to grow lungs at this point and she said no. She then moved Heaven and Earth to get Kenny and I in the NICU. We sat in the NICU until 3:30 am on Wednesday, when Theo was transported via ambulance to SF.

I couldn’t go in the ambulance with him because of the c-section. And we weren’t up for driving to SF right away. It was 3:30 am on Wednesday and we had been up since Monday morning (save 2 hours of sleep).

We slept for 2 more hours and at 5:30 we got a call from SF that Theo had arrived. The doctor said he had arrived safely, but all that really meant was the ambulance didn’t crash on the way to the hospital.

At 6:30 am we got another call we needed to get to SF ASAP, that Theo had hours to live. Kenny asked that Theo be put on an ECMO, and soon we got a call that Theo was stabilizing and they could run more tests. They still urged us to get there ASAP.

I discharged myself AMA around noon and we took my car to our house so we could pack for SF. We packed a couple changes of clothes for Theo, but didn’t think to grab anything else. We packed several days worth of clothes for us. I think we both still thought that we were facing a long hospital stay, not saying goodbye.

We arrived in SF around 4 pm. We spent about 5 minutes with Theo when the doctors said they needed to talk to us. And there we got the crushing news. Theo wouldn’t survive, and there was nothing modern medicine could do for him. He was suffering on the ECMO, and out of interest for him, we needed to say goodbye sooner than later.

We spent the next few hours with him. Took pictures, held him, got molds of his hands and feet. My dad washed his hair.

The head of cardiology talked with us a bit. He told us that if this was his child, he would be making the same decision we were. The he respected us and could tell how much we love Theo, and assured us we were doing the best for our son. His words meant everything in those moments.

We said goodbye at 8:30 pm and he was removed from life support. We never saw Theo when he wasn’t hooked up to machines, we never got the chance to hold him without medical equipment attached to him. That’s my second biggest regret, that we never got those moments without all of the medical junk around.

We drove back home after saying goodbye on Wednesday. Friday my dad took Kenny and I out to lunch and to pick up Kenny’s car. See, we had driven separately to my appointment on Monday morning because Kenny was coming from work. My car was at home, but Kenny’s was still at the hospital when we left for SF. As we were pulling into the parking lot, I saw the couple I had first seen when I was still in labor. The white man, Asian woman. They were carrying their baby to their car.


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Second Trimester

In like a lion, out like a lamb could describe the second trimester.

It was the best one of the pregnancy for me. The nausea had disappeared by week 15, and I was starting to develop an adorable baby bump. I didn’t really start to show until I was 24 weeks because Theo liked to sit closer to my back than my stomach.

I felt good physically, and much better about the pregnancy. Once I felt him kick, I was all in. Him stirring inside made me realize this was a baby, and he was my baby. I began to love him, and I would talk with him. When my belly was bigger, my husband would talk to the baby as well.

I was still nervous about becoming a mom, and began to worry I wouldn’t be able to protect him from the world. I was fearful that he would be taken away from me. But I also imagined all the fun things we would do–the places we would take him, the pictures we would take. We love to travel and the idea of exposing him to different countries and cultures was so much fun. We would talk about where we wanted to take him first. We began to focus on the future adventures.

We went to Vancouver, Canada, and Seattle, Washington, when I was around 30 weeks. We had originally planned a cruise to Alaska, but cruise lines won’t let you cruise past 24 weeks pregnant (surprise!). So we changed our plans and spent the week in Vancouver and a few days in Seattle instead. We had a ton of fun. Every where we went we told him what we were doing. Everyone talked about the baby everywhere we went, and I was soaking it in. The attention was awesome, I’m not going to lie.

I was still pretty active during the second trimester. I walked a few miles every day, and I did yoga and weight lifting when I could. Toward the end of the second trimester, I stopped doing yoga and weight lifting but I felt good physically. My only complain was I developed horrible heart burn. It would wake me up at night.

Mostly the second trimester was uneventful. It was peaceful and fun.