When There Are No Words

As Mother’s Day approaches, I am both happy and sad. I am happy that this year I have Oliver, my son, in my life. He is healthy, happy, adorable, he is the light of my life. I am sad because as joyous as my life is right now there are still two very large, vacant holes in my heart. Stella and Joy were my first born. They gave me the title of mother. They are the reason I became a mother. But they are so often forgotten.

Without meaning to, people have already forgotten about them. People have talked about Oliver being the first. The first child. The first grandchild. The first great grandchild. I’ve been called a first time mom by people who mean well, but it still hurts. I may be a new mom, but I am not a first time mom.

My introduction into motherhood may not have been traditional, but that doesn’t mean it doesn’t count. I still gave birth. I still cared for my daughters. I still held and cuddled my daughters. I still tried to protect my daughters. My daughters will forever be apart of my story, my life, my family. I will forever love my daughters and I will forever be their mother.

Yesterday was Bereaved Mother’s Day. Once again, a holiday I never wanted to celebrate of even know about it, but I do. It may seem counterintuitive to want my motherhood to be recognized, but also acknowledge a holiday specific for mothers like me, but there is something about this community, the community of bereaved mothers. No one can understand unless they are a part of it. Until you have given birth to a child and then had to give them back, you just can’t possibly understand what that is like.

This coming Sunday, is the real Mother’s Day. For the first time, I will have a child in my arms on this holiday. Zach, Oliver, and I are going to go out for brunch. It will be our first time taking Oliver to a restaurant. Well meaning people will see me with an infant and no other children and assume this is my first Mother’s Day. I don’t know if I will correct them. I am often torn between making sure I acknowledge my daughters and trying not to make anyone uncomfortable or sad, including myself. Either way, I am uncomfortable and sad.

Those of you reading this know me, or at least know my story. You know of Stella and Joy. You may have even met and/or held them. Please, don’t wish me a happy first Mother’s Day. You will not make me sad if you talk about or mention Stella and Joy. In fact, it will make me happy to know you remember them. You will not upset me if you speak their names. Your aren’t reminding me of something bad or sad, because I will never forget. You are honoring them by saying their names, by remembering them.

I am so happy and excited to celebrate this Mother’s Day with Oliver. To hold a baby in my arms and have my motherhood be visible to all. To be able to show everyone just how good of a mother I am. But please remember, this is my second first Mother’s Day.

Pregnancy after loss is one big crazy emotional roller coaster. A roller coaster that you think will pull into the station when you deliver the baby. Instead, it jumps the track once you leave the hospital and goes rogue. There is no manual. No instructions. No guide. The fears and anxiety and trepidation only grow once you get home. What’s that sound? Is his breathing normal? Why is he making that face? Is he sleeping too much? Is he eating enough? The racing thoughts just keep going. It’s hard, it’s scary, it’s intense.

It’s normal.

That was one of the hardest things to learn. Everything I was feeling, thinking, and worrying about was normal for all parents. Was it magnified? Absolutely! But knowing I wasn’t completely crazy did help.

About 3 weeks after Ollie was born it all hit me, and boy did it hit hard. I had survived an anxiety filled pregnancy, a traumatic delivery, a week in the NICU, and a week at home. Then Zach went back to work and I felt like the world was closing in around me. All of a sudden, I was on my own. Now, I wasn’t really on my own. My parents came over every day. Zach came home each night that week. But it was still hard. Harder than I thought I would be.

One night, I lost it. Zach got home from work around 10. I was sleep deprived, covered in breastmilk, and Ollie was crying (which he doesn’t do very often, we are very lucky). Zach could tell something was wrong and tried to get it out of me. I felt paralyzed. I couldn’t form the words. I knew once I said them out loud, I couldn’t take them back. Finally I said it. You know how people say, “god only gives you what you can handle?” What if Stella and Joy died because I couldn’t handle it? I do not consider myself a religious person and I have never believed in the whole only getting what you can handle thing, but in that moment, I really questioned myself.

This is the part where I brag. I brag about my amazing, supportive, loving husband. He held my hand, put his arm around me, and with glassy eyes told me that he had thought the same thing. He held me and told me how good of a mom I was, to both our daughters and our son. He told me to go bed and did the late night feedings so I could get some sleep. He washed bottles and straightened up the house. He was the best partner I could ever ask for. He IS the best partner I could ask for.

They say it takes a village to raise a child. I say it takes multiple villages. For me, I have multiple villages of moms. I have a village of moms that are my parents age or older. Ones who’s children are now adults and having children of their own. I have a village of moms that are parents of school of age kids. Ones who are just starting to let go of the reigns a bit. I have a village of moms who have also lost a child/children. Ones I may not have met in person, but who’s advice and opinions I value beyond measure. I have a village of brand new moms. Ones who have just had a baby within in the last year and are going through what I am at the same time.

My villages are full of fierce women. Women from all walks of life. Warriors who have lost babies, young children, even adult children. Warriors who adopted their children. Warriors who needed fertility treatment. Warriors whose children had tumors and illnesses and beat the odds. I am proud to be among the ranks of those warriors.

What I’ve learned most, is that talking to my fellow warriors is the best medicine. When I was struggling with baby blues, I found out I wasn’t alone. When I was struggling with pumping and nursing, I found out I wasn’t alone. When I was struggling with the decision to supplement with formula, I found out I wasn’t alone. I wasn’t alone. Being on maternity leave, home with a sleeping baby and my thoughts, started feeling like I was alone. It was such a relief to know I wasn’t.

Once I realized that, my perspective changed. Things aren’t easier. I am still caring for a newborn, some nights by myself, and that in itself is challenging. But my mindset changed. I’ve stopped pumping and started formula feeding and I’m not beating myself up over it. I’m still feeding my baby. I stopped worrying about taking Oliver out of the house. I still don’t like when most people hold or even touch him, but I’m still taking him out. I stopped waking my baby up every two hours to feed him and let him decide when he was hungry. He’s still growing. I refuse to beat myself up for doing what I think is best for my child.

Being a parent is hard. It’s hard, it’s messy, it’s tiring. But there is no greater feeling than holding your child in your arms, feeling him breathe, and watching him sleep. Being a parent after losing children is even harder. When I look at him sleeping he looks just like his sisters did, only they never woke up. I stare at him peacefully for a moment, and then snap into a panic, wondering if he is alive.

I don’t expect it to get easier. But I’m okay with that. I have my villages and warriors to get me through it.

I have written and changed and deleted this post several times already. There is just too much to include in one, so I’m going to do it in three parts; the delivery, the NICU, and life at home. I can tell you now, it’s not the storybook experience I had hoped for, but I think it’s important to share and continue to help people understand the journey that is stillbirth, child loss, pregnancy after loss, and raising a rainbow baby.

Two weeks before my scheduled c-section, I woke up feeling very uncomfortable. I got out of bed, went downstairs to let Zach sleep some more, and tried to get more comfortable on the couch. I was having a lot of lower back pain and Braxton Hicks contractions. As I sat on the couch watching tv, I started to think, “Holy shit, I may actually be going into labor!” So I did what any responsible adult would do, I text my group chat, all moms, and asked them if what I was feeling was in fact contractions. We decided it was so I started to time them and then called the doctor who sent me to triage.

Once at the hospital, I was hooked up to the monitors where we saw I was in fact having real contractions, but I wasn’t dilating and there was no labor progression. Just in case Oliver decided to make an early arrival, the doctors gave me a course of betamethasone shots to help his lungs develop a little more. They kept me over night, Oliver did great on all the monitors, showing perfect readings the whole time we were there, and my contractions stopped completely.

When the doctors sent us home the next morning, the fear was indescribable. Last time I was sent home from the hospital this close to delivery, the next time I went to an appointment, I learned that Stella and Joy no longer had heartbeats. It was terrifying to put my faith in the doctors and monitors, and trusting that everything would be ok. The next two weeks, I stayed home, doing as little as possible, trying to make sure Oliver stayed in and safe until his scheduled arrival. I was hyper aware of every movement, or lack there of, and could focus on nothing else.

Those two weeks passed and suddenly it was Sunday night and Zach and I were laying in bed preparing for Monday morning and the birth of our son. I got a whole 2.5 hours of sleep and was already awake when the alarm went off at 5:30 am. The time had come. We grabbed our bags and headed over to the hospital, filled with both fear and excitement. Oliver’s birthday was finally here.

Once I got to the hospital, they brought me back to triage, and all of the prep work began. We were the first scheduled c-section of the day, 7:30 am, and the nurses said they were running on time. After I changed into the gown, two nurses came in and hooked me and Oliver up to all of the monitors. To say I was anxious would be a gross understatement. To put it in perspective, the heart rate monitor alarm kept going off because mine was as high as Oliver’s (around 140 at its peak). We explained our history to the nurses, who were incredibly kind and caring, and they decided to take that monitor off. They realized it wasn’t going to lower until I knew my boy was out and alive.

I cried a few times while in triage. Mostly out of nowhere, just randomly, and because of my nerves and anxiety. They have a clock facing the bed, so of course I just sat and stared, counting down until it was time to go to the OR. The doctors came in, check on me, signed my belly, and told me they were just waiting for the anesthesiologist to come down. That’s when things started to go downhill.

The anesthesiologist came in and let’s just say his bedside manner was lacking at best. There was something going on with medication not being where it needed to be, an internal problem, and he seemed to be taking it out on the nurses. None of this helped calm my nerves. He left, and the nurses prepped Zach and I for what was about to happen. They explained that Zach would not be allowed in the room right away, they talked about the anesthesia process, and what would happen with Oliver once he was born. Zach got dressed and we all walked over to the OR together.

At this point, it is important to mention that while I have had a c-section before, I really don’t remember much about it. By the time that surgery came, I had been given so many drugs to deal with the shock that my daughters were going to be delivered sleeping, that the entire thing is one big blur. I remember feeling like I couldn’t breathe at one point, and I remember crying and being scared, but other than that, my brain had done its best to forget the rest. The next thing I remember, Stella and Joy had already been changed and I was going to bed. There are things that I know happened, but I can’t recall the details.

Once I got to OR, I gave Zach a kiss, and left him in the scrub room while I continued on with the nurses. As we got into the room, the sounds, the cold, the feelings, the smells, all became so familiar. I started having flashbacks and remembering things from when I delivered Stella & Joy. At some point, all of the doctors and nurses introduced themselves and tried to make small talk. Everything was sort of blurry and I started shaking.

There was a wonderful nurse, I wish I could remember her name, who held my hand, asked me questions to try to keep my mind busy, and just talked to me like she had known me for years. The anesthesiologist came in and they again explained the process of getting the spinal. It was then that I really started to panic. Again, this nurse held my hand, rubbed my head and hair as a curled over so the spinal could be inserted. She tried so hard, but it all came back. The numbness running up my spine and down my back. The feeling of weights on my chest and not being able to breathe. The brightness of the overhead lights. The sounds of the monitors beeping and tracking. I started to cry. I started to panic. I didn’t think I could do it.

Zach still wasn’t in the room. I was crying and telling anyone who would listen that I couldn’t breathe. They all tried to reassure me that I was breathing, pointing to the monitors and showing me my oxygen level. I remembered the nurses doing the exact same thing when I delivered Stella and Joy. I asked repeatedly for Zach, begging them to let him in. It was then that the anesthesiologist basically threatened me, if I didn’t calm down, Zach would not be allowed in and they would put me under instead. I froze, and held in my tears and fear the best I could.

Finally, after what felt like hours, Zach was allowed in. Once again, the rest of the c-section is a blur. Zach says at one point I got very pale and my blood pressure dropped very low. He was scared, but I don’t remember. It felt like hours had gone by, but it had only been about 45 minutes. They said I would feel pressure, but I don’t remember feeling anything. Then the doctor said, “He’s here! Wow, he’s a big boy!” I remember asking if he was alive. I needed to hear those words. I didn’t want to know that he was there, I wanted to know that he was alive. And he was.

I cried, and continued to cry, as Zach went over with the nurses and Oliver and the doctors finished working on me. They brought him over and held him next to my head for a few minute and let me see him. At one point, someone came over and started telling me that Oliver was having trouble breathing. They said they were going to take him to the special care nursery for observation. I told Zach to go with him. I didn’t want to be alone, but I needed someone I trusted to be with Oliver. They left and the next thing I really remember, I was in the recovery room.

Once in recovery, I was finally able to drink some water. There was a nurse there, but it was much quieter and darker than the OR. I still was numb from about the chest down, and I hated that feeling. I want to adjust how I was laying and I couldn’t do it. I wanted to wiggle my toes and I couldn’t do it. I wanted to bend my knees and I couldn’t do it. I wanted to go see my baby, but I couldn’t do it.

Two nurses came in and had me hand express as much colostrum as I could. They were going to take it down to the special care nursery. I still didn’t know what was going on, and Zach was still down there. I cried some more. How is that I have had three kids, and not one was born normal?

I’m not sure who came in first, but Zach and a doctor from the NICU came to the recovery room and started to explain to me what was going on with Oliver. The doctor was really good about explaining what the possible scenarios were, best case and worst case, but it was all gibberish to me. All I knew was that I brought yet another child into the world that I could not hold, or bond with, or comfort, or save from danger. I really questioned my ability to be a good mother.

After an hour or so in the recovery room, I was wheeled down to the NICU where I was able to see and touch Oliver, but I still couldn’t hold him. Then I was brought to my postpartum room, on the other side of the hospital. Once again, the c-section was a bit of a blur. The delivery was traumatic for a whole other set of reasons this time. But it was only the first part of Oliver’s story.

Hi everyone! As we get closer to meeting Oliver, Zach and I have been putting some serious thought into how to keep him safe when he’s at his teeny tiniest.

As you know, Stella & Joy did not get to come home with us. This delivery, recovery, and journey we are about to embark on with Oliver will be very different. As much as we want to allow everyone to love and enjoy Oliver with us, we also want to protect him. We know, all too well, how many things can go wrong in the blink of an eye.

Oliver will be arriving a little early. Therefore, we will not know if he will need NICU time until he is here with us. We also want our first days with him to be focused on our family of three, plus two very special angels. These early moments will be emotional on so many levels, and we want the space to soak it all in. For these reasons, hospital visits will be kept to a bare minimum, and by invitation only. Please don’t take offense if you are not invited to the hospital, understand how much we have gone through to get here and how important these moments will be. We want everyone to meet and celebrate Oliver and would be happy to arrange said meetings once we are settled back at home.

When we do get home, we have some guidelines we need and expect to be followed for those who wish to meet our sweet boy:

-Please no unannounced visits. I will be recovering from a c-section and will want to be prepared for visitors. This applies to both family hospital visits and home visits. A quick text or email to Zach or me and we will do our best to set a time for you to come over.

-Please wash and sanitize hands before holding baby Oliver. We have plenty of soap and hot water.

-There will be no kissing our little one. This especially applies to his tiny face and hands. Kisses can be quite dangerous in his earliest weeks. We ask that both friends and family respect this. No matter how tempting and kissable his little cheeks may look, we must insist you refrain.

-Please make sure that your Tdap vaccine is updated. The Tdap is recommended every 10 years. If you have recently had a tetanus shot, you are most likely covered, but it wouldn’t hurt to double check. I will have already received one while pregnant, but Oliver is not fully protected until he is able to get his own vaccination. Tdap is a live vaccine, so please get it at least 2 weeks prior to meeting Oliver.

-This has been one of the worst flu seasons recorded. If you or your children are feeling sick, please wait until you are 100% before visiting. Even if you just have the sniffles. Oliver is too precious to be put at risk.

-We feel very strongly about keeping Oliver away from smoke smells. Third-hand smoke (lingering smoke in furniture, clothing and on skin/hair), is still very harmful to him. If you do smoke, please make sure you are free of smoke smell before visiting. This means clean skin and hair, and clean clothes. Any smoke smell will mean visiting with Oliver from a distance. As an early baby, we will be especially careful of his little lungs.

Please know that we have given a lot of thought to these guidelines, and they are all incredibly important to us. If you disagree with any of these, unfortunately that may mean you are unable to visit or hold Oliver. We could not be more thankful for all of the love and support we’ve been shown. I know everyone is excited to meet our little man and we appreciate the understanding with these guidelines to help ease our worries and fears.

Today I woke up to a message from a friend asking for advice. A family member’s baby was delivered stillborn this weekend, a month before her due date. Since Stella and Joy passed and I started this blog, this is the third time someone had reached out about a friend or family member experiencing stillbirth. What the hell is going on? How is it that it is 2018 and we live in the United States, not some third world or developing country, but we are still dealing with this everyday? Approximately 1 in 160 pregnancies end in stillbirth.

“Stillbirth might seem like a tragic relic from a bygone era, but it’s relatively common. About 24,000 stillbirths, defined by the Centers for Disease Control and Prevention as the death of a fetus at 20 weeks of pregnancy or later, occur every year in the United States.

Overall, stillbirth is 10 times more common than SIDS (Sudden Infant Death Syndrome).This is not the case in every country. The World Health Organization ranks the U.S. stillbirth rate 25th in the world, with 3 per 1,000 babies stillborn. Top-ranked Iceland’s rate is less than half that. And the United States has made some of the slowest progress of any country in reducing stillbirths.

Between 2000 and 2015, the U.S. rate declined by 0.4 percent per year, putting us at 155th out of 159 in the world. We were joined at the bottom by Chad and Niger.Unlike other countries, the United States has no national system to report and evaluate stillbirths, though the CDC says this is a crucial step in reducing them. About half of stillbirths are unexplained. Stillbirth experts say that the government’s failure to fund data collection and stillbirth evaluation is preventing progress. So too is the lack of insurance coverage for autopsies and genetic tests after a stillbirth. If we don’t know more about why they happen, we won’t be able to prevent them.” Source

155th out of 159 in the world. 24,000 babies every year who don’t get to take their first steps, say their first words, breathe their first breath. Thousands of mothers and fathers who never get to hear their babies cry. I can tell you, the silence is deafening. The silence that comes when there is no heartbeat on the Doppler. The silence that comes when you deliver a sleeping baby. The silence that comes when you have to tell people that your children died. I don’t know how to change this. I don’t have the resources to make this problem go away. All I can do, and will continue to do, is educate and support those who need it. For now, here are some things you can do to support someone who has experienced stillbirth. They may not hold true for everyone, but they do for me.

1. Don’t be afraid to say our children’s names. You aren’t bringing up or reminding us of something painful, because we haven’t forgotten. We will never forget. Speaking our children’s names shows us that you remember, that they matter, that that you care.
2. Be patient. We may push you away or distance ourselves, we may not attend all of the events and gatherings we used to, we just need time. Time to adjust to our new reality. Time to figure out where we go from here. Time to find our new identity.
3. Get to know the “new me.” Stillbirth alters a person. It changed who you are at the very core of your being. We are not who we used to be. Pieces may still be there and be the same, but as a whole, we have changed. Take the time to get to know us again.
4. Don’t take it personally if you don’t get a response to an email, text, call, etc. Believe me when I say every message is read and appreciated, but sometimes just getting through the day is hard. Thank you for caring, thank you for reaching out, and please don’t stop.
5. Simple acknowledgement goes a long way. “I know you’re struggling and I’m here if you need me” or “Just wanted you know I’m thinking of you” can be the best message to receive. You are acknowledging and validating our feelings without putting on pressure for a response.
6. Don’t stop checking in because “enough time has passed.” In the very beginning there is a sense of shock. Then, a part of me felt like I had to put on a show for people. There were always people at my house. For about 2 weeks, we constantly had people coming over. But then it stops. The rest of the world moves on. There will never be “enough time.”
7. Remember that moms need to physically heal as well. The pain of stillbirth doesn’t end when you hear the words “I’m sorry, there is no heartbeat.” The baby still has to be delivered. Whether naturally or via c-section, a stillborn baby is still born.
8. Don’t forget about dad. A father lost their child too. He will try to be strong. He will put on a brave face for his partner and his family, but he is grieving all the same. Be sure to acknowledge his pain too. It is real and it is raw.

I hate that this is my life. That I have any sort of insight on this matter. I wish things were different, but if my insight can help even one person or one family, I’m happy I can be that person for them.

Angelversary n. 1. is a word created by a bereaved parent denoting the annual date of a baby’s death, either early in pregnancy, stillbirth, or shortly after. This day is just as important to a bereaved parent as a birthday, and many are marking both birth and death on the same day.

December 2nd marks the first Angelversary of Stella and Joy. An entire year has gone by. 1 year, 12 months, 365 days, 8760 hours, 525,600 minutes, 31,536,00 seconds. Today marks one year from the beginning of the worst week of my life. On this day, November 28, one year ago, I walked into the hospital for my routine NST (non-stress test). My blood pressure was sky high. I was checked for pre-eclampsia and spent a few hours in the maternity ward. Finally, Zach and I were told we could go home, but I was no longer allowed to work. I was to be on limited movement for the next 9 days, until my scheduled due date. I had an ob appointment the next day, so we went home tired, but prepared that our girls could arrive at any moment. If only I knew…

The next day was the last time I heart my daughters’ hearts beating. That last time I went to a doctors office without fear, without anxiety, without being on the verge of tears. Even now, as Oliver is growing inside of me, I cry when I see and hear his heart. I cry for my daughters and what could have, should have, been.

A year in the life of a bereaved parent is like no challenge I have ever faced before. I remind myself that I must go on. My only choice is wake up, show up, and go on. It is so much easier said than done. There are days that go by and I feel good. I laugh, and am happy, and am living my life. Then are days that are not so good. I feel like my feet are stuck in buckets of cement and every step, every movement, uses all of the energy I can muster.

There are days I just don’t want to go on, but I do. No matter how hard, I try to push through. Some days I have to set goals. Just make it through the work day, 7.5 hours. Other days I have to go smaller. Just make it through the next hour. This year has been the most challenging mentally, emotionally, and even physically. But I keep going.

As Saturday creeps ever closer, I struggle to hold it together. I am lucky to have supportive coworkers, loving friends and family, and the most incredible husband and partner I could ever dream of. I would not have survived this past year without them. I am so grateful for each and everyone of you.

When Saturday comes, please take a moment to remember my daughters. Remember Stella and Joy. Take the time to hug your loved ones and tell them you love them. Nothing in this life is ever guaranteed. Appreciate it while you can.