Lydia Marie Zornow

Yesterday we dropped off our Japanese exchange student at the airport. We had a great time taking in a baseball game, visiting Milwaukee, trying new foods together, and getting to know each other. Madeline found a best friend in him, delighted that he lived with us too, and was heartbroken when she realized he wouldn’t be staying with us forever.

That sense of loss was hard on her and its hard on us too. Our student will return home safely to his family, but we may never see him again.  Oliver and I have played that role time and time again with our students and friends in Swaziland and Haiti, even our high school and college friends who are now dispersed across the globe. There’s nothing worse than missing someone and we miss a lot of someones and one amazing little girl.

The morning of my first day as a US Peace Corps trainee in Swaziland, I woke up and my first coherent thought was, I can’t do this for two years. It was freezing. June is winter in Southern Africa and there was no indoor heating.  Just as much as I was experiencing physical discomfort, my brain was thrown for a loop when it realized how very far away from home I was.

I tried talking myself into a calm state. I thought I might have packed a sweater somewhere; one I had been planning to use only a few times during my two-year stay in Africa. As for the distance from my home and family, I just saw them four days ago in Wisconsin. I decided I would focus on the fact that yesterday I had 2 years and 2 months until I saw them again. Today it was 2 years, 1 month, and 29 days. Looking at it from that perspective, I would always be closer to seeing my family again than I was the day before.

It wasn’t much, but it was something to focus on—a pseudo meditation I did often during my two years in Africa.

Today, August 9, 2017, marks the second anniversary of Lydia’s death. If you can use the word anniversary for something so sad and final. There are days that I could use a meditation, pseudo or otherwise, to get through things.  Instead of getting closer and closer to seeing my eldest daughter, I get further from our goodbye.

Our family is doing what we can to survive this tragedy. We talk about Lydia often and Oliver and I share stories of her life with our other two children, so that they will hear her name spoken lovingly throughout their childhood. Still, we feel like we can only mitigate some of the challenges.  Our lives have been irrevocably shaped by the loss of our daughter.

Last year this time, I was just a few weeks pregnant with Pierce. The prospect of facing another difficult pregnancy was terrifying. My first pregnancy had fallen out of my control and I was scared something similar would happen. There was a lot to reassure myself with: it wasn’t a twin pregnancy, it wasn’t high risk, I was healthy. I was still frightened.

We had a few false scares. Doctor calls for follow ups accompanied by tears and more worries. Thankfully, things turned out to be alright. Pierce is healthy save one dilated kidney that brings risk of frequent UTIs. He had an infection at 3 weeks old that warranted a hospital stay and, Monday night, I was in the ER with him again, getting antibiotics. As he gets bigger (and he is getting big), Pierce will outgrow this.

A UTI is small compared to Twin to Twin Transfusion Syndrome (an abnormal dissemination of resources between twins via the placenta) but these moments still scare me stiff. The back of my mind runs itself tired wondering if it’s an indication of a bigger problem.

On Oliver’s birthday last June, we had a similar moment with Madeline. Some of you reading this might remember the hastily extinguished birthday party. Madeline was at one of her grandmother’s house and came down with a fever and suddenly we were getting a call that she was having a fever-induced seizure. Again, it was something contained. Madeline had a high fever from a virus, and there were no lasting impacts. I’m grateful for that and for Madeline’s health, but since Lydia passed, I can’t shake the ongoing worry and paranoia. I try to tell myself there are things to worry about and things to WORRY about and we have none of the later at the moment.

It’s hard reaching this landmark of two years since we’ve seen our daughter. It’s just as hard finding some piece of light, but I’ll try. It’s “better to have loved and lostThan never to have loved at all.” We’re so grateful we met and spent time with our little girl.

This year in honor of Lydia’s memory, our family will be putting together supply kits for the Birth to 3 program which Madeline is a part of and which helps children under 3 through physical and speech therapy. Because of Madeline’s early birth, she was an automatic qualifier and has benefited greatly from the program.  Lydia would have been a part of the same program.

Rest in peace, Lydia.

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Welcome Baby Pierce!

On Monday morning, Pierce Lawrence Zornow arrived to join our family!  He weighed 8 lbs 9 oz and was 21.25 in.

Not yet a week old, it’s been exciting and very busy welcoming Pierce into our family. Pierce has been pretty laid-back about the whole process, preferring to nap through most of the transition.  He’s doing so well and can already lift his head to take in the sights.  It’s been amusing to watch Madeline cycle through emotions of indifference, surprise, resentment, and acceptance.  Right now she loves being a big girl helper and fetches Pierce more blankets and toys than he needs. We are so excited to have Pierce a part of our family. Please enjoy some photos from Pierce’s first full day out in the world!

Beautiful photos thanks to one of Pierce’s hospital visitors (and first cousin once removed) — Molly Jo.

One Year

August is a special month for us.  We recently celebrated Madeline’s 1st birthday and our 8th wedding anniversary, as well as reached the year point since we said goodbye to Lydia.

Madeline is doing a wonderful job growing and learning.  She started to crawl and is especially tenacious about using that ability to reach power cords and Oliver’s glasses. If you’ve seen her lately, you might have heard one of her stories; they’re abstract of course, made up of tiny baby babbles. Madeline also enjoys tasting blueberries, pumpkin, and turkey.  Later today she will pose for her one year pictures. We still have Birth to 3 therapy twice a month and longer term follow up appointments, but other than that, she is mostly done with her medical appointments. Madeline is a very happy baby.

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This month, Oliver and I both wanted to do something to honor Lydia’s memory.  Oliver emceed a fundraising event hosted by SOAR (details: it was a decade themed event and Oliver wore a coral dress shirt with ruffles) and I participated on a committee at St. Elizabeth working to purchase a new transport isolette for their NICU (details: we got it!). With our families, we are also putting together care packages for other families currently staying in the NICU.

We’re thrilled Madeline is doing so well and that we can do some good in Lydia’s name, but things aren’t that simple.  Things are hard. We’ve spent countless appointments with Madeline to get her where she is now and have spent a year mourning Lydia.

A lot of people refer to Madeline as a miracle and she is. She has come out winning out of a long struggle. No one has told me that Lydia is a miracle, but of course she is. During our c-section, Oliver was able to cut Lydia’s umbilical cord and Lydia came back in to the operating room to wave at me, victories because she was strong enough to sustain the event of her birth.  Lydia fought hard for 5 days, but her loss of life was not because she didn’t try hard enough.  Her lungs simply didn’t have the capacity they needed.

On the day that Lydia died, Oliver and I stood by her isolette, talking with one of her nurses about the situation. Lydia’s heart rate started to plummet.  I started crying and told them to take her out of the isolette, she should be with me for her final moments. I had only been allowed to hold her one other time.  We wrapped her up on my chest as the monitor began to flat line.  I could feel her slight warmth and soft skin, but also her weakness. Then, slowly, Lydia brought her heart rate from 0 back to the normal range.  Oliver and I took turns holding Lydia, giving her what she needed, showing her she was part of our family.  Hours later, held again by me, Lydia said goodbye.

Every day I celebrate her life, but it’s been hard to accept what happened.  It’s not fair nor right.  It’s akin to a car accident: Twin to Twin Transfusion Syndrome occurs randomly and it was impossible to stop. I wonder why she was given to our family for such a short time and it’s impossible to answer.  Our idea of a miracle is tied closely to our desire to be invincible. We always want things to go back to normal, to get another day; we try to ignore the obvious fact that for each of our stories, that will not be the case, on some day. What Oliver and I do know is that no matter what, we would have always chosen to bear this pain to be able to meet her. Lydia only had 5 days with her family but I think there’s a miracle in that.

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When I was pregnant with Madeline and Lydia, Oliver and I followed the old rule of waiting until first trimester was over to share the news.  Even though we waited to brag about our twins, a coworker scolded me a little bit about telling people so early, he thought I should have waited until things were more secure. That type of thinking punishes mothers, their partners, and the baby.  If something does happen to the baby, there are very few shared happy memories and, worse, no support network to reach out to. However, the taboos surrounding pregnancy and death are ones the we can change. A better culture surrounding these life events would make all the difference for new parents and grieving parents.  I also wish I had pipped up earlier so everyone had more time to celebrate Lydia’s life than 10 weeks.

So, we are happy to announce we’re pregnant with our third child, due on March 29, 2017.  The baby is healthy and about the size a thumb print.  He(?) is working hard on getting all of his systems in place but already has tiny toes and fingers. And, of course, brown hair and brown eyes are a given in this Zornow family.

I hope this is exciting for you too.  I know many of the things we’ve written on this blog have not been easy to deal with, but thank you for allowing us to be open about what our family has faced.

-Rebecca & Oliver #wahoo #March2017

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Attention

Attention, World. Madeline Ann Zornow has been tube free for one week!  She doesn’t need her supplemental oxygen anymore, even at night, and she is doing a great job! That is all.

12 Hours

Madeline is 7 months old and over the weekend, she made the big achievement of going without oxygen for 12 hours! Since the breakthrough, Madeline has been off of her oxygen everyday. It goes back on at night along with her monitor. We are really proud of our daughter.

Madeline has been spending most of her days eating, sleeping, babbling, playing with her stuffed bunny, looking in the mirror, chewing on blankets, and showing off her tummy time skills. She also recently ventured to go hiking at Heckrodt Wetlands and goes on plenty of stroller rides. Now that the snow is gone and warmish weather is here, it’s nice to get out.

We love all of these normal baby things coming about and everyone is relieved to see them, but I’ve always thought about Madeline and Lydia as normal babies. It’s just that sometimes you find yourself with extraordinary challenges around you. If TTTS hadn’t happened the four of us would be sitting at home together.

I was talking about Madeline the other day with someone and mentioned how happy she is and that we have our routine down. I said, “She’s such an easy baby.” At the time, Madeline had her monitor strapped to her foot and oxygen close by. The person looked at me surprised and said, “I’m not sure this is what you’d call easy.” But she is. She’s so happy and giggly and maybe it’s just that we’re relieved to have her with us, all of the doctor visits and medical supply ordering and worries seemed dwarfed by comparison. Madeline’s doing a great job!

 

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6 Months

We just celebrated the 6-month anniversary of having our two little girls.

Madeline is doing a wonderful job learning and growing.  She is a happy baby and loves to smile and is making attempts at giggling.  Madeline has started to roll and she always looks so surprised when she makes it over. Our doctors, nurses, and therapists (who we are seeing less often now) tell us that she is making great strides for a 24-weeker and that she is meeting all of her developmental milestones.  The icing on the cake is that we are testing her abilities to go without supplemental oxygen.  Her record is two hours so far. Two, long amazing hours that she didn’t need medicine or a machine to help her survive.

Oliver and I are having a lot of fun exposing Madeline to some of the great things in life.  She had her first visit to a museum (the Bergstrom Mahler), met a cute little cousin younger than her that she couldn’t take her eyes off of, and has read lots of books.

Still, even now, we’re feeling the effects of a 4-month hospital stay in all areas of our life.  Fortunately, Madeline is sleeping through the night, so we are keeping a more normal schedule and we continue to put the pieces back together.

We’ve also been without Lydia for six months. It’s a very hard loss to bear.  We have reminders of her throughout our home, but our short time with her continues to grow further and further away.

I recently learned that the incidence of TTTS with identical twins is decided at the very moment the egg splits.  Even at that moment it is decided in which week it would appear in the pregnancy.  This threat to their lives was something impossible to run away from or fight.  Every day I struggle to come to terms with the mark this has left on Lydia and Madeline’s lives and the infallibility of our separation from Lydia.

It really doesn’t get easier and you would think that for all the years that people have been living and dying, there would be more real things to say to people facing loss.  Grief is a sort of windowless room you’re stuck in and you’re not sure, but you have a sense that something’s going on that you don’t understand. I think our culture focuses on grief as a process to be dealt but that’s not it at all.  You can’t change what happened and you can’t change how you feel. The only thing I’ve read or been told about grief that makes any sense is that it changes you.  For me, that was a small affirmation that I wasn’t crazy because I wasn’t going back to feeling like myself.  More than travel, marriage, education, or feel-good movies, loss is the sort of life event that changes everything about your outlook, belief structure, and broader perspective.  I wish I could just have had an omg-I’m-approaching-30 crisis and read my way through Eat, Pray, Love, but instead I have this.

But I meant what I said when I told Lydia not to be afraid, because death happens to everyone. It wasn’t just her and it’s not just our family.  It is okay to be scared, but it’s not something to dread.  I believe Lydia is safe, and I hope I can meet her again.

In the meantime, we focus on being here with Madeline.  Here are some photos of this adorable baby on her 6-month birthday.  And for those of you wondering, Lydia would have looked just like her sister at this age.