Losing Olivia

 

On September 2, 2020, with our families, we laid our perfect baby girl to rest. Her service was just as perfect and beautiful her little life was. 

Throughout this journey with Olivia, I learned that butterflies symbolize babies in heaven, and blue butterflies symbolize trisomy 18. Lately, I have seen a butterfly almost every single day. When I see a butterfly, I think of Olivia. After having Olivia and leaving the hospital, I saw butterflies even when I least expected them. Today, Olivia and I both wear matching butterfly bracelets to have a little piece of each other. I cannot express in words how much I miss her and will continue to miss her, forever. I will never be whole again without her. 

Prior to her service, I found this poem and it couldn’t have been more perfect for her. 

“Don’t weep at my grave, 

For I am not there, 

I’ve a date with a butterfly to dance in the air. 

I’ll be singing in the sunshine, wild and free

Playing tag with the wind, 

While waiting for thee.”

At the end of her service, we released butterflies in her honor. It was something I will never forget for the rest of my life. 

Although knowing the day would come that we would have to lay her to rest, my heart was not prepared for the amount of pain it felt. Our family is forever incomplete without her here.

Losing Olivia, has been beyond devastating. We are still trying to navigate our way through the depths of grief, loss, and heartache. I don’t know if I’ll ever understand why my pregnancy with Olivia turned so badly with no hope in sight. I’ll never understand how or why this happened to her. You always hear in instances like these “heaven needed them more.” I’ll never know how it's possible that heaven could need her more than I do. I have loved her with every ounce in me from the moment she came to be, and I will miss her for the rest of my life. 

I’ll forever miss hearing her heartbeat and feeling her little kicks. It makes me sad to think about being without her. 

It became important to me to make Olivia’s life known. Although she is not here and not seen, she lived. She is incredibly loved, and she is incredibly missed beyond measure. Her little life was brief, but she made an everlasting impact on me. 

I’ll never be able to express the amount of heartache I feel for going through this and losing her. No matter how many times we were told this was exactly what to expect and no matter how many diagnosis’s Olivia had, nothing truly prepared me to actually lose her. I’ll always wish I could have saved her. I’d have done anything I could have to keep her here.

I truly believe we had the best doctors that anyone could ever ask for. I’ll never be able to adequately thank them for everything they did for me, our family, and for Olivia. 

The support system our family has, is the best of the best. I cannot thank our families and friends for everything they have done for us. I don’t know where we would be without them. 

In sharing our story and our experience, I have had countless people reach out to me and share their stories and offer their support. One day, I hope that I can be there for other families who are going through something similar, have gone through something similar, or will sadly go through something similar in their future. It has meant so much to me to have the support I have received from complete strangers who shared their stories and held that space for me, one day I hope I can do the same for someone else.

Thank you to everyone who has been there for us.❤️

Olivia Faith Gallman

 

On August 26, 2020, I went in for my weekly doctor appointment, only to find that my sweet girl no longer had a heart beat. No matter how many times we were told this would happen with her diagnosis, and how sick she was, there is still never adequate preparation for moments like these. We fought hard, and we gave it everything we had for as long as we could. She put up a good fight. Each week that we continued to the next, she defied the odds that were against her time and time again. I began to think that we were invincible. Our doctors would say from week to week that they couldn’t believe we were still making it. I am so proud of her for that. It was as if she never gave up and that she fought just as hard as I did for her life. Although her body wasn’t strong enough to keep her alive, I’m thankful mine was able to keep her alive for as long as it did.

This was not what I wanted for her. This is not the life I had planned for her, but I am thankful, thankful for the little life she did have, and I am thankful that she was able to spend it with me. How lucky I feel to have been able to carry her for every second of her entire life. I try to think back on when her heart could have possibly stopped beating, wondering what I was doing at the exact moment it stopped, hoping she was at the most peace she could have ever been, and thankful that it was my voice that she last heard. 

On August 27, 2020, at 4:35 pm, she was born into heaven. It was the hardest day of our lives. The pain of losing a child truly is unimaginable. Matt and I were able to hold her, hug her, kiss her, and tell her how much we love her. We spent countless hours with her, wishing we had more. We had her blessed, we prayed over her, and we thanked god for her.

We named her Olivia Faith Gallman.

For months, We put a lot of thought into her name. She meant a lot to us, and we wanted her name to show just as much meaning. One thing we always discussed with our doctors at every appointment was in the end, no matter what else happens, we ultimately wanted her to be at peace. 

We named her Olivia, which means “peace”, and Faith, which means, “confidence in what we hope for and the assurance that the lord is working, even though we cannot see it. Faith knows that no matter what the situation, in our lives or someone else's that the lord is working on it.” 

I’ll never understand how heaven could ever possibly need her there more than I need her here. I’ll need her for the rest of my life. 

Olivia was put here for a reason. We may never know why she was taken away so soon, but we have to believe God has  a reason that is far bigger than anything that we could ever understand. She had a purpose. Her life had meaning. Her life mattered. 

A few weeks ago, I read a quote that stuck with me and it said, “an angel wrote in the book of life my baby’s name, and as she closed the book she said, “too perfect for earth.””

No matter what odds were against her, and how many “abnormalities” and diagnosis’s she had, Olivia was perfect. She was beautiful. Although the beating of her heart was silent, and her eyes were never able to open, her small fingers had no strength in them to grasp, and we will never know the sound of her cry or hear her voice, She was an angel that we got to hold. Despite everything she’s been through, she was beyond perfect. She had 10 tiny fingers and 10 toes, tiny little feet and hands, and a tiny little nose. She weighed 7.8 ounces and was 8.27 inches long. She was so strong for being so tiny. 

One thing you don’t think about when coming into the hospital in this situation is that you come into the hospital together, but afterward, you leave empty handed. I had a hard time wrapping my head around the fact that we had a baby that we’ll never get to bring home. Instead of bringing her home to a nursery where we would introduce her to her big brothers and sister, rock her and take care of her, we instead have arrangements for her final resting place.

Although she was only here for a little while, I can only hope that we were able to show her enough love to last a lifetime. I can only hope that she is looking down on us and able to see how much she is loved, and how incredibly missed she is. Even though we never really knew Olivia, we love her with all of the passion and intensity that a parent loves a child. My biggest fear is for people not to know she is apart of our family, just because they can’t see her. Olivia will always be apart of our family and apart of our lives. Olivia will always be remembered. 

Olivia changed our lives. She may have been small, but she made a big impact. She showed us a kind of love that is fearless, indescribable and everlasting. She taught us how to continue to have faith, even when we felt we had no faith left. She showed us how to be strong, even when we felt we were at our weakest. She taught us how to have hope even when we felt hopeless. She taught us that life is fragile and precious. 

I will always wonder who she would have been, and how she would have grown if she had been given the chance to. She will always and forever be our baby. My heart will always ache for her. 

My sweet baby girl, I will love and miss you for the rest of my life. 

“We will hold you in our hearts, until we can hold you again in heaven.”

Development

Today, we met with our maternal fetal doctor. Now that our baby girl is more developed, our doctor is able to see how she is developing and if she has any other abnormalities or conditions. 

With trisomy 18, it is common for her to have conditions with how she is developing. I knew going into this appointment, that we wouldn’t get good news. It’s unfortunate, but it’s the hand we were dealt, I’ll never know why, and I’ll never understand why this had to happen to her. 

It’s a strange thing to prepare yourself for, but I knew I had to. I prepared myself for the worst, because honestly, I know it won’t get any better, no matter how much I wish it would. It’s  still unacceptable on so many levels for me, but at the same time, we have no choice. 

During the ultrasound, they found that our baby has multiple conditions. The cystic hygroma is much larger. In some way, that still shocks me every time they tell me that it is larger than the last time. At our last appointment with this doctor, which was three weeks ago, the cystic hygroma was behind her neck and head, and measured 16 mm. Today, it measured 28 mm, and it has exceeded to the front of her head and down her spine. 

She has also developed hydrops. I knew this could happen, I just hoped that it wouldn’t. Hydrops are common with having a cystic hygroma, sometimes a baby will develop hydrops with a cystic hygroma, and sometimes they won’t. Hydrops are an excess amount of fluid in the body. She has developed a lot of fluid in her body within the last three weeks. She has fluid in her chest, surrounding her heart, in her stomach, her arms, down to her waist and in her legs, it has not completely taken over her body, but unfortunately it is in the majority of it. 

Her heart is small. The left side of her heart is smaller than the right side of her heart, and she has a hole in her heart because it did not form properly💔

Her bladder could possibly be functioning, but if it is, it’s hardly functioning enough to tell. 

I have a doctor appointment every week to check her heart beat, and her heart rate has lessened each week. I basically hold my breath from one week to the next, hoping the following week I will get to hear her heart beat again and she’s still alive. 

Right now, she is measuring to be only 6 ounces. She is so small, that it’s hard to tell if she has any other developmental issues.

One thing I have been adamant about is keeping her here as long as she will stay. I know god put her here for a reason, I don’t know if I’ll ever understand why, or why he chose this to happen to her, but I have to believe it’s for a good reason that’s bigger than I can ever understand. Although this has brought us so much sadness, she has shown me love in a way that I have never known before. She has changed my life. She is apart of us, and she always will be.

During our appointment, she looked so happy, active, and content. She loves to move her hands and fingers around. She always has at least one finger pointing in pictures I have of her. She could not keep still. In a way, between doctor appointments, I feel her moving and think to myself, she feels like a normal healthy baby. It’s hard to grasp that she is so sick. 

Before we left, I asked our doctor if she felt pain, or if she ever would feel pain. We never want her to suffer. I feel so helpless. He assured us that none of her conditions are hurting her, and when her heart does stop, it will be peaceful for her. In the end, that’s all I can ask for. I never want her to struggle.

This is the hardest thing I have ever had to do.

What to Expect

Today, we met with the fetal maternal doctor. We had an ultrasound done, and then we sat down with him for a consultation. 

He told us that the baby has a few characteristics with trisomy 18 at this point, and that we will be able to tell more in a few weeks when the baby is more developed. 

Right now, the baby has a triangular shaped head, which is consistent with a trisomy 18 diagnosis along with the cystic hygroma. With the positive trisomy 18 testing, and these characteristics of trisomy 18, it increased her diagnosis to be 90% accurate. 

I’m still have a hard time believing this is our baby that this is happening to. 

The cystic hygroma, has doubled in size in two weeks. I didn’t expect that. 

She was moving her arms and feet all around during the ultrasound, almost as if she’s happy where she is. It breaks my heart that I can watch her on a screen, and that may be the only times I see her alive. I love her so much already. My poor baby. I hope you know how much I love you. 

During our consult, he told us that we had made it a long way, but that in our case he maybe gives us about six weeks until her heart stops beating. I'll never understand how this happened to our baby.

 Due to the cystic hygroma, her heart will stop due to the amount of pressure it’s putting on her. 

He advised that I see my OB every week instead of every two weeks.

He went into depth with how I can somewhat expect delivery will be. 

I’m having a hard time thinking about that right now. No one should ever have to go through this. 

How did this happen to us?  

He went on to tell us that this is not common. Its almost as if you get struck by lightening.

How did this happen to our baby

We decided to opt out of doing amnio testing. 

After we talked about it, we don’t feel the need to undergo anymore testing to confirm what we already know. 

This is our baby. We know that our prognosis is poor, we know that one day, her little heart will stop beating, and we will have to tell her goodbye far sooner than we ever wanted to. We don’t want to put her through anything more than she’s already going through, and I can’t keep repetitively hearing all of the things that our poor baby has wrong with her. I will love her no matter what, and I will keep her here as long as I possibly can.

I know she is not healthy. I wish more than anything she was, although I wish there were, there aren’t any tests that are going to cure her. 

For now, as sad as I am, all I can do is thank God for her. I will fight for her life, and I’ll do the best I can to cherish the time I do have with her, because I know it won’t be long enough. I’ll always wish there was more that I could do to save her. I’ll never understand why this happened to her.

I hope she knows how loved and wanted she is. 

My heart is broken. 

It’s a Girl

We met with our doctor the following day, to talk about our baby’s diagnosis and how to move forward. 

She told us that most often baby’s with Trisomy 18 will miscarry, are still born, or may live a few hours after birth but not many do. 

She asked if our kids knew, and they do, we had told them just four weeks ago. We waited to tell them and our families. We had already had an ultrasound, doctor appointment, and even waited a few weeks after that to tell them. She knew that was hard, “what do you tell them?” 

What do I tell them? 

That was something that did cross my mind, but not the actual conversation of it, just the heartbreak of it. How do I tell them that they will never know this baby? This baby they have begged and begged for, planned for, were so excited for. How do I tell them this baby will go to heaven instead of come home to us? I lost it. 

We talked about what to expect when I have the baby, and it will all just depend on how far along I am. 

At this point, I will have no indication of losing the baby. The only way I will find out is to come in for a doctor appointment, and our baby won’t have a heart beat.

How is this happening to us?

 I will now go to appointments every two weeks to monitor the baby’s heartbeat. 

She went on to tell us that our next step is to meet with a Maternal Fetal Doctor. They will do more detailed ultrasounds, look at the baby more in depth, and suggest that we do an amniocentesis test. 

Matt and I had already discuss this test, and I don’t have the need or want to move forward with it. We discussed the test with my doctor, and she told us that the test does have risks for infection and miscarriage, and our decision should be based on how far am I willing to go, and that’s something the fetal maternal doctor will also discuss. 

How far am I willing to go? This is my baby. A life that we created. I feel this baby everyday. I am willing to go to the ends of the Earth. If I could, I would carry this baby forever and not think twice about it.

 It’s crazy isn’t it, how you know you would devote your life to someone that you have never met. 

We agreed not do any further testing. We know our baby is not healthy, our prognosis is very poor, and ultimately,

I’m having a baby that I can’t keep.

I know that one day, the baby’s heart will stop. As hard, and as gut wrenching as that is, it’s unpreventable. It’s hard. It’s hard to accept, almost like a pill I can’t swallow.

 It’s a nightmare I wish I could wake up from. 

It’s hard to know that one day, I’ll have this baby, and I’ll have to face my worst fears, and I can’t do anything about it.  I’ll have to tell this baby goodbye, the baby that I would have given anything to keep. I’ll never bring this baby home. I’ll never be able to rock this baby to sleep. Ill never watch this baby take their first steps. I’ll never be able to see this baby grow up. I’ll never be able to give this baby a birthday party. I’ll never be able to watch this baby play with their brothers and sister. I’ll never be able to see this baby go to their first day of school. I’ll never be able to watch this baby grow up. 

This is the hardest thing I will ever do in my life.

My doctor told us she would set up an appointment with a maternal fetal doctor, and she would be back. Before she left the room, I asked if she could tell us the gender of the baby. 

It’s a girl. 

Our beautiful baby girl. How heartbroken I am. 

We were set up to meet with our fetal maternal doctor on Thursday, which was in just two days.

Diagnosis

One week. Turned into 11 days. We waited 11 days for our test results to come back. 

My doctor called me around 4 o’clock with our test results. She asked if I wanted to get my husband on the phone, and I did. 

She told us that she got our test results back, and they came back positive for trisomy 18.

My worst fears, came true and were right in front of me. She went on to tell us that with these tests, 80% of them come back with false positives, but with the condition our baby already has with a cystic hygroma and the size of it, she did not believe that was our case.

All I could do was cry. 

I had read about different possible conditions our baby could have during researching cystic hygroma’s, trisomy 18 being one of them, and I knew that our prognosis would not be good. 

I asked her what the survival expectancy was, knowing the answer but clinging onto the hope that I had been misinformed. She told me that most often babies are still born, miscarry, or make it to term and maybe survive a few hours after birth.

My heart broke. 

How did this happen? 

She asked that we come in the next day to discuss how we move forward. 

My heart was broken. My poor baby. 

My heart hurt. It hurt for my kids, who were so excited to have another baby that this was all they had talked about. It hurt for my baby, who I felt that I couldn’t help. It hurt for my husband, how could this happen to us? 

When you look up trisomy 18, you’ll find that it is very rare. It is also known as Edward’s Syndrome. It is a condition that causes severe developmental delays due to an extra chromosome 18. There are fewer than 20,000 cases in the U.S. a year. My doctor told us that she sees maybe 1 case every other year if that. Symptoms include low birth weight, small abnormally shaped head, and birth defects in organs that are often life threatening. How did our baby fall into that category, how did this happen? 

How we got here

At 14 weeks, I went into the doctor for a check up due to pain I was having. It was a constant and unbearable pain that I had never experienced before. It was so painful, it scared me that something was wrong. I was told to go to ultrasound when I got there, and that another doctor in the practice would see me since my doctor was out of the office on Tuesday's. 

I had my ultrasound, and saw another doctor. She told me that I had a cyst that more than likely caused the pain I was having, and it would subside and we would continue to monitor it. 

Two days later, I saw my primary OB. I explained what happened to me, how I felt, and that it did subside after a while and I was feeling ok. She checked the baby’s heartbeat, then said we had a few things we needed to discuss. 

She went on to tell me that they did find abnormalities with my baby in my ultrasound, and she was concerned. 

She told me that the baby had fluid behind the neck, called cystic hygroma. All I could do, was nod my head and say “okay.” I didn’t fully understand what was wrong with my baby, or how this happened. 

She went on to tell me that it’s pretty rare for a baby to develop a cystic hygroma, and when they do, it often indicates Down syndrome.

It was a lot to take in. More than I expected at my 14 week check up. I didn’t know what to say, or what to ask at this point, all I could do was try to fight back tears. She asked me how I felt about doing genetic testing. 

Flashback to my previous pregnancies. Matt and I discussed genetic testing years ago, because at every first doctor appointment for pregnancy, they ask if you want to do genetic testing. Our answer has always been no. We have always felt that if we had a baby that had special needs, it would not change anything. We would love it the same. We would be excited to have a baby, and it wouldn’t matter what care or needs the baby had. It was our baby and we love them no matter what.

I asked her what she thought I should do, and she said that with this condition the baby has, she would suggest that I move forward and do genetic testing. She told me that if the baby does have Down syndrome with this condition, it would help us to get ahead of it and know how to move forward with the best interest for the baby’s care. 

I agreed to move forward with the testing. Scared, worried, and confused. I had to attend doctor appointments alone due to covid.

I had some paperwork I had to complete, and then she sent me to the lab for the testing. 

I waited a while and finally was called back for bloodwork. I did the bloodwork, and they told me it would be ready in one week. 

I walked to the car, and I finally got to cry. Still, at this point, I did not have full knowledge of what was wrong with our baby. I googled. And googled more. And cried. And cried more. 

I learned that fetal cystic hygroma’s occurs in 1 of 800 pregnancies, and 1 of 8,000 live births. The overall survival rate for fetal cystic hygroma is 10%.  I thought, how is this possible and how did this happen to our baby? What could I have done to prevent this? How was our baby doing perfectly fine six weeks ago, and we go from that to this? 

I was so sad and so scared. I was sad that I couldn’t do anything to help our baby, and I was sad that the baby could have something wrong and we didn’t know what it was or how to help. I was scared. I was scared for our baby’s life. I was scared of the unknown.