Marilyn’s Story

OUR UNEXPECTED, WELCOMED BLESSING

An excerpt from my journal: “1/23/2015: Sooooo, a crazy thing happened the day after I went skydiving . . . I found out that I was PREGNANT with our 4th child! Crazy! I need to stop saying “crazy” because that implies that I think God is crazy, which He is not. I do believe that He has a great sense of humor. I’m going to be 44 in 12 days and I’m pregnant. Totally, totally, totally unexpected but a welcomed blessing. I just keep saying, “your will be done.” I’m still processing all this – it’s wonderful; it’s scary. A lot of time, I’m in disbelief. God certainly has His plan for us . . . I’m going to do whatever it is He leads me to do.”

On January 18, 2015, my little brother took me skydiving as an early present for my 44th birthday. Ever since I was a kid, skydiving has been something I’ve wanted to do, and it was an amazing experience. The next day, I was not feeling well, but I just thought it was a continuation of the motion sickness caused by somersaulting out of the plane. However, I thought it was strange that I was also feeling some symptoms that I only have when I am pregnant. I bought a dollar store pregnancy test, and when it was positive, I thought for sure that was not right. The next day, I went out and bought a few more tests, and each one was positive, too. It took a visit to my doctor’s office to convince me that I was actually pregnant. I was shocked by the thought of being 44 years old and pregnant. A complete surprise but a truly wonderful blessing.

My husband Shawn and I tried to think of a creative way to tell our children that we were expecting, and we ended up sharing the news while we prayed together before bed. Shawn kept repeating, “We thank you, Lord, for blessing our growing family with so much love.” After he repeated it three or four times, and the kids just looked puzzled, I said, “with a new baby.” My beautiful and loving children were overcome with happiness and a little shock, too! After sharing the exciting news with our children, we had the chance to tell our parents. We told them that Maliah, our youngest, was going to be a big sister, and it was fun to watch as their confusion turned to joy.


AN ABNORMAL ULTRASOUND

I had my first appointment on February 6, 2015, and my mom was able to come with me. She asked the doctor, “how many are in there,” and we learned that we were expecting just one. The doctor gave us a due date of September 17th.

On March 9, 2015, Shawn and I went to our genetic counseling appointment, a standard for geriatric pregnancies. We were asked to fill out a lot of paperwork, and then we met with a genetic counselor who told us about all the different options for testing, specifically the nuchal translucency ultrasound that we were about have. She showed us sample ultrasound photos to help us see what was a normal and abnormal measurement of fluid at the back of a baby’s neck.

After looking at the pictures, we had our ultrasound. The sonographer, Jenna, was nice and upbeat as she showed us our little one. When Jenna measured the fluid behind our baby’s neck, we could see that the measurement looked like the abnormal photo the doctor had showed us. There was concern in both of our eyes, but Jenna didn’t miss a beat. She couldn’t tell us the results, so she kept positive, showing us our baby’s little hands, feet, and profile. As she continued to measure our baby, she said that it looked like I was not as far along in my pregnancy as we first thought so our due date was moved to September 20th. After the ultrasound, I opted for the blood test to screen for Trisomy 13, 18, and 21. It took a while to successfully draw my blood, and I got stuck many times, but they were finally able to get a sample for testing.

On March 17, while at work, I returned a call to my doctor. She said she had the results from my blood draw and asked if I wanted to come into her office. I told her that I just wanted her to tell me over the phone, and she broke the news that our baby had Trisomy 18. After the call, I searched for information online, and I read, “unlike Down syndrome, which is also caused by an extra chromosome, the developmental issues caused by Trisomy 18 are associated with more medical complications that are more potentially life-threatening in the early months and years of life. Studies have shown that only 50% of babies who are carried to term will be born alive . . .” It was a big blow to say the least. As I read more online, I saw words like “incompatible with life” and the suggestion of terminating the pregnancy. We loved our little one so much, and it was hard to read these things.

I had been so focused on the diagnosis that I had totally forgotten to ask about the baby’s gender. I called the doctor back and found out that we were expecting a girl! We had already chosen her name, Ha’ani, which means “this day” in Chamoru. Whatever time God would bless us to have with her, we were going to embrace. I prayed for strength to make it through whatever would come, and selfishly, I prayed for a miracle.


A FAMILY OUTING TO SEE HA’ANI

We took Ha’ani to the beach. We had planned to go to Disneyland, but we didn’t have the chance to. We did get to take the kids to an ultrasound place, so they could see Ha’ani. They loved seeing their baby sister move around, hiccup, and wave at them. I journaled about the experience:

“3/28/2015: We got to see you today . . . all of us – me, Daddy, Mahal, Hurao, and Maliah! We went to this place called Sweet Pea 4D Ultrasound in Studio City. It was a cute little place that looked like a boutique in the front and a living room in the back. The family was able to sit on a couch and watch you on the big screen while the ultrasound technician showed different angles of you. You were moving around all over the place, and you had the hiccups! (We had just gone to a Philly cheesesteak place in the area, and I had a Dr. Pepper.) You waved at your brother and sisters and even sucked your thumb! We were all so happy to see you. I heard that your sisters teared up . . . your siblings were amazed at the experience of being able to see you. The people there were so nice – they had snacks and drinks, and they even gave us some things that weren’t included in the package we got like colored 3D pictures of you. You are beautiful, and we love you soooo much!”

Throughout our pregnancy journey, I felt peace, which I can only attribute to the many prayers of our family and friends. I feel like those prayers carried us through everything. We shared Ha’ani with everyone- our family, co-workers, many friends at church, and on Facebook. Everyone was praying for her.


CONFIRMING THE DIAGNOSIS

On March 4, 2015, we had another ultrasound appointment. I journaled about the experience:

“. . . Jenna was our sonographer, and Dr. Prathak gave us the results. Jenna was great, just like last time, upbeat, pointing out your beautiful features – we saw your profile, your beating heart, your hands and feet . . . our perfect little girl. The scan took about 1/2 an hour, and I just loved watching you squirm around in my belly – you are so active . . . I think you want to be a gymnast! When Jenna was done with the scans, Dr. Prathak came in to take a look, and they looked over you again, all while having quiet discussion between them about what they were seeing. Dr. apologized but said she would explain everything afterwards. When she was done, I went and sat next to Daddy, and she told us these things:

There were some abnormalities in your heart and lungs. Your heart is malformed . . . the left side is underdeveloped (also called a hypoplastic left heart syndrome). Your heart placement isn’t correct . . . slightly turned and pushed up. There are cystic changes in the fluid behind your neck (indicating Trisomy 18). Your left lung may be filled with cysts, and I think she said it is enlarged. She didn’t see your stomach or one of your kidneys – she said it didn’t mean it wasn’t there; maybe just hidden by your lung. Could see only part of your diaphragm – might be hidden or could have a hole in it and the intestines are going through it. There was only one artery and one vein in your umbilical cord and your arms and legs are measuring short, indicating you are having issues with growth. So many things, my little one . . . but I still have hope and trust in God.

I was writing all of these things down as Dr. Prathak was telling them to us . . . I didn’t cry until she walked out of the room. I collapsed into Daddy’s shoulder, and the tears flowed. I had hoped that we’d hear something more positive . . . that maybe there was a chance that the two tests were wrong and that you were perfectly fine. I think I was somewhat prepared to hear what she was saying, but there were way more difficulties than I expected they would find. I was really just focused on your heart and feet and hands. The doctor came back after I had wiped away my tears. She, of course, had to tell us about amniocentesis and terminating, even though she was already aware that we would be continuing on. She said that they would try to transfer our care to the Institute for Maternal Fetal Health at USC who specialized in situations like ours . . . for that we were thankful . . .”

I was so grateful to be in touch with a wonderful nurse named Marisa at the Institute for Maternal Fetal Health at USC. She was so caring and explained things so well.

As I processed all that we had learned, I journaled:

“Selfishly, I pray for a miracle . . . I want you to be born alive and healthy . . . I want to hold you and kiss you and smell you. I want to see you reach all the typical baby milestones and grow into a curious toddler – full of curiosity and wonder. I want you to grow from a testy teenager to a beautiful young woman – full of faith, confidence, and strength. Sooo, sooo much I want for you baby girl. For now, I will serve as a vessel to keep you safe and to love you unconditionally. All I want you to feel is happiness . . . you are loved little one – you are loved a lot! xoxoxoxoxoxoxo =)”


SIGNS OF PRE-ECLAMPSIA

On the evening of May 19, 2015, Mahal received a $2,500 scholarship on Senior Awards night. We were so happy and proud of her. When we got home, I ended up feeling the worst I’ve ever felt in the whole entire pregnancy. I started vomiting. I was nauseous, and my back hurt so badly. My chest hurt, and I had shortness of breath. It was really hard to breathe, and I was afraid I was having a heart attack. I started feeling even more pain and anxiety. At that time, I thought I was just feeling some extreme anxiety, but later, I found out that those were probably signs of preeclampsia.

On May 26, we had a couple of scheduled appointments for Ha’ani at the children’s hospital  for a fetal MRI and an EKG. We got the results of the EKG right away, which the cardiologist was pretty concerned about. Ha’ani’s heart had a lot of defects as we had suspected from previous ultrasounds. So many problems in our teeny, tiny baby.

That same day, later in the afternoon I had an appointment with my regular obstetrician. I hadn’t been feeling well for weeks, which I just attributed to being pregnant at an older age and anxiety and worry. She was concerned about my blood pressure being high and my other symptoms. I was admitted to Henry Mayo Newhall Hospital that night for observation and blood work. My kidney, liver, and platelet numbers were bad and getting worse. The doctor told us that they would have to induce, but we wanted them to do one more blood draw to see if my numbers had improved. They were really concerned about my numbers, but we opted to leave that hospital and go to Hollywood Presbyterian in case we had to deliver. Ha’ani would have the best care there since they work with the children’s hospital, and we had seen a specialist there.

It turned out that I had HELLP syndrome, a form of preeclampsia, and my health started failing. Labor was induced in the early hours on May 28, 2015. I progressed pretty quickly but then stopped. I was out of it, hooked up to an IV with so many things getting pumped into me. I am so thankful to have had my husband by my side the whole time. We also had friends and co-workers come and visit. Plus, all of our family was in town to attend our oldest, Mahal’s, high school graduation. We were surrounded by love and support.

As I understand it, I could have crashed or had a stroke without warning. I didn’t feel well at all, and I was in a good amount of pain. That afternoon, a friend from church, who is also a retired nurse, came to visit us. She’s an older lady, and we were surprised that she had driven all that way by herself. She said she was compelled to come. She told Shawn that I really didn’t look good and suggested we ask about a C-section. I remember her telling me, “you’ve suffered enough.” Doctors came in to check me. They did another ultrasound, and my numbers showed that it was okay for me to have a C-section. We thought my C-section would happen late that evening since there were four or five people scheduled before us, but a few minutes later, they started wheeling me into the operating room, saying we were going now. We’re not sure why there was such a rush, but we’d like to think that God blessed us so that our little one would be born alive, and we would have those wonderful moments with her.


MEETING OUR PRECIOUS DAUGHTER

Our precious Ha’ani was born at 4:41 p.m. I was out of it, and I am so thankful that Shawn was able to capture our little one on video – her little heartbeat, him cutting the cord, and them bringing her over to me and putting her on my chest. I see myself talking to her on the video, but I do not remember it. He said that he’s not sure how he was able to capture everything because he was a mess. You can hear him crying on the video. We spent the time loving our little girl until her heart stopped beating at 5:30 p.m. I remember the doctor coming over with her stethoscope and saying, “I’m sorry to tell you, Mr. and Mrs. Sourgose, that her heart has stopped beating.” I remember the pained look on my husband’s face, but I don’t know that everything really registered for me in that moment. I know that my heart hurt, but at the same time, I was feeling so much love.

After Mahal’s graduation ceremony, everyone came out to the hospital. We hadn’t told them what had happened, and we were torn about what to do. We wanted them to be there for Mahal to celebrate her hard work. When the kids came in, Mahal had worn her graduation gown, so we could see her in it – a happy and sad moment. So proud of her but sad that we weren’t there. They each held Ha’ani, and we all cried. Most of the family came in, a few at a time, and spent time with her. They all went home early the next morning, and Shawn and I had a little more time with Ha’ani. It was so hard when the nurse took her away. I just wanted to keep her with us and not let her go.

We got moved to a couple of different rooms. The last was on the same floor as other recovering moms. It was tough to hear the crying babies. I was in pain from the C-section – I’d never had one before. It was so hard to get out of bed every hour to go to the bathroom. I felt Ha’ani’s presence with me saying, “c’mon, Mommy, you can do it.” So, I did.


CELEBRATING HA’ANI

We finally got to go home a few days later when my numbers were back to normal. Over the next few days, we planned her rosary, visitation, and funeral with our church St. Kateri and Eternal Valley Cemetery. Thankfully, our siblings started a fund to help us with the funeral and burial costs. The visitation and rosary were held on June 4, 2015, and her funeral mass took place on her big sister’s 18th birthday, June 5, 2015. It was a beautiful day. We had asked folks to wear bright colors to celebrate our baby girl and most did. I loved it! The family all wore shades of orange. So many people came to celebrate with us, and the Women’s Guild of our church coordinated a wonderful reception for us. It was so humbling and touching. We buried our baby girl the following Monday.


FOREVER CHANGED

My husband is from Guam, and Ha’ani means ‘this day’ in Chamoru. Her middle names, Charlie and Rae, are in honor of our dads Charles and Rey. Even though we were told that Ha’ani most likely would not be with us, I had some hope. I thought I was prepared, but how could you really be prepared to lose someone you love? Though she lived outside of my womb for such a short time, she has touched our lives forever. It is amazing how much you can miss someone who was here for such a short time.

We wish you were here with us baby girl, but we know you’re in heaven in God’s hands. Pray for us little one so that we might live our lives in a way that will help us get to heaven to be reunited with you.

We love you Ha’ani Charlie Rae!