Amelia Grace 2016


We didn’t think it could happen to us…

July 2015 – We’re pregnant! My husband and I made the decision that we were ready for a baby of our own and a month later, we were blessed with great news! This was my first time being pregnant and not knowing what to expect I practically lived on pregnancy websites looking for clues on what to expect week by week.

Getting more and more excited, we told our families at 12 weeks and then at 16 weeks we told the rest of the world via Facebook. We were so happy to take the next step and become parents. Scared to death without a doubt, but making plans like everyone else. This was the first grandchild for my parents so you can imagine how excited they to be grandparents, already picking “grand” names for themselves.

I’m 28 years old and my pregnancy had been somewhat easy so far. I wasn’t really big yet and I read that was normal at 20 weeks. Other than my debilitating hormonal migraines, I didn’t have any morning sickness or any other issues. So far, so good.

November 2015 – My husband went with me on every appointment. He was excited to see the baby or hear the heartbeat every time. We made the decision not to find out the sex and keep it a surprise til April. Truly, I didn’t really want to know. I just prayed for a healthy baby. We were at the doctor’s office and after the ultrasound, I ushered David to the waiting room and as I passed the doctors office, she waived me in. I sat down and this is where our lives changed forever.

The doctor told me that the baby has a “single artery umbilical cord” and “cysts in the brain”. She assured me the cysts were nothing, but what really concerned her was the umbilical cord. She insisted we see a perinatal specialist immediately. A little scared, but we carried on for a few days. We were not yet fully prepared for what came next.

December 2015 – I’m lying in the ultrasound chair with my husband by my side as we watch our baby jump around like crazy at the specialists office. After the nurse did her thing, the doctor came in and took a look. She proceeded to tell me everything a mother doesn’t want to hear. “I see a few things that concern me”. Oh my god… My heart was beating so fast. She confirmed what our first doctor said and added this: “Your baby has something wrong with it’s heart too”. WHAT?! She gave us a general description and said we needed to see a fetal cardiologist immediately. Then, she gave us a list of testing that I needed to rule out all these scary things, like Trisomy 21, 18, and 13. I had never ever heard of any of this! She recommended an Amniocentesis as soon as possible to confirm or deny what exactly was happening. The appointment was almost over and I told the doctor I wanted to know the sex. After all that bad news, It’s a Girl! We were scared. We had no idea that bad things could happen to us.

My husband and I went home and we cried. There was something wrong with my child and there was nothing, NOTHING, I could do. I proceeded to research what all this meant. I was on a mission, I wanted to know everything there was to know about all of this. Every website I read talked about “soft markers” or personal stories that talked about it. It occurred to me that my child has 3 of these markers. A heart defect, single artery umbilical cord, and cysts in the brain. Not to mention the statistic that girls are 80% more likely to have Trisomy 18.

So now I’m scared to death. My perfect pregnancy has just been shattered into a thousands pieces. However, I was confident with knowledge as we went to the cardiologist the next day. After an hour of ultrasound, the doctor told me that her heart defect was something called Pulmonary Atresia. Basically, half her heart wasn’t working. Surprisingly, I was as calm as could be and this doctor gave us a glimmer of hope. They had a surgical plan after birth and informed us that a transplant could be done as a worst case scenario.

Okay. We can handle this. This could be just a heart problem and the other things are just a coincidence.

The very next week, we went in for our Amniocentesis. I found out that we could get rapid results (FISH test) which only took 3 days and the official full results would be 10 days. The Fish test could have a false positive, but targeted the 3 chromosomal abnormalities, 21, 18 and 13 the doctor was concerned about.

Friday, December 18th, 2015 at 3:55pm – the phone finally rings. My heart is pounding beyond belief and the first thing she says is “Are you with your husband?” I knew what she was about to tell me.

Our precious baby girl tested positive for Trisomy 18. I couldn’t get out of the office fast enough. I burst into tears the second I reached my car. Why me? Why us? What did I do wrong? I was surprisingly very angry. We had our entire family waiting on the edge of there seats the entire day. I shut down. I called my husband to come home ASAP. Our hopes had been crushed that day.

She was going to die. Only 10% of Trisomy 18 babies make it through birth and have only days if they do make it. We found little comfort in knowing that this diagnosis is just by chance. Just by chance did this baby have an extra copy of chromosome 18. There is nothing wrong with me or my husband. It CAN happen to anyone. [Thankfully, there is less than 1% chance of it reoccurring again so we CAN have more healthy beautiful babies.]

After all the “why” questions, we had to think about what we were going to do. Many people find out early and choose to terminate. I was 24 weeks pregnant and will be 27 weeks by the time we get the official amnio results. In the state of Georgia, you cannot terminate a fetus after 24 weeks. Is that really what I wanted to do?? Terminate? But, how was I going to live with this pregnant belly everyday knowing she was going to die? If not in me, but at birth?

It was the week of Christmas. My family always comes over for Christmas Eve Dinner and I had to
tell everyone NO conversations talking about baby and surely no baby gifts. It was so devastating. Learning that all your hopes and happy thoughts are no longer valid. I cried a lot.

After Christmas, I decided that I had to carry her to term. There was no way I could’ve lived with myself any other way. My perinatal specialist recommended inducing at 34 weeks so all I had to do was make it til then. Then I would be able to meet her for a moment and move on. Somehow, I managed to pick myself up and carry on. My husband and I didn’t talk about it much to keep my pain at bay.

The next couple of weeks were hard. Telling our friends and our bosses that our baby had a fatal diagnosis. Thank goodness I didn’t prep the room that was supposed to be the nursery. My baby shower scheduled for January 30th was cancelled.

Finally the holiday’s were over and we began planning her birth. There are so many factors you don’t want to think about, but you have to. Some of those questions:

1.) Will you name your baby?
2.) Will your baby be taken to hospice if she survives after delivery?
3.) Do you want her cremated or buried? If buried, will there be a funeral service?
4.) Do you want heroic measures to be taken or comfort care?
5.) Will the baby be in the room with you the whole time?
6.) Who do you want in the room?
7.) Do you want a professional photographer?

Thankfully, at our labor and delivery hospital, they have these wonderful people who help you through the entire process – H.E.A.R.T Strings at Northside Hospital. I talked to them quite a bit and we had set up a meeting to discuss all the questions I had.

January 26, 2015 – 9:15am. I went to the perinatal specialist for my weekly appointment. I didn’t want to bother my husband with these appointments because, well, there were a lot, so I was alone. I was always a little disheartened when I went in because there were always happy pregnant women around me, which is the hardest thing to endure when you have no more hope for your pregnancy. The nurse gooped my belly and started the ultrasound. The nurse was really quiet and I asked her “Is there a heartbeat?” She responded with, “That’s what I was looking for.” I burst into tears. My baby had died. I was making my peanut butter and jelly sandwich earlier that morning thinking in my head I wasn’t going to need it today?!?! I knew I hadn’t felt her in a few days and my body was changing a little bit. I was her mother and I knew something went wrong.

The next 24 hours were the hardest hours I’ve ever been through in my life. The doctor let me use her office to start calling family and my husband. Our baby girl has passed on to heaven. Those words are so hard to spit out while your processing what just happened.

I met my husband at home and we went to the hospital to deliver our baby. We hadn’t had the time to answer any of those questions, but to be honest, you can’t really know your answer til that day. The doctors explained to us what was going to happen. It was all a blur to me. The first night I was induced and had contractions all night. I was so scared. My body wasn’t ready for labor yet. If it wasn’t for the amazing nurses at Northside hospital, I don’t know that I would’ve made it through. Not knowing what to expect because I had never had a baby before, they assured me I was going to be okay. Finally, it’s about 2:00pm on January 27th, 2016 and the nurse said I was almost fully dilated, only about an hour to go. My baby wasn’t going to wait an hour, I told the nurse it was time and she rushed to get the doctor. The doctor entered the room and because I was so terrified about what was next I started to cry and proceeded to cry through the entire delivery. My husband held my hand and watched me go through what felt like the worst and best moment of my life. There we are, a bustle of nurses around us, and this tiny precious baby we made together in my arms. Knowing she was never going to know me or her daddy, I just told her I was so sorry. I felt so much love and loss all at the same time in that moment.
Nothing can prepare you for leaving the hospital without your baby. We went home and my brain felt okay, but my heart was broken. My heart is still broken.

Postpartum for me is hard. My belly is gone and I feel like it never happened. My mom helped me pick out a necklace to always have with me. It really helps me to physically touch something and remember her.

I find comfort knowing my angel is with God. I know I will get to hold her again one day. Until then, one day at a time..

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