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Ambra Storm

 

Micah and her daughter Ambra Storm, baby with anencephaly

This is the story of my beautiful daughter Ambra Storm Parker, who was diagnosed with anencephaly during my 18th week of my pregnancy.

Her story started with positive lines on a home pregnancy test. I wish I could say I was excited when I looked at those test results, but I wasn't. I took three more test to make sure there wasn't some kind of mistake. I was 17 and not ready to become a mother. Although my boyfriend and I didn't think we were ready at 17 we both took full responsibility for raising our baby no matter what was to happen. I thought being a teenage mother was going to be hard I had no idea what was to come!

I made my first doctor's appointment around 5 weeks and had an ultrasound at 7 weeks and 6 days. Everything looked normal the only thing that was a little worrisome was the baby's heartbeat which was faster than normal but the nurse said it was not too uncommon and that we would just have to watch it. I was free to go and continue to see my doctor every 6 weeks. The hardest part during those first few months was the constant sickness and nothing seemed to make it go away.

On July 12, 2011 at 18 weeks, my boyfriend Kyle, my mother and I went to the ultrasound appointment. We were all very excited and brought along our dollar bills because my boyfriend and I had made a bet. I thought the baby was going to be a girl and Kyle wanted a boy. The u/s tech took his time and commented on how active she was. Every time he touched the probe to my stomach the baby would start kicking and punching it was so amazing to see her up on the screen fighting with the tech. He kept saying how hard it was to get a good picture of her. He took his measurements and then asked if we would like to know the sex of our baby. We both quickly said yes and we were excited to find out we were having a girl!

The u/s took about an hour for his exam. My mother knew something wasn't quite right because it was taking so long. Then the tech said he needed to talk to someone and he would be right back. During that time Kyle and I texted everyone so that they would know the good news of a baby girl. My mother kept commenting on how strange it was that it took so long but I was thinking what could be wrong, the baby looked fine. When the tech came back he said my doctor wanted to see me right away. So we walked down to her office and waited till she could get us in.

While we were waiting I still didn't think anything was wrong. Like any good mother my mom started trying to prepare me. She said that sometimes organs grow outside the body but most cases when they are born they will have surgery and then they will have normal lives. Me and my boyfriend were okay with that, she was our daughter and we would love her no matter what.

Micah and her daughter Ambra Storm, baby with anencephaly

We entered the room and my doctor's face said it all. Something was majorly wrong. She asked us if we had heard of anencephaly. We said no and she told us that our little girl who we had just seen on the screen was not going to make it. She told us how her skull had not formed and that they didn't see a right kidney. She also only had one artery in her umbilical cord and that she only had three heart chambers.

To tell you the truth I didn't hear much of what she was saying. I nodded and smiled back at her. I kept thinking did she say terminal? I looked at Kyle and his face looked like he was in shock. I knew my mother was still talking with my doctor and asking lots of questions. I just couldn't figure out what they were saying. I heard "can't regulate body temperature" and that is about it. Later my mother told me what the doctor said and I was better able to understand but I still didn't get how she seemed fine to me. She moved all the time and felt normal so how could this be?

The doctor gave us the option to terminate the pregnancy but Kyle and I didn't even talk about it. We shared a look then I turned to the doctor and told her no. I knew that when God was ready to take her then He could, it was not my choice, and I would carry her as long as He saw fit. The doctor left the room and let us have time processing what we had just been told.

Then we left to tell Kyle's parents about the diagnosis. That is when it really sunk in. I had finally begun to get excited about having a baby. I had started dreaming about what I wanted for her and what we would do together. A few days before the ultra sound, my boyfriend and I had ordered the crib and car seat. We had decided on Precious Moments as the theme for her bedding. I imagined her first Christmas since her due date was December 14. I figured we would spoil her rotten. Now everyone was telling me I wouldn't have her for Christmas.

My doctor called a few hours later and had set me up an appointment with a maternal fetal medicine doctor and a genetic counselor to get more detailed sonograms and get some more information about anencephaly. Later that day, Kyle and I decided on the name Ambra Storm. The next day, I started doing tons of research. I needed to know what was about to happen. I was scared to be a teen mom. I never knew I would have to deal with losing my daughter.

When I went to the medical center they gave me four ultra sounds and spent a lot of time with me. It was great to see my little baby up on the screen again. Of course she was like me and was stubborn. She had her butt up in the air and wouldn't let us see her head! From what we could see it was confirmed that she did have anencephaly. We learned that she did have a right kidney but it wasn't functioning. She also had four heart chambers. They thought she had a clubbed foot, but later found out that she didn't. I found out I had polyhydramnios (to much amniotic fluid). I was told we could choose to have it drained, its the same procedure as the amniocentesis, we declined the offer. The doctors said within 24 hours the fluid would be back so there was really no point.

I was so blessed during my pregnancy to be able to have ultrasounds whenever I wanted so I got them frequently and loved seeing her. Even though every time we went her butt was up in the air and throughout all of them we never saw her head again except for that ultra sound where we got the anencephaly diagnosis. During one of the u/s sessions the doctor ended up having to tilt me so my legs were over my head to try to get Ambra to move, but they had no success. She was kind of stubborn, she took after me.

After this visit we constantly made plans. The birth plan was the hardest because you're looking at all the "what ifs" and you have to make a plan. I knew what I wanted to happen if she was born still and what was to happen if I was blessed to take her home.

Micah and her daughter Ambra Storm, baby with anencephaly

The hardest part was the funeral preparations. I kept thinking I'm 17! I'm not supposed to be making my daughter's funeral plans!

Ambra loved to be rocked to sleep (when she finally did sleep!) and always got scared at loud noises. This made football games not so fun for me. She was always so funny. She would kick a few times then stop for 3 minutes and then you would just see my belly bounce up and down. It was like there was a party going on in there!

Due to amount of amniotic fluid I had it was getting hard to breath. I was so huge! We decided to be induced on November 10, 2011. Exactly 35 weeks and 1 day.

At 5am that morning I was admitted into the hospital. When I came in I was dilated to a 2 so they gave me 2 rounds of cytotec orally to try to dilate me more. The only good thing about the excess fluid is I wasn't feeling most of my contractions. Which from the monitor looked like they were coming fast and hard. At noon they checked me again and I was still only dilated to a 2. But around 1pm, I started to have back labor and the contractions hurt really bad. The doctor wouldn't give me an epidural yet because I still wasn't in "active" labor. They wanted to wait until my water broke naturally before giving me an epidural and I didn't want anything to make me sleepy. I didn't want to miss any part of the delivery but it hurt way too much so I took 1mg. by IV of Stadol.

About 5 minutes after they gave me the medicine my water broke. I don't remember much after this. The meds started working and I was in and out of it for the next 2 hours. I remember saying my water broke and I remember the feeling. I know it was a lot of fluid and it kept on coming. I felt bad for the poor nurses there was so much to clean up. The next thing I remember is the nurses telling me not to move while they put the epidural in but I couldn't control my body at all. I kept trying to tell them I couldn't help it but everyone said I wasn't speaking English it was more like baby talk. In my mind I was making complete sentences and no one would listen to me. It was so frustrating.

Anyway, skipping forward since I slept for the next few hours off and on, Kyle tells me goodbye and that he's going to go grab something to eat since it's looking like it's going to be a little while. So he leaves and my nurse comes in and checks me and says it's go time. She tells me to give a little practice push and then tells me do not push anymore. Apparently Ambra was crowning. I had someone run out to stop Kyle before he drove off and then the real fun started.

I'm so thankful for the epidural, I didn't feel anything, I remember during my pushes I was laughing and having a good time.

Looking back I think I knew something was wrong when I hadn't felt Ambra move. She was a wild one most of the time! I didn't want a fetal monitor on during labor because I didn't want to know during labor if she passed away. The doctor gave me a very brief look while I was pushing and I knew something wasn't right, but in an instant she was telling me to push again. After 20 minutes of pushing Ambra was here. They quickly placed her on my chest and cleaned her off.

No one spoke.

I remember giving my mom a look and she nodded back at me. But the words 'she's gone' never were spoken.

Kyle didn't realize it till about 10 minutes after she was born. He had never been around babies and didn't know they were supposed to cry. He didn't know she had already passed away.

She was born at 7:19 pm she weighed 2 pounds and 13 ounces. She was 15 1/2 inches long which 8 of that was all legs!

The nurses were amazing and one had dealt with a baby with anencephaly before so she knew how to handle everything. While the nurses attended to me, Kyle gave her a bath. After we had put her head dressings on we let our family in. The hats we bought her didn't fit but we found a sock looking hat and it fit just fine. We had wanted a photographer to take pictures of her with some outfits that we had bought but she was so tiny the outfits would just look like they were eating her. So we let our family in and had our amazing photographer.

While everyone passed her around there was a sense of peace in the room.

Of course like any mom I started counting her toes and realized she only had 9, then her dad pointed out they were like his feet. His pinky toe wraps under his other toe. I started laughing at how many of our features she did have. She had my black hair and her daddy's long eyelashes and my cheeks and both of our long legs. She had my mother's chin and my family's nose.

We wanted to get her hand prints but her little fingers wouldn't uncurl. We also tried to get the plaster molds of her toes but it turned out we just got four toes (the mold sets really fast) but I love looking at it because it shows how briefly she was here - just enough for her little toes to make a mark.

Micah and her daughter Ambra Storm, baby with anencephaly

I don't think I really cried until it was time to hand her over to the funeral home. My parents and I had talked about this because we knew that would be the hardest part. If the time came where she was getting really stiff they would take her for me. So it was time. Kyle and I dressed her and said our goodbyes. I placed her in a small basket and gave her to my father so that he could give her to the funeral home.

Like I said, I don't remember much, I thought I only had her for an hour or two but it was actually around three and a half hours. I wish I had more time with her but I know it was probably for the best. She was so precious and that short time was the only "Precious Moments" I will have.

I stayed in the hospital 24 hours.

Saturday afternoon, two days after she died we had her funeral service. While I was still carrying her we had picked everything out. The funeral home provided her casket with no charge and many other people around town tried to help contribute. I don't know if you might think its weird but her service was butterfly themed. When my mother and I were looking for poems to put on the programs we found a butterfly poem and loved it. A butterfly actually landed on the flowers on her casket during the service. So now every time we see a butterfly we think of her. The only part of the funeral I wasn't prepared for was seeing the casket. It was so tiny but the most perfect shade of white you could ever imagine.

Throughout my pregnancy it was important for me to not mourn her. She was still alive and I wasn't going to mourn her until she was gone. Many times that was hard because I started mourning the dreams I once had. Since her due date was in December, I often imagined her first Christmas. After she was gone those dreams started becoming nightmares.

Currently, it's now a month down the road and I'm trying very hard to let other moms with anencephaly babies see what we did with our little Angel. When I was researching and reading all these stories it really helped to see what other moms wish they had done differently. So looking back here is my advice, if I could remember who told me it was time to get her ready to hand over to the funeral home, I would be furious with them. I was very reluctant to give her up but I felt like everyone would think I was losing it if I wanted her to spend some of the night with me. So I let them take her away. I don't think I realized that would be the only time I ever had with her. Do not let what others think affect what you do with your Angel. I did and I regret it very much. I wish I had more time because for one - I don't remember most of it and two – I'm supposed to remember three hours with my daughter for the rest of my life. So that is my biggest regret and my advice to you.

I hope this helps and if there are any questions, I would be more than happy to help you and talk with you. I know how hard this time is.

 

Update November 10, 2019

Happy birthday Ambra Storm!
I can't believe you would be 8 today. That's incredible that so much time has passed. There's been some ups and downs.
I feel like I've been really open and honest about my journey with Ambra and even now later on In my life I have 2 beautiful children and I'm still honest about her loss.
My heart still aches for her, yes she's amazing and I'm blessed to have had such an angel, but it aches.
That being said as the years go on I'm learning that I'm not mourning her anymore. How strange to say that. I don't know if it's that I'm a little wiser than my 17 year old self but it's true. I don't feel that deep overwhelming pain. Although I did noticed something, about a year ago but haven't been able to put it into words.

I wasn't the only one that lost something that day. I know in the months after her passing I sure acted like I was the only person that experienced a devistating blow but, there was another parent. There where grand parents missing a grandchild.

When we all think back to Ambras delivery there's always comments about how peaceful that room was. How there was a presence that could only be explained by God when you crossed that doorway into our hospital room. We all knew something amazing was happening in there. But I also think back to the months after how hard I fought to run from that peace and serenity. I've often said before the months after and hours after are all a big blur. I was going through the motions of life but not really taking anything in. For years after I had to deal with those concequences. The one question I always get is how did you handle it after she passed. My answer never really changes. We were kids, my temper, my emotional control was severely lacking. I also don't think there's a right way to handle laying your baby at 17 years old to rest. So I tell them handle it however you can.

Last year her birthday passed and I didn't feel like posting anything. The one thing I really wanted to say I just wasn't really ready or I didn't know how without upsetting anyone. Then I remembered how open and honest I have been about this whole experience and about how much of a blessing she is to me, and it's not always easy.

I wasn't the only one who lost something that day. Ambras dad lost a daughter.

For a long time after word I was really really angry with him because he wasn't hurting like I was. It wasn't until talking to my husband now that I started to understand. My loss was completely different from anyone else's. She was mine. She grew inside of my body. I felt her kicks, I felt her every day and night. My husband and I were taking about our daughter Rayne and how even though Michael was a wonderful dad throughout our pregnancy the bonding part for them started when he could hold her so of course there are two very different emotional connections there.

It hit me, I had been holding on to some resentment! After years I had been wondering why he didn't grieve the same way. I thought it didn't hurt him as badly. Pretty selfish on my part.

It makes you think!

My mother grieved. Not only for her grandchild but for me, her daughter. As a mom now to Rayne I can't imagine her going through anything like that and not being able to fix it or take her pain away. That's what we want to do as moms. My whole family really.

So this birthday and last was more about reflection and letting go. It's about understanding and reliving I was not/am not ever alone.

I'm not going to say it's easy, pain hurts, loss hurts. I'm so thankful that my children are patient with me and know that sometime mommy freaks out just a little bit when she's not in control because I don't want to loose another precious angel.

I want to add on that note that I'm also very proud of Ambras dad.
We don't talk anymore. Which I struggled with in the begging. I very much thought he was my only connection to her and that hurt when that relationship ended. As we know God has big big plans. I just didn't know any of the blessings that where headed my way. I'm sure he can say the same. Every now and then mutual friends will tag a post and I get a sneak peak into his life. I'm very very proud of who he has become. Our 17 year old selves would be amazed at the things we have overcame in our lives.

Ambra was one of my biggest blessing, lessons, and stories that made me the woman and mom I am today. I know I'll see her again, and she can meet her sister and brothers and it will be the most beautiful thing I can image.

Until then fly high precious.

 

Read the story of Micah's mom April.

 

 

Last updated November 11, 2019