Alia’s Story

My story begins back in 2016 when I found out on a hot July day that I was unexpectedly pregnant.  I was nervous because I was not in the most stable relationship at the time, but I was excited because I had always wanted to be a mom.  At about 8 weeks pregnant I was told at an ultrasound appointment that the “heartbeat is not strong” and that I may miscarry. I went to ultrasounds every couple days until about a week later when I went in for an ultrasound and was told those heartbreaking words, “there is no heartbeat.”  Before I knew it, I was in getting a D&C, feeling sad, empty, and alone.  Two months later my sister gave birth to my beautiful nephew, Eli.  He was born early and was in the NICU for weeks, trying to get big enough and strong enough to go home, which he did.  Eli and I had an instant connection, I still say he is my other kid because we are so close.  My sister had infertility off the charts and had to have a full hysterectomy a year after Eli was born.  At that point I kept thinking, she is my younger sister and here I am without a kid or any prospects of having a kid.  I then decided to meet with my OBGYN to ask her about family planning, she ran some tests and when the results came back she sent me a direct referral to a fertility clinic- that’s never good news.  I met with the Reproductive Endocrinologist and after more tests for her to deliver the news to me that I would have an eight percent chance of becoming pregnant with a stimulated (medicated) intrauterine insemination (IUI) and little bit better chance of pregnancy with In vitro fertilization (IVF).  My heart was broken- how did my fertility become so bad??

Over the next six months I focused on putting out any and all efforts to start my family.  I applied and started the process for foster to adopt, I adopted embryos, and I explored all of my relationships with my male friends that may have potentially wanted to explore a co-parenting situation.  I had decided after a lot of soul searching to transfer one of the embryos I had adopted, so I started preparing my body.  The way the cycle was to work I would be doing my transfer in September.  In the July before, a lifelong friend of mine was in town and we went to lunch, he knew my fertility struggles and asked how that was all coming along.  I explained that I was waiting on the County for the foster care program, but I was also about to transfer an embryo.  He jokingly said he would be my donor but he did not want to co-parent. About three weeks or so later I received an email from the fertility clinic asking if I had started my period because I would need to start medications before the embryo transfer.  I checked my calendar and I was a couple days late with my period, I went into a complete panic, had I entered into early menopause?  I took a pregnancy test and nothing, took another for good measure, still nothing.  I went to work for the day, when I returned home that evening I started thinking about it again and took another pregnancy test and there it was a very faint line.  I dug the other two tests out of the trash and yes, there they were faint lines!! I was shocked!! I ran to the pharmacy and bought another two-pack of tests and both were positive.

The next few months I was convinced that I would for sure miscarry because I was told my eggs were very limited and the ones that I did have were old and bad quality. To my surprise my pregnancy continued and right after Christmas I decided my little girl would be named Amani. Amani was perfect for her because it means desires; aspirations; wishes. My pregnancy was good, I was happy and healthy through most of it. At 34 week pregnant I went in to my OBGYN for a checkup and she took my blood pressure, it was higher than normal and higher than they would like for anyone in pregnancy.  I was tasked to take my BP every day and if it got too high I would need to go to the hospital. The next day was Saturday, March 9, 2019 and my family threw me the best, most beautiful baby shower with every detail highlighting me and Amani.  I was the happiest I had ever been in my life. Even today that baby shower day feels like a dream.

The next day I was home getting ready to head to the hospital for a childbirth class with my mom (my birth coach) and decided to check my BP.  It was in the zone that I would need to go straight to hospital. We stopped at the pharmacy to check it in case my home machine was off- nope, it was reading in that danger zone. We arrived at the hospital about an hour before our class was supposed to start and I let them know what was going on, they took my BP again, within 15 minutes I was admitted into the hospital, within an hour they had decided to induce me.  I was in such shock and I remember saying, “no, I can’t be getting induced, I have a meeting tomorrow.” The joke was on me- they were not letting me go home.

After being induced it took almost 48 hours before Amani came into the world, but when she came she was complete perfection in a little package. Amani was born at 4:52pm on March 12, 2019 at 4lbs. 10oz. She was admitted into the NICU because of being early and so tiny. Over the next eight days I was discharged and quickly turned into a permanent fixture in the NICU. I would go first thing in the morning with my bag packed with pump parts, water, food, extra clothes, etc. and I would leave each evening.  I remember thinking those NICU days were my worst days- having to leave each day without your baby is so hard.

On March 20, 2019 Amani was discharged from the NICU and sent home after she passed her car seat test. It was a rainy perfect day because it was the day we finally got to bring her home. My mom was with us as she knew I could use the support and she was so happy to soak up some more Amani time.

Amani got to meet very close family members, her pediatrician a couple times, and a few friends over the next 15 days.  On Friday, April 5, 2019 my mom convinced me it would be okay to take Amani to the beach for a walk if we kept her in the stroller and away from people.  Up until this point Amani had only been to the pediatrician because we were still in flu season and she was a preemie, all things that required us to be so careful. We took Amani to Carlsbad State beach and walked along the seawall. It was a great day, sunny but breezy and very few people were out.  When we arrived home my mom snuggled Amani, let her sleep on her chest while my mom ate popcorn getting little white crumbs in Amani’s pretty black hair. We still call Amani the popcorn catcher. Then before my mom left for the night we gave Amani a bath in the kitchen sink and made sure to take a few more pictures.

Then on April 8, 2019 Amani and I woke up and snuggled like we did every other day we had together. The day went on like all of the rest of our days of sleeping, feeding, etc. until that afternoon when Amani started screaming and crying to the point she was completely inconsolable.  I remember walking her around the house trying to calm her down and then I took her to her room to rock her in the rocking chair and she had a huge blow out and the screaming and crying stopped. Amani’s face lost a lot of color and she was just whimpering.  I didn’t know what to think- was it all gas? Had my milk been bad?  I changed Amani and then brought her to my room to lounge while I pumped and as I was pumping I looked over at her and she was still whimpering with labored breathing but now I noticed her eyes were not normal, they were not focusing and then she vomited all over herself and me.  I took her to clean up again and my sister was on the phone telling me to get her into the pediatrician.

I called the pediatrician’s office and they said they could not get us in, and that I should take her to Children’s hospital.  I was so upset and frustrated, there was no way I could drive her to the Children’s hospital, it would have been 30 minutes away from our house without traffic.  My mom called as I finished cleaning Amani up and she asked what the noise was as she was on speaker phone.  I said that is Amani’s breathing, my mom (a nurse for the past 40+ years) said take her to the hospital.  I got off the phone and got Amani into her car seat and told Amani to “just stay awake.”  My sister called me on speaker phone with directions to the nearest hospital. We got to the hospital and they took us back to an exam room immediately. From that moment on there was a minimum of 10+ hospital staff in the room examining Amani at any given time.  They took her blood, they sedated her, they had her on IVs, etc.

The next few hours were a complete blur; my mom came to be there for us and the doctors could not figure out what was wrong with her and why they could not stabilize her.  They explained to me that they needed to get her to the Children’s hospital but that she was not stable enough to be airlifted.  Once the Children’s hospital team arrived they worked to try and get her stabilized. One of the ER doctors came in and met with the Nurse Practitioner from Children’s hospital and suggested that maybe Amani was experiencing a heart problem that is common in preemies.  They decided to give her an injection of medication for the heart problem and she responded and was finally well enough to be air flighted to the children’s hospital.  The flight team explained to me I would have to drive there as they did not have room for me in the helicopter with their medical team. We all left at the same time and they told me to pack a bag as I would be there for some time.  I came home, dropped off my car and grabbed my bag (my hospital bag from having Amani just a couple weeks before).  My mom and I drove to the Children’s hospital and on the way, there we called my dad (who is a physician) and explained what was happening, in a calm voice he told me that it would be hard, but it would be okay and Amani would have the heart surgery, but we would get through it.

When we arrived at Children’s hospital we went straight to the NICU per the directions from the flight team.  The reception staff would not let me back right away, so we waited in the waiting room of the NICU.  I had to pump (because this is what is physically happening) and thankfully they had a lactation room where I could go, so I went in and started pumping.  Half way through pumping my mom was banging on the door and said the doctors needed me.  I cleaned up and came out.  We were then brought back to the NICU by a nurse and I stopped to wash my hands and my mom said they don’t want you to wash your hands- now anyone that has ever had a kid in the NICU knows that you MUST wash your hands every time you enter the NICU. We went back to Amani’s room where we were introduced to the head of NICU and she then told me they had done an echo on Amani and her heart was perfect.  So not a heart condition at all. They were now going to do a CT to check her brain.  This took some time because they had to bring the CT to Amani.  Once it was completed we waited then the scans came up and my worst nightmare became reality- Amani’s brain was about a fourth covered in blood.  The neurosurgeon came and talked to us and let us know that there was not much for them to do as her pupils were “fixed and dilated”, meaning there was no brain activity.  Amani had suffered a catastrophic brain bleed.

For me the next 12-18 hours were a complete blur.  Family members arrived at the hospital, I said prayers to any and every God I had ever learned about, met with the hospital team about organ donation, and then I had to make the decision no parent should ever have to make- to take my perfect baby girl off life support.  On April 9, 2019 at 5:30pm Amani was taken off life support while I held her swaddled in my flannel shirt, surrounded by family.  Amani took her last breath at 5:47pm and I had to walk out of Children’s hospital without my daughter.

Over the next several days my family told everyone in my life about Amani’s passing and then my sister and parents started planning Amani’s service. Amani’s service was perfect- it was at the beach (Carlsbad, now known by anyone in my life as Amani Beach), the only place she went in her short 28 days besides the pediatrician’s office.  So many people came out to grieve with me, show support and love- for each and every person that was there that day I will always be grateful for their presence, love and friendship.

Immediately time became so weird, at times it felt like it all happened just yesterday and other times it felt like it had been years.  I threw myself into the grief community and attended all of the groups and counseling sessions I could.  I wanted to do the work to feel different and not be this “grieving mom” forever.  Since then I have learned that the grief doesn’t “go”, it just changes and you learn to live with it and carry the grief along with you just like the memory of your child.

I had started trying to have another baby about 5 months after Amani passed away.  It was so hard because I was still mourning (and probably always will be), but I had my biological clock that was hanging over my head along with my infertility issues.  In early 2020 I found out I was pregnant!! It was a huge mix of emotions because I wasn’t “ready,” but I really wanted it so bad too.  About eight weeks into the pregnancy I went in for my first ultrasound and the baby was measuring at six weeks, so they wanted me to come back in a week. When I went in for the second ultrasound there was no heartbeat.  At this point I was almost numb because the grief and loss was too much to process.  My doctor got me in for a D&C the next day.   My perception of myself continued to change, I was now a person that had been pregnant three times and still had no living children.

On what would have been Amani’s first birthday, March 12, 2020, the world had flipped upside down for everyone as Coronavirus was in the U.S. and numbers of cases had started growing everywhere.  All elective medical treatments went on hold including fertility treatments. I continued to do grief groups and counseling virtually.

Early in the summer of 2020 I met this amazing human I get to now call my fiancé.  Michael was so unassuming and calm, something I had never had in my life before. We spent our first few weeks getting to know each other and to my surprise he was not scared away with all of the loss I confided in him about.  I decided going into the Fall I wanted to start fertility treatments again as things were opening up with elective medical treatments. Michael knew I was going to do this and pursue my dream of being a mom to a living child, we talked about it a lot. Then one day he told me he wanted to be a part of this journey with me and that he would love to start a family together.  Over the Fall we did a couple IUIs and then the one I said would be our last IUI, the day after my 40th birthday, we got pregnant!! To my surprise this pregnancy stuck!!  We did all of the follow up appointments (Michael was always on via FaceTime because we are still in a pandemic) and all medication to ensure our baby would have the best chance.  In January we found out we were having a girl on a virtual gender reveal. And in February we were able to be with family to announce her name would be Anaya. Anaya means God has answered and Gift- this exactly who she is to us.

People talk about the baby after loss as the “rainbow baby” because this is the “rainbow after the storm.”  Anaya is absolutely our rainbow and our joy, but Amani’s life and death will never be viewed as a “storm” to anyone in my life.  Amani’s death, no matter how heartbreaking, will never outshine the love, hopefulness, and happiness she brought to this world in her short 28 days of life.

I feel so thankful to be a part of the project to honor both of my daughters, Amani and Anaya, as well as the other two angels I lost early on.

 

 

 

 

 

 

 

 

 

 

Photos taken by Renee Christine Photography.

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