My name is Taylor. At the beginning of 2018, my husband and I started trying for our first baby. After 7 months of trying (and years of symptoms), I had strong suspicions that I had PCOS (rapid weight gain, irregular cycles, dark facial hairs, etc.). I went to my OB. He drew blood and found that my testosterone levels were very high. I was told that I did have PCOS and was given Metformin to help with my insulin resistance, elevated testosterone, and to help regulate my cycles. Well only 2 days after taking the Metformin, I found out I was pregnant (obviously I had gotten pregnant without help). I went in right away as requested by my doctor. My progesterone was EXTREMELY low. I believe 4 ng/ml. They told me that they wanted to take more blood the next day to see if the hcg levels were rising and if they were, they would prescribe progesterone supplements. Against all odds and a miracle in its own right, she continued to grow despite "unlivable conditions" as my doctor would put it. They put me on the supplement and everything was awesome for the first 20 weeks of pregnancy (despite all of the vomiting). Around 15 weeks, we found out that we were having a little girl. At our 20-week anatomy scan, we got very unexpected news. "Your baby has extremely short limbs", "dwarfism", and "we are referring you to a high risk doctor" were among the shocking things we were told. After many tears, we finally went to the high-risk doctor two weeks later. There, they told us that they had never seen anything like our case. We were told that our baby's limbs were is less than the first percentile. Until she was born, we saw no/limited movement in the limbs and digits. We were told that she would never live an average life. She would never walk. She wouldn't be able to use her arms or hands. That was a grieving process within itself. While we visited the high risk doctor, our many many ultrasound images and records were being sent to UCLA. They have one of the largest skeletal dysplasia registries in the world. The high-risk doctors were hoping that they could provide insight as to what type she had. On April 2nd, 2019 we finally heard back. "Hypophosphatasia" was among the words in the program director's email. There are several forms of Hypophosphatasia, and our baby had the most severe of them, the perinatal form, about 1:100,000 live births. The markers are hypomineralized bones, shortened limbs, low ALP and after birth there are seizures, choking, hypercalcemia, and respiratory problems among the many devastating symptoms. A couple of weeks later, they did an amniocentesis to confirm. At 39 weeks gestation, on May 6, 2019, my water broke at about 4 in the morning. I went to the hospital and was taken in for a c-section at 11 am. I had a c-section because her bones, particularly her skull were hypomineralized so we didn't know if she would survive a vaginal birth. At 11:48 am, our sweet angel was born. She cried twice. Once immediately out of the womb and once more when they failed to get the breathing tube in the first time. To our surprise, she was 6 lbs 11 oz and 14 1/4 in long (unstretched). At the time of her birth, her lower limbs were the same size as a 22 week old. I didn't get to hold her and I barely even got a peek at her before she was rushed to the NICU. I didn't see her for more than 12 hours...until I was able to get into a wheelchair. The next week was the best of our life. We took a lot of pictures and spent every possible moment with her. 7 days after her birth, she was sedated because her oxygen saturation kept dropping and she was fighting against the machines. After her heart rate dropped and doctors were unable to do anything more (besides chest compressions), she was taken off of the machines and we were finally able to hold her for the first time. She lived for about 30 minutes off of the machines (which the doctors said was unheard of) and passed away in our arms on May 13th, 2019 (her due date). Despite the excruciating pain and sadness, there were angels with us. You could feel them in the room. I felt absolute peace. I know that Heavenly Father was with us throughout our whole journey and that he is still carrying us through each day.
I am so grateful for my faith and the knowledge that I have about life after death. It is my hope that some years down the road, when another mother is in my shoes, she is able to find my story and reach out to find hope and resources. My heart goes out to all of you other moms and dads who have lost a child. It is the worst pain you can experience. Whenever I go to Everly's grave, (in a children/baby cemetery) I am humbled and encouraged by all of the other families who somewhat understand the pain I deal with every day.
Today, we are on our fourth cycle of trying for our rainbow baby. I am one DPO right now. I pray that we can each find peace and hope someday. Remember, you can't put a timestamp on grief.
"If the mountain seems too big today, then climb a hill instead. If the morning brings you sadness, it's okay to stay in bed. If the day ahead weighs heavy and your plans feel like a curse, there's no shame in rearranging, don't make yourself feel worse. If a shower stings like needles and a bath feels like you'll drown, if you haven't washed your hair for days, don't throw away your crown. A day is not a lifetime, a rest is not defeat, don't think of it as failure, just a quiet, kind retreat. It's okay to take a moment from an anxious, fractured mind. The world will not stop turning while you get realigned. The mountain will still be there, when you want to try again. You can climb it in your own time, just love yourself til then" - Laura Ding-Edwards
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