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Nine months. Nine months is a long time. It's how long Ali and Joe tried to get pregnant. Nine long months of pregnancy tests with just one line. Tears and pain, wondering and questioning. And in that ninth month, when all hope was dwindling.......finally, a positive pregnancy test (or 4!) Their prayers had been answered and they were overjoyed to finally become parents!
Two weeks later, Ali had some bleeding and went to see the doctor, where she was diagnosed with a blighted ovum and empty gestational sac. No baby.
However, having more blood work done over the next few days and seeing her Hcg levels rise, it was clear to her doctors that in fact, she was actually still pregnant. They repeated an ultrasound soon after and witnessed a miracle....there was a little heartbeat!
Fast forward to about a month later, Ali's doctor could not find a heartbeat again due to a retroverted uterus, so she was again sent her for another ultrasound, but her doctors were not overly concerned. Chances were, things were fine and the pregnancy was progressing. To Ali and Joe's suprise, there was a heartbeat! However, this ultrasound was also when Ali and Joe learned there was a large amount of fluid on their daughter's brain, as well as the baby having an enlarged fetal bladder. They were then referred over to the Children's Hospital of Philadelphia (CHOP) for more testing and baby Mira was also diagnosed with Hydrocephalus. This means she is unable to swallow in the womb. Her brain stem is impacted to the point that she won’t be able to breathe, have a gag reflex or eat on her own after her birth. As her mom wrote, surgery would not change this; it will only make her suffer.
After her birth. doctors believe she may only live minutes, hours... a day at most.
Mira will not be going home from the hospital with her mom and dad
For this reason, Ali and Joe are parenting their daughter Mira with every single minute they have to spend with her, while she's here with them in her mommy's belly. They read their favorite books to her daily, as they know she is listening to their voices.
They've taken her to visit their respective colleges. She has even attended a Philadelphia Eagles game and experienced a train ride! Her mom and dad are not looking at what is being taken from them, but instead, focusing on the days they have been given with baby Mira. When the time comes to meet their little girl, they'll pray that minutes can turn into hours and that hours can turn into days. They'll want for her, what any of us want for our baby's when they are born. They'll want her to feel warm the warmth of their bodies, and the love they have for her. And oh how she is loved; so very, very loved.
Says Ali: I have dreamed of being a mother since I was still a child myself. When women dream of becoming a mother, they don't think about anything going wrong. No part of my pregnancy has been "normal." I have not be able to to plan a nursery, have a baby shower with my family, or blissfully picture my child growing up. Instead I have had stressful weekly OB appointments, planned a funeral, and learned medical terms I never thought I would have to know. My husband and I's most important goal through all this is making sure our daughter's short life is celebrated and given as much value as possible. Desiree has been a big part in helping us reach this goal. When Joe and I went to Desiree to have our maternity photos done, we were both nervous, thinking it would be another reminder about how short our Mira's life would be. Instead, Desiree made our day all about Mira's LIFE, not her impending passing. Joe and I feel like a "normal" pregnant couple for the first time and we were able to feel the full joy of the life growing inside me. With Desiree ready to be present at the birth of our daughter, we can feel certain that we will have our memories from her birth captured in a beautiful way. Having this support has helped to eased our burden of making sure the our daughter's short life is as perfect as possible. When you are traveling through the hardest journey you will ever face in your life, any kindness and support means the world. We are so appreciative of the services that have been offered. Also during a time when finances should not even matter, you can't help but be overwhelmed by the amount of medical bills, funeral expenses, and travel costs that keep piling up. While we have been blessed to have financial aid and friends and family to help, having any service offered for free is such a relief. I am not sure anyone could understand how much these services mean to couple facing the loss of a child unless they have experienced it themselves, but I can tell you it means a little bit of normalcy, some relief during an overwhelming time, and ton of memories for the short time you do have, which is truly priceless.
To read and following along with the journey of Ali and Joe's pregnancy with Mira and also, her upcoming birth, please use this link:, http://babyferraram.blogspot.com/
Three Little Birds is honored to have been able to provide one-on-one palliative care support including a Maternity Family Portraiture Session and Belly Cast, free of charge, to Mira's family through our Palliative Care Program. The focus of this Program is to focus families on parenting, bonding and celebrating their baby, regardless of the outcome or uncertainty of their future.
This would not be possible without your donations.
Kristen Samuelson, SBD, Founder & Director