Our Story

It’s a girl!

“May your father and mother be glad; may she who gave you birth rejoice!” – Proverbs 23:25

My second pregnancy was very different from my first – more morning sickness, less fetal movement (though consistent and always within normal ranges of daily kick counts), and a much more comfortable final month. But one thing was the same: Eliza was in no more rush to greet the world than her sister was nearly two years before her. For the second time, we made the decision to induce almost a week after my due date. Ten hours into labor, I started pushing, and five minutes after that, Eliza Emmaline was born! She had a tight double cord wrap around her neck that needed to be cut even before she was completely delivered, so those first moments were scary. She didn’t cry like Amelia did, but the Apgar score went quickly from a 6 to a 9, and I was congratulated on my “perfectly healthy baby girl.” The pregnancy had led me to expect that Eliza would be more quiet and relaxed than Amelia, but I couldn’t help but worry at least a little when she went through the first night and the next morning with hardly a peep. She didn’t cry when getting her heel pricked to test blood sugar levels and was slow to latch and nurse. But my concerns were met with reassurance at every turn, and I was even told by the OB on call that I could go home a day early if I chose to. Apparently, tight cord wraps often lead to a 24-hour period of being “stunned” in which infants often refrain from crying and eating as a baby typically would. Generally, though, it corrects itself within a day or two, so nurses encouraged me to enjoy the break…promising that I would be “wishing she’d be so quiet at this time tomorrow.” Little did I know I would be in the NICU at that time the next day and for many, many days after.

 

The moment it all changed

“Do not let your hearts be troubled and do not be afraid” – John 14:27

I spent a large portion of the day after Eliza’s birth alone, resting and journaling in our recovery room while she dozed peacefully in the rolling bassinet beside my bed. My mother and sister-in-law stopped by to visit and see the baby after a fun dinner out, but they had just missed Eliza, who had been taken to the nursery for a quick calorie boost after her latest blood sugar levels remained low. I was told she’d be right back, so they decided to wait with me. Shortly afterwards, Derrick showed back up after spending the afternoon with Amelia at home and decided to go find out for himself what was taking so long. As the minutes passed with no baby and now no Derrick, I started to worry. But I assured myself that if something bad had happened, I would know. Cheri and my mom needed to get back home, so we began walking together towards the well baby nursery. We turned a corner and saw Derrick, who was not only without a baby but who was being escorted by a woman wearing scrubs and a serious expression. Time stopped. I knew instantly that something was wrong, and my fears escalated even more when I was asked to go back to the room so we could talk.

 

Life in the NICU

“Come to me, all you who are weary and burdened and I will give you rest.” – Matthew 11:28

Walking through the doors of the NICU unit was surreal. Everything was surreal. I don’t remember what I was thinking as I scrubbed for the recommended 15 seconds at the entrance sink, and I don’t remember the walk down to Room 8, where I would spend most of the next five weeks of my life. I do remember the moment I saw Eliza in her new bassinet. Her tiny perfect body was covered with wires and tubes, and she seemed off limits. I didn’t know what my role was as a NICU mother…wasn’t sure if I could touch her or talk to her. I felt raw and vulnerable, moving through the shock and grief and fear in front of a room of strangers. The neonatologist on call had just arrived, and I remember hearing the word “neurological” several times and being confused about how that could possibly relate to what put her there – turning ashen when the donor milk was given through an NG tube earlier in the evening. Then again, I was confused about everything. The rest of the night was a blur, ending with a late MRI and instructions to go back and try to get some sleep. Around 2am, we got the good news that the MRI came back normal. It was the first of many, many tests that would come back in the weeks to come, and every single one came back normal with the exception of a molecular microarray showing an unusual addition on the 8th chromosome. More tests were ordered, this time for Derrick and me. The waiting game that had initially seemed unbearable became our new normal, and I finally let go of needing to find out what was causing the hypotonia and feeding struggles. Every positive result led me to a hope that Eliza was just our “Little Engine that Could,” meeting her milestones at her own pace but with the same destination that I had always imagined for her.

 

It’s Prader-Willi

“For you created my inmost being; you knit me together in my mother’s womb.  I praise you for I am fearfully and wonderfully made; your works are wonderful, I know that full well.” – Psalm 139:13-14

On Friday afternoon, just over two weeks after first walking through the NICU doors, we got the diagnosis that changed our world. Derrick had returned to work, so I was at the hospital with my mom. We got word earlier in the day that Eliza’s SMA test came back negative, and a massive weight of worry lifted with the reassurance that she did not have a disease that limited her lifespan to only 18 months. I cried sweet tears of joy and was even more excited to hear that the Prader-Willi syndrome (PWS) test results were expected later in the day. It was sooner than we expected, but I had relinquished my worry that it would come back positive just days earlier. I had never heard of PWS until our first day in the NICU, and even then, I first found out about it from my husband. Derrick had a gut feeling that it was PWS from the very beginning and had asked all the specialists specifically about his or her thoughts. And every single one said it was doubtful. Even then, I feared it. It wasn’t until the genetic counselor read us the molecular microarray Wednesday night, assuring us that PWS would almost certainly be evident on the report, that I breathed a sigh of relief. So I was happily daydreaming about the night’s celebration and wondering to myself whom best to ask for champagne advice when I walked into the NICU and saw the neonatologist leaving our room. I remember thinking it strange that she was there since it was already late in the afternoon on a Friday, but I was not expecting what she had returned to say. In very plain words, she read me the report. The Prader-Willi test result was in, and Eliza tested positive. In that moment, my world came crashing down all over again. Amidst the disbelief and the fear and the deep, deep sorrow was a reminder that this, too, was God’s will. That Eliza was His creation. That he had created her inmost being and knit her together, and that she was fearfully and wonderfully made. I said it out loud to my mom and to Derrick and probably to a half dozen nurses…nurses who wove in and out of the room, crying with me, praying with me, allowing their hearts to break open with me. It was the hardest night of my life, but also the most intensely loving one. I had come undone, but the Lord was there. He was cradling me…both through His word and through the beautiful people placed so perfectly in my path that day and for many, many days and nights to come.

 

Coming home

“Weeping may remain for a night, but rejoicing comes in the morning.” –Psalm 30:5

Three long weeks after learning Eliza’s diagnosis and just over five weeks after we entered the hospital, we were on our way home. As much as I had yearned for that moment, it was incredibly bittersweet. As invasive as they seemed at times, the monitors were a source of comfort…proof of Eliza’s wellbeing, and leaving them was hard. But more than anything, I grieved the loss of the village I found in the NICU. The nurses, NPs, doctors, and lactation consultants were invaluable not only in their care of Eliza but in their support of me as her mother. I will never forget their kindness. Never. But at the end of the day, we wanted nothing more than to be home, and the thought of sleeping with both my girls under one roof was pure joy! Eliza left the hospital on a Thursday afternoon, and my mom was able to stay through the weekend to help ease the transition before more help arrived from Derrick’s aunt. I can’t imagine moving through those first days and weeks without their help, but we made it through even after they left and are now home “alone” with just the girls. And despite all the fear and worry that creep up on a daily basis, I still have moments when I look at the bassinet by our bed or the pack-n-play in the living room and am reminded of just how lucky we are to be here…to put in use the things that had sat empty for so many weeks, tugging at my heart on every “visit” home from the hospital. The gratitude washes over me, and for a moment, it fills my whole heart!

 

Going forward

“For I know the plans I have for you, declares the Lord, plans to prosper you, not to harm you, plans to give you a hope and a future.” – Jeremiah 29:11

There are so many things I don’t know…so many things I still wish were different. If I could take this away from Eliza, I would do it. In a heartbeat I would do it! But I do believe deep in my soul that it’s all okay, and even more, that it’s all as God intended. That it’s even beautiful. At the end of the day, we have been given the opportunity to see life through a new lens, and my hope for this blog is to capture what I can from that and share it with others. As a mama, I am excited and hopeful and terrified all at once for Eliza…I think that’s true for all mamas. And I struggle with living in the moment and letting go of the sometimes desperate need to know and control what is to come. I don’t know if that will ever change. But I do trust in the Lord’s promise that His plans are good…plans to give us hope and a future!

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14 thoughts on “Our Story

  1. Julie Thank you for sharing your story! It means a lot to me to read your account of your experience with Eliza. I am so touched by your faith and your sharing of feelings! I continue to pray for you and Derrick and Eliza and Amelia.
    Love,
    Uncle Rich

    Liked by 1 person

  2. God bless you Julie and your girls. This is beautifully written. Glad I took the time to pause and read…not a habit. I will pray for your family, immediate and extended. If there is anything I can do please let me know.

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  3. This account is a real gift to family and friends, but it will also be a comfort to other parents looking for connections and support. So informative and inspirational. And I love the photos of my beautiful nieces!!!

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  4. What a beautiful gift you are giving us by sharing your story. Your poignant accounts of your precious daughter are so heartfelt and will undoubtedly be appreciated by so many. Eliza and Amelia are so blessed to have you and Derrick as parents.

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  5. Paul said, “In all things, give thanks.” So for today and each day, thanks be to God! Bless you all – you are in our prayers.
    Linda Adams

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  6. Julie, you continue to be such an inspiration to me! Your strength, grace and loving heart are completely angelic! My heart aches for the circumstances in which we met, but at the same time I’m so grateful for having the privilege of meeting you and your family. Thank you for sharing your written words and, as always, your family is in my prayers! The pictures are beautiful!!!

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  7. Dear Julie and Derrick, I was so moved by your beautiful blog. I know that God intended you to be the parents of Eliza. With your strength and faith and God’s help, I know you will have the courage to tackle whats ahead. What a beautiful gift you have in writing this story. Love and prayers, Pauline Mifsud

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  8. Julie and Derrick, meeting you and caring for Eliza was such bittersweet experience. She couldn’t have chosen a better family to be born into. I am looking forward to following your journey; both the ups and the downs. I am one of Eliza’s many cheerleaders and think of you all often. Your story and family is beautiful.

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  9. Julie and Derrick, I am so thrilled that I can continue to follow your journey. Meeting your family and caring for Eliza was, at times, so bittersweet. She could not have chosen a better family and I have confidence that your instincts, faith and love will continue to guide her as she grows. Your family and story are beautiful.

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  10. Reading the start of the journey more than three years after it started was so different. I asked God at that time to make Eliza’s life as good as it could possible be and He has.

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