unnamed-3
Leah
Mom to Lyla
December 4, 2015
Elgin, Illinois

My beautiful Lyla Danielle was born December 4, 2015 at 4:48pm weighing in at a whole whopping 4.12lbs. She was the prettiest baby I’d ever seen, she was the only one of my children with my curls and she was still so perfect even though she was stillborn. This is her story: 

Gastroschisis is a birth defect that affects 1 in 2,000 children. At about 8/10 weeks of conception the abdominal wall doesn’t close and causes the intestines to protrude. Typically Gastro babies are born somewhere between 35-37 weeks because they don’t want to risk any other medical problems. They almost always require surgery after born and are typically in the hospital anywhere between 4-6 weeks after birth. We found out Lyla had Gastroschisis at the 14 week scan.  I knew she was a girl from the start because I was so sick, but doctors also confirmed she was indeed a she at that same appointment. I remember being alone when the doctor came in to tell me. She was talking ninety miles a min and all I heard was “she has a rare birth defect” and then her lips were moving and I heard nothing coming out of them. After my initial freaking out period my Doctor informed me that this defect was not a condemnation for death and said my baby girl had a 90% chance of survival. Seeing as how those odds were so high my husband I remained very optimistic.

When we found out she had it we chose the best hospital in our state, we went to the hospital and took a tour of the PICU, met the nurses, learned the procedures and even met the doctor who would do her surgery after she was born. We left excited knowing our daughter would be in such great hands, but nervous because she wasn’t guaranteed to be out of the hospital in a few days. We even joined a group for children with her birth defect and read and met parents whose children survived and who shared stories of their nicu/PICU days so we would be prepared when she came. We were ready for this, we knew everything there was to know about her birth defect, and had all of our questions answered by the doctor himself when we met him.

Near the end of my pregnancy I was seeing a doctor twice a week for an NST (Non-stress test) and an ultrasound, we even had a few non-movement days when Lyla decided to stop moving and we’d have to rush to the Er. We always joked about how stubborn she was going to be. She’d go long periods without moving, we’d jump in the car and every single time without fail she’d  start moving  as soon as we were In the car or at the hospital itself. So when the last day of her not came it had me thinking “oh, she’s fine, she always does this,” I figured she was going to be fine. 

On the Thursday before she was born (December 3rd I believe) I woke up and watched some tv on the couch and hadn’t felt her moving much at all through out the day. I did everything I knew to do and everything the doctors had told me to do. Hastily I decided to call my doctor and head in to labor and delivery after my husband got of work. The entire way there I felt no movement either, by the time we had gotten to the hospital I told my husband how worried I was. As we pulled into the hospital I got nervous thinking this may be it, she may finally be here! I had been telling myself the reason I wasn’t feeling her move was because she had finally moved down into my pelvis, that sometimes when they are that low it’s hard to feel the movements. Nevertheless I was excited cause Maybe that night would be the night we finally get to meet her. I had to stop at the front desk of labor and delivery to register and it felt like forever until they got us to the room. 

Once in the room they hooked me up to a monitor to see my contractions and listen for her heartbeat. They had a hard time finding it, and when they couldn’t I began to panic. They assured me it was okay, they would just get the ultrasound Doppler. I had them check four times and on the last try, I knew it was reality even though I didn’t want to believe it. From there the nurses decided to induce me. 

The 16 hour labor drained my husband and I. I remember thinking to myself “I have to go through all of this for what, to deliver my dead child.” It hardly seemed worth it, or fair to me. At first I asked them if they could just cut me open, but they told me that vaginal was the safest way. I was not happy with that option, however looking back now I wouldn’t change it for the world. Once she was born the hospital let me spend as much time with her as I wanted. They told me I could leave whenever I was ready wether it was that day or a few days later.

We chose to stay two days, I spent my time rocking her, singing to her and taking mental images and photos of her. We had her baptized, so she’d be with God. I took her clothes off and memorized every inch of her little body, I cut a lock of hair from her head, I changed her diaper, and I said my goodbyes. We left her Saturday night and that was the hardest thing in the world for me to do. I remember walking out of the hospital and just bawling all the way to the car. Before I left the nurses have me her memory box, the pictures they had taken, the pictures now I lay me down to sleep took and her stepping stone. I’m so glad I spent as much time with her as I did those moments, those pictures and that time is what keep me going on my hard days. Today  [at time of writing] is indeed one of those days. Today she would have been eight months.

Love you sweet girl. 

This is the face of life after loss. This is the face of a bereaved parent. This is the face of loss. 
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Comments

  1. I am so deeply sorry for your loss. I have been through it myself in the last few months and it is unimaginable until you are living it and then you are forced to not only imagine but to live it. I am happy you got spend that precious time with your daughter and acquire those special keepsakes. Life with me, those little momentos give you that little bit of strength when you need it most in the very, very hard weeks and months to follow. You are in my thoughts and prayers

  2. Thank you for sharing your story so publicly. You are an inspiration for others. Hugs…

  3. Jim Moreland says:

    I am so thankful for diligent friends. No one can know the pain of a grieving mother. A mother who bore a beautiful little angel instead of a baby. We know that she looks down and sees her mother and she knows that she will see her mother in Heaven and they will be able be together forever. What we suffer on earth can’t be measured but… when they meet in Heaven they will experience unmeasured joy and comfort!

    Jim Moreland

  4. I am so very sorry for your loss.

  5. Elizabeth says:

    Thinking of you and sending you strength <3

  6. I was moved reading the story of your sweet girl. My son was born & passed away 6 months ago today. He was diagnosed with an omphelacele at 12 weeks. We tried to remain optimistic throughout the pregnancy even after I was diagnosed with previa and accreta and hospitalized multiple times. Unfortunately, our sweet boy was born at 23 weeks. He was too small and his lungs were too underdeveloped to even consider recisutation. Thank you for sharing your story. Xoxo

  7. I am glad you had that time to be with your little girl though I am so sorry that time was so incredibly short.

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