Wednesday, October 13, 2010

Mom to Layah Faith
Born June 2nd, 2008
Born into Heaven June 8th, 2008
Alabaster, Alabama

My husband Matt and I have been married almost 8 years. We have an 8 year old, Tobias Gabriel, who we call Tobi. Tobi was born September 8th, 2002, at 26.4 weeks and weighed 2 lbs and 3 oz. He was born in 59 minutes from the time we arrived at the hospital, pulled the parking ticket out, and they pulled him out emergency c-section. At the time, it was unknown why Tobi was born so early. I had been followed by the high risk Maternal Fetal Medicine doctors at UAB due to a rare (only about 600 cases in the world) metabolic muscle disease I have that is predominantly diagnosed only in males. All I could do for Tobi throughout those long days and nights, (108 days in the NICU to be specific) was to pump breast milk, which I did for 15 months. The doctors and nurses call it "liquid gold" for all babies, but especially preemies. Statistically, the survival rate order is black females, black males, white females, white males, so they call the white males, "wimpy white boys", but we have a different label, our miracle son of God. Tobi was discharged from UAB Hopsital 3 days before Christmas. It was the best Christmas present ever! Tobi's had 10 surgeries primarily due to the BPD (Bronchopulmonary displesia) lung disease, and secondary, due to being born so early. He has bilateral sensorineural hearing loss and wears hearing aids, but is not deaf, and has been aided since 13 months. It's all he knows. The are his "ears". He is extremely bright, and most who meet him, would have never guessed he was so tiny at birth.
So, with Tobi being in and out of the hospital for weeks at a time for the first 4 years of his life, we waited to have more children. Finally in 2007 we were ready and conceived in December. This time my OB would also put me on progesterone shots at 16 weeks that are given weekly, sub muscular, until 36 weeks. UAB did a research study that showed the shots reduced premature births by 30%. So along with that, and extra folic acid, we hoped and prayed we would not have another preemie, especially another micro preemie. 
Everything seemed to be going great throughout my pregnancy. We found out the week after Mother's Day 2008 that we were having a girl and we were thrilled. Tobi, (who's middle name, Gabriel, means "messenger") was not surprised and had told us all along that he wanted to see his baby sister. Over the next couple of weeks I had some concerning symptoms and was seen at the maternity triage for some premature labor, but nothing progressed. 
However, they were concerned I seemed to be dilated 2 cm at 20 weeks. My OB decided he would see me weekly to make sure nothing progressed. The next week, no change. Then Memorial Day weekend, everything changed. Tobi and I attended the annual UAB NICU reunion on Saturday, which we hadnt been to since he was 2. It was nice to see the faces of doctors and nurses that had been God's hands in saving Tobi's life. Little did we know, some of them would become family to us once again. Then Sunday night, at 23.2 weeks, I woke up to go to the bathroom and felt my pajama bottoms damp. It wasn't a good sign. My water hadn't broken, but by the time we go to the hospital, I was dilated 8 cm and had not had the first labor pain or contraction I'd experienced with Tobi for over 12 hours. So finally it was clear, my diagnosis was an "incompetent cervix". They did everything they could do to delay the inevitable delivery. I was given steroids, antibiotics, and magnesium. After 12 hours, it was decided that due to risk of infection, our tiny precious baby girl, we had named Layah, was to be born at 23.3 weeks. None of us knew if she would live once born, but we knew all the risk and challenges of having a micro preemie, and the fact she was female, was on our side. 
This birth was very different than Tobi's. With both our children, we've never been able to experience the joy of hearing our babies cry when delivered. Layah was taken by the neonatal team to the NICU, where my husband was taken while I recovered shortly. Layah Faith Shelfer was born Monday, June 2nd, 2008 at 3:18 pm, and weighed 1 lb and 4 oz and was 11 inches long. Her eyes were still fused shut, but my family said that as with Tobi, she looked like her daddy. Layah was on very little oxygen, which was completely different that the first 2 weeks of Tobi's life. They warned us about the likely deterioration after 48 hours, but Layah did not. She was a fighter, and was doing great. As with Tobi, I pumped to give her what I was able to give Tobi. But by Saturday morning, things were not as good. We were told Layah was bleeding a bit, and she'd been given multiple blood products. As we watched that afternoon, her heart rate dropped drastically and we almost lost her. The neonatologist stabilized her and I told my husband I could not bare to be on this roller coaster of up and down, so close to death and then back. By 11 pm that night, as my best friend/sister Joy and I were visiting with her in the nursery, Layah took a turn for the worse, and I was told to call my husband back up to the hospital, along with any family I wanted to be present. 
Surrounded by my family and 2 closest friends like sisters to me, we held Layah for about 2 hours before I felt her tiny body express to me, "Mom, it's okay. Let me go to Him". She was to be heavily sedated, but she grasped the ET tube and appeared to pull. We let her go around 2am. Our UAB NICU family was wonderful to us. They took her and cleaned her up and dressed her in a handmade pink dress that fit her tiny 1 lb body. I will never be able to smell baby lotion the same again. We allowed them to take pictures, which at the time was very morbid and weird to me, but now, they are what I cherish. 
We buried Layah on June 11, 2008, which happened to be on the day that my mom's 2 year old brother Ronnie, (who Layah was to be buried behind) had died of the croup, in the 40's. Our family does not believe in "coincidences". Another important date, was that my grandfather, buried next to them, died on his 80th birthday, September 26th, and that was my due date with Layah. 
The summer was very difficult for me, but God revealed His heart to me in ways I'd never experienced before, nor could have ever, any other way. I don't understand it, dont like it, but I do know that His ways are not our ways, and He has a plan. I feel Layah was spared so much from the earth. I mean, she will never know heartache, disappointment, sadness, sickness, etc. Of course, we see her 6 days of life, as a short time, but in actuality, all of our lives, even if we live to be a 100, are but a breath when in relation to eternity.I still miss her terribly and think of her many times throughout each day, and will strive to live a life that makes her and our Heavenly Father proud. I have been given many opportunities to talk about her, because of my memorial tattoos for her and of her actual feet prints, and through the bereavement services at UAB RNICU, and a nurses conference that is coming up in November 2010.  It's comforting to have someone who understands your pain and can just let you cry, be angry, or reminisce about the life, however short, of her child. I also look forward to one day, after we have all of our children, (even one we hope to adopt from China), becoming a pediatric nurse. We have since had a full term baby boy, Luke Jeremiah (you'll have to read the blog to find out how prophetic each of our children's names are!). He just turned 1 September 28, 2010 and was a healthy, full term 38.4 weeks thanks to a surgical cerclage at 12 weeks and progesterone shots from 16-36 weeks. So, that's the "summarized" version!! God Bless!
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