Wednesday, March 11, 2009
A New Journey to Life
So i figured it was time that I started a blog. This blog entry may be fairly long because it's my first. So first let me give those of you who don't know me personally some history, although some of it is mentioned in my profile. My husband Matt and I have been married almost 7 years. We have a 6 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 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 who are 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 look forward to the day when I can counsel and support other moms who will walk this path of losing a baby. It's comforting to have someone who understands your pain and can just let you cry, be angry, or remaniss 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. So, that's the "summarized" version!! Now let me catch you up to date.
We are expecting again, Praise the Lord! I will be 10 weeks tomorrow, and happened to be home with a sick little guy today. Tobi has a nasty stomach bug and since he had the fundoplycation, (reflux surgery), he's not able to vomit, so you can imagine. He'll retch and gag and retch, but nothing, everything ends up coming out the other end. As they say, as mom's work is never done. I wasnt sure if I was ready to start this blog, since I only had 2 entries with Layah's blog, but I wanted to act in faith, and document our journey through this pregnancy that will, (and already has been), so different. They say every pregnancy is different, and boy is that true. With Tobi and Layah, I had a little bit of morning sickness, but only for about a week, and it was very mild. I did not have any migraines with Tobi, but had at least a handful of bad headaches a week with Layah from about 10-18 weeks. Well, the nausea is worse, this time. It started at 6 weeks-very early compared to the previous 2, and has lasted about 4 weeks, but I seem to be turning the corner on that, but the headaches have begun. I feel like I've already started showing, which I know is very early, and I was in awesome shape from all the workout classes I was doing 4-5 times a week. Oh well, I'm ready, boy am I-we are ready. I go for my next OB apt next Tuesday, and we plan to do the cerclage sugery-where they will stitch up the cervix- the 27th of March, Friday. I am very encouraged, and will share with you the signs around that the Lord has continued to provide, as hope. For those of you who do not know those experiences, I will also later share the visions I feel God revealed to me, weeks before Layah, and months after Layah. I've only experienced this about 4 times in my life.
I hope this blog to be a documentation of life given, after a life taken, and also, that it will continue to help me grieve for Layah, and encourage other moms who've experienced a similar loss. Start praying, if you've not already, as we have a long road ahead!