Happy Little Things: Lucy's Story

I have been keeping a caring bridge site for a while now and updating it with medically relevant information that we find out about Lucy. There is a text and picture limit on caringbridge that keeps me from sharing all that I would like to at times. So, I have decided to move back to the blog that I had been updating since Ella was born. I have been neglecting it since we found out about Lucy. I want to share so much more! Plus, its a record for my children. I have found that the only way I can remember when Ella started crawling, eating solid food, etc. is to look back at this blog. One day maybe I can print it out and make a book for them. If you would like to follow this blog the same way you follow caringbridge, you can type in your email address on the left hand side of the page where it says "follow by email".
Anyway....I'm going to move the caring bridge posts and try to bring in a few updates on Ella Grace as well. I want to start with Lucy's story. Not only the story of her medical concerns but also the story of our family and how God is using Lucy to change our hearts and lives in greater ways than we could ever dream. No one would ever ask for these challenges. Only the Lord knows what you NEED.

Jason and I face many challenges when it comes to having children. Our first few pregnancies were all miscarried in the first trimester. We tried for 3 years. As devastating as that time for us was, it never occurred to me that I wouldn't someday have children. Looking back I see now that we needed that time together as a newly married couple to build the foundation of our marriage. God always has a plan.

May 21, 2005

I started seeing Dr. Honea at the ART Fertility clinic at Brookwood Hospital in April of 2007. She discovered that I had a non-typical form of antiphospholipid antibody syndrome. I form clots at the placenta, which is why I could never get past the first trimester. The placenta could never take over supplying nutrients to the baby because of the clots. By July of 2007 I was pregnant again. This time Dr. Honea had me take progesterone, give myself heparin shots, and take baby aspirin. The first trimester came and went. I had a subchorionic hemorrhage around the sac the baby was in, but it resolved itself and caused no concern. The second and third trimesters were uneventful, and finally on April 9th 2008, we had a perfectly healthy and beautiful baby girl and named her Ella Grace. Our first little miracle.

April 9, 2008

     When Ella turned 2 we started wanting to have another child. I wanted to be pregnant through the winter and since we knew the "recipe" for success, we returned to Dr. Honea for our 2nd child (7th pregnancy). We got pregnant right when we wanted to, in July 2010, once again I had a subchorionic hemorrhage around the gestational sac, but it did not cause any concern. But this time I also had placenta previa. We opted for a first trimester screening. We were so confident. For us, it was just another ultrasound we were getting to see the baby. During that screening, which they do at 12 weeks, the Dr. observed a heart defect. SHE (another girl) had "significant regurgitation observed in the tricuspid valve." The Dr. felt that it was possibly a sign that the baby would miscarry. When I went for a 14 week check up on September 13, 2010, they could not find a heart beat. We had lost her earlier that day. She was measuring to the day, the size that she should have been. Our first 2nd trimester loss. Though we had many good intentioned people say to us "it just wasn't meant to be," we realized that her brief life served a great purpose.  She drew us to the Lord. Seeking, pleading, relying totally on Him. On the day that our baby's heart stopped beating, I was so full of faith that I believed that it had not. Even after accepting the reality of the truth, the peace of the Lord overwhelmed me and Jason and we were able to see the bigger picture. During that time, unlike any other, we were able to connect and share our faith and it came so easily. The day after we lost her I wrote, "I praise the Lord, that He loved us enough to challenge us in this way. Not only to draw us immeasurably closer to Him, but to aide us in what we had been praying for; being able to share our faith. It had been uncomfortable for Jason and I both. Her life was not wasted, she changed us forever."  She also challenged us to imagine what life would be like with a child that had a physical challenge. Looking back, wow, she prepared us for Lucy.

    We were required to wait a few months before trying again. Dr. Honea suggested I be tested for IGG deficiency (Immune deficiency), there is some research that shows a relationship between immune deficiency and antibody production and miscarriage. The treatment is IVIG infusions. The test came back and showed that I was deficient. So, thank goodness, insurance would cover treatment costs (around 5000 an infusion). I began monthly infusions immediately (October 2010).   On my grandmother's birthday (Emma Lou) (I think of this as heavenly foreshadowing), the day after my 32nd birthday, I had a positive pregnancy test. I started immediately on my regiment of shots and pills, but also added monthly IVIG infusions.

   This pregnancy proved to be extremely challenging. Immediately, at 6 wks, Dr. Honea was already seeing a subchorionic hemorrhage. At 12 weeks, partial placenta previa. I was put to bed for a week. At 13 weeks, we had our first trimester screening. All good news! No heart or other structural defect, chances for Downs was 1 in 9300, Trisomy 18 was 1 in 10,000. At 14 weeks, I switched from Heparin to Lovenox (2 shots a day to 1). Whew! That's Better! Everything was good. The baby was measuring right on target. At 16 weeks, the hemorrhage was gone and Ella named the baby "Jesus Broccoli". I think she wanted a brother. Unfortunately for her, it turned out to be another GIRL. We were so excited when we found out that we were having another girl! We chose the name Emma Lucy after my grandmother, Emma Lou Cabaniss. My "Lulu" was amazing! LuLu had been fighting ovarian cancer for 5 years. She was so strong and such a fighter and an inspiration to so many.

February 27, 2011

April 24, 2011 (Easter)

    At 19 weeks, she was measuring right on target for her due date. At 23 weeks I started bleeding. I went to the Dr. to get checked out.  Lucy was fine. But when the technician started measuring her long bones she noticed that her femur had only grown 2 days in 2 weeks time. At 24 weeks, her long bones had fallen another week behind. My OBGYN said that she thought Lucy might have a form of dwarfism. We were quickly referred to a Specialist at UAB to follow Lucy's progress. Her long bones continued to fall further and further behind in growth at each ultrasound. At 27 weeks, her bones began to flare (metaphyseal flaring). At 34 weeks, our specialist told us that her chest was small and she might have some breathing problems.

    At 37 weeks, her legs were behind nearly 2 months, her arms - 6 weeks, and her collarbones - 3 months behind.   We were nearing delivery, our specialist presented us with several possible scenarios. 1st, he reassured us that her condition should not be fatal....thank you Lord. However, she appeared to have a small thoracic capacity, micronagathia (small jaw) which could cause some breathing or feeding problems, possible cleft palate, collarbones that were not fully formed, and metaphyseal flaring in her long bones which may cause weakness and stunted growth. He estimated at her birth, she could be between 16 and 17 inches long.

July 27, 2011

July 26, 2011

    OK, now we are getting close to her birth story and let me just say, that each Dr. visit we had, and there were MANY, left us devastated in different ways at every visit. There was always a new theory, a new diagnosis, or a new discovery that left us spinning. We mourned, we prayed, we begged God to intervene. I am a researcher and planner. That is my nature. It's the way God created me, it is one of my gifts, but it also interferes with my faith. At first, I set out to "figure" out what was going on. I researched day and night, any time there was any new information, I studied it. That should come to no surprise to anyone who knows me. The day after any Dr. visit, I was calling for Dr.'s notes, I wanted ultrasound reports, lab reports, I believed that if I could put all of the pieces together, I could prepare for the future and for being Lucy's advocate so she would receive the best care available. I believed that was why God gave me those gifts. We sought counsel with our pastor. I think we did most of the talking and he mostly listened, which is what we needed. We expect our pastors to work miracles when we go to them, don't we? But the LORD, did do something amazing in that one little counseling session...Our pastor took one look at my "to do lists" and said "Mary, Mary, why you buggin'?" Referencing an 80's song, its one of the reasons we love him :) But the lesson was that I was being like Martha in Luke 10, so concerned with preparations that I was not seeking the Lord (like Mary).

38Now as they were traveling along, He entered a village; and a woman named Martha welcomed Him into her home. 39She had a sister called Mary, who was seated at the Lord’s feet, listening to His word. 40But Martha was distracted with all her preparations; and she came up to Him and said, “Lord, do You not care that my sister has left me to do all the serving alone? Then tell her to help me.” 41But the Lord answered and said to her, “Martha, Martha, you are worried and bothered about so many things; 42but only one thing is necessary, for Mary has chosen the good part, which shall not be taken away from her.”

   From that day on I prayed to be less like Martha and more like Mary. The Lord didn't change me overnight but over the course of my pregnancy, I slowly learned that the Lord was in control, He would not abandon us, He was with us, He would help us, all we had to do was trust Him. By the time our final specialist appt. came around, I didn't even want to go. I was at total peace. I didn't request reports and I didn't immediately leave and frantically begin researching the latest list of syndromes that Lucy could possibly have. We were just ready to meet her. Jason didn't have as far to go in trusting as I did, but when the time came, we were ready for her and we knew that:

1.) The Lord had a plan for her
2.) The Lord would not abandon us
3.) He was in charge.

   We began to see the Lord's hand in mighty ways leading up to the week of Lucy's birth. "LuLu" had wanted to see Lucy born so badly but God had another plan. The week prior, my grandmother began saying things in her last moments that made us certain that she was talking to the Lord as she drifted from us. It was a rare gift in a difficult time. LuLu lost her battle with cancer and left us for Heaven on October 14th. We were able to celebrate her life and have her funeral by the 16th! It was full of joy instead of mourning and full of little quirks and ironic twists that made us think that grandmother would have really enjoyed it. We enjoyed thinking that maybe she was getting to see Lucy first, after all.

   On October the 17th, Emma Lucy Slye, was born.  We arrived at Brookwood medical center at 6:30am to prepare to be induced.  I was only dilated 2cm, which is what I had been for 2 weeks so the nurse thought that we would have a long day ahead of us. She estimated that Lucy MIGHT arrive around 5pm. We told her about all of the complications that we were prepared for and we talked about all of the people that were praying for us. The entire time I was in labor, Jason and I were continuously getting text and emails from friends and church members that were praying for Lucy. Around 11:30, the nurse sent mom and Jason to Lunch. At 11:50, the nurse checked me and said that I was 10cm!! She said we needed to slow the prayer team down! (Yeah, right!) I needed to call Jason to get back fast. I kept trying and trying but he had no service. I was in a panic. Finally, I got him at 12:30 and told him to hurry! The nurse paged Dr. Barron and told her to hurry too! Jason ran in the room at 12:38 and she was born after 1 push at 12:50! Perfect in every way!! We were so anxious to have her weighed and measured! We watched as they checked her out. Her apgar scores were and 8 and 9! Finally they weighed her, 6lbs 4oz! The guy that was cleaning her up had a speech impediment and stuttered, Jason couldn’t stand waiting…he was bouncing up and down nervously...he asked how long she was and he said……."sh…sh…sh..sheees….na..na..na…nineteen inches"! WHAT!! WOW!! Those few seconds it took him to get it out seemed like an eternity. (This is a great part of the story...you should hear Jason tell it!)  She was breathing fine on her own! Her palate was not cleft, only a high arch! The neonatologist was on standby to be in the delivery room but we never needed him.

The Lord had given us so many miracles, from grandmother, to the labor, to a perfect little girl. We had been worried about her since I was 19 weeks pregnant, now here she was and the Lord had given us such peace the whole day. She looked so much like her sister! We were transported to a room and all of our family joined us. A nurse came in to give Lucy a bath and take her vitals. Cici (Jason's Step-mother) brought Ella Grace to the hospital just in time to see her get a bath! She instantly loved her so much. She got to give her the monkey she got her as a gift. She was worried about mommy too, whether my tummy was hurt, and If I got a Band-Aid :) Lucy had the cutest little baby mullet J    Jason was on cloud 9! He was so pumped up that night, he was calling everyone he could think of that he knew had been praying for Lucy and was telling them what God had done! He was so excited he wanted everyone to come have church in the hospital right then! The stress of the previous months made the thrill of Lucy's dramatic arrival so much more exciting! We were able to see God's great love for us, for Lucy, how he touched other's and drew them closer to Him!  Only a few hours old, and already, she has such a mighty testimony for the Glory of the Lord. If nothing else happens in her life, she has already done such great things!   Little princess - Big Impact!