Marching On

     As we neared the 32/33 week mark in my pregnancy, it was time for us to meet with the cardiac surgeon and take a tour of the hospital and recovery floor for infant heart patients. We made the trek up to St. Pete to hear and see what the road would look like if we continued to pursue intervention after Joscelyn was born. With every appointment there was always a deeper sense of peace before and during our meetings with the specialists. Even though we had to work through things after our appointments, there was always peace and grace there when we needed it. We sat down with the cardiac surgeon and he began to tell us what he was expecting and gave us his professional opinion as to how severe her heart and lung condition were at this point and what her chances of survival were if we intended to stick with intervening. Thank the Lord, he was such a sweet, encouraging doctor to work with. He proceeded to tell us that based on her condition, her lungs would have to be absolutely PERFECT in order for her to survive the first procedure they would perform and if she would survive, there would be multiple surgeries that would follow and probably would ultimately end in her not surviving the first months or year of her life. She had a 10-20% chance of actually surviving that first surgery. They could only do so much before they would only be practically torturing someone to try to save them. We knew that based on one of her EKGs, her lungs weren't developing the best so her first surgery obviously would not have been a success. The surgeon kindly told us we have to decide what is best for our family and that they will support us and assist us in every way possible with whatever we decide.....basically choose doctors or leave it up to God. I can't tell you how much relief we felt not being pressured or forced into a decision that we weren't sure or didn't feel good about. I remember walking past the rooms that held teeny tiny little babies on life support after their heart surgeries and it tore me to pieces. I thought to myself, "This isn't going to be my baby. I can't do this. I can't prepare for something like this." Then we saw the parents' of those babies sitting by their cribs completely blanketed with fatigue and heartbreak. I have the utmost respect for them and others who are and have walked that hard road not knowing what the outcome will be. So we prayed. We prayed hard and sought God's leading in where He wanted us to be knowing that either way wouldn't be an easy road, but we knew we wouldn't walk it alone. About a week later we met back with the cardiologist and told her that we felt like we weren't supposed to pursue intervention, but rather pursue a peaceful, personal birth and leave it up to God, still believing and expecting miraculous healing. She respected our decision but we could tell she thought we were crazy and that we wouldn't see that miracle outside of an operating room.
     From there we went back to the birthing center in hopes of having her there versus the rushed, more stressful setting of a hospital. At this point we both weren't open to the option of a home birth at all. lol It's funny how God leads you to do things you never dream you will. At 37 weeks we found out that our only options would be either a home birth or a hospital as my midwife couldn't deliver Joscelyn under the birthing center license due to her condition. If we went with a hospital birth I would have to find a new OB to deliver Joscelyn and I would have to establish a new relationship with a new doctor and still try to have a peaceful birth and final few weeks of my pregnancy. We both felt like this just wasn't an option especially since we weren't going to intervene and being at home would be the most personal and peaceful experience for us all. Let me just add that for Brenton to agree to this and support this is HUGE! Practically an act of God because the poor man, as much as he loves his girls, cannot handle everything that's involved in the whole birthing experience. But he was a champ and a half and handled it like a pro!! By far the best birthing coach I could have asked for! :) (More on that in another post.)
     My mom came down when I was about 38.5 weeks preggo and stayed with us for 3 weeks and oh my word, what an amazing blessing it was having her here! If I can grow to be have the servant she is, I'll be happy. She is my hero and I admire her so incredibly much. Because of her, I have learned how to be strong but also to be real. Sugar coat nothing. Embrace life and all of it's trials. It's the trials that refine, not define, us. Embrace, learn, and then move on and let God lead you. One of my prayers during my pregnancy was that if this journey that God brought to us was for His ultimate glory, and it always is, then I wanted to be all in....completely submerged and submitted. "Bring it on," I said. My life is not my own, but is a gift from God. I am simply a vessel here on this earth to glorify His kingdom and His name. Heaven is the ultimate goal, and my life is His story to write.
     As my due date drew near, we made all the necessary preparations for a home birth and started the waiting game. We had to have hospice on call because death was expected but not by us. We explained to them as well where we were at with things and what we were expecting, and no, we weren't crazy. Thankfully, the nurse we were connected with is a believer and prayed for us as well. Yet another gift from God. It was so hard making preparations like that because of what we were praying for and expecting. But we also knew that as long as the doctors didn't see a difference, this is what we had to do for legal reasons. So, with hospice on call, my midwife a phone call away, and my mom here to take care of the girls when the time arrived, we, along with so many family and friends, awaited the much anticipated arrival of our little Joscelyn Pearl.

Thanksgiving Came and Went

     As we tried to absorb the news we received and go into Thanksgiving mode, we couldn't help but walk around with a giant question mark on our faces. We took some family pictures that day and tried our best to join in the family festivities but it was so unbelievably hard. We had an EKG scheduled for the following Friday and it seemed to be this daunting black hole that I somehow had to muster up the courage to free fall into as I anticipated the appointment. Over the next several days and week, I completely submerged myself in Scripture. My God was/is the same God that He was thousands of years ago, and all those miracles He performed can and do still happen today so why not ask for it and expect it? I also received a lot of encouragement and was challenged by a few people about praying and believing in His healing power and standing on His promises in spite of what loomed over us. Okay, that's what I needed to do...trust and believe the same way that I do about my eternal salvation and destination. This will work, right?? In the next days that followed I had several specific incidences that were confirmation to me that He had heard my cry for help and healing and would answer. He not only gave me the name Pearl which means "precious, health and long life," but He confirmed His power through one of my friends on the morning of my EKG. I had been praying Psalm 77:14 ("You are the God Who performs miracles; You display your power among the peoples.") constantly He spoke it again through a text message. "Okay, God, I believe you. You've got this and I'm fully believing that you're going to prove these doctors wrong and they'll see a fully functioning, four-chambered heart." My first EKG came and we went with great anticipation and expectation of God's power in giving us a miracle. I had a paper with several Scriptures written on it and prayed them the entire time before during and after my EKG that God would open the eyes of the doctors to see that she was whole, that there was nothing wrong with her. We found out, however, that she did in fact have four chambers, but the left two were underdeveloped. She was diagnosed with Hypoplastic Left Heart Syndrome with an intact atrial septum. Not much hope was given to her survival unless we pursued extensive surgery and even then her chances of living were very, very slim. Surprisingly though, we weren't phased at all as the doctor drew for us a diagram of her heart and explaining to us in detail of what was going on and what surgeries they would need to perform in order to try and save her. I know our cardiologist thought we had to be crazy or just plain ignorant of what she was telling us. :) The peace of God was so strong that day! We knew that we didn't have to worry. Our God was bigger and better than these doctors and what they couldn't promise, He could!!

     Over the course of the next several months I had several more EKGs done and each time her prognosis just seemed to keep getting worse instead of showing any signs of improvement. I refused to succumb to the doubts, fears, and disbelief that raged against me. I literally felt like I was in such a strong mental and spiritual battle from then on. I blocked out anything negative that tried to make me doubt or question God's promise to heal. I believed and was completely convinced that I would see a miracle before she was born. Between the months of December and February, we experienced so much change, peace, and undeserved grace it was unbelievable. We were desperate for Christ. It's one of the best, hardest, and most effective place we can be. Desperate. Completely stripped bare of any "control" we think us mare humans can have on our lives. Desperate for an answer. Desperate for God to show us SOMETHING, ANYTHING that would make sense. And He did. He told us to stay put when we considered and were extremely close to moving to Indiana. He showered us with gifts, food, a roof over our heads when the house we were renting needed to be treated for termites, prayer warriors and friends to bear this burden with us. We were never alone. There was always, and I mean ALWAYS a shoulder to cry on, friends to lift us up and surround us with prayer, or a word of confirmation whether it was through a song, a friend, etc. He was right there with us the entire time. On December 9th, we had an anointing service at church for healing for our precious little girl. That same day, the Holy Spirit made it very clear to Brenton and me that we were right where we needed to be. That Bethel was our "home" and that our church was our "family." We felt so incredibly loved and blessed and encouraged that day. Even the anointing service was an experience I'll never forget. Jesus was there. He was real. He heard every single petition that was made on our behalf. My faith was made even stronger.

     After we got "resettled" in knowing that Florida was home for us, we had to look for another place to live because the house we were renting was in the process of being sold. Talk about having your world turned upside down! lol I look back now and wonder how in the world did we do it?? We didn't. We were in a million pieces trying to stay strong and hang on to our hope in Christ with every fiber of our being. And He came through yet again. He provided us with another house that lined up with our budget, He provided work and business for Brenton to start on his own. And it was over this time that He gave us her first name, Joscelyn, which means "joy and righteous." We had so many "wow" moments, and yet, I battled with the fact that I hadn't seen my miracle. It had been decided that because of Joscelyn's condition, I would be delivering at All Children's Hospital in St. Pete where they would whisk her away immediately after birth and perform surgery to try to repair her heart. So, I had to start making the 45 minute commute to St. Petersburg once a week and have an EKG done once a month only to prove that her condition wasn't changing but was in fact getting worse. She was growing well otherwise, but her heart was not. I was determined to stay faithful, stay strong, and stand on God's Word and His countless promises of healing. There were many times after my appointments that I would sit and cry my eyes out wondering why in the world we didn't see anything different on that ultrasound screen. Am I not praying enough? Do I not have enough faith? God, what are you trying to do?? Do you even hear me? I knew and believed that even up until the very last minute God could still give us a miracle. But did I seriously have to wait for that last minute? So many times He took me back to Matthew 9 where the woman that suffered from bleeding for 12 years reached out and brushed the hem of His garment, and Jesus told her, "Woman, your faith has healed you." (paraphrased) How I so longed to be able to just reach out and touch the hem of His garment and have my baby healed. I would've done anything to be able to do it. I felt like my way of touching His hem was being totally consumed and enraptured by Scripture and praying and believing in a miracle for healing. I refused to listen to any story or anything that was the opposite of what we were praying for. I wouldn't speak or think anything else because it felt like I would be going directly against what we were believing in and praying for. We were beginning to wonder if we were really supposed to be pursuing intervention at all based on her prognosis and the fact that it felt like we were praying for one thing, yet preparing for something else. (But that's for another blog.)

     As time passed by.....painfully slow at times, I knew that it would be at the very last minute that I would see my miracle. My strength was not of my own. Had it not been for Christ and our countless prayer warriors lifting us up, I would've crumbled like a ton of bricks. "....my grace is sufficient for you, for my power is made perfect in weakness." (2 Corinthians 12:9) At one of my EKGs, my cardiologist looked at me at the end of my appointment and said, "Get strong. You have a long, hard road ahead of you." Get strong.....how was I possibly supposed to get any stronger??!! I remember vividly a picture that God gave me one day as I was washing dishes and praying. Jesus was walking along the beach/this road we were on, but He was alone. He reached out His hand and asked me to take His hand and walk this road with Him, so I did. But it got too hard for me to keep walking and I grew weak. I then saw that He had picked me up and was carrying me as I was still carrying Joscelyn. As I rested my weary head on His shoulder, he whispered to me, "We're almost there, my child, we're almost there......but not yet." That is my strength. Knowing that Christ carried me so many times gave me strength to walk that hard, heart breaking road. He is my Cornerstone. My Jehovah Jirah. I pray that I will ALWAYS be desperate for Him.