It is Well with My Soul

I have had several people ask me if I was going to finish Henley's story...my hope is that this is not the end of her story, but yet just the beginning. My prayer is that her nieces and nephew's grandchildren will be affected by her story. So I am not finishing it, it's not mine to finish - but His, but I am going to write just a chapter.

I am humbled that someone other than my mom or grandmother reads this blog. I started it, never thinking that anyone besides my family would read it. It is my heart, my outlet and my way to remember all that I never put in a journal or a baby book. I am in awe that God chose my little family, my blog and my baby girl to bring people to Him - we are not worthy, but we are grateful...so to HIM be the GLORY!

Wednesday, August 8th, will be a day that forever changed mine and Bryant's life. It is a day that, for as long as I live, I will remember every detail...every second...every little noise. It was the day God graciously gave us what we had prayed for...in so many ways.

Tuesday we had our pre-op appointment at the hospital and we decided to just spend the night in Montgomery since we had to get up so early to be at the hospital by 5am. I remember thinking that night that I probably wouldn't get much sleep - between being horribly uncomfortable in any position, heartburn and the uncertainty of what the next day would hold - I thought for sure I would watch the minutes tick by on the clock. I tried my hardest to fall asleep and I did. At 3am I woke up, and I mean I was wide awake. Over the past week during my sleepless nights, I had spent some sweet time in the Word and prayer. On Monday night/morning I had actually written down several verses that I could pray over and just think about. Wednesday morning I knew that I had been wide awake for a reason - I needed to get my mind and my heart prepared for what that day was to hold. We were in a hotel, and I didn't want to wake Bryant - so I spent the next hour on the bathroom floor reading, crying and praying. It was probably one of the sweetest times I've ever had with my sweet Savior. He met me where I was and I knew He was going to hold me that day - wherever He decided to take me.  I was ready. Bryant got up a little while later and the only thing I could really tell him was those three words... I am ready.

We got to the hospital, and we prayed before we walked in. It was a moment that stood still for me. I knew we were going in to have a baby - I just didn't know how we would leave. The nurses got me ready and we had a little while to just wait before I was scheduled to go back for surgery. Dr. Waller arrived early so he could pray with Bryant and me and answer any last questions we had. I remember him grabbing my hand, kissing my forehead and saying "let's go have a baby girl." My thoughts were the same...

We had a waiting room full of the most amazing family and friends - all ready to hold us up regardless of what the day brought. I later found out that Dr. Waller went out and prayed with them before he came to the operating room. Amazing man, amazing doctor. I remember getting my spinal and shortly after Henley's sweet daddy entering the room and taking his place by my side. He held my hand and kept his face within inches of mine, telling me that he loved me and was proud of me. Dr. Waller told us earlier that morning that once he started Henley would be out within 10-15 minutes. Those were quite possibly the longest 10 minutes of my life. When we finally heard she was out, they asked Bryant if he wanted to see her - he stood up and all I remember him saying is that she was BEAUTIFUL. I quickly asked if she was crying...it was all I wanted to know, she could have had 4 legs and I still would have thought she was beautiful, but I wanted more than anything to hear her cry. He later told me that she was blue when he saw her -(they wanted the Neonatologist and NICU nurses to do all the care for Henley so they didn't do anything to suction her out). Bryant sat back down, and we waited as they carefully handed her off to her doctors and nurses, and we waited to hear the sound we had longed to hear.

She cried. She cried! SHE CRIED!! In a room full of 18 people, with an oxygen mask on, I heard her...and all I could do was cry too. God was faithful to get me ready for that day...and then He began to just pour out His blessings.

She arrived feisty. I couldn't help but smile as they wheeled her past me on the way to the NICU - all I saw was a head FULL of dark hair (oh the heartburn became all worth it!) and all I could hear was the sweet squeal of a cry. She had taken her first breath and had proved that God holds her little body and breathes life as He chooses. After Dr. Waller had finished, I was sent to recovery. Henley's Neonatologist, Dr. Whittington, came in and told Bryant and I that she was breathing - she was having some trouble and needed some oxygen - but she was breathing! PRAISE THE LORD! He was a fantastic doctor and even more precious man! He wanted all of the family to get to see her - despite the NICU rules of 2 at a time. Bryant left to go be the proud daddy and show the world our little girl...all I could do (besides shake fiercely from the spinal) was pray an endless prayer of thanksgiving.  We later found out that Dr. Waller said in all his years of delivering babies it was the easiest c-section he had ever done - he said that normally there is lots of pulling and tugging (which we were concerned would break more of Henley's bones) but she literally slipped out and there were no new fractures. His hands had been held by the GREAT PHYSICIAN... He kept pouring out His blessings.

I finally got to leave recovery and they wheeled my into the NICU on the way to my room. I was in awe, not only of how many wires and cords hung off my baby, but also of the most perfect little girl that lay before me. Her legs were both bent upwards, her arms were swollen around the fractures and she had tube blowing oxygen into her body - but to me she was perfect in every way. She had the thickest, darkest head of hair (that would later that night hold the tiniest pink bow). She had the biggest brown eyes that stared right back into mine. She had the tiniest little body that defied odds. She had the biggest fight of a 5 pound baby I have ever seen. She looked like her daddy and I am afraid to say acted like her momma. The nurses laughed as I told them that I prayed she would be feisty. They quickly said that prayer had been answered!

We lived life with Henley the next 7 days. It was a whirlwind, but it was life nonetheless! We would stay for most of the day and night at her little bed...we would read, sing, pray, talk and just cuddle and love on her little hands/feet and head. She had so many visitors each day, and it was our joy to bring them in the NICU and introduce them to our daughter. We saw God work not only in the life of our daughter but in the life of our family. Bryant and I learned a new meaning to living out our faith - it became easy to talk about God, share our faith and spread the love of God with the people we spent these 8 days with...some we knew, some we didn't.

We have always trusted that God is faithful to answer prayers - it may not look like we prayed it to look, it may not be in our timing or we may never see it answered - but we know He hears and according to His will, He answers. God was so sweet and gracious to let us see so many of our prayers answered over that week, some of which happened in the matter of hours! Because of Henley's fractures and the OI disease, she had extremely hard vein access - Dr. Whittington told us that is was crucial that they get a more permanent IV line in her, and they were having trouble doing so. We left and immediately went back to our room and we got everyone in our room to pray that the sweet nurse practitioner's hands would be guided and that the PICC line would go in...2 hours later we got the call that it had gotten in! Tracey, the nurse practitioner, had tears in her eyes when we went to thank her and told us it was the Lord's hands.  The day she was born, she was needing more and more oxygen and they decided that they needed to put her on the vent. Over the next 2 days her settings were being decreased and we daily prayed that she would be able to come off the vent...Friday she came off! She stayed off the vent and went on the C-PAP which gave her oxygen, but allowed her to do more breathing on her own.

God proved that He had created a fighter, when He formed Henley. She fought and she fought hard. With so many broken bones and having to stay on morphine almost around the clock - it was more than her little body could take. We watched as she labored to breathe and it broke our hearts when we saw her grimace with pain. There is no words to describe how hard it is to watch your child hurt with pain, and not be able to do a thing about it. Her CO2 levels kept rising, we think because she was not able to get deep breaths - probably due to the 4-5 broken ribs on each side and the other broken bones. Her levels had really fluctuated and we had to have some tough conversations about what would happen if she had to be put back on the vent. Dr. Bonner had just come on as the doctor for the week - she is the amazing woman of God we had initially met with and fell in love with - and she wanted to make sure that our wishes were being honored. It was a hard conversation to have...with everything in us we wanted to fight and fight hard, but we knew if we had exhausted every mean to help her and she still needed to be on the vent...she would become vent dependent and we would be prolonging what God had willed for her little life. Some of the hardest words I think I will ever hear in my life are  - your child is not compatible with life. It hurts. Bad. Bryant and I knew without a shadow of a doubt that we didn't want to hurt her - but having those brown eyes stare at you as you sing a song and a little fragile finger grip your pinky tight - it's hard to let go...

A week after she was born, I had received more of God's blessings.  I got to hold my little girl for the first time. Due to her fragile bones, she laid on a pillow, but it was the sweetest moment that I have forever taken for granted...the ability to hold your child. I rocked her and held her for three hours, and those big beautiful brown eyes stayed opened and watched me the whole time. If only I could know what she was thinking or if I could have made sure she understood just how much those three hours meant, and together with her brother, she had made me the happiest momma in the world. In those three hours I felt love like I had never known.

Thursday morning came, and her levels were still all over the place. Dr. Bonner let William come in and see Henley for the first time and it was the first and last time that our family was together...all four of us. There were so many emotions that flooded me when I watched my oldest meet my youngest. My little boy saw his sister - the one he had kissed and hit :) so many times in my tummy. It was the sweetest of moments for me as their mommy. In a matter of seconds I saw him protecting her as she went off to school, I saw them fighting over the last cookie, and I saw them both curled up in their daddy's lap as he prayed over them before bed. God was gracious to allow me to have my family together - even if it were for mere minutes.

Bryant and I had gone to lunch to clear our minds and talk. During that conversation, Bryant talked about how Paul had lived his life. For Paul, to die was gain, and to live was to live under the authority and Lordship of Christ. We talked about how this took on a whole new meaning in our new found life. We had no idea of how close this would become to us as we walked back into the NICU. Our prayer was that we would have wisdom and discernment for every step and decision we had to make with Henley. We prayed that we would know when to keep fighting and when to let go. We met with Dr. Bonner after lunch and it was the meeting we had dreaded. We had exhausted all means...we had to decide to keep fighting or to let go. We were sick and we were hurting. When your flesh says fight and your soul says let her go to her Father...that's where we were. Bryant called our family and our elders at our church - we wanted and were given some amazing biblical counsel.
I remember Bryant singing "It is Well with My Soul" when he got out of the shower that morning...he is always singing something, but for some reason it had been on my mind, and I guess my heart, all day. I thought about that song when we made the decision and told Dr. Bonner that we would do comfort care if she needed to be put on the vent. I feel the need to stop and just tell how amazing Dr. Bonner was for us in these darkest and hardest moments we will ever face as parents. She not only gave us sweet and encouraging words, she gave us advice as a God fearing woman and mother. She held our hands, walked beside us, cried with us, prayed with us and helped us love our little girl all the days of her little life. As we were talking to her, the last blood gas levels came in - 60 is usually when they put them on the vent, 35-45 is where they wanted Henley's to be. Her level came in at 78...I remember Bryant calling out "Father" as my eyes had filled with tears...HE had given us our answer....yet another prayer He answered in His time. We had been given wisdom and discernment - and we knew that our little girl was going to the Kingdom and would soon see Glory!

Next to being chosen to carry Henley for 9 months, the next greatest honor I have, as her mother, was to hold her as she passed. It was the hardest thing I know I will ever do - and yet I can honestly say it was best. To know she left my arms and entered in to her Father's will be something I hold on to for all the days I live. We sang to her, prayed over her, and talked to her just as we had when she came into this world. She was surrounded by her family and the most precious family we have gained in the NICU. Again - He poured out His blessings...in big ways.

We left the hospital that night forever changed. We walked out hand in hand and got into the car, I got in the front seat and there was an empty carseat in the back. It was not the way I wanted to leave - but I am convinced His ways are not our ways. They are far better.

Henley's funeral was one of the most worshipful moments I have ever experienced - it was exactly what we wanted from the moment we found out something was not "normal" with this pregnancy. We wanted Christ to be exhausted, to be Glorified and His people to come to know Him. I remember someone saying to me how sorry they were - as I looked at my baby girl in a casket that is smaller than it should be - I said "it's ok, God is still good." Their reply was "How can you say that?" I was quickly caught off guard, but I have thought about that moment so much in the past 2 weeks. So, how can I say my God is still good?

He is good because He gave me a daughter.
He is good because He gave us 8 days, when we thought we would have none.
He is good because He gave us a little boy as our first child - a joy in the midst of the suffering.
He is good because He brought family and friends to us and through them showed us love, sacrifice and how He provides in all ways.
He is good because He made my marriage to the man of my dreams so much sweeter. He allowed this man to grow to lead our family in the darkest of valleys.
He is good because He allowed us to be in the best care of the most compassionate and caring doctors and nurses.
BUT MOST IMPORTANTLY -
He is good because through Christ dying on the cross - we have life everlasting. We turned from Him, and because of that I saw my daddy and my daughter die in one years time...I saw a hurricane wreck havoc on families this week...I've seen cancer and Osteogensis Imperfecta come into bodies and destroy them...oh the curse! He is good because He is the one that took the punishment of my sin and carried it for me on the cross. He is good because He allows me to have a relationship with Him in eternity when I deserve His wrath and separation for all eternity. He is good because He has promised He will return and make all things new, a new heaven and a new earth. He is good because all He requires is repentance and for His children to believe.

He is good because my daddy is cancer free and my daughter has the most perfect bones.

This has been one of the most incredible journeys we have ever been on. The sweetest of times and the toughest of times. We have learned what it means to have utter dependence on Him. Our hands have been tied in so many tight knots that we couldn't imagine getting them undone to do anything - in the meantime, our sweet Lord has perfectly orchestrated every second of every day with one delicate move of His perfect hands. We can look back over the past several months and see how a portion of the big picture has played out - His handprints are all over it. My precious friend told me one time that it's like we are looking at a parade - we see one float at a time, but He sees the beginning and the end. Praise God He does and I am thankful that we don't! I keep thinking back to the day Henley passed - Dr. Bonner was the doctor on call and stayed the whole time, and our 2 most favorite nurses were the ones that were caring for Henley on her last day...God's handprints all over it!

I want you to know that this has been hard...I cry often and I cry a lot. When I look at pictures that we've hung around our house, or I see the most amazing slideshow that a precious friend took - I sometimes just weep. My heart hurts when someone brings food over and I only can show them pictures of our beautiful daughter. I long to hold her, to bathe her, to put her pink bow back in her hair and sing to her. However, there is an empty cradle and a piece of my heart that will forever be gone.
While I miss her every day - I can't help but to rejoice in what we've been given. In 8 days, Henley accomplished her purpose on earth - she lived to bring Him glory. She brought people to their knees and souls to the Kingdom. She reminded her daddy and I that through our suffering we should be pointed to Christ...and we were.

Bryant and I went to the beach the weekend after her funeral  - we needed a chance to rest and a place to clear our minds. I was sitting on the beach when Bryant told me to look up - there was the cutest little girl running in the sand, she was probably around 2.  I remember thinking immediately about Henley. I would long to see her play in the sand next summer with William, I would always long to put her hair in pigtails, to pack her lunch in a pink lunchbox, to buy her first doll or even her wedding dress. I would long to have the relationship with her that I have with my mom...

In the midst of those longings - God soothes my soul. He has reminded me she will always be William's sister, she will always be the first granddaughter,  she will always be a precious niece, and she will always be our first baby girl...

Yet, she is where we long to be...safe in the arms of the One who knitted her together in the secret places and numbered her days long before the foundation of the world.

Praise be to Him!

We do not choose suffering simply because we are told to, 

but because the one who tells us to describes it as the path to everlasting joy.

-John Piper

These are the links to the amazing pictures my sweet friend took on the two most precious days of our lives!

http://candacenelsonphotography.myshowit.com/henleysbirth
http://candacenelsonphotography.myshowit.com/henleyyarbrough