Landrey's Journey Part 2 (Open Heart Surgery)

This blog entry was originally posted November 9, 2012.

I'm sitting in the CVICU holding my sweet baby girl. My heart is filled with the deepest gratitude. Across the hall, stands a team of doctors, a team of nurse practitioners and nurses. They are hovering over the crib of a tiny baby whose life is in the balance. The alarms won’t stop ringing critical. They walk the mom close but she probably feels she is miles away. She won't stop crying. Panic fills her heart. The fear of death is the expression of her face. She can't control what is happening. She can't make it better. She is helpless. I know these thoughts. I know her terror. I have walked her exact situation four times in the past nine days. 

What has transpired in the last few weeks has truly felt like years and at the same time moments spinning fast and out of control. 

Landrey is quite simply a fighter. God is quite simply omnipotent. 

I have learned one major thing over the past week. There isn't a miracle power saving drug that can prevent you from dying. Go ahead and laugh at my ignorance. I might be the least knowledgeable person you may meet regarding anything math or science related. I'm a product of a person who lives in 2012 living most of my life with tons of technology and an overexposure of fake medical TV shows. I had no idea that sometimes even the greatest most well-respected cardiothoracic surgeons in the world can respond to your question of "Why is this happening?" with a brisk and disturbed "I don't know." 

Landrey looked good Monday morning October 29, 2012. I was supposed to share time allowing my mom and Melissa time to hold her at 6:30 a.m. prior to surgery but I couldn't. Joshua did get a turn. I couldn't let go. As much faith as I had that everything would be okay there was still apprehension in my heart. The day prior they had reviewed all the possible things that could go wrong with open heart surgery to repair Tetralogy of Fallot. They showed me pictures. They made me sign a consent saying I understood that I has been warned of things I just don't want to even type now. So my heart was heavy. I've been standing by her side for 8 weeks. I don't know medicine but I know Landrey. Her lungs have been her challenge. How would they react post-operation? I cried as they pulled her away to surgery. Joshua held me close. It's hard to believe YOUR baby's sternum would be cracked open, her heart would be stopped for an hour, and her heart and lungs would be artificially run on a bypass machine during surgery. Melissa and my parents sat with us as we waited for the results. Landrey had come through the surgery. We gathered in the small break room held hands and thanked the Lord. I thought the worst was over. I thought wrong. 

Looking at Landrey just after her open heart surgery

Tuesday October 30, 2012 is a day I'll never forget. It was around 6:00 p.m. My mom walked in the break room. She gave me a look I've never seen her give. I wasn't scared because I had no true reason to fear at this point. She said the doctors want to talk to you. I hurried back to her room. As I turned the corner I saw what seemed to be every doctor and nurse on the floor standing in Landrey’s room and spilling out into the hallway. Two doctors met me half way down the hall. Then walked me to the edge of her doorway with two cardiologist who were ready to talk to me. "She's stable. Her blood pressure and stats plummeted. We're in a predicament. We don't know what's causing it. We can't control it. We can't prevent it. We can only try to treat the symptoms if she does this again. We're in a danger zone" My mom was in the room when it happened and heard the word "code.” I know now why I had ended up in the break room. Joshua had called me to pray together on the phone. I had been in her room just chatting with my mom. I answered and he had an urgency in his tone. He said, "We need to pray right now." I walked away to a small conference room while my mother sat in the room with Landrey. For the next 30 minutes or more, Joshua and I began to pray not knowing that her life was slipping away. At that moment that we were praying, God protected her life. A team of cardiologist called a heart rhythm specialist who was put on speaker phone to give orders on the next step. They medically sedated and paralyzed her then used other medicines to gain control of her blood pressure, heart rate and rhythm. God didn't allow her to lose this battle. 

This is life support. All of these machines either monitored, sustained or entered seven access points into her body.

I went to the hotel room with my parents to attempt at sleeping, calling her nurse throughout the night. Around 5 a.m., It happened again. This time her heart rate started it. Once again, they had to use life-saving drugs to save her. Once again, I found myself racing to her room not knowing what I would find. Once again, I walked up to the bedside of a completely stiff, pale little baby. She was medically paralyzed, sedated and full of fluid. 

"Where are you, God? Why are you letting this happen?" I thought. What happens when the God you believe in doesn't meet your expectations? What happens when what you proclaim what He can do doesn't happen? Will you still believe and trust in a God when you can't see ANY evidence of His hand? What happens to your faith when He doesn't seem to be meeting you half-way or doesn't seem to be even turning His head in your direction. "God, I keep praying for the same thing in full faith but you don't seem to be choosing that method. You don't really seem to be involved even though I'm crying out to you." Those thoughts passed through. I decided I would keep trusting.

"Where are you, God? Why are you letting this happen?" I thought. What happens when the God you believe in doesn't meet your expectations? What happens when what you proclaim what He can do doesn't happen? Will you still believe and trust in a God when you can't see ANY evidence of His hand? What happens to your faith when He doesn't seem to be meeting you half-way or doesn't seem to be even turning His head in your direction. "God, I keep praying for the same thing in full faith but you don't seem to be choosing that method. You don't really seem to be involved even though I'm crying out to you." Those thoughts passed through. I decided I would keep trusting. I would not give up praying in faith even though I am standing there watching my daughter seem to struggle to survive. We sent out a request on Facebook and through text messages to get people to pray all night. That Wednesday morning, a pediatric cardiologist walked into her room with a confident message. "We know what's causing this. We have it under control. One day, two months from now you will forget we even had this conversation. We made a mistake in surgery. We should have left a flap in her aorta to allow a place for pressure to release. We thought she was doing so well because there was less to repair than we thought and we pulled her from her help too quickly. She is suffering from pulmonary hypertension."  They treated that with many different methods. They had taken away her pacemaker. When they tried to hook it back up, it wouldn't work. Now, they would only have the option of regulating with medicine. 

By Friday, she was diagnosed with pneumonia. By Monday November 5, 2012, her cultures grew even more bacteria. Even though she was battling sickness she was still making strides to get off the ventilator.

Landrey was battling pneumonia after coding two of the four times in the nine days after open heart surgery. We had to wear PPE (plastic suits and gloves) to even stand in her room. We weren't permitted to touch her.

On Sunday during rounds, Landrey’s alarms started ringing critical. The physicians and I were standing at her doorway. I slipped inside their room and sat quietly to the right on a plastic chair. I looked at the monitor. Her heart rate was supposed to stay around 120. It was falling 90s, 80s, 70s. I glanced back down to see nurses and the cardiologist work quickly but smoothly. You couldn’t tell we were losing her by the tone in their voices. The cardiologist called orders. He abruptly grabbed the pace maker and started to try to operate it. His fingers were moving quickly and frantically. The pace maker hadn’t worked in days. He was hoping it would somehow help now. It didn’t. I glanced back at the monitor. Her STATs were plummeting. I remember seeing her heart rate drop to 60s, 50s the last I saw it read was 15. My mind knew it was over. I stopped looking at the monitor. I stopped looking at her lifeless body. From then on, I started only watching the cardiologist’s eyes. They are trained to be swift and smooth in front of the parents. But I found you can’t hide one thing….your eyes can’t hide the fear of death. I knew we had lost her by staring at his eyes. All of the medicines they were shooting in her central line were not working. The pacemaker was done. The cardiologist and the nurses just stopped working on her. He placed the pacemaker down on her bed. “Stay calm I told myself. Operate in peace. Do I scream out? I whispered a prayer, “By Jesus’ stripes, Landrey. You are healed.” Nothing. I knew the cardiologist was about to call time of death. He waited a little longer. The room was completely quiet to me. I’m sure the alarms were still going. But everything felt like it just stopped. Like all of creation had paused. Like eternity was holding its breath. “Okay God. Come on.” I thought.

Landrey’s heart rate came back, not to 15. It came back to her normal. Her Oxygen returned immediately. Her heart rate returned to 120. The cardiologist stood there stunned and started slowly walking back. I said, “Did the pacemaker work?” He replied, “No,” then called for X-ray. The X-ray revealed the central line had slipped out of her heart. Prior to being extubated, they have to put a patient on TPN (fluids) as you can’t have anything in your stomach with a feeding tube. Since the line had slipped, the fluids did not go into a vein but had been pumped into her chest cavity surrounding her heart and lungs. The pressure had caused them to collapse. There’s no explanation as to why her heart returned to working properly or how she lived for the hours it took to insert a chest tube and drain the 70 cc's of fluid back out. I took a picture of the X-ray. They started a new central line in her groin.

  

People would ask me what do you do all day beside her bed? Do you sing or talk to her? No, I can't talk to her because she recognizes my voice. It wakes her up to the discomfort she is in. She starts to cry silently and gag on her ventilator down her throat. I watch her gag over and over and over until she wears herself out and falls back asleep. 

My child is too sick to hold and now too sick to talk to.

My child is too sick to hold and now too sick to talk to. But I can't leave her side. I can't concentrate when I leave try going to where I'm staying. I tried going to one of Joshua's football games and my heart and thoughts are of Landrey. I can't believe my child is having to go through so much pain and discomfort. 

Our pretty little warrior

On Tuesday, November 6, 2012, she was finally extubated. She did well until later that afternoon. Her lactate levels went from 1.8 to 8. This can mean several things but one of which can mean she could be coming down with a severe infection. We sent out word again to pray. On Wednesday late morning, the number dropped back into normal range, a cardiologist, said, "Yeah, I have no explanation." 

Thursday, November 8, 2012, she seemed to be pretty stable. I noticed she was extremely loopy and had suffered a drop in heart rate while I was holding her. I told the cardiologist in late night rounds I thought they should back off her pain medicine. In the early hours of Friday morning, they inadvertently overdosed her on pain medication and she coded again. Even though it was the appropriate amount, it was too much for her body. The medicine had accumulated in her system. Her heart rate plummeted. I tried to go get a couple of hours of sleep at where I was staying. I woke up knowing something was wrong. I called her nurse. “How’s Landrey?” The nurse’s voice had an odd tone. “Well, she’s wide awake.” Instantly, I knew that would have been a significant issue. When I left she was overly sleepy. “Why.is.she.awake?” I said. She responded, “We accidently overdosed her on a pain medicine.” In a firm tone, I replied, “I’ll be right there.” The Mama inside me wanted to forget my religion and give them a "dog cussing." How could you not pay attention to what I keep bringing to your attention. I don't know medicine, but I know Landrey. I know she was too out of it before I left. I have noticed almost every single sign of something before it has happened. Should I shout at them? I don't have a peace to. Each nurse and doctor for every shift every 12 hours for the past 10 days, I say the same phrase to, "I don't know medicine but I do know Landrey. She responds drastically to minor changes. Go slow with her." Why hasn't God given me the go ahead to yell at these people. They have made a mistake in her surgery, a mistake in her care the first 24 hours after, a mistake in the fluid inadvertently put into her body, a mistake in the painkillers. Walking back to her room I argued with God." Just let me lose it on them. I have the right to. They made mistakes. No one would fault me for that. Why do you keep impressing on my heart to hold back. I mean defending your child isn’t a bad thing. Are you even watching this? Where are you? You’re letting her die. Okay, I trust you. I don’t get it. But I’m going to praise you today because of who you are. It’s not based on my circumstances. It will never be.”

God, are you even watching this? Where are you? You’re letting her die. Okay, I trust you. I don’t get it. But I’m going to praise you today because of who you are. It’s not based on my circumstances. It will never be.”

The first time I held Landrey after open heart surgery. 

Today it finally hit me. God is the author of her days. Doctors can do the wrong thing but God won't allow her to slip from His grasp. I believe this whole thing so far has been to show that the very best doctors, nurses, facility and medicine can't save you. I have been told, "We have done what we can, but we need her to respond." I never knew this. How did I not know this? My mind thought that modern day medicine could pretty much fix any problem. They can't. As brilliant as we are as humans we don't control life, God does. Even as a Christian, I honestly believed when someone came through a surgery and said, "God healed me" I thought in the back of my mind "Uh, hello you were healed by modern medicine." No, let me tell you. I've stood in the room with modern medicine hoping it would work and it did not. Why? We still need God. He is the one in control, not us. 

Now will you give Him control? I'm still standing in faith. I will not be moved. Just because I don't understand God's perspective of my situation right now does not change my perspective of Him. You don't see the big picture. You don't know what He is doing behind the scenes. You don't know who He is touching through you while you go through your trial. This has been heavy. Even though I have peace in the storm, it is a minute by minute refusing to carry worry, fear and anxiety. Faith, peace, trust, joy, and hope are choices we make. I haven't always succeeded but I keep getting back up. 

The miracle of her life has not happened the way I expected, hoped or predicted it would. I never dreamed we would have to pray the prayers, cried the tears, or held on to hope in the manner we have. Does that change who God is? Or will that change how I view Him? His promises don't change. There times we can't see the whole picture but it doesn't change His power, His love, His omnipotence. So this is heavy, a big challenge Joshua and I are walking through. I challenge you to look at how you are viewing God in your circumstances. Give Him the rights and access into your life. Trust Him with it even when you can't see Him working. He still is.

Today, Landrey has a few more hurdles to go. Her heart rate needs to continue to stabilize, her lungs need to continue to heal, she needs to learn how to eat and of course grow before we can go home. As I glance up to the chaos across the hall and look down and stare into her sweet little eyes. I'm reminded of His faithfulness. Life is precious. 

I was able to help with a sponge bath. She loved being wrapped in what I called the baby burrito position. 

"For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently." Romans 8:24-25

Landrey was discharged just before Thanksgiving Day 2012. She came home on Oxygen that had to be monitored by me every few minutes and on with a life-saving drug that I administered every four hours. Just two months later, Joshua would be named head football coach at a university in Texas. What transpired next would be a life of critical and chronic illness requiring life saving measures at home, multiple transports and sometimes more conflicting medical reports. With each challenge brought an opportunity to cling to God’s grace and perfect peace.

Landrey's Journey Part 1 (Her Birth)

The blog entry was written in October 2012 when Landrey was just a few weeks old.

I had waited for the sound.

Nothing.

“She’s not crying. She’s not crying,” I told Joshua. I knew what it meant. Every mother can’t breathe until they know their baby has taken their first.” I wouldn’t hear that cry for days.

The NICU team was lined up prepared for a baby with a cardiac defect. What they encountered was much more complicated that anyone predicted.

The months leading up to this moment were a guessing game from some of the most well-respected specialists you can find in one of the top medical centers in the country. Sonograms indicated a cystic hygroma around her neck diagnosed at 11 weeks. Echocardiograms indicated a severe congenital heart defect diagnosed at 18 weeks gestation. Some thought she could die in utero or die just after birth. Some believed it was just a cardiac issue and she could be healthy otherwise. Then preliminary genetic testing indicated perfect chromosomes. No one could have projected what would be next.

At 32 weeks, I was put on bedrest at a hospital in Dallas due to low amniotic fluid. I was living in a hospital two hours from Joshua who was in football season raising our 15-month-old daughter, Kourtney, alone. One morning I had to drop Kourtney unannounced at a daycare I knew nothing about and go to the hospital in a different state, never returning home until I was discharged a week later, then readmitted. A different coach’s wife would pick her up each night, sometimes some she didn’t know well. They would feed her and take her to Joshua after football practice. My family was seven hours away. We had just moved to a new city three months prior.

On Friday, September 7, 2012, they checked my amniotic fluid levels again and saw that they had dropped even further. They decided to go ahead and take Landrey. The day before the OBGYN warned us there was a good chance that this may happen. Joshua loaded up Kourtney in Oklahoma and took her to be with his aunt in Dallas and spent the night with me in the hospital to be in position. Landrey was born September 7, 2012 weighing 3 lbs. 14 oz. and was 16 3/4 inches long.

She was not breathing, so they had to use a manual ventilator. They whisked her away to the NICU. Just before taking her, they rolled her bed about three to four feet from the operating table where I was lying. They lifted her head up to show her to me and then took her away. I couldn't believe I didn't get to hold her. Little did I know, it would be nine more agonizing days until that moment came.

It took then about four to five hours to come give us an update on Landrey. We didn’t know why. It took them hours to get her airway stable with a ventilator and her IV lines into her bellybutton to be able to give her nutrients. The pediatric cardiologist came in and told us that her heart has a congenital heart defect called Tetralogy of Fallot, a four-part heart condition that usually requires surgeries every 2-3 years. But Landrey's wasn't typical...she might only need one surgery. She also said we needed Landrey’s PDA to close on its own. She expected that it would not or if it did maybe months away. 

My heart sank. This sounded overwhelming. "My baby is in the highest level of critical care hooked to a ventilator?!! God, where are you in this? I've prayed in faith for her to be healed for months." He was there. I just couldn't see it yet.  

My heart sank. this sounded overwhelming. "My baby is in the highest level of critical care hooked to a ventilator?!! God, where are you in this? I've prayed in faith for her to be healed for moths." He was there. I just couldn't see it yet. About 9 p.m. that night, I had enough strength to go to the NICU. Joshua rolled me as close as I could get to her isolette. I touched her foot for the first time....the tiniest little foot I have seen. She looked beautiful to me, an exact little Kourtney just less than half her size. 

The day Landrey was born my older daughter became sicker than I’ve ever seen a child outside of a hospital. Joshua’s aunt had to keep her away from me at the hospital through the weekend. Then on Monday, it felt like everything fell apart. They released me from the hospital, but not with Landrey as she was still fighting for her life in the NICU. As Melissa, Kourtney and my mom went to go get the car out of the parking garage, I sat alone for transportation services to come wheel me out of the hospital. A man came in, finished loading some items, then looked around and said, "Wait, did they already take the baby down?" I broke down sobbing and couldn't stop. I wasn't getting to take my baby home. I hadn't even held her. He rolled me out and I cried all the way down. 

“Mothers shouldn’t have to leave a hospital without their baby,” I cried to my mother. I knew in advance she most likely would be in the NICU, but something about driving away without her is not an emotion you can prepare yourself for.

We had planned to go to an apartment that a local ministry supports for patients in situations like ours but it didn't work out. We then started driving around Dallas trying to find a hotel. I called to see if I had any hotel points. I didn't have anywhere close to enough for a free room. I happen to mention to the lady why I needed a room. She was moved with compassion and gave us the remainder of the points for the free might. The next day, just four days after the c-section I began to have a minor complication. They caught it before it got serious. I walked probably 1-2 miles through the hospital going to see Landrey starting four days after the c-section. We went to go stay with our friends in Dallas. I was dealing with so much and in a lot of pain from getting so much exercise so quickly. My mom kept me accountable in my faith. She would not let me feel sorry for myself. She kept pushing me to keep standing on His Word of healing for Landrey and walk in joy. Happiness is a choice. Joy never comes from your circumstances. 

On the third day of her life, the pediatric cardiologist told us her PDA had closed! This was a miracle, completely unexpected by the doctors!

On September 16. 2012, after 10 days, the morning finally came that I could hold Landrey. They had to wait until she was off the ventilator and only on a CPAP. They put her right on my chest, underneath my neck. I could feel her breathe and her heart beat steady. I can’t describe that feeling. I can close my eyes and still picture it, still feel her tiny precious body. 

September 20, 2012, her lungs became strong enough to move from a CPAP to a nasal cannula. That provides oxygen but it's not pushed. She would be able to stay on a nasal cannula for a little while, then her lungs would fill with about 50% of fluid and she would have to go back to the CPAP. This cycle happened three times before they decided she was going into cardiac failure and needed to get into position for surgery.

The biggest news came one week later. Landrey's chromosome test came back negative for any abnormalities! My heart's cry for months was that she would be mentally healthy.

We ended up deciding that our older daughter and I do better when we see Joshua so instead of staying in Dallas, my mom, Kourtney and I moved back to our house in Oklahoma. For five weeks, I drove two hours one way to visit Landrey, then two hours back home to be able to tuck Kourtney in bed each night.

Our hearts are full of joy and gratitude for what the Lord has done. He has been so faithful. They are looking at doing her heart surgery when she is 4 months old. She needs to try to weigh 12 lbs. Today she weighs 5 lbs. She keeps making progress. She has such a sweet personality. She absolutely loves to cuddle and be swaddled. She recognizes my voice and when her Daddy holds her, her stats fall into line. :)

Join us in thanking God for the miracles He has already done and stand with us for continued healing for her heart, her lungs to continue to develop, that she can process her food properly and grow properly. He is our source and more than able! We believe!

"For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently." Romans 8:24-25.

After this post was written the following transpired: Landrey stayed from birth to six weeks old at one hospital in Dallas before being transported to a Children’s hospital. Their hope was to let her stay stable and gain weight before doing the surgery to repair Tetralogy of Fallot. Her lungs collapsed multiple times with a ventilator. She was going into cardiac distress. Her lungs kept filling with fluid. She had chronic lung disease and a life threatening cardiac condition. She had a massive hole in her heart and a narrowing of her pulmonary arteries going to her lungs, due to an overriding aorta. One side of her heart was enlarged. At that time, physicians told us she did not have a genetic issue and believed she could be intellectually on track. We would not learn of her other significant life-altering issues of severe epilepsy, immunodeficiency, or intellectually disability until years later. We thought that once her preemie lungs grew and they repaired her cardiac issues that the worst would be over and she could live a healthy normal life. We were completely blindsided by what would lie ahead.