This was originally posted April 7, 2013.
A journalist paints pictures with words. With the light tap of a keyboard, they can allow you to visualize events as if they happened to you. But how do you take someone through the deepest and sometimes disturbing emotions you have felt over the past few months.
We have come full circle. We have reached a year. Landrey is just six months old, but it's been year since my life has drastically changed. Sometimes, it feels It's been sucked away from me. A fight I didn't expect, but a miracle I did.
Time has been redefined. The words sick, stable, healthy and healed have all taken on very personal meanings. Instead of a Wikipedia definition, those four words flash vivid memories that swell fierce emotions. When I last blogged, Landrey was still in the CVICU. At that point, I thought there's absolutely nothing that could be harder than watching your baby almost lose her battle. Emotionally, yes, I was right. Physically, I hadn't yet learned what exhausted means.
Landrey was released just a few days before Thanksgiving. I had been given a daunting list of discharge instructions that took them eight hours to teach and communicate. Things no mother should have to be truly trained on. "Mrs. Eargle, are you confident, you know what cardiac arrest looks like? Can you effectively give CPR? Do you know when to start it? Are you confident in dropping a feeding tube down her nose? Do you understand when the oxygen machine malfunctions and when she is getting too little or too much? When do you give her life-saving medications? What is the specific purpose of each drug? What do you do if she spits out her life saving medication? Are you confident you understand what increased work of breathing looks like?" What do you do when you see her strain to breathe?"
|Landrey at six months old|
That's when it started. Usually when you finally get to bring your baby home from the hospital, there is so much excitement and joy. Of course, you have the new baby jitters. But this? This was unlike anything I experienced. It truly was 24/7. EXTREME VIGILANCE. I watched her. I noticed the signs they described. I took the appropriate steps. One of the hardest things was that she was not allowed to cry. She didn't have enough oxygen reserves in her body that when she cried it would deplete it and she would turn blue. Landrey cried almost constantly, which means her mouth, tongue and lower part of her face would turn blue. She would start to panic at times, and her head would go blue then her body. To this day, I'm not exactly sure why. They told me she shouldn't have that much pain. Deep inside, I knew she was hurting. One day, she cried for a 10-hour span, taking a 45-minute break in the morning and a 30-minute break in the evening. and I, well…I almost never slept.
I could never shut my brain off. "What time do I administer this medicine? How much did she eat? She's choking. How many seconds has it been since she breathed. How blue is she? Blue enough to start CPR or just regular blue."
I could never shut my brain off. "What time do I administer this medicine? How much did she eat? She's choking. How many seconds has it been since she breathed. How blue is she? Blue enough to start CPR or just regular blue.'' No one could really do my job. No one had been trained. If they took over it was only for a few hours with me setting out the day, writing out the plan and being texted with questions. That doesn't belittle the great two people that were able to break me, but those two would tell you the same thing.
Little by little, Landrey became stronger. Little by little, I became weaker. If I were to struggle with something that I'm willing to admit in a blog, it's pride in my own strength. I like to think of myself as tough minded. By March, I found out I am not.
I had seen God save her life as the doctors stood in awe watching. But there was still healing to go. It felt like that if I was not in constant prayer, something would go severely wrong. Each day felt like a battle I wasn't prepared to fight with a disappearing army. Our family and friends had sacrificed for so long keeping Kourtney during Landrey's 73-day hospital stay or so that by the time Landrey had come home, I had no help left. I had to take care of a critical care baby, with an 18-month old desperate for attention, a husband in football season who eventually took another head coaching job in another state. It felt like everybody left me. They disappeared. My relief vanished. My support system…gone. I was alone. I hadn't been trained for this moment. Nothing had prepared me physically for this type of care. I don't know medicine. How was I supposed to do this? Why was I having to deal with this, not just deal with it, but deal with it alone. I lived 8 hours from my mom. I didn't choose this. I felt that everyone assumed that since she was released from the hospital that she was a normal healthy, sleeping baby. "I mean they wouldn't release a baby that needed critical care, right?" I was constantly and completely captured with making certain she survived. She slept maybe 3 hours a day in the beginning. I would have to have use my entire body and cradle her to comfort her little hurting body. I would check constantly to ensure her cannula stayed in or check the flow on the liter of oxygen. I would watch her eyes while feeding because they seemed to be the first sign that she was getting milk down her lungs. I knew that if her mouth got dusky her blood oxygen level was probably around 50 instead of 100 like it should be. I memorized the way she looked when the monitors in the hospital would read a danger zone. She panic cried, not fussed. I know that her heart rate would be around 200 when she panicked. I felt like I saved her life, and saved it every day. I felt I lost myself in caring for her. I was a professional life saver, but I didn't earn a nursing degree or the respect of anyone, because no one knew what I was going through.
I felt abandoned.
I couldn't rely on others because we were in isolation to prevent germs. I couldn't drop Kourtney at a daycare or a Mother’s Day out. I couldn't ask a stay at home mom to take her because their kids could pass germs to Kourtney who could pass them to Landrey. Joshua's head coach's wife at the University we are coaching in Oklahoma was my only person that could really help me during Landreys' doctors appointments. But on a daily basis, I had no one to turn to.
Then we had to move and that complicated things. Joshua received a fantastic offer…to be a head coach. He moved immediately to take the position at a University in Texas. Although it was more than thrilling and completely exciting to see God work like this, it left me alone to sell and pack the house. By then, Kourtney and Landrey had gotten sick with the norovirus and Landrey had to go back to Children’s.
|Landrey battling the Norovirus. She became dehydrated and couldn't keep down her life-saving medicine.|
"God, I know you are big enough to take this." You keep providing, but although Landrey seems to be healing, I am wearing out. I get 4 broken hours of sleep at night. I can't go on. I don't know what to do. No one can relieve me. God, I just need a nap."
On February 12, 2012, I took both girls to the Pediatrician to follow-up from her hospitalization. I didn't complain to the doctor. I just went through their symptoms. On the way home, I received a phone call. "Mrs. Eargle, your pediatrician is blown away with what you are having to handle. He is going to send you a nurse from the NICU here at the hospital 30 minutes away to come give you a nap."
I wanted to cry. A nap? God knew the only way I could really sleep was if an RN came to my own house and took over. The next day, a kind woman named Beverly showed up and the following night she brought dinner. Tears came to my eyes then and even now. God hears the cry of your heart. He knows your panic. He knows your war. He can find someone qualified to give you a nap.
Every time I wake up even today, I almost sprint to Landrey's bedside. "Did she make it through the night?"
Every time I wake up even today, I almost sprint to Landrey's bedside. "Did she make through the night?" She has been cleared by the cardiologist, off of oxygen, off all life-saving medication but I still have that tiny panic inside that makes me react strongly when I shouldn't. The Lord spoke to my heart. "Just because you have been given a validated reason to fear (or worry, feel anxious, or be depressed) doesn't give you the right to hang on to this crippling emotion for a lifetime. "My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. " James 1: 2-4 What does that look like? That means that in the middle of your situation, maybe even your unfair situation, that you don't have the right to walk in anger, fear, worry or doubt. That means we are to choose joy, choose peace, choose to trust in God. You can ask my best friends, I have not done this every day.
You see, I have reason. I have started CPR on my child. I have seen her turn blue not once but after choking on almost every one of her eight feeds a day for 60 days. My every hour after Landrey left the hospital has been something hard to put into words. Any mom would look at what I have been through and understand my tears, my little panic moments, my fear. I HAVE REASON BUT THAT DOES NOT GIVE ME THE RIGHT. You see, these are the trials. These are the moments that James was talking about. You don't have a need to choose peace in moments of peace. You have to do it when you have opportunities to panic.
I have the reason but that does not give me the right.
In January 2013, she got off oxygen, In March, she got off all life-saving medications. Today, she is completely healed of pulmonary hypertension. Her heart is functioning normally. She now sleeps and eats like a normal baby. She is expected to catch up on her physical milestones. Landrey is being healed.
|Landrey at six months old|
So why do I feel drained and broken. Why am I still dealing with emotions that are not validated with symptoms. For the first time in a year, I'm finally stopping. I have now had maybe 8 full nights rest in about 190 nights. I would love to lie to you and say that all is perfect. But it's not. It didn't go like I planned. I'm grateful for the miracle, but the journey has been exhausting.
Jesus took our sins on the cross and conquered them. He took our sickness. He has the victory. Just as we stood on the Word for Landrey's healing, we are standing for a full healing of emotional and physical exhaustion. I'm here to tell you that emotional pain is as real as any physical pain. I want to express that while you take those physical steps a physician would recommend, also take it to God.
One thing that I have learned over the past three months is the difference in reason and right. What in your life is giving you reason to hold on to fear, anger, doubt, anguish, hurt or any issue. All of us have a reason. It has been validated by a situation in your life. There is a situation that you have had in your past that gives you a reason for how you feel, a reason for how you act and a reason for why you carry this even today. You might be angry at God, at one person or even a situation. Maybe the situation isn't fair. Maybe you grew up and your dad was taken from you, you lost a child, a friend, a job, a dream, a spouse walked out, something you couldn't control. I'm learning it doesn't give us the right. God keeps reminding me when I get that panic feeling and check Landrey's pulse for the 50th time, that yes, I did have valid reason to fear, but I don't have the right to carry that crippling emotion for a lifetime.
Let Him take it, but He can only take it if you fully release it.
It's a been a year since I was told by physicians something would be terribly wrong with my unborn child. As I write this, my eyes are meeting the eyes of a healthy baby whose story has touched the hearts of people she may never meet. God is real. This year has been long, hard and taxing but I would not exchange the deeper relationship I have now with my Savior and with Joshua. So I challenge you to explore what you have given yourself as a reason as to why you believe God can't heal, clean up or restore something in your life. His power is real. Landrey Hope is proof.
|Easter Sunday Morning 2013|
"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, Landrey battled through many illnesses that would turn critical requiring inpatient stays. The year that followed would be her sickest to date with severity of her illnesses picking up steam and new symptoms that indicated life-altering challenges that couldn’t be predicted. With each illness brought God’s grace either through quiet moments crying out to Him or from the kindness of our church family pouring out their love that sustained us.