Tuesday, October 9, 2012

Anything But Boring

This journey with Zoe in the Nicu has been anything but boring. An unbearable roller coaster at times, mysteriously stuck in its cycling- and you find yourself screaming, I want to get off! But, you aren't in control. You don't even have access to an emergency break. Instead, you are on the ride, hanging on for dear life. The roller coaster takes sharp turns, and sometimes you are climbing high, to the top of the insurmountable mountain feeling pure joy and excitement. Suddenly, you are screaming out, seized with fear of yet another deep drop into uncertainty. This has happened more times than I can count...

I'm kinda tired of people saying, God won't give you more than you can bear, because it's been my experience that He always knows I can handle way more than I think I can. Perhaps it's just better to say, "Hey, you are going through a really hard time. I know it may not feel like it, but God is there. I know He didn't leave you. And, I know that He will, at the very least, give you the grace that you need to walk through today."

If I've learned anything walking through this whole Nicu experience, it's that I just don't have the grace for tomorrow. Things can change oh-so-quickly, and I find that I cannot even think about tomorrow let alone next week. I can only think about today and what it holds and tap into the grace that has been set before me. I guess it's that whole "let tomorrow worry about itself" thing from the Bible. Those are some pretty wise words, and I feel like I'm now living them.

It's been 10 weeks since Zoe came into this world and joined our family. She is still in the NICU, which means she still has some 'work' to do before they let her out. At the top of the list is no more bradycardia and desats in her oxygen levels. Next comes her ability to eat by mouth, and this week, she's had some set backs. We are currently in the "testing" stage as doctors try to figure out why her heart rate and oxygen levels continue to drop when she drinks from a bottle. So far, it's looking like severe reflux and that a thickening agent added to her milk will help. There will be several more tests this week to further investigate this issue.

I'm still making the hour and a half to two hour drive to be with her; spending nights in the lovely blue recliner in the corner; advocating, asking questions, doing research to educate myself, and participating in Zoe's morning rounds' discussion with her team of doctors. I feel very much a part of the decision making and appreciate the times they have asked my opinion or wanted feedback.

All I want is to bring Zoe home and not have to be in a hospital setting anymore. Sometimes being here, within these four walls, drives me crazy. And I repeatedly hear from the doctors and specialists, Give her time. Sometimes I look at them like they have four heads and I say, "I have! It's been 10 weeks!" And they stare back at me and remind me I would still be pregnant with this little one. (She wasn't due until October 22, and, surprise! she arrived August 2). Just another little lesson I'm learning- I can't control the timing of things either.

As I sit here and type in Zoe's hospital room, I am reminded to count my blessings with a grateful heart. My daughter has life and breath. She is progressing at her own pace and will eventually be ready to join our family outside the walls of the Nicu. And someday, I will look back on this season of our lives and be able to see more clearly not only the amazing work that took place in Zoe but also the work that was done in me.

Monday, October 1, 2012

Dangerous Territory

Her body seemed lifeless; an unusual blue, paleness hugging her normally pink skin. I rushed to Room 4, leaning on my husband for fear of fainting.
"Jen, what is it? What happened?" I asked the nurse. The look of worry radiated off of her face, and I quickly shifted my focus to the doctor who was standing over my daughter, working to get her breathing again.
"We'll be with you in a moment," she said quietly, and proceeded to close the curtain to Room 4.
The panic started to well up within me, air left my chest and refused to return. With jagged breaths, I went to the sink and began to scrub my hands...trying to scrub away the worry, the fear, the pain of yet another huge setback. My daughter, my precious 36 week preemie who had been doing so well, was struggling to take her next breath. I looked over to my husband. "Breathe, Christine. It's going to be okay."

We went into the family waiting room, and I collapsed on the couch. Burying my head into my hands, I tried to think, tried to pray, tried not be scared out of my mind. There were no guarantees that everything was going to be okay. Four days ago, Zoe was breathing on her own, without a cannula, without many apnea spells. But, today, it felt as though her world came crashing down around her, and so did mine.

We waited for a while, silently looking at each other- the deep worry lines accentuated in both our faces. Finally, the nurse came and ushered us to Room 4. "What brought you here this afternoon?" the doctor asked. Without giving us a chance to repond, he continued, "Your parent intuition must have kicked in. We were getting ready to call you, but you're here now."

He proceeded to tell us about Zoe's decent into dangerous territory. Her inability to regain her breathing without the support of oxygen being pushed into her lungs, her repeated apnea and bradyncardia episodes, the lack of oxygen in her little body...on and on about the major concerns: infection, seizures, the need for further testing...I steeled myself against the wave of emotions that threatened to drown my ability to communicate and understand the severity of the situation. We stayed for as long as we could that afternoon. But, we had to tear ourselves away from Zoe's bedside; the Nicu was closing for a short time, and we needed to pick up Aleena from daycare. The doctor and nurse assured us that we would be called if anything changed.

My cell phone rang twice. Once to get my permission to do a spinal tap. And once to tell me that Zoe had been intibated.

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It's hard to put into words the emotional turmoil of that experience. I'd like to say that I had a peace throughout the whole situation, but I didn't. I battled fear like crazy and the awful voices in my head that told me that everything was going to end in a tragedy. I so depserately tried to hear that still, small voice and what He was speaking to me, but the truth is- I was afraid to ask Him for clarity. I was afraid to think about anything other than Zoe pulling out of this "slump" and getting better.

Zoe had the ventilator removed on Tuesday night, and on Wednesday, we had her transferred to Children's National Medical Center in Washington, D.C. Although we loved the small, community NICU of Reston, they did not have the specialists or testing available that Zoe required. I felt completely overwhelmed by the huge, 60 bed Nicu of Children's, but I quickly understood why it's one of the best hospitals in our nation. The morning after Zoe was transferred, we met with a neurologist, two cardiologists, a geneticist, a speech therapist, the neonatologist, and the team of doctors who would be working with us throughout Zoe's stay. Each specialist explained their "plan" for her care, listened to our concerns, and answered all of our questions. Finally, I felt like I could take a deep breath.

It's funny. Ever since Zoe has been at Children's, I hardly recognize her! She used to have apnea, bradycardia, and desats constantly throughout the day. Sometimes she would cluster them 3-6 at a time. As of the last 24 hours, her cannula has been lowered to 2 liters (from 3 liters for the past 4 days), and she's had only 1 brady and 1 desat. I can hardly believe this is my child! I am able to hold her without worrying as much that she will struggle to consistently breathe. The days of my baby having multiple apnea spells and turning blue have been behind us now for 5 days.

I know that we are not guaranteed a smooth ride from here on out. I know that there may be more bumps in the road or 'steps back,' but I also know we will have the grace and strength to get through them. I haven't been certain about a whole lot on this long journey. There is very little that I can completely trust in...maybe that's why I've constantly been singing words from Israel Houghton's song:

You hold my world in Your hands
You hold my world in Your hands
I am amazed at Your love.
I am amazed that You love me...
You won't let go of me
You won't let go of me

When I just don't understand, when I don't think that I have another ounce of grace or strength to walk through the next battle, I can rest and know that He won't let go of me. He's been carrying me through since the beginning, and I know He will be faithful to finish the work He has started in both me and in Zoe.


Tuesday, September 11, 2012

Behind the Curtain in Room 4

I'm hiding behind the curtain in "Room 4" in the Nicu, doing my absolute best to block out everyone and everything else, and failing miserably. My ears perk up as I hear Rowan and Zoe being thrown out among the nurses talking, quietly updating each other. These curtains, they are so thin.

Some days I walk into the Nicu ready to face any challenges that may arise, but today, I'm tired and fighting myself. Fighting my emotions. I hear the mom next to me, nursing her baby, singing in a very off key, tone-deaf like tune. She pats her baby's back and talks in a 'soothing' tone, and I hear baby noises. She just arrived yesterday with her baby. The room to my right is empty, but probably not for long. It seems to be a revolving door.

I listen to the chaos that ensues around me. Nurses tending to crying babies, teaching new Nicu parents the rules- how to scrub in, how to touch the baby through the incubator 'holes,' feedings, talking, loudness. Normally, I can block it all out and focus on the precious life in front of me. I watch her chest go up and down. I watch the monitor above the incubator- proof that she is indeed breathing. I haven't been able to hold her today. She had her eyes dilated and numbed for her eye exam. I've learned that too much stress- even something as simple as holding her- can be too much for her little system. Instead, I settle for watching her breathe and sleep, and I dream of the day when I can pick her up without any tubes, without any leads, without any fear of her having an apnea and bradycardia episode.

I rejoice in the little things daily, and so far that has carried me through. Every little step forward with her weight, or with her feedings, or her breathing, I celebrate. But today, I'm tired. Tired of the waiting. Tired of being on this journey. Just plain tired. Perhaps it's the fact that there is no end in sight- it toys with my emotions, wrings them out like a twisted wash cloth, and leaves me reeling. Everything within me wants to scream, I've had enough!...But, what about this little 3 pound 13 ounce miracle of a life in front of me? What if she were to say, 'I've had enough! I don't want to do this anymore!' I can't even finish that thought.

This tiny, little 34 week baby, who should still be safe in my belly, fights for each day. Most of the time she rests, despite the flurry of activity that surrounds her on a regular basis. She doesn't worry about the other babies or compare her progress to theirs. She doesn't get frustrated when other babies get to go home before her. She just rests and trusts the physician and nurses will take care of her and meet her needs.

And suddenly, I can't believe that I'm still learning the same lesson. Wasn't I supposed to be learning this when I was on bed rest? And here I am now, months later with a baby in the Nicu, still learning the same exact thing. When will I be like my child and rest when there is chaos surrounding me; rest when there is uncertainty and no end in sight? When will I learn to not compare myself or my circumstances to anyone else? When will I learn to be content in the journey and trust the Great Physician to take care of me and meet my needs? My spirit finally settles within me, and I can see more clearly. My preemie infant has reminded me of the great lesson I am to be learning - not by speaking it to me - but by demonstrating it through her very existence; to rest and trust in the One who holds the journey in His hands. And now I am certain of one thing alone...there will be many more lessons learned, behind the curtain in Room 4.

Sunday, July 15, 2012

Raging in Recovery

The dreaded moment had arrived. They placed the gas mask over my daughter's face and restrained her efforts to get off the surgery table. I stood as close as I could to her little body and offered vacant words of comfort, holding her hand and telling her it was going to be okay. Her terrified screaming soon turned to soft crying as the affects of the sleeping gas took place. Her tense body went limp and doctors carefully laid her head on the table. The nurse quickly ushered us out of the room and back to our belongings. "We'll come get you when it's done. Please try not to worry. We promise to take good care of your daughter."

I bit the sides of my cheeks to restrain the waterworks building up in my throat. How do I not worry? I just entrusted the life of my daughter into the hands of people I just met this morning: nurses, doctors, anesthesiologists. Perhaps routine to them, but not to me. How can you ever feel comfortable walking away from your sedated child on the operating table?

My emotions threatened to take over my body. I sucked in a deep breath and began to focus on controlling the sobs that wanted to escape. "Are you okay?" Glenn asked. I couldn't answer for fear of completely breaking down. I nodded my head, and we walked to the cafeteria. I silently prayed, cried out, for Peace to overtake my racing heart. Why couldn't I relax? Why was I so anxious? Sure, I knew all the verses in my head about "asking and receiving," "not being anxious about anything," "trusting in the Lord with all my heart..." My eyes started to well up with tears as I tried to shovel a fork full of runny scrambled eggs into my mouth. Glenn looked up, somewhat uncomfortable with my emotions in the middle of the busy cafeteria and said, "Christine, just focus on your food." I looked down at my plate, no longer hungry, and pleaded in my head, "God, please. Just please. I can't even pray right now. I don't have the words." For all the knowledge in my head about God, for all the words I had at my disposal, I lacked all ability to transfer that into a heart-felt, faith filled prayer. For all my years of walking in faith and having a relationship with God, why couldn't I just grab a hold of Peace and know deep in my heart that it was going to be okay?

As we walked back to the family waiting area, we were surprisingly greeted in the hallway by Aleena's doctor/surgeon. My heart flip-flopped as I listened to the diagnosis- another venous malformation. Not cancerous. Not a tumor. Not life-threatening. Actually, the lump was an extension of the same one from last summer. Our daughter was in recovery, and we could see her shortly. I breathed a half sigh of relief. Not until I had my daughter in my arms again could I relax.

Five minutes later, we were ushered into the recovery unit, and the moment I passed through the doors, I could hear a familiar angry scream echoing down the hall. "Oh God, that's my daughter," I thought. As we rounded the corner, there she was, literally fighting the nurse trying to throw herself off the hospital bed. Gown undone, arms flailing, the nurse was restraining a very angry three year old. Aleena was trying to rip out her IV, tear off the chest wires, pull off the oxygen pulse monitor...it was not a pretty sight. She was sobbing inconsolably, and quickly we went to her bedside. The nurse gave me a sympathetic look as I rushed to try to hold Aleena. The fit of rage lasted for a while longer until they finally gave her medicine to reduce the pain and calm her little body. After what felt like hours (but in reality was only 10 minutes), my daughter snuggled quietly in my arms watching Nick Jr. on the small TV and ate an orange Popsicle.

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I've replayed my daughter's fit of rage in my head quite a few times. She had come out of the anesthesia prematurely and as a result was an angry, inconsolable mess. I just wanted to comfort her. I just wanted her to settle down in my arms and know that she was loved and everything was going to be okay...and here's the thing- I have a feeling that God probably wanted to do the very same thing for me in my moment of panic and anxiousness. I can picture Him offering me His loving arms of peace and comfort. "Over here, Christine. Sit with me and rest. I've got you in My arms. I have Aleena, too. Don't worry. It's okay. You can settle, " perhaps He would have said. But, I never heard Him because I was too busy flailing my arms, allowing anxiousness to keep me distracted, and allowing worry to restrain me. My own fears clogged my ears, prevented me from settling down- as if I was throwing my own kind of "coming out of anesthesia" tirade. Now I understand why Peace had difficulty bringing any type of comfort. I was inconsolable, and needed a good dose of calming medicine before I could actually hear clearly....And, just like I tell Aleena, I can now tell myself, "You can try again next time. Learn from this, and know that next time, things can be different."

Friday, July 6, 2012

Finding Gratefulness in the Ashes

I walked into the phlebotomy lab in a rush. My most recent specialist (the hematologist) requested a plethora of tests to be done, and I had exactly an hour before needing to be at another doctor's appointment. The lady behind the check-in window paid no attention. And despite only one other person being in front of me, it was a solid 15 minutes before I was even called up to check in. I kept track of the time, glancing at my watch every few minutes or so wondering how much longer I'd have to wait for my needle sticking. Finally, the lady behind the desk called me back. After some brief chit-chat, she stuck my left arm and began digging around. I cringed in pain, as she tried to tap the shifting and dehydrated vein. At last, she pulled the needle out and said, "Other arm, I guess." Great, I thought. This lady is driving me crazy! Then, she did the unthinkable...

"Do you know what you are having?" she asked.

"A girl," I replied casually. "This will be my second daughter."

"Oh, I had two girls. I have a son who was born at 34 weeks. He was premature and is still underweight to this day! I also have a daughter who is ten months old now."

"You said you have two girls and a son?" I asked.

She paused for a moment and said, "No, I only have my son and my daughter."

"Oh," I said quietly. I had thought for sure she said she had two girls.

...She drained tube after tube of my blood, and despite a quick moment of silence, she unloaded her pain, refilling my veins with her story.

"I had four miscarriages in between my son and 10 month old daughter. One of the babies I lost at 17 weeks; she was a girl. I never wanted to get pregnant again after that, but it happened. Eight months later I got pregnant with my daughter, and my husband was certain that it wasn't his. He left me right before my daughter was born. You see, I have a blood disorder that caused me to miscarry so my times. Once they figured out my disorder, they were able to give me medicine, and I was able to carry my daughter full term. They even told me that my son is a miracle that he made it as long as he did without me on medicine. Well, after my husband found out that I had a blood disorder and that my daughter was actually his...he fought me for full custody of her."

I sat stunned, watching the butterfly needle in my arm. My heart hurt for her. "I'm so sorry," I managed. "That is a heartbreaking story. Do you have family in the area?"

"No family. I got divorced and I've been on my own for almost two years now with my kids. It's hard, but I'm making ends meet."

I didn't know what to say. I managed to put something together about having faith and family to get you through tough times and how she was better off without a husband who could be so cruel. But, the truth is, I was still stuck on the fact that she had unloaded her story on me, and that her tragedies and trials were so beyond what I'd experienced in my lifetime. I had been so self absorbed in my own world, only looking at the trials and tribulations that I had most recently endured. I forgot that there are other people out there who have endured way more than I ever could handle in this world.

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Why do some people seem to coast through life and others seem to avoid tragedy and hardships? Why do some people get to stay married for 53 years and go on "Couples Wheel of Fortune," while others lose their spouse to cancer after only 33 1/2? Why do some couples get to have 5 kids while others struggle with infertility for five years and never see the dream of having their own children fulfilled? There are so many more questions that I could ask, but the truth is that I can't answer any of them.

The only comfort I can gather is that I'm not God, and I don't see the big picture in every circumstance. I'm not responsible for answering the "why?" but, I am responsible for how I live each day. I have three choices: I can focus on all of the hard trials that I have endured, all of the pain that I have walked through, and all of the things I don't have in my life... I can focus on how other people seem to coast through life, don't have to endure nearly what I've been through, and get to have what I only dream of having... Or, I can focus on all that I do have in my life, all of the beauty that has come from the ashes, and the way that God can work out even the most difficult things for good in my life. One option allows me to wallow in self pity, one option takes the focus off myself and causes me to be continually envious of others, and one option allows me to develop a heart of gratefulness, even in the very midst of uncertainty and hardship.

It's funny- I'm realizing now that God is teaching me (in my 30s) the same lesson I am teaching my 3 year old. "You have a choice," I hear myself saying to Aleena.
And suddenly, I hear God saying the same thing. "You have a choice in how you are going to approach each day." We may not have control over our circumstances, and we may not have answers to the many questions that we ask when walking through hard times. But, we do have control over our attitude and our choices - and perhaps, despite the pain of circumstance, that's the key to living each day with gratefulness in our hearts.

Tuesday, June 26, 2012

Of Guns, Angels, and Fighting Fear

I woke up in a cold sweat, my damp shirt revealing the uncertainty and fear of my dreams from the night before...something about being out of control and other people dominating over me... I adjusted to reality and my heart relaxed a little; but my mind was swept up in thinking about the very dynamic of fear. What caused me to be afraid?

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I've fought fear all my life. I can see myself at 6, tears streaming down my face, begging my parents to let me sleep in their bed. I was certain I had heard a noise downstairs, and I just knew it was a man in a mask who had come to take me and all my dolls. It wasn't long after that, my father took me to a shooting range with one of his guns. He brought an empty Downy softener bottle, which he placed at the end of the range. After he had positioned me right next to him, he told me to cover my ears, and he pumped that Downy bottle full of lead. As I stared in awe at the assaulted plastic container, he said to me, "Christine, if anyone comes into our house, I will fill them with bullets, just like I did to that laundry bottle."

I guess that was my dad's way of showing me that I didn't have to be afraid. He was there to protect me. And for a while, that really helped. I had also been taught that Jesus and His angels were there to protect me, but I couldn't see them, and the thought of invisible beings in my room freaked me out a little too. When I heard noises at night, I started to wonder if my dad would be able to make it to the intruder before the man in the mask got to me, and again I wondered how an invisible being was going to protect me from a human being.

Fast forward 7 years. I was 13, and my family was living in Port-Au-Prince, Haiti. It was late one night, and while my younger brothers were taking a shower, my father was loading his shot gun in the dim candle light at the kitchen table. I stood back for a moment, hiding next to the steel bar door that separated our sleeping area from the kitchen. I watched as he went to each door and double checked the locks and bars that held my family safely within. "Dad, what are you doing?" I asked. At first, he denied doing anything out of the ordinary. But I persisted, and he finally explained that he had fired our gardener for stealing from us. My dad had been warned that the gardener and a bunch of his angry friends might come back to rob and kill us.

I sat, wide eyed at the kitchen table, looking to my father for comfort. I was afraid, panicked, scared out of my mind. I was only 13, and my father had told me the truth. There were people who wanted to rob and kill my family in this God-forsaken foreign country. I stifled my tears. My dad put his loaded shot gun on top of the kitchen cabinet, grabbed a piece of paper and sat down next to me. He picked up a pencil and drew a picture of the large iron gate that protected the Embassy that we called home. He said, "Christine, you know the gate right outside our front door? Well, I saw an angel standing guard at the gate." He continued drawing. "The thing was- the angel's knee caps reached the very tops of the gate, which is about 9 feet tall. We have nothing to worry about, Christine. God has sent his angel to watch over us, and he is a bad ass angel!" My dad laughed for a moment, then he got serious again. "And, if for some reason, any guys get passed that angel, I'll use my shot gun to pump them full of lead." He winked at me, hugged me, and sent me off to bed. Somehow I felt safe. I knew two things- my father would never lie to me about angels, and my father was a great shot. I knew we would be okay.
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Fear has always been there- hiding somewhere in my heart, playing upon the very real possibilities in life- things that I don't ever want to experience. The loss of innocence, life, love...the list is literally endless. I'm at a place in my life now where I don't want fear to have any part of my heart. But how do I live life without being afraid of the bad things that can happen? The truth is- just because I believe in God doesn't mean I am going to be spared from bad things. Trials and hardships come all the time- it's part of life. I'm not guaranteed I won't face hard times, but I am guaranteed that I won't go through it alone, and that He will give me the grace to get through it. Is that enough? Is knowing that God will carry me through the hard times enough to not live in fear of them? I believe the resounding answer is, Yes, because that may very well be the only way to truly be set free from fear.

Friday, June 22, 2012

The Voices in My Head

I can see how people on bed rest can get depressed. I was teetering on the brink of depression and self pity yesterday. There's no reason to get out of bed, much less get out of your pajamas. There's little to no reason to take a shower (cause your husband and daughter love you-greasy haired, oily skinned and all). There's no place to go, so no one's going to see you in public. Why bother maintaining any sense of concern in your appearance? Depression is all consuming. It sneaks up on you, makes you feel lousy about yourself, tells you there is no point in getting out of bed or even living. Why bother? is the overwhelming attitude I hear ringing in my ears. Self pity says to me, Poor you! You can't go any where or do anything. You are restricted, confined, trapped into resting. You are in pain, you are pregnant, and boy you are having a rough go at it this time around. It's so sad how awful your life is. I listened to these voices yesterday, and I literally thought I was going to go out of my mind.

I woke up thinking about something that I could do today. I knew I couldn't have another day like yesterday or I would succumb to the voices in my head and fall into the abyss of depression and self wallowing. I "assigned" myself the task of making a pitcher of ice tea and mailing out one bill. I knew that the walk down and up three flights of stairs to the mailboxes would definitely require all my strength and energy, so I needed to pace myself. It's not like those two tasks alone filled me with joy...especially after reading my friends' facebook posts about their "to do" lists involving, painting, moving furniture back into bedrooms, baking cupcakes, shopping, building shelves, etc (was I actually capable of that at one point?)...but I realize that I needed to have something to do, or just something to look forward to. Even if it's as simple as enjoying a glass of ice tea that I made. I know, heating water and putting tea bags in sounds like a such a minimal task, but to me, it was something to do. I guess now I really do sound like that 85 year old with a broken hip.

I can't sleep away the bed rest. I can't make the time go by any faster by reading a book or watching TV. And I certainly can't just stare at the walls for the next 4 months. The mornings that I wake up, actually get out of my pajamas and give myself a little task to do seem to turn out better than the ones where I sleep in until 11:30 AM and watch TV for 5 hours. I have my good days, and then the not so good days. I guess it really boils down to which voices I'm going to listen to- the ones of hope, perseverance and determination, or the ones of depression, self pity, and anger. But, then again, I don't have to be on bed rest to decide which voices to listen to. I suppose everyone has to wake up and determine what kind of day it is going to be.