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.
Tuesday, October 9, 2012
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.
**********************************************************************************
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.
"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.
**********************************************************************************
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.
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