The Whole Story

24 Oct

For three months, I’ve been treated for gestational hypertension. Same rodeo as the last time, it seemed. High blood pressure, early induction… I knew this drill.

On September 26th, my induction began. Two and a half weeks early. Just right in my book.

I had a tense labor with moments of fear and uneasiness that seemed looming and everlasting while in the moment. When they told me that I wasn’t dilating, my mind darted to the fear that an emergency c-section would become imminent. When they told me that the baby was under stress because of a lack of amniotic fluid, the same thoughts flooded my brain. When the baby’s heart rate decelerated when it should have accelerated, my own heart raced. Fear. Helplessness. Paranoia.

In the end, God delivered a beautiful baby boy to us. Our Knox Jeffrey.

Knox (55 of 90)

 

 

The pain in my neck started one week after Knox was born. It was an aching, throbbing pain that wouldn’t subside with any amount of medicine, heat, massage or change of position. It was debilitating at times. I would have to turn my entire body 90 degrees just to see anything to my left or right. My doctor prescribed muscle relaxers… certainly this was pain I was experiencing was a result of  breast feeding, posture, postpartum weight distribution, carrying a toddler, etc.  But the muscle relaxers failed to work. The pain meds failed to work.

After two weeks of nonstop pain accompanied by the still-high blood pressure, the first emergency happened. It was Tuesday morning, October 15th, and Navy woke up at 6am crying. His early morning distress woke me up, and as I sat up to go get him, I realized I was suddenly dizzy and nauseous. Barely making my way to the bathroom, I began to get sick. The room was spinning. Every time I tried to sit up, I would vomit. Still spinning. Our bathroom shares a wall with Navy’s bedroom and as I cried and screamed for Stockton, all I could hear in response was my sweet Navy on the other side of the wall. “Mommy? MOMMY!”

Realizing my condition was far beyond anything that either of us could or should attempt to control ourselves, Stockton called 911. Within a few short minutes, the ambulance was there. Still spinning. Still vomitting. Still crying. Still scared.

The emergency room was prepared for me and I was immediately given a high dose of blood pressure medicine, after noting that my blood pressure was well above safe and normal levels. The pressure dropped and my dizziness subsided. A CT scan revealed nothing to be concerned about so by 4pm I was sent home with a new blood pressure prescription and some pain medication for the hangover-like headache I was experiencing.

Wednesday, Thursday, Friday and Saturday were as “back to normal” as they could be. New fears had presented themselves, and I could feel depression creeping up on me. Then Sunday came.

While getting ready for church, the neck pain was suddenly explosive. It flared up like a firecracker and then it found its way down my left arm. The tingling came next. Then nothing. Numbness. I began to cry again, terrified of what all this meant. Stockton joined me on the edge of the bed, immediately taking my blood pressure and asking about any other symptoms. My main symptom…. fear. These are the symptoms that women experience when having a heart attack… right?? Or was it a stroke? Or was it nothing and I’m just paranoid… No, I think it’s something. I just can’t ignore it. No, I don’t think I need an ambulance. Let’s just go.

We dropped Navy off at Kaley’s and reluctantly texted my parents about our second visit to the ER in 4 days time. My mom and Maddie were due to depart for Florida for Maddie’s fall break in just a few hours. I hated to tell them I was hospital bound. What if I’m just crying wolf? Maybe my arm doesn’t feel that numb. I’m probably imagining it. My neck is just sore from breast feeding. Although, it does hurt to the touch now…

We sat in the hospital – Stockton, Knox, Dad, Mom and me – and waited for answers. Even hypotheses. Anything.

An MRI revealed the reason for my neck pain. A vertebral artery dissection (damage to one of the arteries leading to my brain, causing blockages and clotting). The MRI also showed something else… “some spots that we just can’t explain away since you’re just 25” said my doctor. Some spots that he and the attending neurologist would later tell me was a stroke.

A stroke. A stroke. At 25? But…

A good doctor knows how to treat patients well. A great doctor knows when to defer to someone with even better qualifications, expertise, equipment and resources. My doctor at Memorial hospital did exactly that and within a few hours I was in the back of yet another ambulance, this time on my way to Loyola University. But this time I couldn’t bring my newborn baby. Little did I know that the last time I would ever be able to cradle and nurse my sweet Knox was in the emergency room of Memorial Hospital, connected to IV’s and EKG wires with only a dingy curtain separating us from the rest of the ER. There was nothing ceremonial or touching about our last moments bonding through breast feeding.  And for that, I will always carry a bit of sadness.

I arrived at the Loyola University Medical Center sometime in the middle of the night and was taken straight to the neuro ICU. Surrounded by critical head injuries. Brain tumors. Critical strokes. Comas. This was the company I was keeping. How did I end up here, in the same unit as these people who can’t speak? Who can’t move their arms? Who have not opened their eyes in a month? 

The testing began the following day. MRA of my head and neck, confirming that I indeed had the vertebral artery dissection, but instead of just one artery having the damage, BOTH of mine were damaged. Bilateral Vertebral Artery Dissection was my new diagnosis. But why? As it turns out, most patients who have BOTH arteries dissected means there is an underlying condition… that these dissections were no coincidence. A common disorder in this case would be FMD (fibromuscular dysplasia), a disorder of the blood vessels throughout the body indicated by irregularity of most vessels. An MRA of my chest and abdomen, however, revealed no such diagnosis. No FMD. No explanation for these dissected vertebral arteries.  I know I should be thankful that I don’t have a condition or disorder that I will deal with for the rest of my life, but God, I’ve been praying for clarity! I’ve asked countless others to pray for clarity! I didn’t pray for a miracle or for all of this to just disappear. I just want the peace that comes with a diagnosis so that I can have answers! Something that will help me going forward. CLARITY, GOD, I ASKED FOR CLARITY AND I DON’T HAVE IT.

The doctors from Loyola are awaiting imaging from Memorial Hospital to try to see what the Memorial doctors saw… the aforementioned, inexplicable stroke. Because that’s another thing they didn’t catch on the MRA from Loyola…. they saw no indication of the “stroke” that the neurologist sent me to Loyola for in the first place. Again, I know I should be grateful for the absence of a stroke – and don’t get me wrong, I AM – but where is the consistency?? One doctor says stroke, another says no stroke? How can I be sure? What was it that they saw at Memorial, if not a stroke?

I was discharged from Loyola on Wednesday on many medications, among which are drugs that prohibit me from breast feeding my son. My heart was broken, and I continue to feel the very physical and emotional side effects of no longer nursing my baby. My newborn baby. I nursed Navy 7 months.  I wanted to nurse Knox for a year! I have been stripped of this gift… this beautiful, precious, miraculous ability to feed my son and keep him connected to me even though he is no longer in my womb. YOU STOLE SOMETHING FROM ME. This should be MY decision to make, but you’ve left me no choice.

I’m home now. Being treated for the blood clots which have formed in my neck and the dissections which are causing my pain. Waiting for time to heal what has been broken inside me. I’ll return to Loyola in 3 months for a follow up. But I’m still left without answers. Why did this happen? No one knows. Will it happen again? You can’t say “always” or “never” in medicine, but I am expected to be at low risk for a recurrence. But if that’s the case, why did it happen in the first place? What is my prognosis for the future? To be determined. 

I am thankful for my health. I’m thankful that they deemed me stable enough to come home. I’m thankful for my husband who stood beside me through all of this and witnessed his bride in the most emergent and scary situations either of us have ever endured. I’m thankful for my sons. I’m thankful that in this modern world, Knox can survive and thrive on formula. I’m thankful for my parents and my sisters, who gave up their vacation to Florida without giving it a second thought and took such amazing care of my kids, dog and home while we were gone. Many people made sacrifices for me… this week wasn’t only hard on me, it was hard on all of us. I’m thankful for a God that became human and understands physical pain and hardship. I’m thankful for all of the people who have prayed for me and continue to pray for me. I have much to be thankful for. I’m also thankful that my God understands my sadness and that it may take me a while to come to terms with all that has happened in the last several weeks.

Today I turned 26. Wasn’t quite the birthday anyone dreams of, but it was a birthday nonetheless, and a day to celebrate life. And I got to celebrate by being home with my loved ones. A birthday wish come true.

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11 Responses to “The Whole Story”

  1. Annette Kapp October 24, 2013 at 10:35 pm #

    Whew!! I am truly sorry u had all this to endure!!! Take good care of yourself!

  2. Dad Helman October 25, 2013 at 7:37 am #

    What a story. I’m glad no one is here with me to see me bawling like a baby. However, I’m reflecting on events of over 20 some years ago when we had you at Riley Hospital for conditions totally unrelated to this, and God walked us through it. And He’s done it again. You have been faithful, Courtney. Your boys know the love you have for them just by your touch, your presence. You are blessed. It’s a good birthday gift.
    I love you.

  3. Mark Beeson October 25, 2013 at 8:46 am #

    Sheila and I read your post aloud. We are praying…, and we will continue. We know you and Stockton are in the battle together, fighting for everything good and true and right and “life-giving.” I simply want to add this little reminder of “what’s true” …, GOD is with you and so are MANY MORE THAN YOU REALIZE.
    You guys are loved. Live strong. You matter.

  4. Kate October 25, 2013 at 9:02 am #

    My dear friend Courtney- you are amazing. You are an AMAZING mother, wife, daughter and friend. God is with you and like your dad said, is walking you through this. To not have answers leaves so many questions and concerns, the amazing thing is, is that you are okay. You are so strong. You are so beautiful. Your love for your family is so amazing and your boys are beyond lucky to have you as their mother. You are an example to us all and I am so thankful you are okay and most of all, at home with your boys. Family is everything and your family has shown this by far. I love you dearly and lift you up in all my prayers. Thanks for sharing this story…

  5. Michelle DeFrancesco Bythrow October 25, 2013 at 10:15 am #

    Courtney, I’m standing in the lobby of an Indianapolis hospital where Jill Ulrich/McKelya has just delivered a second baby, Lyla Jane, and I’m in tears as I read of your heartbreak. I am very sorry about the unknowing days you’ve experienced and I pray for the clarity to come. God is with you in the silence and in the darkness. He knows…everything. He has a mighty plan and I will be praying His blessed Word for you daily!

  6. Maureen Bobay October 25, 2013 at 11:39 am #

    My dear Courtney….(the little girl who came to our door so long ago).

    After reading your story, our hearts go out to you and your family with all the pain and suffering you have been through. It is so hard to understand God’s plan for each and every one of us. We do know how much he loves us and somehow we become stronger through each trial and tribulation.
    You are so blest to have your wonderful husband, Stockton, your babies, Navy and Knox, your Mom, Dad, Kaley, Maddie and extended family to be there for you.
    Please know you are in our thoughts and prayers as you walk through this garden of life.
    We love you, dear heart…
    Don & Maureen Bobay

  7. Pam Jones October 25, 2013 at 1:44 pm #

    Courtney I went to school with your Mom. I just read your story. I’m not a doctor or a nurse, but my sister suffers with some of these symptoms as well. She was diagnosed with Chiari Malformation. It isn’t well known but they are finding that it has many different symptoms. If you want more information on this I can connect you with my sister. Chiari is something in the stem of the neck that did not develope right and causes all kinds of trouble and give symptoms of other things such as heart attacks and strokes. It’s a disease that can attack any age. So if you have more questions contact me on fb. Pam Jones. God Bless You and your family.

  8. Lucy Meisterheim October 25, 2013 at 2:04 pm #

    Dear Courtney,
    So glad to hear you are home with those two BEAUTIFUL baby boys and doing so much better! Be strong, have faith and God will walk you through this. Just relax, take good care of yourself and enjoy those two little boys, your wonderful husband and a family who loves you very very much!

  9. Michelle Scott October 25, 2013 at 2:19 pm #

    Courtney~ I Just saw your story here today on Facebook. I can’t imagine what you and your family have gone through! Family & Friends are a blessing, so I just wanted you to know if you need anything we would love to help! ox

  10. Niko Pagni October 25, 2013 at 10:53 pm #

    Praise God for SOME clarity. My prayer would be that you never enter that part of the hospital again. I was there for 4 years, I felt your fear and anxiety. You have so much support, in your family and friends and that is a true blessing. I will continue to pray for good health and no recurrence!!

  11. Shelba J. October 26, 2013 at 9:06 am #

    Dear precious Courtney – Thank you for sharing your whole story! The more people that know will mean many more prayers for you and the family! You are an awesome woman and have wonderful examples of strength in your mother, grandmother and RIP G.Markley. A loving and devoted husband by your side, two beautiful sons, a caring family and a huge circle of friends. Most importantly, you have a strong faith in our Lord and His Will. As Tommy Pagna would often say, “God writes straight with crooked lines”. I have come to live by those words. May God bless all of you and know you are loved and prayed for by many. The angels are with you. Love, xoxo

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