Saturday, November 13, 2010

When My Heart is Breaking, Heaven Stands

On the Saturday before Halloween, Evie had a small seizure while we were visiting Dave's mom in North Carolina. After rushing to the E.R., she was treated for pneumonia because she had an infiltrate in the upper lobe of her left lung. We were sent home with the orders to return to the E.R. on Sunday for re-examination and to follow up with our pediatrician Monday.
That Monday, we visited our fabulous pediatrician, Dr. Fieste who hypothesized that her seizures were simply Benign Neonatal Sleep Myoclonus, a condition that causes babies to have something that looks like a seizure while waking up from sleep or a nap. He scheduled an EEG with a neurologist in Greenville just to be sure. We went home reassured and relaxed and slept soundly for the first time in two nights.
On Tuesday morning, after Dave had left for work and Aiden was brought to school, Evelyn had another seizure- like episode. This time it looked stronger than before. I noticed she was stirring her swing and when I went to look at her, her eyes were rolled back to the left and her arms and legs were rhythmically twitching. I lifted her and held her to my chest while I sang to her. When she came to, she smiled at me, cried, then began to nurse. I immediately brought her to Dr. Fieste. He notified our neurologist, who expedited our EEG and appointment to that Thursday.
Thursday came without incident and she sailed through her EEG without an episode. Our consultation with our neurologist, Dr. Morales was the next day.
Thursday night, Evie and Dave came to class with me because I was afraid of her having an episode without me. We were happy and relaxed though, because she had been fine since Tuesday and her episode then wasn't that bad.
Thursday night is "spend the night party" for Aiden. It started before Evie was born to get him ready to stay with my parents while we were in the hospital and never stopped. At 10 that night, Aiden called us crying because he left his "lambie" at home. Dave, the softy, went to bring it to him. While he was gone, Evie had another episode, this time, like we had guessed with the others, when she was rousing from sleep. It was more severe this time and I held her little shaking body close to mine and shushed her. She came to, nursed, and fell back asleep. I called Dave and he turned around and rushed home.
Friday morning, we were to see Dr. Morales. Although she did have another episode while waking up, we were still relaxed and chatted as we got ready about going to see the Clemson Percussion concert that night, confident that this appointment would sort things out. Neurological issues pepper Dave's family tree; with epilepsy, migraines, and tic disorders as far back as his great grandfather, possibly further. As I zipped up my knee high high-heeled boots, I joked that we would bring the hospital bag we had packed for Evie, because if we didn't, we would surely end up there.
On the way to the neurologist's office, I heard Evie's breathing change and upon looking back at her, discovered she was "seizing" once more. I shot into the back seat (which for those of you who have been in our car is quite a feat, with the stick-shift and limited space) and wedged myself between the carseats to stroke her head and sing to her. This was the most severe episode as of yet; longer and stronger than before, with drool pouring out of her little mouth. After coming to, she cried and went to sleep.
We arrived at the neurologist's shaking and wide eyed, toting a bewildered infant.
During our consultation, Dr. Morales confirmed that her EEG had shown seizure activity and upon looking her over, noted a white patch of hair on the right side of her head and some lighter colored areas on her stomach. Although the rest of her exam proved her to be developmentally on target, he predicted that given the combination of the seizures and the white hypomelanic macules or "ash leaf spots", Evelyn had tuberous sclerosis. He recommended immediate hospitalization to stabilize her seizures and test for TSC. He also told me not to nurse her until her testing was complete. His office called ahead to arrange an MRI and a room for us at Greenville Memorial Children's Hospital.
We rushed to the parking lot, Dave in quiet stoicism and I with with tears streaming down my face and trembling with adrenaline and began buckling her into her carseat when another seizure began. This was the strongest yet and the longest and was made increasingly terrifying by her lips turning blue at the end. I sobbed and screamed at Dave from my place in the backseat to drive as he tried to program the hospital into our gps. Evie came to, smiled at me, and dozed in her carseat beside me while we drove.
When we arrived at the hospital, we frustratingly parked what seemed like a mile away and ran-walked to admission, desperate to be admitted before another seizure struck. We sat in the business office waiting room, I trembling and periodically quietly crying, and Dave calmly holding sleeping Evie with one arm and reassuringly holding my hand with the other. As people shuffled in and out, one sweet mother told me that she would pray for us. We met with our admission consultant and at the end of all our paperwork she told us (me) sweetly that God would take care of us and things were going to be alright. She later met us in radiology to slip Dave $10 for food and to give us some Cokes she bought from a vending machine.
Evie slept on Dave's shoulder until it was time for her MRI. Unfortunately, with infants, general anesthesia must be used to get an adequate picture of the brain. I had to excuse myself while the nurse and anesthesiologist found a vein and inserted her I.V. (which would not be removed from her battered arm for 5 days). When babies are given anesthesia, they go out fast and this was our experience with Evie. They pumped it into her and she became limp in Dave's arms. We stayed in the MRI room with her and they gave us earplugs to wear for the 20 minutes that the scan would take. I decided to use the eyes open hypnosis I had learned during my childbirth class to ease my nerves during this time. I looked over and noticed Dave in his Catholic way crossing himself as he does before and after prayer. I felt God's peace wash over me and was more relaxed during this 20 minutes than I had been since the Saturday this all began and have since.
The scan ended and Evie came to, starving and crying. It had been 5 hours since she last nursed. I had no more tears left to cry, but my breasts cried for her.
We were admitted within within the hour. We settled into our room for the night and the resident gave me the ok to feed her. Evie received her first I.V. of Keppra to stop the seizures. By this time, my parents and Dave's mom and stepdad had arrived. Aiden was visiting a close family friend for the evening. My dad, a minister, prayed over her. We snuggled down, shaken, nerves shot, but a little relieved, believing to be on the other side of all this, and went to sleep for the night.
It wasn't long before the seizures began again. That dark night is a blur to me now. Just one long, quaking seizure. I rocked and attempted to nurse and sang and stroked and cried as seizure after seizure after seizure took my sweet baby from me hour after hour.
Morning came, and with the sun came relief, Evie's last seizure, much milder than the midnight tremors, occurred at 6 A.M. While Dave held her, sleeping, in his arms, we finally drifted off for a couple hours before our busy day began. When Evie finally roused, she giggled and cooed to us with the cheerfulness she has shown every day since she was two weeks old.
Around 11 A.M., Dr. Morales visited again, and after learning of her night of seizures, advised us that if she were to have another, her anti-seizure medicine would be changed to a drug that was more detrimental to infants and much more difficult to stabilize. Dave's parents left and my parents and us prayed over her, claiming God's healing grace for her little body and mind. Cautiously, anxiously we waited, praying constantly that the Keppra would be enough.
That Saturday was a hurried shuffling of tests and doctors. All in all she had a heart echo, a metabolic work up requiring 15 milliliters of blood (a lot for a little baby), and a sonogram of her kidneys (and of course the M.R.I). The neurologist ordered for the doctors from the pediatric intensive care unit to monitor her and for the nurses to do neurological checks every two hours.
That evening, Dr. Morales came again. Cautiously optimistic, with the results that all of her tests had come back normal. He had expected evidence of tuberous sclerosis, with tumors growing in her brain or at least her heart, but none had been found.
We stayed a few more days to be sure that her seizures had stabilized. All the while, Evie charmed every nurse and doctor who met her. Cautiously and professionally they would begin their shift, only to coo over her and gush to the next nurse coming onto shift how cheerful she was and how much personality she had. Several of our nurses came to sit with me and play with her for 10 to 20 minutes or so during their time with us which I don't know is normal or not, but I like to think they just really liked her. Even while they drew her blood, which took about half an hour, she calmly cooed at me and my mom, Mimi, while we held her still and sang to her. Also, while in the hospital, she always nursed with as much ferocity as that first hour she was born. And these things, her personality and her nursing, gave me peace.
We were discharged Tuesday and although she had another small seizure on Thursday morning, we feel we have reason to hope. Dr. Morales and our geneticist, Dr. Everman, remain "optimistic" and "reassured" respectively, that the evidence we have at this moment does not point to tuberous sclerosis. We are going to have an eye exam with Jervey Eye Group to confirm that there is no evidence of TS in her retina and possibly rerun some of the metabolic testing to see if there could be a cause for the seizures there. But so far, we have no diagnosis. They will be monitoring her over the next few weeks, months and years, along with Dr. Fieste, to see that no further evidence for tuberous sclerosis presents itself.
Dave and I remain cautiously optimistic, although so far some days and some hours of the day are better than others, that Evie will grow to be healthy, normal, and seizure free. I do have fears though, and grieve that we have lost some things that we have even yet to gain. Prom, for instance, her wedding, grandchildren, and vainly, that she will be disfigured by tuberous sclerosis. I also fear that she will be mentally disabled. But, these concerns are not for this time and each time I look at her and she beams back at me with that beautiful face, that beautiful smile, I take solace. Though my heart is breaking, heaven stands; though my world is shaking, we never leave His hands.


  1. My dear sweet family, You are all so brave and strong and loving. Please know that you are loved by SO many and the prayers for Evelyn are constant and heart felt. My 3 year experience with my child in and out of hospitals, all tha "bumps" in the road and the test after test and drug after drug he had to consume, makes me a little aware of how you must be feeling. I'm sure it is so much harder with a baby because you can't talk to her about what is going on. Chris told me once that he could feel the prayers that people were sending his way. I'm confident that your sweet Evelyn is feeling them as well. God will provide the PEACE and your doctors will provide their KNOWLEDGE, and you, your family and your friends will provide the LOVE. My thoughts and prayers are with you every hour. Judy Kowalski

  2. It breaks my heart that Evie and all of you are going through this. I really can't imagine watching my baby have an MRI, or get blood drawn, or holding her during a seizure. You are so brave and positive and Evie is lucky to have you and Dave for parents.

    And it's not just your imagination, Evie really is a special little girl. She's so happy and cheerful like you and has one of the most beautiful smiles I've ever seen. We are always thinking of her and praying for all of you. Please let us know if there's anything we can do to help.

  3. You don't know me, but I know the fear, the pain, the confusion of having a child diagnosed w TS. My grand-daughter was diagnosed at just 1 day old. She is now 6 and with the love of God, family and great staff at Cincinnatti Childrens Hosp the largest TS Clinic in the US she is in kindergarten, seizure free!
    She was about 4 when the seizures stopped, before that she was on a non-fda drug we got from Canada. The years of the drug and seizures have taken toill and she is not quite up w most 6 year olds but yet surpass them in areas of music, I give GOD thanks each day, the doctors at 2 days old told us to take her home and love her like a normal child, take each day at a time and we have done,. That is a beautiful, loving, smart child!
    So be of good heart and know that Heaven does stand in Our Lord is with us always! HUGS

  4. We are praying for you. Whit told us about what you are going through. I am sure he has told you what we went through with our daughter, Lindsay, and just reading your post brought back all the emotion for me. But years later I can say that God did come through and after the worst of news God proved the doctors wrong. It took years of going through it but eventually the seizures stopped completely and she has been seizure-free for over 10 years. The best advice that I can give you is 1) pray and trust God even when it is hard. When she had 50 seizures in 12 hours and ended up in ICU I thought we would never have her back and she came back to us good as new. 2) Find the BEST pediatric neurologist you can find. We had so much frustration with well-meaning doctors and resigned ourselves to her condition until we came to MUSC and they worked miracles with her. 3) Be cautious and over-protective about medications which can do more damage than the seizures. We thank God for meds, but stayed away from ones with long-term cognitive deficits. They said it would not matter since the seizures would hurt her brain anyway-- but when she went on to graduate a year early with honors and has now graduated from nursing school-- I knew we had made the best choice for her future. 4) You will get lots of well-meaning advice. Learn to take what you can use and ignore the rest. People just want to help but everyone has heard of something and wants to share it. So start with what I have written and take what you can use and trust your gut on the rest.

    We are praying for you and your family. May God show up and touch your little one. Please email me or call if we can do anything to help.

    In HIs Love,
    Glenda Nanna