Seizures

Neonatologist and NICU RNs alike, have witnessed Alexis trembling and having seizure like activity.  A full "seizure workup" was started yesterday afternoon and she has been administered an anti-seizure medication (Phenobarbital).  I was aware of the "jerking" as I had seen it myself, her nurse had talked to me about it but neither of us could really tell if it was her "seizing" or perhaps just involuntary movements resembling trembling.  My phone rang during the 1pm break, when I come home to express milk.  My heart dropped when I saw it was the NICU,  I didn't know what information awaited me upon answering.  "Hello?", "Hey Ms. Cimburke, first off Alexis is fine..." *PHEW* a sigh of relief came over me.  Her nurse went on to tell me that Dr. B. (the neonatologist) wanted to speak to me regarding Alexis' activity.  He informed me of his concerns and the plan of action we were going to take to attempt to get answers for her condition.  Not only was she trembling, but her heart rate was sky rocketing and her blood pressure was much higher than it should be.  She would be getting a spinal tap, within the hour and an EEG,  blood culture, full CBC, head ultrasound and they would be starting a new IV to start administering the medication.  I took a page full of notes and after hanging up the phone I just stared into space, an ear-full of information sinking into this already overwhelmed mind.  My biggest concern was not even the outcome of the testings but more of the pain that my sweet girl would be put through having the lumbar puncture.  There is such a fine line between wanting to protect and shelter your child and wanting answers to know how to really best assist her progress.  About 5 1/2 hours after getting all of this information, I would have my chance to comfort little Lexi.  When I got to the unit at 5pm, I had to wait in the hallway for 30 minutes while they got the IV started.  I never have an issue complying to procedure and "rules" because I do know that every single person in Johnston Willis' NICU has my baby's best interest at the top of their agenda.  They have proven that to me, as a mom you just know...instincts I suppose.  I feel blessed to have had all 3 of my babies in such a nurturing environment.  However, even just knowing your baby is on the other side of a door having an IV placed is enough to make any mom feel helpless!!  When she finally came out to get me, I don't think I could have rushed through those doors, to the sink to scrub and gown up, and get back to my baby any quicker. When I saw her my heart sank, they had to do the IV in her scalp.  I had seen this done before and I totally understood that sometimes that is the best place.  But no one wants to see their precious child with a needle in their head.

Prayers continued going up and test results start coming in.  EEG- normal! CBC- great! Spinal Tap- cranial fluid appears normal, and so far there is no sign of infection.  Both the Spinal Tap, and the blood culture do not show full results for a few days.  The fluid and blood are taken and basically we wait to see if something "grows" as a sign of infection.  To date, there is nothing "growing" in either culture but time will tell for sure.  Her neurologist also decided after seeing the EEG results, to follow up with an MRI.  The MRI was completed this morning, and we are still currently waiting for that to be read.  The neuro believes this activity of hers is probably just myoclonus (twitching or muscle spasms) unrelated to any disorder and essentially looks worse and more traumatic than it actually is.  Hearing the "Myoclonus diagnosis" is a familiar one, as we were told the same thing about Emily at 14 months, from the same doctor!  We have never once seen another jerking episode or any other alarming twitch from Miss Emi.
We have learned that there are many times when things happen and there is just no reason why, or any guarantee one way or the other if it will arise in the future.

If her MRI comes back normal, they will cancel the anti-seizure medication.  She is still having high blood pressures, spikes in her heartrate and fluctuating temperatures.  They have not given up on trying to find out what her little body is trying to tell us.  She is having an abdominal ultrasound to check for any sort of blood clot or blockage within the renal system (kidneys) and a urine culture to check for infection.  It would be nice to find the culprit of the high blood pressure, heartrate and temperature so that we would know the best way to treat the issue....but it would be best if all those symptoms would just subside and without any other reason then GOD himself.

Her weight had dropped down to 2lbs 13ozs but she is now moving back up!  Weighing in at a massive 3lbs 1oz, our little miracle is getting a bit more fat on those little "frog legs" of hers.

Alexis is one amazing little girl, at only 11 days old she has touched so many and we are so thankful that God has decided to "contract out" our family, to show just how miraculous He is! 

Headed back up there now to love on my biggest, little blessing.  I will update later.