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.

Our God is healer...

She came blazing into our hearts, 9 weeks early.  After a 17 hour labor we welcomed our tiny precious miracle via c-section at 5:29am February 18.  Weighing in at 3lbs 6oz and a mere 16" long, she was removed two months too soon but let out a cry that lasted about 3 seconds.  3 seconds that "daddy" and I will cherish and never forget.  The cries turned to silence and I knew that on the other side of the blue drape and on the opposite side of the operating room, my little girl was no longer breathing.  I asked Chris a question that I already knew the answer to, "they are intubating her, arent they?" in which his response was "yes."

 As they rushed her past her mom, and the only home she had known, they stopped just briefly enough for us to meet face to face.  Finally, the life that I had grown to love and protect from day one was right before my eyes and all I could do was look at that miniature face and resist the urge to cry out "No!  Its too soon, she's not ready, I'm not ready" and then that moment was gone, and she was gone.  It was just me, Chris, and about 8-10 CJW medical staff.  I lay their as they put me back together, feeling so helpless and full of wonder, fear and guilt.
I woke up 3 hours later full of heartache and emptiness.  A time when most mothers would be cuddling their new baby, counting fingers and toes and pointing out cute little attributes on their new family member...I spent calling the NICU to see if my baby was even going to make it.  Upon calling the unit, I was filled in on "Baby girl Cimburke's" current condition.  I was asked "What have you decided to call her?", at that moment I realized my child did not even have a name up until right now.  The life they had just put all of their medical knowledge into saving was just "baby girl" and she was just another hour in their day.  "Alexis Ruth is her name" I said, "and she is going to change our whole world, God has big plans for her" I thought.  I asked when we would be able to see her.  I knew I would not be allowed up for many hours to come, as I was still recovering from the surgery.  Being veteran NICU parents, we knew Chris could go back and see her and get some pictures to bring back to me.  So daddy went to meet his little princess, about 5 hours after she came into this world.  By the end of the night I too was able to see our little girl, of course she was hooked up to everything imaginable but seeing past the tube breathing for her, I met our beautiful miracle.

 I was instantly filled with HOPE and LOVE and FAITH and knew from that moment our lives had been changed again.
About 3 hours into little Lexi's 2nd day, her left lung collapsed and the quick acting and highly experienced NICU team put in a chest tube to release the air.  I will not even try to explain the emotions that rushed through this mother's body the moment I heard that the left as well as the right lung had both collapsed and the once vibrant, wiggly child that I had bonded with in utero over the course of 7 months now had two new accessories coming out of the sides of her body.  Alexis had proved to be unpredictable with two collapsed lungs; two chest tubes; and a new, less invasive, but much more intimidating oscillator breathing for her.  This oscillator shook her tiny lifeless body, from head to toe.  An image no mother should have to see, yet I felt so blessed in that instant.  Thankful that I am a child of God and that as much as I loved that little girl on that critical table, her creator loved her even more.  This was a gift to us,  Alexis is a blessing to us from God and in that very point in time I prayed over her, dedicating her to Him.

 

The days following that grim Sunday, were promising.  Filled with hope and prayer.  She was recovering and her lungs were rapidly healing.  Alexis Ruth was determined to surprise her medical team and show them just how big of a God we have. Both lungs had healed and right, after left, both chest tubes were removed.  We were confident that each lung would now be able to hold the pressure of the ventilator.  While surrendering her body to this machine, employed to breathe for her, Lexi was completely sedated and any expansion of her lungs by her own will was strongly discouraged.  During this time, it was not beneficial or allowed that I touch or talk to her.  We had discovered that Miss Alexis knew her mama.  She knew my touch, my sound, my scent....me.  That tiny little girl knew me and was excited by me.  If she were to "know" I was there, her heart rate would pick up and you would see that she was trying to breathe against the oscillator.  The only familiarity she had, was in her mother and mommy just wanted to scoop her up and rock her pains away.  At this time, she needed to rest and allow her body to heal...not to push beyond what it was capable of.
Approximately 9 hours into her 6th day, the breathing tube was removed!!  She was now able to expand her lungs and take in her own breaths, without the invasive assistance of the over powering machine!

Praise be to the Lord above, her lungs were healed and properly functioning.  A nasal cannula became her newest accessory, puffing a bit of oxygen into her nasal passages encouraging her to breathe but allowing her to transition from ventilator to room air. Without the ventilator, mommy and daddy would finally get their first chance to hold their sweet little surprise. And, man was that an awesome moment?!

 On the 9th day, the oxygen was removed and little Lexi, small and mighty, was officially breathing 100% without assistance!!  I stand humbled over her isolette (formerly known as an incubator) looking into the clear box at the miracle of life, the greatest gift ever given to a couple.

 

 Alexis is being fed through a feeding tube, something we are all too familiar with from the trials and journey of big brother Josiah.  She is getting an ounce every 3 hours of mommy's milk, through her tube, mixed with human milk fortifier to help her gain weight.  Also, like her two older siblings, she is battling with bradycardias (drop in heart rate typically below 80bpm) and apnea (not breathing for longer than 20 seconds) as well as some reflux issues.

There is a very long road ahead of us, but the Lord is leading our family and carrying us through the rockiest portions.  We will praise him through it all, God is good...he is always good.

Surprise Blessings

Time has certainly passed and so many things have happened within the Cimburke family, since the last post.  My apologies, but just wait to you hear about the newest blessing God has bestowed on us!   In August we got the shock of our lives.  Knowing our lives, you have to appreciate just what a "shock" this truly was.  Well after a few days of nausea and the persistence of instinct I decided to take a pregnancy test.  Surely it would be negative, we had made up our minds that we were done reproducing and had actually made a more permanent decision for Chris to have a procedure.  That procedure was scheduled for 2 months out, due to his work schedule and time needed off.  In the mean time, to prevent from conceiving I had the Paraguard IUD.  So in our mind, getting pregnant was the last thing on our itinerary.  Eight positive pregnancy tests later, I was convinced I was going crazy.  After making an appointment with my OB/GYN it was confirmed by blood work that we were indeed going to be outnumbered by our children.
Knowing there was some reason for this child's existence in my growing womb, we slowly began to get accustomed to the idea that our perfect little family of 4 would be a family of 5 likely by Easter.  Shock, fear, anger, and frustration turned to anguish, uncertainty, and anxiety.  Never was there a "question" as to the result of the pregnancy, at our hands.  We firmly believe if we get pregnant, we have a baby.....annnddd that the best way to prevent baby number four is to continue with the surgical procedure for daddy AND mommy to have it done after delivery.  We want to go for the "double protection" HA!  Still knowing, if God wants life, God creates life.  BUT please hear us loud and clear :)
More emotions have come to rise than I think we ever knew we could feel.  From shock, to acceptance and most of all faith I am finally at a point of excitement and rather eager to meet our newest little miracle and 2nd baby GIRL.  With that said, now I introduce you to just how "eager" a pregnancy in this lady can be.  Knowing that Emily and Josiah were both pre-term, my doctor began to monitor me for signs of an early delivery rather quickly into the pregnancy.  At 17 weeks I was placed on bedrest and medication for pre-term contractions.  I cannot explain the emotions the new medical status brought on.  Thinking "Why?" why would God give us a life, just to take it away?  Why put our family through this?  Why test my role as a mother and wife?  Why increase Chris' role as father and husband to mother and caregiver?  Sooo many questions and so many feelings.  We took each day as a blessing and there was more evolving than I think we even knew we were capable of!
13 weeks after first being prescribed to a life on the couch, I could not honestly have a more positive outlook on how far we have come and what lies ahead.  First and so importantly,  Chris is the love of my life and has slipped so perfectly into his role as "mr. mom" and caregiver.  You can think for years that there is no way you can love a person more than you already do, but throw a trial in there and you will be proved wrong!  I have never felt more loved, cherished or appreciated in my entire life.  I never knew I could sit back and watch my house turn into a playroom, or enjoy just watching my kids interact with each other.  I was unaware how independent my 3 1/2 year old could be, or how tolerant my once spoiled 17 month old would become in a playpen.  My always supportive close family members even pushed the standard of helpful.  Church family and friends were practically knocking down our door to bring meals and help out in anyway that I could ask.  Growing from what I like to think was already an appreciative Godly woman, He turned me into an even stronger one.  Some of those "whys" have become so clear, and I already have some pretty good proof of the impact Miss Alexis Ruth Cimburke has had, prior to her first breath.  Amazing how a life can be of such an impact before most even consider it a "life",
Just as I got used to being an incubator and efficient couch mom, let's throw some more adversity into the mix.  I was admitted into the hospital at 27 weeks with severe pain and contractions.  Doctors discovered the pain was radiating from a blocked, low functioning kidney!  The good news, the pain could be resolved and contractions could be stopped.  The 2 week hospital vacation ended with 3 procedures, one very scary event of hard labor, and a Nephrostomy tube.  To put it simply an incision was made into my right kidney, through my back and a tube was placed into it and connected to a bag.  Basically a secondary and exterior bladder.  So as if being 30 weeks (about 7 months) gaining 30 lbs and being stuck on the couch all day isn't uncomfortable enough, lets stick a tube into my back! Still counting my blessings that I did not lose complete function or my kidney, a Nephrostomy is just another bump in the road.  They believe there are two large stones, one in the right uterer tube and one in the kidney.  But being pregnant there isn't but so much they can do to properly diagnose it or remove it.  After Alexis is born, I will have the tube surgically removed and with radiology they will be able to better find the obstructions and remove them.
I feel like the most popular person on God's answering machine and even with everything going on and a million reasons to worry, I am really at such peace.  Perhaps I am naive, or spoiled by family, or just maybe I have that much faith knowing that her birthday is already set; as are the days that lie ahead.  For the first time I have learned to let go!!  "Lexi" may not have been in our plan, but then again I can tell you that half of our life was not in our plan!

 

UPDATE on the Emily;

3 1/2 years old now she is such a young lady.  She has become so mature in the past 3 months and so intelligent too!  She can tell you our phone number, address, and streets that all her grandmas, aunts and close friends live on.  She is such a little sponge and absorbs so much knowledge!  She is a total mamas girl and enjoys laying on the couch watching movies and snacking all day.  Health wise, she has not been sick since having her tonsils out last February, her asthma still raises its ugly head now and then but overall she is a very healthy and vibrant young lady.

UPDATE on Josiah;

Almost 18 months old now Josiah is about 20lbs and is fitting nicely in size 12 months.  He is still a little delayed in size but he does not let that hold him back!  In the past 2 weeks he has decided that he will only walk and does not crawl at all.  He took his first steps about a month ago but is non-stop now!  He talks, and walks and loves his sissy, gaga, meanmaw, mawmaw and pawpaw but daddy is his favorite.  Not the usual mama's boy and daddy's girl in this household.   Strong man is a total little lover and much like his sister I am shocked at his intelligence.  Perhaps I am like every other mom who just thinks her kids are exceptionally smart, but hey...thats my right!  Health wise, he has struggled with frequent pneumonia and prior to having tubes placed in his ears, he dealt with more than his fair share of infections.  Plagued by allergies to eggs, apples and bananas we never leave without his epi-pen and are always on high alert of what he ingests.  We are hopeful he will outgrow those allergies and all his prior trails will remain behind us.

 

TuBe LoViEs

Anyone trying to get a hold of me for these wonderful g-tube pads I have created, can email me directly at Cimburkefam@gmail.com
I hope that the one you have received as a gift, has helped in the healing process of your child's stoma.  I would be honored to send you more, at $3 a pad, to cover my costs.  Just email me, your child's age and gender

 

After 7 months with the tube....

Make plans if you want, but Josiah does things his way and on his time (and God's plans, of course).  After 5 weeks of not using the Gastrostomy tube, Josiah's specialist had decided he was approaching the removal of the silicone "friend".  A smaller tube had been ordered and we were on track to receive it by Tuesday June, 28.  Once the tube was in our possession we would need to extract the old one and insert the smaller one.  The method behind this; the g-tube site (called the stoma) would begin to heal around the smaller tube, causing the stoma to shrink in size.  Then after 4-6 weeks this tube would also be removed, and the body would do its job in healing itself the rest of the way.  Guess Josiah did not like that plan!
Today, when I picked him up from the nursery after church I noticed that his tube was sticking up higher than usual.  When I checked it, it had completely dislodged.  I got out my medical bag and got the supplies to try to place it back in.  Noticing that the site was closing up, I began to worry and knew that we needed to have the tube replaced into the crater.  It was rapidly closing and I could not get the g-tube back in place, even with great force.  I packed the wound with sterile gauze and taped it down.  Scooping up my screaming little man, I rushed him out to the van and sped to Chippenham Hospital.  Once there, they took him back right away and begin to asses the situation.  Pediatric surgeons were called and it just so happened that Josiah's surgeon, Dr. Lanning, was on call.  He is familiar with Josiah's history and was able to give a good perspective on the situation.  The options I was given for his treatment where as follows;  put a catheter in place and tomorrow, have the site dilated to get the tube back in.  Option two, allow the stoma to heal on its own and deal with the leakage and irritation until it closes.  Or the only other option, surgery.  The surgical procedure would of course, require anesthesia, a breathing tube, and pain relief following the procedure.  I have known for a while that surgery would be our last option, which is why we had opted for gradually sizing down with the tubes until the body could naturally heal itself.  I just could not justify putting him through further pain and time in the hospital for them to dilate the site and put the tube back in, when it has not even been utilized in over a month!  With those facts, we knew the best choice was to let the site heal on its own and eventually close up all together. 

Right now there is an open tunnel in his abdomen that goes down into the stomach.  As you can imagine, there is nothing stopping the contents of his stomach from traveling that path.  When he eats or drinks, the substance will take the path of least resistance.  We have to keep the opening covered with gauze and taped down with pressure so that the stomach contents are not able to easily escape.  Doing so, will force the food and formula to take the natural path and will be absorbed for maximum nutrition.  We need Josiah to continue to thrive in weight and development.  He is doing so well.  Two tiny little white teeth have popped right on through his bottom gum, right in the middle.  It makes that little smile of his, that much cuter!

June 18th, the Lord called another wonderful woman home.  Nanny passed away after a long struggle with Alzheimer's Disease.  She was such a huge factor in Chris' upbringing and childhood and he lived with her for 90% of his life.  Christopher was absolutely the love of Nan's life.

Mary Christine Cimburke

February 8, 1937 - June 18, 2011

Always loved, always remembered, always cherished. 

The first time they met

The one and only time Nanny had these 3 together.  Thank you God for each day we had with her.

...glad that is behind us!

10 minutes into the procedure, the nurse comes out to get me and I instantly got nervous.  I was relieved to know that all they needed was instruction on how to release air from his g-tube, and that nothing was wrong.  This was his Ear, Nose and Throat doctor; gastric tubes are not his specialty.  So I sent the tubing back to the O.R. and walked them through it on the phone.  I so badly wanted to go back there and for a moment I thought they were going to let me!  Haha stupid liability laws!  If you know me, you know by now that I have become fascinated with the medical world and would jump at the opportunity to be in that room with my son.  Back out to the waiting room I went.  His normal support system was there, waiting for the procedure to end, as they have done so many times.  My 85 year old Grandma has sat and waited in many waiting rooms for Josiah.  From birth, to the latest procedure, she is always there and amongst the most relieved to see him recovering.

Dr. Salley (our family ENT and by far the most trusted) came out to let us know that the procedure went well and that he was going to be going to recovery.  Then the nurse came out to get one parent to come back for Strong Man.  Poor Chris, I am always the "one" but he knows I would go crazy having to wait any longer.  When I got back there he was moaning and making the same noises as before.  Struggling to breathe and having a hard time recovering, just like his last surgery.  I had brief flashbacks of the nurses and doctors resuscitating his lifeless body and was praying hard that we wouldn't be reliving those events.  He had a few strong apneas, but he maintained his heart rate and just required oxygen.  I was instructed to try to feed him but I was apprehensive.  I listened to the nurses and offered him the bottle, he was aspirating it so I stopped right away and put it in his tube.  They gave him tylenol and he began to settle down.  With his recent history of Morphene sensitivity we did not want to give him anything else.  So many pain medications derive from Morphene and we were not going to risk it for the minimal pain of an adenoidectomy.

Admitted for observation, we went up to the peds floor where we were once again greeted by all of Josiah's "girlfriends".  He loves his nurses and they have truly watched him grow up, he is more than just a patient, he is Josiah Cimburke!  Once we got settled into his room I noticed his face getting really red, his saturation was dropping a bit but he still had blow-by oxygen. He was getting more red and his forehead looked as though it was swelling up.  I went out into the hall to grab someone and they took his temp and checked his vitals and nothing seemed to odd, except the fact that he looked as though he had just got back from a week in the tropics!  His nose, mouth and bottom of his ear kept their natural color.  This was something we had never seen.

 

After talking to the doctors and anesthesiologists they figured out that it was a reaction to a drug called Succinylcholine that was used to open his airway.  After surgery, when they removed the breathing tube, Josiah had what is called a laryngospasm.  Basically his throat was closing up and he was able to get air out but not in.  They administered the drug and he was fine, but the flushing was a reaction from it.  He was given Benedryl through his IV and got his color back rather quickly.  We are forever encountering new things with Josiah and I have a feeling he is going to continue to surprise us all of his life. 

The next morning, we were discharged.  His sleep study was scheduled for May 31st, I received a phone call from the hospital and took the appointment they offered.  After arriving last night and spending 2 hours in the hospital, we learned that the sleep study was to fit him for the oxygen he would have at home.  I told the nurse that we were not getting that because Josiah had surgery.  This sleep study was to confirm that he was no longer having troubles breathing in his sleep.  They called the doctor and after speaking with him we decided to cancel and reschedule his follow up sleep study for down the road.  I do not see the purpose in putting him on a CPAP machine. Why disturb his quality of life, when he just had surgery removing the obstruction that was the culprit of his obstructive sleep apnea.  He is still on his apnea monitor and we will be alarmed to any lengthy pause in breathing that he encounters. They could not do the follow up sleep study to confirm that surgery was a success because he just had surgery within the week.  "Confirmation sleep studies" are not to be done until 6-8 weeks post op.  So we will be going back for that at a later date.  Looks like Strong Man will be on his apnea monitor til his 1st birthday, like his sister.

 

STOPS breathing every 2 minutes

sleep study

The results from the sleep study have revealed that Josiah stops breathing over 29 times an hour.  They are all obstructive apneas.  His oxygen saturation is dropping to 80% so his pulmonary wants to put him on Cpap until the obstructions can be removed (adenoids and polyps).  His surgery was scheduled for 5/19 and on the day before as we went in for the pre-op physical he was denied for surgery.  He had a temperature, an ear infection and tonsillitis.  He was put on an antibiotic and surgery is postponed to this Thursday 5/26/11.  So learning he had to suffer through his sleep apnea yet another week was agonizing.  The thought of him not getting adequate oxygen during sleep, gave this mama just one more reason to fear. 

Thursdays surgery is typically just an outpatient one, of minimal risk.  However Josiah is a 9 month old with apnea, scar tissue, and a known sensitivity to Anesthesia. The typical adenoidectomy is preformed on a 3-6 year old.  Emily has had it done twice (there was regrowth, because she was so young the first time- 18 months and 2.5 yrs old).  I was once a person not to over-stress on the risks of a procedure and was over confident in the Doctor's ability.  That has since changed, in recovery, post op from the last surgery he coded multiple times in which we thought we had lost him.  It was a rough 24 hours, followed by 3 days of ICU.  So naturally I am anxious and frightened for what awaits us in recovery.

Josiah's new hair cut

He will have another sleep study after the surgery in hopes that having removed the obstructions, his apnea will have subsided.  If not, he will be placed on supplemental Oxygen at night. 

He will probably be admitted and we are only expecting to stay one night, as long as everything goes as expected.

I will update after the procedure.