Don’t let go of me, momma!!

Don’t let go of me, momma!! Those were the words that Mighty Z kept saying to me today during her CAT scan. How many times this little girl has told me not to let go of her? 1,000? 10,000? More?  Every time she has ever had to go through something that frightened her she has echoed those words, over and over and over “Don’t let go of me”. I think that her telling me not to let go of her when she is frighten is because I am her anchor, her safe harbor. She knows that no matter what happens I won’t let go. Yet those words haunt me and I try my hardest to never let go of her no matter how slippery or how hard it gets.  What is difficult is trying to wrap my head around is what if? What if our hands get too slippery and I can’t grab back on? What if I mess up and somehow lose my grip?  That can never happen, I have to stay steadfast and cement my hand to hers I can ever let go!!! I don’t know why today these words scared me a bit, but they did. Sometimes the magnitude of what we go through on this journey is realized and I have to face the facts, and sometimes I walk through this journey like it is a walk in the park. I think this is how I cope, but I know one thing for sure I will never let go until she tells me too.

01 02 12

There is no post in my trauma

When you have a child who is medically fragile and have gone through stuff that no mother should ever have to see; you are often told that your panic attacks are due to PTSD (post-traumatic stress disorder) from doctors, therapists, family members, and friends.

Recently I started seeing a therapist and once again I was told that I have PTSD. As I sat there listening to him tell me what he thought I was going through; I stopped him and told him something that rocked my on world “there is no post in my trauma.”

This is truer then I like to admit. Yes there horrors from the past with Mighty Z that wake me up in the middle of the night in cold sweats feeling shaky as my heart pounds in my chest, yes there are noises and smells that bring me back to a traumatic time where I almost lost her.

 However, what is harder to deal with is not really the past trauma but the current any moment trauma that has yet to happen, but surely will happen any given moment. It is hard to stay in the present and to not give into the trauma that is lurking around the next corner waiting to pop out at you any moment.

I will say that I have done a pretty good job in masking my fears of not really what the future holds but more what is about to come. I think we as mothers of medically fragile children actually have chronic-traumatic stress disorder (CTSD) and not PTSD. Like our children who live with chronic disorders and illnesses it is all the time, no break, no days off, follows you around ready to pounce on you trauma.

So what do you do with CTSD? I am certainly not the one to tell you the best way to handle it, however we can look at our children who deal with being chronically ill and see how they deal with it. Mighty Z just pushes on through although I am not as brave, tough, or as resilient I can take my cues from her. Mighty Z looks at everything with laughter and humor so I need to do the same. I need to make time for myself so that my whole world isn’t centered on her disease and what is around the corner. I have spent 15 years trying to keep her alive and trying to give her a life worth living when I should have carved out a time for myself as well.

I bought into the lie that having a child who is medically fragile is “a life for a life”, but I am starting to see it doesn’t have to be. I think what we really need is caregiver fatigue management and I am trying to figure out what that is and how I can carve that into my day. I am sure I will always have CTSD, but I don’t think that CTSD will have me much longer.

01 02 12

The begining

The month of January is always a time of reflection for me. Not just because it is the start of a new year, but also because it is Mighty Z’s birthday month. I remember like it was yesterday how I was so ready for her to be born, not a thought of ‘would she be alright?’ even entered my head. I had done all the prenatal tests and they had all come back perfectly, so what was there to fear? I remember getting up early on January 22 and heading to the hospital excited to meet Miss Z.

 

Everything went beautifully; the only hiccup was that my blood pressure was a bit high and they gave me some medication that made me kind of loopy. When Z finally arrived, the nurses gave her to me and pronounced her perfect. 

You know hindsight is 20/20, and I remember Z kept wanting to fall asleep when I was holding her. Her nurse kept saying ‘wake her up; she needs to be awake.’  Yet that was easier said than done--  Z kept nodding off no matter what I did. The nurses, still unworried, took her to the nursery and they sent me up to my room where I waited and waited and waited for someone, anyone, to come to my room and tell me something.

 My husband, my mom, everyone had forgotten about me and I had no idea why. Finally my husband came into my room and fell on top of me in a puddle of tears and said they have taken our sweet Z to the intensive care unit because she wouldn’t breathe on her own.

I have always been one to take charge and this time was no different. I demanded that I go and see our Z. The nurses said I could only go if I could walk around my room three times without throwing up. I remember I started walking and immediately threw up. Yet I tried again I walked around twice more and told my husband not to tell them I didn’t do the final third walk. They placed me in a wheelchair and up to the NICU (Neonatal Intensive Care Unit) we went.

The NICU is a dark and sad looking place, and there in the corner was my sweet Z in an isolette with tubes in her mouth and nose, and wires, wires everywhere. How could this be? The nurses not just a couple hours ago said she was perfect; how did we get from perfection to this place?

I remember touching Z and trying to sing to her. She flinched from my touch and started screaming. My heart broke into a tiny pieces in that moment. Little did I know that I was about to embark on a journey that no mother ever wants to travel.

Throughout this month I will walk you down the beginning of this journey as much as I can remember. There are times of great success and yet times of greater defeat and pain as the realization of why my baby wouldn’t breathe on her own finally started to dawn on me.

01 02 12

Flu vaccine, friend or foe

 

 

 

As a parent of a chronically ill and medically fragile child, I am always making sure that Mighty Z’s health is top priority. When it comes to vaccines, I am almost always pro -vaccine simply because with Mighty Z’s syndrome, CCHS (Congenital Central Hypoventilation Syndrome), anything can pop up randomly resulting in an unplanned ICU stay or an emergency surgery.  Also, I know I need to do my best to prevent the other issues that may occur if I don’t vaccinate, so I always make sure we are always up to date with vaccines.

 

Last year according to the Center for Disease Control, only 50% of children who are medically fragile had the flu vaccine, and although that might be shocking to some, it was not at all shocking to me. One has to remember that even though in a controlled environment the flu vaccine has been proven safe and effective, life is not a controlled environment. Even as a mom who is pro-vaccination, I have chosen for Mighty Z not to have the flu vaccine, and many other moms who also have children who are medically fragile have chosen the same. It’s not because we feel there is something wrong with the vaccine; it is mostly because through trial and error we have found that a flu vaccine for our kids has sent us to the PICU more than once.  

 

Whether or not to give your chronically ill, medically fragile child the flu vaccine is just as hot a topic as the 2012 election was. When you deal with a child that has a rare disease or really any disease, being pro vaccine for all vaccines can be tricky. As a mom with a child like Mighty Z, it is up to me to make sure that it is safe for my child to have all vaccines, through research and trial and error. What might be good for some can be deadly for others, and sometimes you have to weigh the “is the risk of having a vaccination worth a trip to the ER” question. You have to know your own child and with the help of your doctor make the right choice when it comes to giving or not giving the flu vaccine.

If you choose not to give your medically fragile child the flu vaccine, it is imperative that you help protect your child from being exposed to the flu as much as possible, and also look for signs that your medically fragile child might have the flu.

Some great ways to limit exposure according to Flu.Gov are to wash your hands often with soap and water or an alcohol-based hand rub. Avoid touching your eyes, nose, or mouth. Germs spread this way. Try to avoid close contact with sick people. Practice good health habits. Get plenty of sleep and exercise, manage your stress, drink plenty of fluids, and eat healthy food. Cover your nose and mouth with a tissue when you cough or sneeze. Throw the tissue in the trash after you use it.

The signs that your child might have the flu are:

A 100^oF or higher fever or feeling feverish (not everyone with the flu has a fever)

A cough and/or sore throat

A runny or stuffy nose

Headaches and/or body aches, chills, Fatigue

Nausea, vomiting, and/or diarrhea (most common in children)

So weather or not you vaccinate for the Flu make sure you take preventions against it and watch for signs for it.



edited by Emily Joy Minich
01 02 12

Doctor Stalking

When your child gets a new doctor, it is usually through the doctor lotto. You know what I mean: your child winds up in the ER with a seizure and then is admitted, and wham bam, the next morning you have a new doctor who you have never met. It happens all the time, whether your child has been given a new party favor (such as having a seizure for the first time) or your primary doctor tells you need to see nephrology, endocrinology, etc.; the doctor gods spin the Wheel o’ Doctor Wheel (much like the Wheel of Fortune) and you get whatever doctor the arrow points to.

 

This new doctor can be good, okay, bad, or downright horrible, yet you are “supposed” to make do with this new doctor and trust everything he says, right? Absolutely NOT!!! Every time Mighty Z gets a new doctor I begin to doctor stalk.  I ask all my friends with miracle babies if they know the new doctor; I ask my other doctors about him, and yes, I even Google him. I want to know all I can about this new doctor before I see him in clinic.

 

During my first visit I assess the new doctor:  has he read Mighty Z’s medical records?  Has he looked up Mighty Z’s syndrome?  If so, does he understand it?  And above all, does this new doctor listen to me?

 

I totally understand that trust and respect must be earned.  The doctor has to earn my trust and respect, but I also must earn the doctor’s trust and respect. I think of this as a new relationship in which the doctor and I are just starting a relationship and we both are very wary of each other.  There is no trust and no respect, and we tip toe around each other until we have established trust and respect. The level of trust and respect varies from doctor to doctor. I have found out the hard way that just having an M.D. at the end of one’s name doesn’t mean he knows how to care for Mighty Z.

Mighty Z feels the same way.  I know when Z trusts a doctor and when she doesn’t, and when she doesn’t is when we start looking for another doctor. Yes, you can fire one doctor and hire another if you do not trust the one you were given by the Wheel o’ Doctor Wheel. The best way to go about finding a new doctor is the same way you stalked your old doctor: asking other mommies of miracles, asking the doctors that you trust, and Googling.

 

Doctor stalking is a must for mommies who have been given miracles; your doctors must be worthy of your trust and respect because only then can you be a team.

Edited by Emily Joy Minich

 

01 02 12

My Dream of Hope's Seed

“You have turned for me my mourning into dancing; You have loosed my sackcloth and girded me with gladness.”  Psalm 30:11

When Mighty Z was born, I mourned not just that fact that my child had a horrible disease and that I was told she wouldn’t make it to her first birthday, but I also mourned the friends and family I lost. Frankly, nobody knew what to say to me and at times people still don’t, and so many times they just stay away from me in hopes that they can avoid any awkward situation with me. I remember sitting up in the NICU (Neonatal Intensive Care Unit) and feeling completely and devastatingly alone.

The Devastating Silence

Of course I had my mother, father and one of my aunts who came up to show support, but even they didn’t know what to say. What do you say to a new mother who has been told there is no hope and all she can do is trach her beautiful baby, place her on life support machines, and pray, always pray, that she would survive?  I remember that traching Z was the hardest choice I had ever made in my 25 years of life and I was devastated, and nobody knew how to comfort me.  I think that if they had told me that all would be well, I might have gone over the edge because nobody could understand how hard it was.
As the years flew by and I had adapted to having a child with a trach and on a ventilator, we stilled graced the PICU (Pediatric Intensive Care Unit). I began to look through the slits in the curtains that separated me from other mothers with children who were also fighting huge battles, and slowly a little seed started forming in my heart. I thought to myself Wouldn’t it be wonderful if I knew these other women who are also going through exactly what I am?

My Dream

I went home and I began to dream, to dream of an organization that would bind parents of special needs children together, to help mentor one another, help pray, and understand what this new world was about.  I had a burning desire that other new mothers who also had to trach their babies, place them on life support machines, or place tubes in their babies’ bellies, or have to have their babies fitted for power chairs would have the support of other mothers who had to go through the same thing so that they no longer felt alone.

Turning My Dream To A Reality

I tried for years to create such a group but every time I couldn’t get off the ground. I prayed and prayed that God would show me how to start it yet it felt like He wasn’t listening. Last December I was asked to start a local chapter of a national group that supports special needs moms.  I was told I could make it whatever I wanted; however, my ideas far surpassed the ideas of the group.  I wanted more; I wanted to empower other mothers with these special little miracles to go back up to the NICUs and PICUs and let the new mothers see that they were not alone.  I wanted to create a bond of friendship so tight that when one of our own babies was in the hospital, we would visit each other in order to fill each other’s cup full of hope.

Not So Easy

The national group didn’t want that. Their vision was strictly online and although that is so important, I wanted, no, needed, the face to face friendships. Then God sent me a friend– someone who also had felt the desire to make sure that others didn’t feel alone like we had.  Emily Minich and I began to talk and share with each other our dream for such an organization.  You see, what God was waiting on was for me to meet Emily.  I needed my other half, so to speak.  Everything I am not good at Emily is amazing at, and vice versa. Once we launched our group there was no holding us back.  God began to bring people in to the group; He aligned people with the power to get us into the NICUs and PICUs who were thankful for our presence there.

Friendship And A Vision

Emily and I named our group Hope’s Seed, because what we wanted to do was plant seeds of hope into the mothers of special needs children, so that these women can know that there is always hope and that they are no longer alone, that we will help pick up the torch in the darkest night and show them that the way is full of light.
You see, God did turn my mourning into dancing.  He gave me friends that finally understood this new normal world that I was made to live in.  He took off my sack cloth and girded me with gladness and giggles.  

Hope’s Seed Grows

My friends at Hope’s Seed always know exactly what to say no matter what the doctors tell me. They are not frightened by machines and alarms. Trachs, ventilators, G tubes, power chairs, any trisomy syndrome, autism spectrum, and mental health issues are common among us and they bind us closer together as a family. We have all learned to see the beauty in the special needs world and now are more partial to it than the regular world.
Hope’s Seed mission is simple that no mother is left all alone with no hope in any part of this journey. We want to be that person who helps carry this weight, and we want to be the one who gives you the tools you need to walk this road. We are the people who want to plant seeds of hope in you and let you know that you are no longer alone.



edited by Emily Joy Minich

01 02 12

Surgeries,Seizure, and School Oh My!!!!

This summer has been a whirlwind of an adventure, and not an adventure that any one of us wants to have again, especially Mighty Z. We started the summer in regular fashion, full of ideas of seeing all of Dallas’s little hidey holes, exploring the Arts District, the new museum that just opened and hopefully, having a little summer excursion away from Texas. Unfortunately, less then a month into summer,  all our plans came to a screeching halt.

 

The tumble down the rabbit hole started with Mighty Z’s loop recorder that was placed in her chest in April.. Which, as many of you have read in earlier blog post, led to Mighty Z having a cardiac pacemaker, going into respiratory acidosis, almost dying from that, then going to another cardiac pacemaker ‘redo’ because  when the ICU doctor was resuscitating our Mighty Z, one of the leads fell out of Z’s left ventricle of her heart. Just when we thought all the drama was over, Mighty Z had her first seizure.

 

The seizure episode started on a night like every other:  uneventful. I had placed Mighty Z on her breathing pacemakers and put on her pulse ox probe (to monitor Z’s oxygen levels and heart rate) gave her all her medications and breathing treatments. As usual, I went to clean the kitchen while Z watched a little T.V. before bed. All the sudden I heard her alarms go off -- frankly, I thought Z was just moving around and the monitor was just not picking up (which is common). In  true perfect ‘mom style’ I said loudly to Z “put your leg straight so the monitor can pick up the signal!”

 

Usually this is met with Z saying “okay, okay,” however, this time I was met with silence. Thinking that Z had her headphones on, I went in to check her and there I found Z’s legs and arms in odd angles and Z pale covered in a sheet of cold sweat and staring out into space. In the beginning, although she couldn’t look at me, she was answering me in a monotone voice. I calmly placed some oxygen on Mighty Z and then rolled her to her side, called 911 and that is when Z began to start twitching first in her face and later on her eyebrows, torso and arms. Z was completely nonresponsive while this was happening.

 

As I held my sweet Z while waiting for the ambulance to arrive, my thoughts turned to Lala, who  was there running around grabbing my purse and some items for me to take. Lala was perfectly calm but my thoughts were torn because I could not leave her alone yet, and I could not leave Z alone either.   As I wrestled within myself on how I was going to care for both of my girls, my sweet, sweet friend T, had just driven past my house from the gym and saw the ambulance and stopped. Relief flooded my heart as the paramedics were placing Z on the stretcher and as soon as I saw T, I knew that Lala would be cared for while her Daddy came home from work.

Long story short, Z had a focal seizure and her EEG report came back with generalized spiking all over. We had two choices on how we could move forward: one, we could wait and see if she would (and according to the EEG she would at some point) have another seizure and then diagnose her with epilepsy and then start her on antiseizure medication, or, two, be proactive and call it what it was (epilepsy) and start her on the medications right away. The reason I went ahead and started her on the medication is because I felt during this first seizure we had been blessed that Z was on her machines and monitors when it happened -- what if next time we weren’t so lucky? And my philosophy has always been “try to be proactive and not reactive.”

 

Whew! That was over and we all thought that our drama-filled summer was at an end and we finally welcomed the thoughts of school and fall. Mighty Z was to start at her new school, I was to meet with her new teachers and calm down any fears or concerns, and all would be well! The new school was proactive and actually looked up and researched her disease and quickly came to realize how medically fragile our Mighty Z is and their concerns began to grow. I will say that on paper Mighty Z’s syndrome looks horrific, but in actuality it isn’t as dramatic as it sounds. Of course this is coming from a momma that has been dealing with it for twelve years and so it is no ‘big deal’ to me. The new school decided they couldn’t handle even the thought of having a child like Z in their school, even though Z had never had an issue at any of her other schools in regards to CCHS (congenital central hypoventilation syndrome).

 

After begging, pleading, and practically bartering. The new school allowed Z in class with some stipulations. First, Z’s big doctor had to call one of the Board of Trustees (who happened to be a doctor at Scottish Rite Hospital) and tell him all about Z’s condition and write a letter as well. Second, I had to send ALL of Z’s medical records to that same doctor and to the school. And finally, I had to be at the school during P.E. (why just P.E., I have no idea).

 

Why you ask didn’t I just find another school, or just home school her? Well I truly feel it is important for Z to be at this school -- it will provide many things that Z needs to push her to the next level academically and socially.

 

I am hoping and praying that Fall is kinder to us than Summer was, and that we can go back to just being a normal family that happens to have a child on life support machines.

edited by Linda Kruger

01 02 12

Trisomy 13 Isabels Story

Trisomy 13 has held a special place in my heart simply because of Lexi (Alexis Harlow) She was an angel sent down for us to have just a glimpse of what heaven is truly like. Lexi had me reading everything about T13 and finding others that had a child with T13. Even though she was not mine I felt a connection to her in a way she was mine in spirit She reminded me of our Sweet Mighty Z and I am thankful Lexi gave her mommy to me. Since Lexi has gone to heaven her mommy has picked up Lexi's torch you can find out what Lexi and her mommy have been up to here.




Because of Lexi I was fortunate enough to find Isabel. You well never know a little girl with as much fight and heart as sweet Isabel and the mommy who fights for her.



          Here is Isabel's Story





I always knew growing up that I wanted a big family. When we found out I was pregnant with my fifth child my husband and I decided that I would have my tubes tied. Five was a good number and I felt we had contributed our share to society. Well apparently God had other plans. During my c-section my doctor was unable to find one of my tubes so we decided to fore go the ligation.



 Well 8 months later we decided we wanted one more. We had 3 boys and 2 girls so we said why not, one more girl to make it even. We tried for a few months with no luck, then we tried Clomid to increase my ovulation, well 2 months of that was enough for me. The side effects were way too harsh. After another 3 or 4 months we decided to leave it in God’s hands. Well, three days before my 31st birthday I got a positive pregnancy test. This is where our journey began.


From the beginning this pregnancy was different. I bled on and off for the first three months and was terrified that I would lose this pregnancy. As we approached the second trimester the fear started to ease. I soon found out that we were indeed completing our family with a baby girl an even team of three and three. Weeks were turning to months and slowly I started to feel uneasy.



 Isabel was not as active as my other pregnancies but the doctor chalked that up to my anterior placenta. He said I probably couldn’t feel all the moves because my placenta was in the front of my uterus and not the back. I tried to accept this but my mommy instinct knew better. I always loved being pregnant but with this pregnancy I did not feel the same. I didn’t FEEL pregnant, I couldn’t excited and I had an overwhelming feeling of doom.



I knew I was at a high risk for complications with an anterior placenta and a previous c-section scar, I really thought I was going to die and not get to see my little girl, I thought the fear of doom was about me. Well, I was close but not quite. On a snowy morning in December of 2013, the 14th to be exact I delivered a beautiful 7lb 8oz baby girl via c-section. She would change my life from the moment she was born. Imagine being strapped down to an operating table and hearing the words “can I get some help with this baby!!” My baby girl needed to be resuscitated. They got her breathing gave me a chance to kiss her and whisked her off to the NICU. 24 hours later she got the all clear and was in my room, this is when I noticed my baby girl was special.


 You try to convince yourself as a parent that the little things you are noticing are OK, because every momma wants her baby to be OK. The more I held her the more I noticed, a floppy ear, clenched fists held against her chest, and something was just different in her face. I will confess I was sad, I was confused and I tried to cover up her differences. Not because I was ashamed but because I did not want anyone looking at my little girl in a different way. People can be cruel and I was not ready for the questions or remarks. The doctors assured me she was fine and we went home 3 days later.


 All was not fine. At 5 days old Isabel coded at home, we started chest compressions, rescue breathes and called 911. I will never forget looking at my little girl turn purple and thinking I was going to lose her. Well that night I cried to her in the hospital and said how sorry I was for not being more accepting of her differences and for being scared about having a special child. I promised her if she pulled through this I would be her number 1 advocate and the most amazing mother to her. Well baby girl listened and 2 days later we were sent home with a diagnosis of an ALTE Apparent Life Threatening Event. The doctors assured me this would not happen again.



Well it did happen again and again, we know now that she had APNEA and seizures due to her diagnosis. We ended up in the hospital again for failure to thrive at 3 weeks old. We got a consult from nuero, the first thing the neurologist asked was if anyone ever told us that Isabel had dysmorphic features. No, but we knew that and we were telling people all along that something was wrong. At 5 weeks old Isabel was admitted to the PICU for uncontrollable seizure and had to be

intubated.


I remember rubbing her forehead and crying and telling her how sorry I was that this was her life. I thought this was the end, she was intubated, she couldn’t breathe on her own and the seizures would not stop. They finally did stop 5 days later. Now we were waiting for her genetic testing to come back. The next few weeks are a blur of more consults, more abnormalities and then a diagnosis. Patau Syndrome, Trisomy 13. As I sit here crying I will never forget that day, I remember researching and scouring the internet and everywhere I turned were the words “incompatible with life.” I remember looking at my husband and telling him “I can’t lose her.”


Isabel has the mosaic form, so only 20% of her cells have an extra 13th Chromosome. She does not have any major heart or brain issues, the doctors were honest and said they just don’t know. They don’t know enough about mosaicism, they can’t give us a definite prognosis. Her geneticist was very adamant that she does not have any life shortening abnormalities, but of course with her underlying syndrome you just never know. Isabel is 2 ½ now. She has seizures, she is trached and g-tube fed, she has sever cognitive impairment, but she is here and she is a fighter.

Isabel will be attending pre-school in the fall and I think she will do great. There are days when I can look at her at almost forget about her syndrome. Those are the days I love the most. Then the moment will hit when she seizes, runs a 105 temp, or just gets sick. Those days are unbearable. I cry and I fear and I always wonder if this is it. I never bought bigger size clothing for Isabel, and I never allowed myself to think in the future. I often wonder what will happen when it comes time for her to go.


 I wonder if she will feel it, will she know she is leaving us, will she be sad or scared. Through my tears I type this because it is a though NO PARENT should ever have to face. I love that little girl with every inch of my being.


I confess I get angry with Trisomy, I want more for her, I want her to experience everything life has to offer. I wonder how Isabel would be without it. What would her personality be like? What would she want to be when she grows up? Would she want a lot of kids like me? I will never get the answers to these questions. Yes, I am angry but I am also thankful. Isabel is here and she is fighting and she is living. Then I realize Isabel had the best of everything, she knows nothing more than love, happiness and comfort.


She gets more heartfelt love from her parents and her amazing siblings than most people get in a lifetime. Her Trisomy does not define her, Isabel charts her own course. She has taught our family to love, to enjoy and to LIVE!! The little things are less important in life now. The dishes can stay dirty long enough to watch a family movie, the living room can stay cluttered so we can camp out on the floor. Memories are what life is made of. I still don’t know what the future will hold for Isabel.


Honestly, do any of us know what the future holds for us? They are children that pass suddenly and parents who wish they had more time. Thankfully I have the knowledge of the unforeseeable. I know to enjoy each moment and make the best of it. I try not to allow my thoughts to wander to far, that would just drive me crazy. Every time I hear of a child with Isabel’s syndrome dying the thoughts flood me again.


Many of friends are on the other side of this journey, their children are playing together in heaven. I find strength in them and admiration, I know when it’s time they will be rocks. I have a friend whose daughter is mosaic like Isabel and she is 25, I find her hope in her and she has become one of my closest friends. I will love Isabel and care for her for as long as she allows me to. I know I was chosen to be her mom for a reason and I embrace it. I am a better person and mother because of Isabel and I could never thank her enough for that.

 My little girl has special needs and I am a proud special needs mom!!01 02 12

I RUN 4 Z

The other day one of my beautiful friends suggested I look into a group called I Run 4 Michael for our group Hope’s Seed. I looked at the website and debated about it. Why? Well, I truly don’t know; however, I looked at the site again after a great night’s sleep (finally!  Mighty Z’s alarms went off only seven times), and then I was amazed and excited about I run 4 Michael. This group pairs a runner with a person or child with a disability, and the runner runs for that person or child and their disability. This is a quote from their website:  “The mental and emotional encouragement for both runner and honorary runner is proving to be a whole new level of motivation and awareness.  Runners are able to find a whole new sense of purpose in their running while sharing who they are running for and bringing awareness to diseases and disabilities of all types.”  

I thought this is a great concept, but I needed to try it out for Hope’s Seed to make sure this would be something amazing. My first thought (I know, I know we have been down this road before): “I can’t use Mighty Z, she isn’t special needs!” And then once again I had to slap myself and say to myself, “Momma, wake up and smell the coffee!  You hook up your kid to life support machines every night, you recently almost lost her, and she has had to have 2 cardiac pacemakers implanted within less than a week; what does it take for you to realize Mighty Z has special needs?!?”  Honestly I have no idea why I wrestle with the fact that Mighty Z is indeed a Special Needs child-- I just do. I think that it is hard for us all to say those words.

Anyway, after I jumped off the bus o’ denial, I slowly made my way back to the bus o’ reality and asked for a match for Mighty Z. It only took a couple days for Mighty Z to get her Mighty match.

The very day Mighty Z was matched with Beautiful (Beautiful is the name Z and I came up with for our beautiful runner), Beautiful ran for our Mighty Z and CCHS (Congenital Central HypoventilationSyndrome). Beautiful made a shirt, letting all who saw her know that she ran for Z.

Mighty Z was super excited about this and had me send Beautiful encouragements along the way as Beautiful ran in the Spartan Race and the Zombie race. Beautiful sent Mighty Z pictures from the race letting Mighty Z know that she was thinking of her as she ran.

The interesting thing is that Beautiful struggles to breathe!  She has COPD, so a common bond was instantly built between our runner and Z.  (Although technically Z doesn’t struggle to breathe, she just doesn’t breathe…. but the breathing thing is the common factor.)

I Run 4 is an amazing group, and Mighty Z and I feel a since of pride that Beautiful runs for Z. Not only is Beautiful spreading awareness about our Mighty Z she is also spreading awareness about CCHS (Congenital Central Hypoventilation Syndrome ) which is what means the world to us.  

Mighty Z always say's "there isn't and ounce of quit in her" and Beautiful shares that same tough girl motto


 Edited by Emily Joy Minich

01 02 12

Cardiac Crisis

After Mighty Z had her loop recorder placed on her heart I felt relieved, relieved to know that if Mighty Z’s heart was pausing, now we would catch it. The first month that we downloaded her loop recorder through the telephone lines, I received a wonderful call from the EP (electrophysiology) nurse saying Mighty Z’s heart showed no signs of pausing (whew). The same with the next month when I downloaded Mighty Z’s loop recorderand I felt like we were on a roll, until Mighty Z came and told me she had had another episode.

 

 I know what you’re thinking. Why wasn’t I there when this episode happened and what is  an “episode?.”Sometimes, not all the time, Mighty Z will faint -- it is very random and you have no idea when it is going to happen or what triggers it. Since Mighty Z is twelve, she hates when I follow her around like a lost puppy and, let’s face it, it gets annoying for both Mighty Z and myself.  So, I let her walk around without me tagging along after each step. Mighty Z told me this “episode” was not a bad one, it was just a little episode. However, being who I am, I quickly downloaded Mighty Z’s loop recorder and waited once again for the EP nurse to call. Waves of dread came over me because I knew Mighty Z’s heart had paused, and I knew that it meant she would have to have a cardiac pacer implanted. This was confirmed when the EP nurse called and said that Mighty Z’s heart had paused for 4 seconds and then again for 5 seconds. Knowing what I know, that was almost double the legal limit for a heart to pause, so I waited to have confirmation from her cardiologist. Within minutes Mighty Z’s cardiologist called and told me the heart-breaking news, that yes indeed, Mighty Z would need a cardiac pacemaker implanted.

 

 

 I always knew that it wasn’t IF Mighty Z would get the cardiac pacemaker, but that it was WHEN. When would Mighty Z’s heart stop? And would I be able to catch it in time to save her life? I will confess, I put on a brave face, called Mighty Z’s daddy, and both grandma’s and calmly told them that Mighty Z’s heart was pausing and that she would need to have a cardiac pacer implanted. My voice was strong with no waver to it as I called each person to relay the news. It wasn’t until that night when the tears started coming and the fear and anxiety started to wash over me. I first got mad at myself, because you see, I knew Mighty Z’s heart was pausing and I kept pushing the cardiologist to listen to me. As I lay in bed and cried, I felt like I had gone on a witch hunt looking for Mighty Z’s heart to pause and I finally found a witch. Yes, I know completely irrational, however Mighty Z was going to have to endure so much more and I wanted to spare her this, even though I knew this was so important.

 

The cardiac pacemaker surgery was set for the next Monday and I was ok until the Saturday and Sunday before. I had to breathe through those waves of fear and anxiety as they attacked me over and over again.

 

When Monday morning came, I bravely packed Mighty Z and my bags and headed up to Children’s Medical Center of Dallas Texas to be admitted. Once through admitting, we were brought back for pre-op, and Mighty Z was given what I always call a cocktail (a mixture of 2 vials of Versed and 4 vials of Lortab, in what looks like a shot glass). With Mighty Z already on her breathing pacemakers, I felt confident that she would be fine, however once she fell asleep, she needed to be bagged (an ambu bag is a hand-held device frequently used by trained professionals as an essential part of resuscitation to provide positive pressure oxygen to a patient whose breathing is insufficient, or has ceased completely. The act of using the device is frequently referred to as bagging. The ambu bag has a long tube that connects directly to an oxygen outlet or tank to force 100% oxygen into a patient’s lungs). For a couple of breathes the EP Nurse and I worked on Mighty Z and then Mighty Z was able to breathe with the breathing pacers , with just a bit of  oxygen to help her. Even though that was a bit scary, I still felt comfortable with the cardiac surgery. The surgery lasted for about three hours and the EP surgeon came out and told us that Mighty Z did great and that we could see her in recovery. When her daddy and I got to recovery, Mighty Z was responsive, yet groggy. Her oxygen levels were great without the need to supply extra oxygen.  The only issue was that Mighty Z’s blood pressure was going crazy -- at some points it was reaching 160/102 and then dropping to 74/50 (normal blood pressure is below 120/80). Mighty Z’s heart rate was spiking to 180 and then dropping to 50 and each time it dropped to 50 we could see on the monitor Mighty Z’s shiny new cardiac pacemaker go off. The cardiac pacemaker went off a total of nine times just in the first hour after her surgery.

 

 

 

Then things started unraveling quickly…Mighty Z started needing oxygen -- not just a little bit -- we are talking 5 liters of oxygen and then Mighty Z’s daddy noticed that her breathing pacers were not breathing for her like they were designed. Quickly her daddy and I began to work on Mighty Z. We changed the antennas to her breathing pacers, then we repositioned them, and then we realized Mighty Z was not breathing at all. I called the PACU (post anesthesia care unit) nurse and told her Mighty Z was not breathing.  Quick as a flash, the PACU nurse started bagging Mighty Z as I hyper extended Mighty Z’s neck and held the mask securely to her face. The PACU nurse then called the attending in the PACU, saying that Mighty Z was unresponsive and not breathing at all. The attending came over and started bagging Mighty Z and had the PACU nurse call the CICU (Cardiac Intensive Care Unit) doctor and have him come down STAT!! The CICU doctor came down and bagged Mighty Z for 30 minutes and then magically her breathing pacers started breathing once again for Mighty Z, however Mighty Z was still unresponsive. The CICU doctor gave her six shots of Narcan (a narcotic reversal) as the CICU nurses pinched and prodded Mighty Z’s little body to get some sort of reaction out of her. It wasn’t until the 6^th shot of Narcan that Mighty Z finally opened one eye.  We tried to keep her responsive without much luck until several hours later. Finally at 9:30 pm, Mighty Z was able to wake up and talk, although it took tons of stimulation from her daddy and I, and unfortunately that lasted for only thirty minutes until she once again feel into a deep sleep. She was still requiring five liters of oxygen for the rest of the night until she woke up the next day, still very groggy and blessedly with no idea of the trauma her little body endured (I praise God for that).

Three days later, Mighty Z was back to her old self and the doctors felt comfortable with Mighty Z coming home and of me taking over her care. Since the anesthesia during surgery, Mighty Z has not had a drop of pain medication, simply because we are all afraid that she would once again go in to a drug induced coma.

 

 

 So to answer the obvious question, “What happened to Mighty Z and why did her breathing pacers stop working, then all of a sudden start working again?”  The answer is simple, the anesthesiologist gave Mighty Z Fentynal on top of the Versed and the Lortab  -- it was too much for her little body with all those drugs racing through her system. It made Mighty Z unresponsive and her CO2 levels go through the roof and made her body go into  respiratory acidosis, which basically paralyzed her muscles since the breathing pacers make the diaphragm (and the diaphragm is a muscle) expand and contract.  The acidosis was not allowing her diaphragm to move even though the breathing pacers were telling the diaphragm to move -- the more the doctor bagged Mighty Z and lowered her CO2 levels, the more the breathing pacers were able to make the diaphragm expand and contract. The Narcan reversed the overdose of anesthesia and made Mighty Z responsive again.

 

I am sure you are overwhelmed with this blog post as I was living it.   If it weren’t for Mighty Z’s daddy, the PACU nurse, the attending PACU doctor, the CICU doctors, nurses and I…well, this blog post would have been completely different or probably not written at all. Many times I forget how fragile Mighty Z truly is and what a Mighty Miracle she is to all of us.

edited by Linda Kruger

01 02 12

What lies within

A wise man named Ralph Waldo Emerson once said “What lies behind us and what lies before us are tiny matters compared to what lies within us.” 

Walking this “new normal” road of special needs is hard on every account. I know that once Mighty Z finally made her way home from hospital after spending her first six months of life in the NICU, what lay behind me was in many ways a safe haven.  Although I longed to have her home with our family, at the time I had no idea what the reality of having her home would be like…and the overwhelming responsibility to care for, and to keep  alive, a baby that was as medically fragile as Mighty Z  was at six months old. I truly felt that I could not do this job,  and although I never told a soul of the insecurities that surrounded me, I found  true courage, not in a loud roar, but it was in a tiny voice inside my heart saying I will do this again tomorrow as I laid my head against my pillow  and I cried myself to sleep every night for months and sometimes I still do . That whisper kept saying, “I will do this again.”

 You see I had no idea what lay within me -- I only saw the imperfection, inadequacies, and the fear that dwelt so close to the surface.  Only after several years of walking down this road did I start to see in myself what truly was the strong foundation within me…the doctors and nurses begin to ask not just what I thought, but began to ask for my advice. It wasn't that I was so educated and so knowledgeable, it was that fact that I had pushed through for my daughter. Even though fear and anxiety washed over me like a tidal wave (and still does), I pushed through that…I let that wave of fear and anxiety hit me and then I pushed through it. I do so silently, most times, simply because when the waves start to wash over me I have to react to what is going on with Mighty Z immediately, and there can be no hesitation.

When you embark on this “new normal” road of special needs, you might feel  the same way and you might look around you and think there is no way I can do this…I just can’t do this. You might see the others that walk this road and think that they are handling it better. You may feel that what lies within you is nothing but imperfection, inadequacies, and fear, but that is not really the case. You are made of sterner stuff then you think, you do have the courage. Just listen to that little voice that says, “I will do this again,” even if you cry yourself to sleep. 

01 02 12

adventures in education

Finding the appropriate school for Mighty Z has been an adventure to say the least.

When it was time for Mighty Z to go to school at age 3, she went through a public school program called Head Start in Las Vegas. It was amazing!  Mighty Z wasn’t talking, but the teacher taught her sign language and encouraged Mighty Z to make some sort of noise.  Mighty Z grew leaps and bounds with this teacher and with the program, so when my husband decided that he should change careers and move to Maryland right outside DC, I thought that Mighty Z was well on her way to amazing opportunities.

Apparently, living right outside D.C. doesn’t mean that your child will get a great education. Even though Maryland is ranked one of the top schools in the nation, they forgot to weigh in the special needs part of the public school. Mighty Z was not taught anything and was allowed to behave however she wanted to, and as a 4 year old that was right up her alley.  The IEP meetings were a joke.  The lead teacher and speech therapist didn’t know sign language and therefore didn’t help Mighty Z at all.  At one time both teachers tried to give Mighty Z a keyboard that would speak for her, thus making sure Mighty Z would never need to learn to talk. They claimed it would be easier for all! 

 I quickly pointed out that it would not make Mighty Z’s future better.  I was mad as you can imagine, and I took matters into my own hands.  I began teaching Mighty Z at home and I took her to private speech.  In a month Mighty Z was talking in full sentences. I blame myself for not pushing Mighty Z to talk sooner but hey, I was focusing on trying to keep her alive, and like so many other things, the talking fell to the way side until I had time and motivation to get it done.

After my brief introduction to the public school system in Maryland, I placed Mighty Z in Catholic School.  There at St. Martin of Tours Mighty Z blossomed. I have never been so proud of a school as I was of that little Catholic school in Maryland.  Not only did they teach Mighty Z, but they taught me as well about what Catholics are really about (I grew up nondenominational). I still feel a sense of pride to say that I was part of something as wonderful as St. Martin of Tours, so of course I wanted to continue the Catholic education for both Lala and Mighty Z when we moved to Dallas.

I will admit that I clustered all Catholic Schools into a big pile and thought they were all alike.  At St. Monica’s in Dallas I was told many horrible things about Mighty Z-- none of which were true and some of which still haunt me to this day. Having the Principal and the counselor tell me that they didn’t care for Mighty Z’s disease was the least of the things they said. They left voice mails on Mighty Z’s tutor’s phone about how that I was in denial, difficult, and delusional, and that Mighty Z was retarded. How could a counselor say those things about a little girl in the second grade?  After many years I found out why they said that; it was because Mighty Z had colored in all the bubbles during her standardized test (ummmm, she was in second grade for crying out loud.)

 St. Monica’s accused the Nun at St. Martin of Tours of being a liar, and as I didn’t grow up Catholic I wasn’t positive it is a no-no to call a nun a liar, but I think it is.  So we had to find another school that would see the treasure I felt that Mighty Z was.

Once again I found a gem of a little school, a school that did view Mighty Z as a treasure and thought that Mighty Z was a smart little cookie. And up until this year, I had visions of staying at Our Redeemer Lutheran School until sixth grade, which is when the school ends.  This year was different. The teacher was great, the school was great, and they all still felt the same about Mighty Z.  What changed was that Mighty Z was being bullied!  A little boy was punching her in chest which is where her life support machines are.   Even though Mighty Z’s friends stood up for her and protected her, they were punished for doing so. I know what you’re thinking!  Where was the teachers?  Right?  Well, I will say that kids are smart and many times things happen when the teacher is not looking. 

Was this child who was hitting Mighty Z punished?  I honestly have no idea, but even though we told the teacher, the bullying continues.  Mighty Z has never backed down from a bully but this time it hurt her heart and she was scared. Sometimes all you can do is leave a place to protect your child. I am leaving this year with a heavy heart.  Even though this new normal world of special needs has rearranged my dreams and hopes, it still hurts to have this dream of Mighty Z’s school come to an end in such a heartbreaking way. Mighty Z has started counseling to talk about this bully and also the fact that she has to go through so much to be alive.

Even though I have a heavy heart about Mighty Z’ s School, her daddy and I have looked into new opportunities for Mighty Z, for a place that can help Mighty Z succeed even more. And we think we found one. 

I feel good about sending Mighty Z to Dallas Academy; it is a school for children with ADD and ADHD, and even though Mighty Z does not have either ADD or ADHD, Mighty Z still has to work extra hard to stay up with her peers at Our Redeemer. I am hopeful that Dallas Academy can push Mighty Z even further and give her the tools not just to keep up, but to soar.  All things happen for a reason, and even with the sadness I feel, I know that we are making the right choice.

edited by Emily Joy Minich

01 02 12