That First Night

The first night of Mighty Z’s life was heartbreaking.  There were no
well-wishers, no flowers, and no congratulations; people just didn’t
know what to say. My mom stayed with me that first night on the labor
and delivery floor. I was all right-- as all right as I could be
having my baby in the ICU.  I was holding it together until the nurse
knocked on my door and told me that is was time for me to feed my
baby.


I quickly sat up thinking that maybe it all was just a bad dream and
maybe my baby was fine.  Just as I thought that silly thought I heard
another nurse say, "No, that is the wrong room.  This mother's baby is
dying."

How could my baby be dying when just hours before she had been
pronounced perfect??? Tears flowed down my cheeks as I felt a wave of
grief and anxiety wash over me. I felt helpless, weak, and hopeless.


Thankfully the nurses were wrong, but that night was one of the worst
nights of my life.


That was the night that I really knew my world had changed and that
St. John's Medical Center would be my home for the next six months. 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

Are you really Pro-Life?

What does Pro Life really mean?  Is it just an anti-abortion club or is it really about Pro Life, which simply means that someone is, well, pro-life? The Pro-life movement uses buzz words like “right to life” and “respect life.” Even Governor Perry said in D Magazine that: “children deserve the respect of recognition before their lives are tragically cut short.” Perry also said “I don’t think there is any issue that better fits the definition of “compelling state interest” than preventing the suffering of our state’s unborn. We cannot, and we will not, stand idly by while the unborn are going through the agony of having their lives ended.”

But what about the children who are born with a special need? Are we Pro-life for them? Do we see the beauty in a child who will never be able to breathe on her own without the help of a ventilator? Do we see the treasure that God has given to us in a baby who will have to be tube fed through a tube in her belly? Can we see the miracle in a child who will never use his arms or legs? Do we truly think every child has a life worth living?

Twelve years ago I was told that my daughter did not have a life worth living, and I was encouraged to let her go by the doctors and by people who not just said they were Pro Life but who were actively involved in the Pro Life movement. I was told that they would just take her off her life support machines and I could bathe her, and while I bathed her and dressed her and rocked her she would pass and all would be okay.

I didn’t take that option. I chose to be Pro Life. I chose to keep the miracle that God gave me and not throw away God’s special gift to me.

In the Psalms it says "Lord, what is man that you care for him, mortal man that you keep him in mind? . . . With glory and honor you crowned him, giving him power over the works of your hands" (Psalm 8:5-7).

Genesis 1:27 says “So God created human beings in his own image. In the image of God he created them; male and female he created them.”


There is the key. Not only did God make us, but He values us and created us in his own image, even the children with special needs. The Bible tells us of a God who is madly in love with us, so much so that He became one of us and even died for us while we were still offending Him (see Romans 5:6-8). In the face of all this, can we say that human beings are disposable, like a car that becomes more trouble than it is worth? "God doesn’t make junk." If you believe the Bible, you have to believe that human life is sacred, more sacred than we have ever imagined!



I urge you to look inside yourself and ask are you really Pro-Life or are you just part of an anti abortion club?

All the pictures are of the miracle (my sweet mighty Z) that God has given to me simply because I was Pro-Life.

Edited by Emily Joy Minich01 02 12

Not Quite the Ritz

Making your hospital stay comfortable for everyone can be quite a challenge, even for a scheduled stay, as emotions are high leading up to the departure.  But the overnight stays that begin with a ride in the ambulance…that is a whole other problem

 

When Mighty Z was born and (finally) came home, every time we had an emergency, I was lucky to remember to bring my purse.  Now, twelve years later, I calmly pack our bags in an emergency and packing  for a scheduled stay has become second nature.

 

So what do you pack for a hospital stay?

 

First, I think about hospital smells that trigger lots of post-traumatic stress (PST) and I try to decrease the “smell of the hospital” in our room. When Mighty Z goes into the PICU or just the Vent Floor (the floor of the hospital dedicated to children who are on ventilators) we bring her own hospital gowns -- they are prettier, softer, smell like home -- and as Mighty Z sweetly appreciates that not everyone’s hinny(although Mighty Z does use another word that rhymes with grass, however this is a PG blog so we will use hinny)  has been rubbing all over it . I found some beautiful ‘Mighty Z approved’ hospital gowns from Annie&Isabel. She loves them, as they button on the arms and tie securely, so no private business is showing or hanging out.  They are beautiful soothing colors and they have pockets!

 

Another way we combat the ‘hospital smells’ is with our own sheets that we bring. Mighty Z likes them to coordinate with her hospital gowns. Think about this…when you are sick or in pain, don’t you just want to cuddle in your bed or on the sofa with your blankets? Well, with that in mind, we bring Mighty Z’s sheets and a blanket so we feel just a bit more comfortable. Mighty Z calls her orange blanket ‘puzzle’ and her purple blanket ‘Mister P.’

 

The second thing we bring when staying in the hospital is Ipad, Kindle and computers. It is SO BORING in the hospital! You sit, sit, sit, unless you are Z then you lay, lay, lay. Of course, you’re busy when the doctors are doing rounds and shift change, but other than that, well, it’s boring! Visitors are not just encouraged, but they are begged to come for a visit and long stay! If you don’t have an Ipad, Kindle or computer, most hospital’s will loan you one for FREE -- pretty nice, huh?

 

The third thing that we bring is snacks. Yes we all know no food in the PICU, NICU, CVICU or NTICU.  But I smuggle stuff up all the time and I am very careful to hide my chocolate eating, but hey, I am stressed and need a little help from my friend Mr. Hershey.

 

Being in the hospital is tough enough, especially if it is compounded with all sorts of stress and emotion. Most mothers will tell you that when you are at the hospital with one child, you feel guilty about the other child(ren) you have left behind at home in the care of others.  When you leave the hospital to spend time with the other child(ren), then you feel guilty for being home and not at the hospital. The only way Mighty Z’s daddy and I have been able to lift a bit of the guilt is with what we call the ‘changing of the guards.’ Mighty Z loves the ‘changing of the guards’ and so does Lala.  I stay with Mighty Z all night until about 11am when Mighty Z’s daddy brings Lala up to the hospital so she can see her sister and know that she is alright and that Lala is part of the team. I take Lala home and Mighty Z’s daddy stays with her at the hospital. Lauren and I go have lunch together come home and watch a movie (during which I always fall asleep)! Around three in the afternoon, Lala and I head back up and the changing of the guards happens again.

 

Finding a rhythm that works for the entire family, for those in the hospital and for those back at home, is import for everyone and ensures family bonding time can take place even during the stress of a hospital stay. Bringing the comforts of home to help drown out the hospital environment can, as Mighty Z says, feel as good as knowing you aren’t wearing a hospital gown that someone else’s (grass) hinny has been rubbing all over!

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