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

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

plans I have for you

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

 

Sometimes it is easier to quote this scripture than truly to let it resonate in your heart. I knew this scripture by heart as a little girl, but when I read it again after my baby was trached and placed on a ventilator, it was hard for me to believe. 

 

 

 I could not see how God had plans to prosper us, to give us hope, and to give us a future when the future looked so grim. Every doctor that came and saw my sweet Mighty Z shook his head and said there was no way Mighty Z had a future, and no one had even a glimmer of a plan. 

 

 

Only one little man from India who also was a doctor said, “Don’t worry, momma, it will be a miracle.”  That little seed of hope began to grow and I turned my bible back to Jeremiah 29:11 and reread what it said. 

 

 

 I looked up to heaven and I let HIS Spirit pour into me that HE had a plan, HE had a future for my sweet Mighty Z, and HE was sending people my way to water my little seed of hope that the little doctor from India planted inside my heart. I look back and I see the sweetness of God’s love during those dark years.

01 02 12

Disease Snob?

A couple times a week I goggle Mighty Z’s disease. 'Why?' you might ask.  Because I want to know if there is any research going on, any stories about other kids with CCHS (Congenital Central Hypoventilation Syndrome), or if there is anyone just talking about the disease.


Every time I look, I find someone who obviously knows nothing about this disease saying things like, "those who have been cursed have it" (granted, CCHS's older name is Ondine’s Curse), or "those unfortunate souls who have CCHS", or "this horrific disease that kills babies and small children". I am typically offended by these statements.  Why?  Aren’t those accurate descriptions of what an outsider would think of this disease? Yes, I guess they are, but I don’t see it that way. I see the amazing strength and fortitude these children have, and how funny and silly they are. To me, CCHS is just bumps along the way.


I met a mother of twins with Muscular Dystrophy, and after she told me what life was like with MD, I told her what life was like with CCHS. I was surprised that she wrinkled her nose and said how thankful she was that her twins didn’t have CCHS. I will tell you I was shocked and offended.  I knew for a fact my kid's disease was much better than her kids' disease.


She and I share the same pulmonologist, and so on my next visit to see him I told him what the mother of twins with MD said, expecting him to side with me on the fact that her kids' disease was worse than my kid's disease.  When he sided with the mother of the twins and said that Muscular Dystrophy was indeed easier than Congenital Central Hypoventilation Syndrome, I was once again offended.



Why? Why do I care who has the better disease and why am I defending my kid's disease as the best disease to have? Sounds quite loony, huh? I guess because my new normal way of life is just my normal life, and all others' lives seem harder and less glamorous.  I see these children with CCHS as normal everyday kids; some have trachs, some wear BIPAP masks, some have the breathing pacers implanted, some are 24-hour dependent, and some are 12-hour dependent, but all are just normal kids that play, go to school, have friends, and do their chores.


I guess I have become a disease snob, as crazy as that sounds!  However, I have found that others with different types of diseases think the same way-- that their disease is better than someone else’s.  Whatever becomes your normal is what you think is the best. It's funny how human nature makes what is an abnormal life to outsiders seem so normal to you.

One of my friends who also has a child with the same super cool disease as Mighty Z always tells others, “I hope your disease is as fun as ours."  In a way, that is laughable, because CCHS is not fun per se, and yet in many ways it is since these children are fun in every way. Anyone that has hung out with Mighty Z for five minutes knows how much fun and how funny she is.

CCHS has changed my world for the better, and all who come into contact with it are changed as well, because those who have CCHS have shown us all what the true meaning of life is.
edited by Emily Joy Minich
01 02 12

Drops of Sunshine

The last three months have been drama filled. We have gone from being told that Mighty Z has Hirschsprung’s Disease and will need a colostomy bag, to begging the surgeon to do a pull- though (where they cut out the dead part of the colon and reattach healthy part of the colon), then to being told that Mighty Z doesn’t have Hirschsprung’s Disease but that she may have Mitochondrial Dysfunction. To say it has been a rollercoaster of ups and downs is an understatement.
 
Just when you think life is looking a little grim and waves of anxiety are washing over you, someone drops a bit of sunshine into your life.
 
When Mighty Z was in third grade, she had to do a fine arts project. When I asked her “What do you want to do?”, she grabbed her piano bag and pulled out a piece of music called “Teddy Bear, Teddy Bear” and proudly proclaimed that she wanted to do her project on the person who wrote “Teddy Bear, Teddy Bear.”
 
With a click of a few keys Mighty Z and I found the composer, Timothy Brown. I decided to send him a quick email in hopes that he would respond so that we could print out the email and attach it to Mighty Z’s project board.
 
Not only Did Mr. Brown respond, he was flattered that Mighty Z would choose him to write about. I wrote back and explained that Mighty Z had CCHS (Congenital Central Hypoventilation Syndrome) and was on life support machines 12 hours a day. His response was “Where do you live? I would love to come to the Fine Arts Fair.” I was floored that he would want to come to a little 3rd grade Fair, but of course I sent an email saying we were in Dallas and guess what?? He lived not too far from Dallas!
 
Mr. Brown graciously came to the Fine Arts Fair; he also played for the school and made Mighty Z feel so special. I can’t tell you the tears that ran down my face when Mighty Z slipped her little hand into Mr. Brown’s hand as they walked together to see her project.
 
As the years have gone by, I have sent Mr. Brown Mighty Z’s National Piano Guild Audition results and he has encouraged her on so many levels to continue playing her piano and never to give up.
 
A couple of months ago Mr. Brown sent me an email asking for Mighty Z’s piano teacher’s name and phone number, and saying that he had a surprise for our sweet Mighty Z.  Of course I sent him the information and honestly forgot about it because of all the medical stuff we have had to endure lately.

I dropped Mighty Z off at piano and Lala and I wasted time waiting for Mighty Z’s lesson to end. Mighty Z came skipping to the car with her piano teacher close at hand. Mr. Brown had composed a song for Mighty Z called “Just Believe”!  Can you believe he would do that for Mighty Z? I was shocked into silence that such a great man as Mr. Brown would sit at his piano and write a song for my sweet baby. In some ways I am still overwhelmed that he would do this, and Mighty Z?  Well, she is on cloud nine and cannot wait to learn how to play it. Here is a video of Mr. Brown’s sweet wife playing Mighty Z’s song. Personally I think it is beautiful, and the name of the song couldn’t be more perfect for our amazing Mighty Z.

 edited by Emily Minch01 02 12

I Love Liam Lyon

I started following I love Liam Lyon right after he got his trach ( I have a passion for trachies since Mighty Z had one) I was amazed by this little cubs fight to survive and the family that surrounded this Miracle. I hope it touches your heart like it touches mine.

 

February 18, 2011 – It was a day like any other – and then the world turned upside down.  In my mind I have likened the news like watching the events of September 11 unfold.  Whitney was supposed to have a baby shower that weekend.  Liam wasn’t due for another 5 weeks but he wasn’t waiting another minute.  I sometimes wonder about that because it just happened a special doctor was on duty that quickly recognized Liam was in trouble.  He was immediately supported and transferred to Tulsa from Ft Smith – the first of many flights in his short life.  And Whitney left the hospital with Grandma Nanci and they drove – just hours after giving birth.

I remember the call to me in Houston – the first time in my life I had ever heard of a condition called Hypoplastic Left Heart Syndrome or HLHS.  I could hear the fear in Nanci’s voice.  I could feel the fear in me as I read about this condition trying to understand what they meant by palliative surgeries and comfort care and heart transplants.  I didn’t want it to be true.  Your head swims and your heart breaks and then you have to try and regain control because the fight has just begun – and you will need all your strength.  So you decide that hope is your only course and a positive outlook is the only one you will permit.  And you believe.

Liam went from Tulsa to Arkansas Children’s in Little Rock where he spent most of the first year of his life.  Nanci works in adult cardiac cath labs so she had a good feel for what was happening.  Liam had repeated open heart surgeries – sometimes his chest was left open – he was hooked up to what seemed like a million lines and wires and banks of syringe pumps.  We became fluent in a language no parent should ever have to learn.  We slept in waiting rooms and in hospital chairs – we met other parents – we celebrated with some and we grieved with others.  When he was just 5 months old, it was apparent his palliative surgeries were not working.  He had the Norwood and the Glen – but he was only improved for a few days and started to decline.  Nanci had to head back to work and when she left, she wasn’t sure she would see Liam again.  Almost as soon as she got home, Whitney called and said she “got the call” – which in transplant families means it’s your turn.  Nanci had a friend with a small plane fly her back that night and Liam got a new heart.  The waiting room was filled with friends, family, and prayers – again it was a time to grieve for another family – and there was a soul engulfing fear as you realize the enormity of the situation - that you were having your baby’s heart removed and replaced with another.  But when they said he had some through with flying colors we were so filled with hope – we knew it would not be easy – but he had a chance!

He looked better within days.  He was pink!  But sometime after this, they began to realize he had some other issues like bronchial and tracheomalacia.  He was also very drug dependent from the constant sedation and chemical restraint.  After a few weeks he came off the ventilator for the first time in his life.  Up until then he had always been taped up and sometimes even in restraints.  He was such a fighter.   He had this incredible smile – to be sure some days he made you work for it!  And he had the most enormous soulful and penetrating eyes – and he talked with those eyes.  And he loved to hold hands – especially with his grandma Nanci who never let go.  He started having fluid retention problems and abdominal swelling.  And we found out that the drugs and the bypass and a number of things had severely compromised his kidney function.  And the repeated heart caths had cause an occlusion of many, many veins and most importantly his inferior vena cava – the main venous drainage for all parts below the liver.  They speculated this was the cause of the fluid in his belly that would ultimately back up and make him swollen all over.  They “tapped” his abdomen and it gave him some much needed relief but it did not fix the problem.   I remember a week Nanci and I spent with him in Little Rock in the step down unit.  Whitney and Brody and Cheyanne got some much needed family time and we got some very needed quality Liam time.  We took turns holding him and rocking him.  It was a great week – it was the best week.  He was transferred back to Tulsa – which was closer to home and Grandma Nanci.  He had a window of time around Thanksgiving where he was well enough to go home and a very careful and nervous Nanci drove Whitney and Liam home.  There was a welcoming community with signs and balloons and fire trucks.  It was so touching.  There were so many tears.  The local paper even covered the little Lyon’s homecoming. 

He was not able to stay home long before he had to go back to Tulsa and from there to ACH again.  The word from ACH was his venous blockage was so serious; he would not be able to survive.  Whitney and Brody made the decision to get another opinion.  We would find out, his is not as easy as it would seem, or as it should be.  Eventually he was transported to Boston Children’s Hospital.  They tried to open the vein but were only partially successful.  He was sent back to ACH, and then again back to Tulsa. 

Back in Tulsa they told us we needed to let them place a trach.  It took a while to get our heads wrapped around that – but eventually we did.  We hoped he would only need it a few years at most.  It was a hard decision to have this done, very hard.  But he was able to have all the stuff off his face again – finally.

In April 2012 Liam had become so swollen in his belly and then all the other tissues that he was rigid.  The doctors there would not consent to tapping his abdomen to relieve the pressure.  We begged and pleaded – we cried – we consulted with one and all of them and they would not.  They told us to call the family in – so we did – and we called upon the prayer warriors.  He was baptized and we brought all his little and big cousins in to meet him in person.  We were devastated.  And we were broken.  And then – Liam started to turn around – very slowly his tummy started to decrease.

He improved a while – and in July we celebrated his first ‘heart birthday’ with an amazing outpouring of support – it was themed “Liam’s Day at the Zoo”.  But Liam was not doing well – he was swollen and he had some terrible skin issues going on.  We tried everything to help his skin but were told it was related to the excessive swelling and then the drying effects of the diuretic.  No one really focused on the little black spots he had started to develop.  No one knew those spots would ultimately consume him and end the much too short life.

Since before Liam went to Boston, we tried to find doctors and hospitals that would consider taking him as a patient.  We talked directly to Lucille Packard in California, we talked directly to Boston Children’s, and we searched for 1 doctor to accept Liam as a patient in Houston so he could be around family.  We found a doctor in Houston, Dr. Benjamin Ho, but still Texas Children’s wouldn’t accept him as a patient.  But we finally found what we believed was the miracle we had prayed for - the miracle was Dr. Morales in Cincinnati.  When we were down to our last hope, the doctor’s at Cincinnati said they would try.  They flew him there and tested him and we were so hopeful - so very, very hopeful.

But the black spots were bigger and erosive and the belly was bigger than ever – and the tests we thought showed us a glimmer of hope – well, we misunderstood.  The tests showed that the venous occlusion he should be able to compensate for – the black spots on his skin had worsened – and he lost the tip of a finger and we knew.  He had a systemic fungal infection – bad in most patients, but often deadly in transplant patients.  Once you lose the overall integrity of the body’s greatest barrier to infection in an immune-suppressed patient, you have greatly decreased your odds of survival.  The skin couldn’t support the peritoneal dialysis tubes; all of his life support was maxed out.  God called him home and we shattered in a million pieces.  It was devastating and unbelievable – and something no one should have to go through.  Somehow we got him home and all of us home from Cincinnati to Oklahoma.  And somehow, we planned a baby’s funeral.  With a tiny casket, and songs and pictures for videos, a hundred decisions – I don’t know how we got through it.  We then celebrated Liam’s life and courageous battle with 400 of our closest friends and family and thousands more online for the “miraculous soul” that he was – and we laid the cub to rest in quiet country cemetery in Cameron – the balloons and butterflies we released have been symbolic for us ever since.  The entire community was so respectful and loving – we will never forget.

You go through a range of emotions with a child this ill.  Most days you are terrified.  Some days you want to walk away and never come back.  Some days you are so angry this happened to your child and your family.  Some days you are incredibly thankful for the caregivers and some days you hate them beyond measure.  Some days you are perfectly reasonable and the next day you are clinically insane.  The crazy part is its all normal but there is no “help” at many hospitals for families – only for the patients.  If you are staying there at the hospital you don’t really ever sleep and if you are away, you live in fear of that one phone call.  I started every day like a lot of people, checking on the cubby.  Many days you wonder how you can possibly ask your child to undergo even one more procedure.  But when it comes down to it, if there is hope, you have to try.  And when it was over – it was a mix of profound sorrow, sadness and an unimaginable grief – and a sense of relief.  I am sure many people will take issue with that comment but it is a relief to know he is not suffering and not bedridden – that he is finally out of the hospital and out of that bed.  The old adage hindsight is 20/20 has never been more true – if we knew how it would end for him, would we have done any more than comfort care?  Maybe, but your heart and soul join together in a strength you cannot imagine and you believe with everything you have that together you can overcome all of it.  We believed and nearly 95,000 people believed with us.

I once remember my mom telling me that she would give up everything they owned if she needed to, just to save one of her children.  Well it is true – you will.  Whitney and Brody lived the way many families have to – one hanging on to a job, and the other living at the hospital.  Cheyanne saw her mommy as much as possible but spent nearly 18 months in hospitals and cities all over the US.  Grandma Nanci ended up quitting her job, selling her home, cashing in her retirement, and terminating an eight year relationship – you see, she had a grandson and a daughter to try and save.  We, as a family, all incurred enormous debt that will take us years to recover from.  But we will recover.  We would give it all for one more smile and one more little grasp by that tiny fist.

 

In Liam’s memory, we have started a foundation to help other families faced with critically or chronically ill children.  We hope to educate about heart disease and organ donation.  We hope the foundation will keep his memory alive and inspire others to fight like Liam – and Pierce and Glory, and so many others.

Thank you for reading about Liam –I love you Liam Lyon, Aunt Susan

 

 

01 02 12

Bailey's Story

When My beautiful friend told me her story I knew that it needed to be told again and again. It is proof of what a little seed of hope can grow into.....

Only twice in my life have I ever had dreams about my father. He passed away when I was three. I remember waking up from the strangest dream about him. Like most eight months pregnant women, I woke up to once again waddle to the toilet. Slowly lowering myself onto the toilet I had a gush of water. I was startled by this unexpected gush; it was gushing out with each move I made. I yelled for my husband saying, “Kyle, my water just broke! This is it.” He rushed into the bathroom sliding in the amniotic fluid and slid into the wall. I started laughing hysterically-- it was like something from out of the movies. As I laughed, more and more water was rushing onto the floor. I stood in the bath tub barking out orders to my wide-eyed hubby. Thank goodness our bags were already packed from a labor scare the day before.

We arrived to the hospital where the nurses checked me and tested the fluid to make sure it was amniotic fluid. (So silly and a waste of time, I thought. This was my third baby and I knew what water breaking felt like). However, I was only one cm dilated, had very small contractions, and our sweet baby girl was still moving around. Hours later and still I was progressing slowly.  My doctor came in all smiles. She gave me the decision that would forever change my life. She said I could stay in our local hospital and deliver our baby, go to a bigger hospital locally, or to Dallas. Her reasoning was that I was progressing slowly and if I needed anesthesia for any reason they would have to call the “on call doctor”. It could take him to an hour to get there. I talked it over with my husband and we both agreed to go to Dallas.  We wanted to be so careful and I wanted the best for our little girl.  We took the ambulance to Dallas and got into our room. The meds where started, pushing me deep into labor and then I had the wonderful epidural. My mother and my best friend had arrived and were patiently awaiting Bailey’s arrival.
After around 36 hours of labor I started pushing. Our doctor stopped mid push to tell me Bailey’s head was tilted and she would need to use forceps to pull her out. She explained that if we didn’t I would need a C-section. As she proceeded to pull Bailey and turn her, she said “I see hair.” I pushed with all I had and out Bailey came. The doctor laid my baby onto my chest and all we heard was silence. Bailey wasn’t crying and I touched the top of her hair and said in a panic, “She is not crying!” That is when everything went crazy.

Someone grabbed my baby from me. A wave of people flooded my room. A tall grey-haired doctor began working on my beautiful, lifeless baby. He pumped her chest and from time to time he said breath. I counted each time he said breath. It was a total of three. I looked to my family in the room and saw sheer terror on their faces. Everyone was so still. No tears, no words, no comfort. The OB was still between my legs working and was not looking towards my baby. This is not how it was supposed to be. My husband was supposed to be cutting the cord. I was supposed to be counting her fingers and toes. Instead they were rushing her from the room. My husband was close behind. I’m not at all sure where time went from there.
I know my best friend left, my mother was with me, and my husband was not. I think someone must have told me they were taking my baby to the Children’s hospital next door to be placed on a cooling blanket. I remember the nurses not looking me in the eyes. I remember the room they put me in. I don’t remember time. I felt like I was watching myself from some other place; this wasn’t my life. This was a nightmare.

All the while my husband was dealing with the worst moment of his life all alone. He told me later how Bailey flat lined on the way to the hospital. This was the second time our daughter died.

Some women were parked in the medic bay and the ambulance took off their mirror. They were yelling at the ambulance and my husband yelled “That’s my daughter in there!” He sat outside of the ER room where doctors and medical staff worked diligently on Bailey. People kneeled down in front of him checking on him. I’m sure he was in a hellish daze; the Chaplin was brought down to comfort him.

A doctor finally came and spoke to my husband. She explained that Bailey had suffered a severe hypoxic event. It happens to 1 out of a 1000 babies. There is no reason for her to be basically born dead. She had a heartbeat all through labor. The moment she came out, she stopped breathing. A child that is born with lack of oxygen suffers a condition called Hypoxic-Ischemic Encephalopathy (HIE).  The doctor told my husband about how that lack of oxygen most definitely will have affected her brain. She also said that Bailey had a 50/50 chance of making it that night. My husband asked her about placing her on the cooling blanket and what that meant. The doctor asked what time Bailey was born. Kyle said almost 5 and half hours ago. Knowing that a baby needs to be put on the cooling blanket by 6 hours of age to reduce brain damage up to 20%, the doctor rushed out to get our baby started. The cooling blanket basically puts a baby into hypothermia thereby reducing the damage and helping prevent cells from dying. The child’s core temperature is lowered to between 33.5 and 35 degrees Celsius from the normal temperature of 37 degrees. This process takes 72 hours.

I eagerly awaited my husband. I’m not sure what happened in those six hours my husband was away. I don’t remember if I even spoke a word. I was in complete panic and terror. When my husband finally returned, he was pale and frail looking. He was forever changed. He explained to me what all had happened. We were in shock; all we had was each other in this horrific moment. I melted into him; I thought about what a good man he was and how all I wanted was to share our love with our child, how he deserved to be a father. I was hysterical on the inside. I’ll never forget that at the moment I was questioning internally Why, God, is this happening?, a nurse walked into my room. She started asking if I was okay. I told her how our baby was only given a 50% chance of living through the night. She said “You know what? You got yourself a praying nurse tonight. If you would like we can pray together.” My husband, the nurse, and I formed a circle of hands and she prayed aloud. She prayed that God’s will would be done and prayed for strength for Kyle and me. What I wanted to do was fall on my knees and pray for my baby-- the baby I had carried and dreamed of for the past 8 months. The baby whose room my dad had painted the perfect shade of pink. Her little swing that I put together and the crib her big brother helped build.

Each hour that we hadn’t received a phone call was another hour my baby was alive. That was the longest night of my life. I was still feeling the effects of the meds and the exhaustion of labor. I think I slept; I’m really not sure. What I am sure of is we didn’t receive a phone call that night. By the next morning, Bailey was off all heart medications and had experienced no seizures. Seizures go hand in hand with brain damage. They can be a side effect of brain damage and they can cause more damage as well. I felt that tiny seed of hope grow. My husband went to visit Bailey as did as our family. I got to see pictures of my beautiful baby girl. A nurse had put a crocheted pink flower on the side of her mask. She looked like a little girl. She had round chubby cheeks and her daddy’s toes. Her little body was bruised from the CPR and she was intubated for safety. She was on room air which was wonderful. I got to watch videos of her daddy talking to her. She would move her feet when she heard his voice, just like when he would talk to her in my tummy.

I couldn’t even process the emotions I had. Where to start?  I was angry that I wasn’t with her, happy she was here, jealous others where with her, sad, so so sad, exhausted, and fearful. I tried to just make it, tried to push myself to get up and walk. I started pumping milk for Bailey. The only thing I could do for my precious sick baby was make her milk.

Doctors came and went. The doctor that delivered Bailey came to see me. She had a few others with her in a team. I’m guessing she must have needed support as well. She came and held my hand and told me she was a realist and that something would be wrong with Bailey due to her time without oxygen. I just nodded and thanked her for doing all she could. I just wanted to be alone. Every moment I had to talk to someone was a moment I was not praying and begging God for my daughter’s life.

Nothing else mattered but my endless rambling prayers and making milk. It was day two, the day I would get to meet my baby. I still had the IV in my arm as my mother-in-law supported my shaky body down the long stretch of the hospital. It was a beautiful hospital just for children, filled with bright colors, butterflies, and twinkling lights that looked like stars. It was the longest walk of my life. I wanted to run to Bailey. We went through the security of the NICU. Walking through the automatic doors, the first bed on the left was Bailey’s. I turned the corner and there she was. She had her little arm sticking straight up in the air and it looked like she was waving. My mother-in-law gasped and said, “Look, she is waving!” Inside the little bed was my sweet baby.

She had tubes going everywhere. Machines beeped and flashed. I can’t describe how she looked after having two rounds of CPR. Her head was scabbed and shaved on each side where they tried to insert an IV. My heart was beating hard as I got to touch her little hand. The soft baby skin of her hand was so perfect. I got to count her little fingers and toes. I was so afraid to breathe and time was racing by. My hospital had only given me two hours to go visit my Bailey. It’s the most horrific feeling walking away from your baby. There is nothing right about it. Every part of my body ached for her. I shouldn’t be walking out the door. Bailey should be with me, nursing and sleeping. My hospital room should be full of balloons and flowers. People should be calling and coming to visit, not me heading empty back to my hospital.

This night I screamed and cried for my baby. My body shook as I cried hysterically. My IV had blown and the nurses wanted to put a new one in. That seemed so minute compared to what was happening to my baby. I was angry. So I prayed. This was the night I started meditation. I would picture in my head God’s light healing my baby. If I couldn’t be with her I would send my constant prayers.

The next day Bailey was taken off the cooling blanket and the vent. I got to hear her little cry. The most natural thing, it was what she was supposed to be doing!  Crying!  Her little face and body had started to swell from all the medications and her color was getting a bit darker. She was urinating blood and her lab work was starting to look bad. Her doctor had an EEG done on her little brain. It showed normal brain activity and no seizures! My husband and I were so excited. The doctor gave us a sad look and said, “Yes, this is good but we are not out of the woods. I have a feeling that her MRI will not be good, and I’m sure she will start to have seizures.”

Our little seed of hope and happiness was quickly dashed away by the harsh words. I prayed. Bailey soon got worse. We had a meeting over her MRI. They told us how damaged her brain was. That she would most definitely have cerebral palsy and seizures, that she would not be “normal,” and that she could still die at any time. That night my husband basically had to carry me out to the car. My legs felt like Jell-O. This nightmare had somehow become hell. As my sweet husband wrapped his arms around me and held me, I felt a hand on my shoulder. It was the doctor. He helped my husband get me to the car. He said “Pray.” God had sent him to help my husband in that moment to pick me up. He had been the one to deliver the news, but God had sent him to remind me it wasn’t up to the doctor. Bailey was in God’s hands. The doctor urged me to hold Bailey. I didn’t know that I could. I was afraid it would stress her out. He said “What she needs is to be held by her mother. There is nothing better.”

The thought of holding my baby got me through that night. It seems that when you have an extremely sick child it’s the little moments that keep you going. I learned to live for those moments.  Though we may have been in the hospital, in my mind we were home. I got to hold my sweet baby. Finally I kissed her little forehead. We could see the dimples in her shoulder blades. We debated over her nose and her lips. I had never been more in love with my husband than in that moment. We were a family.

Bailey’s lab work continued to get worse. Her liver was failing and possibly her kidneys. Her stomach was possibly dead from the lack of oxygen. We didn’t know because she had only had IV fluids and no milk. Her heart had two holes in it from not taking the initial first breath a baby takes when it is born. When a baby takes that first breath it closes those holes. She was having problems with her white blood cells and clotting. She was receiving blood products and was put back on the vent. Her bilirubin's were extremely high from the liver problems and she was turning neon yellow. One nurse practitioner stated that Bailey was the sickest baby in the NICU. I sat next to her little hospital bed. I prayed. I meditated envisioning God healing each new part of the body her doctors said was failing.

The only bright spot we had was the nurses. Each day a nurse would let us have some little bit of normalcy. My husband got to change a diaper for the first time. I got to pick out Bailey’s socks. We got to suction her nose and check her temperature. Every three hours we had touch time. Though we were helping medically, it gave us a deeper purpose.

Around this time is when we started getting the “Looks”. The staff would try to avoid our gaze or have this pity look on their face with a fake smile. I avoided rounds in the morning. I wanted to hear what was going on just from the nurse, not a whole team of doctors with no bed side manner. Hours and days ticked by.  We became pros at watching the monitors. I held our sweet baby as often as I could. Her little body was so swollen and yellow. I found ways to comfort her by stroking her hair or kissing her forehead. My husband sang to her (sometimes a bit too loud, lol), read to her, and cuddled her. Her blood work got worse; it was possible kidney and liver failure. Her doctor ordered an ammonia test to see basically how fast her cells where dying.

I looked on the internet to find what normal ammonia levels where. I waited patiently, okay, not so patently for the results. The nurse told me the number. I knew before she could tell me that it was in normal range! The test to show how fast she was dying was NORMAL! As I walked to the elevator I ran into her doctor. I was so excited I’m sure I was rambling about the test and how happy I was. She gave me “the look”. My heart went into my throat. She said “Will you be back in her room in about an hour?” I said “Yes, of course.”

An hour later I walked past the nurses’ station. Bailey’s doctor was sitting at the desk. She was crying. I looked down to the floor praying for whatever baby this doctor was so upset about, thinking this couldn’t be my baby. Soon she rounded the corner and entered our little room. I was holding Bailey’s hand and my husband was on the other side of her bed. In that moment I wanted the truth. I didn’t want to continue with this back and forth of info. This is good and this isn’t, but this is okay but maybe this test will show this, blah blah blah. The doctor sat next to me with tears in her eyes. I asked her the question no parent should ever have to ask. Is she dying? Her doctor said “I believe she is.” I asked “Is she in pain?” The doctor said, “I think she is suffering and it would be the humane thing to take her off life support.” I couldn’t breathe. I felt nauseated. I cried looking at my baby sleeping so sweetly even with the monitors beeping. The doctor said that liver failure is a horrible death. She told me how she had treated other patients in this situation and there wasn’t a good outcome, and that since Bailey had brain damage she would never qualify for a liver transplant.

My husband and I wept and held each other. We took turns falling apart and being strong. We made the calls for anyone who wanted to meet Bailey that this would be her last weekend with us. Our friends and family came. Everyone, including us, spent as much time with her as possible in, what we thought, would have been her last 2 days on earth. Bailey’s nurses helped us make foot prints and hand prints. It was such a normal thing to be doing with your baby. My husband decided he would get a dedication tattoo of her prints on his arm so she would always be with him. I was empty. I was dying on the inside. I couldn’t eat. I stopped pumping milk. Why should I pump anymore? She would never drink it. I struggled with every breath. This isn’t real. This isn’t right. Nothing will ever be right ever again.

Sunday night we sat in Bailey’s room watching her every movement. The night nurse was talking to us about our decisions. I wanted to know how it would all happen. She explained to me they would put us in a private room. They would make her comfy on meds and let her pass. We could bring her little clothes and her blankets with her sweet name Bailey Faith monogrammed on them. We could give her a real bath and put lotion on her skin. The nurse said if I wanted I could hold Bailey as she passed. I told the nurse that I brought Bailey into this world and that I would hold her as she left. I know it sounds odd but the thought of dressing her and bathing her gave me such comfort. I could enjoy my baby for a minute. We could take pictures of her sweet face not covered by the vent. We would be able to kiss her and smell her hair. We would be able to kiss her little toes and cuddle her little body.

Our mothers decided they would be there as well. I told them I completely understood if they couldn’t be. I would never ask anyone to witness what we were about to. The nurse called for funeral pamphlets to be delivered by the morning.

Monday morning we were to have our “Care” meeting. I hate that they named those meetings “Care”. I woke up from a restless night of sobbing and nightmares. Kyle called my original OB and had her call in a prescription for me in case I needed to be calmed. I have never screamed in my head before. I screamed at God in my head! I screamed that this wasn’t what was supposed to be happening. This wasn’t right. We were good people. My husband is an amazing step dad and husband. I wanted to give him a healthy baby-- not any baby, THIS baby. I couldn’t understand how the world could still be going on as normal as could be while this tragedy was happening. How could people be laughing and smiling when this was happening!?  I was empty. I had nothing to say to anyone. I called the hospital to check on how Bailey’s night had gone. One of our normal nurses answered. Instead of her saying the normal that Bailey was “ok”, she said “You need to be here for rounds this morning. How fast can you get here?” I told her we were on our way.

Kyle, his mom, and I walked into Bailey’s room right as the cluster of doctors rounded the corner. They went through their normal routine of her list of complications and birth. Then they went to her blood work. My mother-in-law was holding Bailey. We where half listening to the doctors when we heard the words I will never forget. Her liver has improved! The doctors all looked up from their computers to see our reactions. They confirmed it again and again and probably again. Her liver had started to heal itself over the weekend! The same doctor who advised on Friday to take her off life support stated that she had never changed her mind in her entire career until now.

That moment forward we could see the miracle unfolding. We all three sat there staring at each other for what seemed like hours. This is our miracle. The charge nurse came to us and told us she had only witnessed one other miracle like this in 20 years. After the liver starts to heal it rarely goes back. From that day forward Bailey was in control. She healed her liver. She came off the vent. She started eating and then pooping! Her stomach was working. She started opening her eyes. Bailey would cry and wanted to be held. All the things a healthy baby would do. Bailey did. She could track things with her eyes. She held our fingers. We could smile again.

So, even though we were told there is a chance she would live, which we were so thankful for, Bailey’s doctors still gave us the constant doom’s day speeches about how she would have severe mental issues and/or physical disabilities. At around week 6 a doctor measured her head and it hadn’t grown a centimeter. He said she would never walk, talk, eat on her own, would basically be in a vegetative state, and would be in a wheel chair. However, over the next two days her head grew! She started slapping at toys! So we bought more and more toys, anything that could stimulate her brain. I will never forget in our MRI meeting the doctors kept telling us how horrible the news of her brain was. All we asked was “Will she live?” The head doctor said “Well yes.” My husband said “That’s all we need to know.”

The doctor didn’t think we understood, but we understood perfectly. When you have been faced with a life without a child, things like normal tests results don’t matter if they are livable. My husband told the doctor that it was okay: he would be the biggest cheerleader they had ever seen at the Special Olympics! I still at times envision him in a skirt and pompoms.

Ever since the decision from week 2 not to take her off life support, and to give her a chance to live, her organs kept improving.  Lab results, while still in a cautious state, started to slowly improve, which made doctors and everyone agree that she really was going to survive. Slowly, over the course of being in the NICU from week 2 to week 7, medicines to keep her alive started going away, including blood products, nutrition IV’s, and anything else that was keeping her alive. She started feeding on bottles, started receiving physical and occupational therapy in the hospital, and the therapists were blown away by her progress because of what she went through.

Bailey had an NG tube, which is a tube that went from her nose into her stomach. We were advised that it would be best to have a surgical procedure to where there would be a hole made into Bailey’s stomach that a machine would hook onto to. This would feed her. I thought about this and it didn’t seem right. Every time we had given Bailey a chance to do something, she did it. They hadn’t even worked with her on bottle feeding but two times! I understood the risk in both but after her rough start there was no way I wanted to have surgery without giving her a chance. So we started speech therapy. It was slow but she was taking milk. We had a swallow study done and she was drinking perfectly.

Cardiologists started coming into the picture around this time. It was around week 6, and the holes in her heart have not closed. Normally they do by now and after this age don’t close on its own. The doctors thought that we would need to have a surgery done involving a small catheter to close the two holes. A few days later, an ultrasound was preformed. Guess what?!?! One hole had closed itself and the other closing as well.

By week 7, it was agreed by all doctors and therapists that Bailey was healed and recovered enough to go home. I finally got to nest. I went home and washed everything that would stay still long enough to let me clean it.  I rewashed her little pink sheets and footy pj’s. I arranged her toys. It was one of the happiest moments of my entire life, cleaning for Bailey.

Around week 8 Bailey came home. She came home to her two older brothers and her pink room. (She has never slept a night in that room.) Upon discharge nursing was arranged as well as therapists. Nursing came one time to make sure we were comfortable inserting her NG tube into her stomach. Physical therapists came and played with her and watched her. They decided she didn’t need therapy. We thought that when we left the hospital our lives would be constant therapist and doctor appointments. The only therapy she received was speech to help her with bottle feeding. At five months she was completely orally feed. She was discharged from cardiology right away with no more holes in her heart. Her liver is normal, just annual tests. She only has one kidney but as the doctor explained, millions of people walk around every day with only one and don’t even know it. Her kidney is growing with her.

Bailey is now 10 months old. She has met every milestone on time. She crawls and sits. She drinks bottles and eats food. She plays with her toys. Bailey said momma at around 5 months, followed by dada. Now she says baba (for bottle), momo (for no, no) duh duh (for her favorite bath toy, a duck). She has recently started pulling up to her knees and she can push her baby walker. Bailey will walk and she will talk. She knows who her momma and her daddy are. Lol.  I still pray every day but boy, have my prayers changed. We don’t know what the future holds for Bailey but when we go to her doctor appointments, they call her the miracle baby.

 

Writing my daughter’s story was one of the hardest things I have ever had to do. The reason I agreed to write it was to give hope. In our darkest moments I would have given anything for one story of hope. I hope her journey can help not only others going through this but also prove what God’s power can do when we pray.

 

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Genetically Enhanced

Twelve years ago, I woke up early to go to the hospital to have Mighty Z. Like all expectant mothers, I was so excited to meet this sweet angel that I carried inside me for 9 months. The bags were all packed, and Lala (who was two years old at the time) was safely entrusted to my mom and dad. I remember the excitement and anticipation my husband and I shared as we backed out of our driveway, never knowing how much our world would change forever. Labor was typical and uneventful, in fact, when Mighty Z was born, they gave her straight to me. The nurses declared her almost perfect by giving her an abgar score of 9.5.

 

Everyone says that hindsight is 20/20 and they are right. Even right after birth, Mighty Z wanted to fall asleep and would turn gray. I can still hear the nurses saying over and over, “Keep patting her to keep her awake, she needs to cry.” It was less than 3 hours after delivery that Mighty Z made her debut into the Neonatal Intensive Care Unit (NICU).

 

If you have ever graced a NICU’s threshold, then you know how eerily quiet and dark it is. All you hear is the swooshing of ventilators, the beeping of machines and the gurgle of chest tubes. This was all new and scary to me…I had never seen a person, let alone a baby, intubated (the  placement of a flexible plastic tube into the trachea (windpipe) to maintain an open airway). All of a sudden, here was my baby, lying in this foreign place, with a tube going in her mouth and down her throat. The devastation, bewilderment, lack of control, and horror was immense.

 

That night as I lay in my hospital room on the labor and delivery floor while my newborn baby was in NICU, the nurses came and knocked on my door. “Mrs., your baby needs to be fed” the nurse said as she opened my door. With confusion and excitement, I popped right up and overheard another nurse say “You got the wrong room, this one’s baby is dying.” What?! My baby? The tears flowed as my mother (who stayed the night with me) held me as sat up in my hospital bed and wept tears from my soul. The tears of pain that one never knows they could ever feel and the ache of the heart  was beyond description. My mother sat on the bed with me,gently rocking me until the there were no more tears that would flow,only the dry retching sobs that racked my body. No words were spoken by me or my mother that night. What does one say to another about your baby dying? Did my mother cry? I don’t know, I am sure she did, but I was so caught up in my own pain and grief that I couldn’t spare a thought to what was going on around me. I remember the dark cold of a hospital bed and the thoughts of having to bury my baby.

 

The next day the doctors told me that Mighty Z was fine and that the nurses had made a mistake. They told me Mighty Z was healthy.  But over the next7-14 days, this would just become a bad memory. After two weeks, the doctors told me Mighty Z was winning “stump the doctor.”  A game no parent wants to play. They had no idea why Mighty Z wouldn’t breathe. The Director of the unit said that he thought it was something called CCHS (Congenital Central Hypoventilation Syndrome), but I was more likely to win the lotto then to have a child with this disease. Only two or three cases of CCHS are diagnosed each year.

 

After three long years, it was finally confirmed that Mighty Z did have CCHS. By then, I had come to accept (as much as you can) having a baby with a rare disease who is permanently trached and placed on life support machines every night to keep her alive

 I have learned so much since Mighty Z was born. Some things I have learned from Mighty Z. Other things I have learned from my husband, from Lala and from the many, many people who have touched my life over the past twelve years

 Lala has taught me to look at things from a different perspective, or with a different attitude. Once when she was little, about 4 or 5, Lala said “I am so glad Mighty Z was born with this disease.” I was speechless and my immediate response was “What?!! Why?!” Lala took my hand and said that if Mighty Z hadn’t been born with CCHS, she wouldn’t be the Mighty Z we have and Lala was glad to have met this Mighty Z.

More recently, Lala has taught me how differently we view this disease.  In talking with one of Lala’s friends who was spending the night, Lala was trying to explain why Mighty Z needed to be on a life support machine. Clearly the friend wasn’t getting it, so Lala simply said that “Mighty Z was genetically enhanced.” And you know what? Mighty Z is…

By the way, we always buy lotto tickets, but have never won.  Then again, maybe we have.

 

 Edited by Linda Kruger
                                                                           Miracles do happen

                                                   Zoe  January 22, 2001 

Zoe January 22,2013      

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