Change

I've never been very good with change.  I like my world to be in order with routine being very comforting.  Once I had kids, I realized that this was impossible.  Once I had Noah, I realized that my nice, comfortable world had become like a tornado.  I learned how to be flexible.  I learned to "go with the flow".  I learned things constantly change.  I don't necessarily like it but that's life. 

We have gone through many changes over the years.  This year, our big change is Noah going to a new school.  (I will post more on this later).  In the past few years, the biggest medical changes were a new vent, a new pediatrician,  and a new DME company.  A few years ago, one of the doctors who diagnosed him left for Seattle.  We were not happy but we still had our other two doctors and things were fine.  Last year, the head of Pulmonary, the doctor who helped diagnose Noah, the doctor who comforted me while giving the diagnosis, the doctor who assured me Noah would be fine, the doctor who got him home before Christmas, the doctor I trusted to keep anesthesia in line and do his bronchs,  LEFT.  Now, we only have one doctor who I completely trust.  Fortunately, we now only do the bronchs every other year so Noah will not have one this year.  This will give us a year to figure out what to do, as I do not trust anesthesia at all. 

Another big change is that the trusted RT, who is very good at his job, left the hospital.  He still continues to work with our children's hospital but he's not there every day.  At the last clinic, I was also told that there had been big changes to the DME company.  The two people who ordered Noah's supplies and made sure we had what we needed, left the company.  So now we have all new people at the DME, all new RTs at the hospital and we are left with only one doctor with CCHS knowledge.  My anxiety is high. 

This week, Noah had his annual sleep study, where they check his ventilator settings.  Usually, we would do the study, stay in the morning until the doctor (the doctor who left!) came around and made ventilator changes if needed. Now, a doctor doesn't come around.  We leave, wait for the study to be read and they call us with any changes. 

I got the call yesterday.  An unknown (to us) pulmonary doctor read the results and wants to change Noah's settings from 20 to 14.  (a 6 point jump).  Is this doctor familiar with CCHS?  I have no idea.  Most of the doctors I have found try to lump him in with normal ventilator patients like kids with CF or SMA.  Regardless, I'm questioning such a large change. 

The other issue is that I question the validity of our CO2 monitor.  These monitors are very rare with home use.  Most DMEs have not had any experience with them.  We were fortunate to get ours upon Noah's discharge, although there was an issue where the doctors were thinking about not releasing him from the hospital until we got the machine.  Thank goodness they let him go because it took several months after discharge to get the machine.   We used it for a year.   Then, Noah became sick.  We kept checking his co2 and the machine kept saying it was high but not dangerously so.  Using my instincts, I took him to the hospital.  They checked his co2 and it was so high they admitted him.  Our co2 machine had failed.  That was the first time I realized we cant fully trust these machines.  I made a call to the DME and they had to scramble around to get us another machine.  We came home, used the machine and all was well.  About a year and a half later, the machine started acting up and I called the DME.  They informed me it should be calibrated but they couldn't do it because they were only suppose to supply the machine, not work on them.  They had no idea what to do.  Eventually, over the course of a year they got someone from the company who makes the machine to come to the house.  He recalibrated it and said it was reading 20 points lower than it was suppose to be reading.  So for over a year, when his co2 said it was at 30, it was really at 50.  (When it hits 50, he is suppose to be on the vent 24/7 until his numbers come down.  See how important this machine is??? Its the second most important piece, with the ventilator being first.  We use the numbers from this machine to adjust his breath rate and pressure rate on the ventilator.  When co2 is high, we bump him up and give him extra ventilation). After I found this out, I was livid.  I informed them this was his life on the line and they needed to step it up. 

Not much really changed.  We continued to use the machine, although I didn't fully trust the readings.  I used Noah as a gauge.  I knew if he had a headache, acted more tired than usual and more lethargic, that his co@ could be up.  The manager of the DME was able to get a calibration machine from the manufacturer and he came to the house once more to calibrate it. 

Over the course of the next few years, the manager left the DME.  The one person who knew anything about the co2 machine was gone.  We have very few options for DMEs.  Most do not do ventilators.   Some do not take our insurance.  We were stuck.  

Flash forward to two years ago.  Shortly after our move to the new house, we received a call from the DME that they were discontinuing our service.  They were no longer going to have ventilators and they were no longer doing pediatric patients.  In fact, they were bought out by another company altogether and were becoming a new company.  They gave us a month to find a new provider and said they were going to come pick the vent up.

Our favorite RT, (the one who left) gave us the contact of our current DME. I called them, they came out with our new ventilator and setup.  Miraculously, they were much better than our old DME.  We were able to get a second ventilator, a better pulse ox and supplies were always on time.  Most times, the supplies were correct but if they weren't, they sent what we needed the next day.  Things were not backordered anymore and we were able to get saline bullets for the first time in years. 

As for the co2 monitor, they informed us that we owned the one we had so we should just keep it and use it.  I mentioned it at vent clinic every time we went but nothing was ever done. 

Flash forward to present day.  With the breath rate being so low, I need to be able to make sure his co2 doesn't climb too high.  Our favorite RT now works for our DME company.  This part is good.  The bad part is that when he called me yesterday about the monitor he informed me that he had moved to Gulf Shores.  So now, two of our 3 doctors and our RT who knows about CCHS are gone.
As for the co2 monitor, he ordered new ones.   He informed me that the downside is that even he does not know how to use them.  They are suppose to be mailing us one and we will have to figure out how to use it.  He informed me that the supplies that go with this machine (tubing, water traps, etc) should be sent every month with supplies.  This does not give me much comfort in the fact that they don't know how to use the machine and now he's 5 hours away and can't come help us.  He did tell me to call if I needed, which I most definitely will. 

So, I am left with a doctor I don't know making changes to  Noah's settings and a new machine that nobody knows how to work.  I am strong and I will figure this out.  It's so frustrating though.  Just once I would like for everything fall into place and have no complications.  It's beyond exhausting to deal with these machines, keep Noah alive, try to live as normal a life as possible, deal with a medical community that doesn't understand and watch trusted doctors and RTs leave. 

Such is the life of a rare disease.  I will update about the co2 machine once we receive it.

To be continued.....

A Better Way

The CCHS community is in mourning now.  A young mother with two small children had CCHS.  She somehow went to sleep without hooking herself up to her ventilator and passed away. I did not know her and had no interactions with her but somehow it has hit me hard.  I can't imagine the pain her family is going through. 

We work so hard when our kids are young.  We fight for services, go through endless hours of lack of sleep, become nurses when we have no formal training, work tirelessly to keep our kids healthy and alive, even to the point of neglecting ourselves.  Then they begin to grow up.  We start letting go a little at a time.  We send them to school.  We allow them to go places without us.  They grow up.  Giving a vent dependent child their independence is extremely difficult.  I know that one day I will have to let Noah go.  He will leave our home and have his own home.  This is the most terrifying thing.  When our CCHS kids live with us, we control when they hook themselves up, we can hear the alarms and respond while they are sleeping, we drive them around in our cars.  What happens when they grow up?  They leave the house and are responsible for hooking themselves up at night, they are responsible for hearing (or not hearing) their alarms and responding, they are responsible for driving themselves alone.  What happens if they fall asleep watching tv?  or studying? What happens if they get in their car, have an accident and are knocked unconscious?  All of us, at one time or another, have fallen asleep, whether it was during a movie, studying, or even when we weren't feeling 100%.  Our kids do not have this luxury.  One small mistake of not hooking themselves up.  One small car accident.  This could cause them to lose their lives. 

As a fellow CCHS mom said, there has got to be a better way.  Relying on these machines to live is terrifying.  Machines fail.  People make mistakes and neglect to hook themselves up.  Our kids pay for it with their lives.  This is what scares us CCHS parents.  We need a cure.  We need a better solution.  We need to find a way to make our kids lives better. 

RIP Lauren.  May your family and friends find comfort in this difficult time.  May your parents know that they did everything they could do for you.  They are the heroes in that they let you live your life the way you wanted to live.  They let you grow up.  God bless you and your family. 

As for the rest of the CCHS family, we continue to fight.  We continue to look for answers.  We continue to look for a better way. 

(Special thanks to CCHS mom S. Yang for the inspiration for this blog and the blog title)

The Ventilator Change

During the month of June, Noah was admitted to the hospital to change over from the LTV 950 ventilator to the trilogy ventilator.  This is our experience with the changeover.


On June 29, 2015 Noah was admitted to the hospital to receive a new ventilator.  During this time, he also received his annual sleep study, his annual holtor monitoring and his annual neuroblastoma check.  This was a very interesting hospitalization because he was not sick.  During the day, he was allowed to roam the hospital and the nurses only checked in with us a few times since this was not the usual hospitalization.   Ventilator training was extremely easy since we already knew how to work a ventilator (a more complicated ventilator).  Going from the LTV to the Trilogy was an extremely easy transition.  I realized very quickly that the Trilogy is an easier machine to work and also easier to transport places. 

 

 

 

Here is a picture for comparison.  The Trilogy is on the left and the LTV 950 is on the right.  The Trilogy is much lighter.  It has a handle at the top for easy transport.  It is all digital.  There are 4 buttons on the front.  One is the power button, one is the silence alarm button and the other 3 are used to access the menu.  There is the menu button in the middle and an up and down button on either side that is used to scroll through the menu.  The LTV has many more buttons and menus that are hidden and hard to find. With the Trilogy, you just scroll through the options, hit select, make whatever changes are needed and then hit the ok button to accept the changes.  It's extremely easy to work and change the settings. 

 

 

 

Here is a comparison of the power cords.  The Trilogy is on the left and the LTV is on the right.  The LTV power cord was very heavy and bulky.  The Trilogy cord is just the same as a laptop computer cord and it can be bought at any computer store. 

 

Here is the battery comparison.  Trilogy is on the left and LTV is on the right.  The Trilogy battery stays in the back of the ventilator so it is always charged.  The LTV battery is a lot bigger and heavier and needs its own power cord to charge. 

 

 

 

 

 



 

 

 

 

The circuits are different as well.  Trilogy is on the left and LTV is on the right.  The Trilogy has one tube in the circuit while the LTV has 2, one of which is the PEEP valve.  The PEEP is built in on the Trilogy.  When setting up the circuits on the LTV, we always had to do a leak test.  There is no leak test with the Trilogy. 

 

 

As you can plainly see, the Trilogy is lighter, easier to use, and more easily portable.  We were able to eliminate a huge power cord, a ventilator stand (the Trilogy is flat and doesn't  need a stand), extra batteries, cords for the extra batteries and a long bulky circuit.  Another huge plus is that there are no unnecessary disc sense alarms.  Before with the LTV, the circuit had to be placed a certain way.  If it were turned upside down, then it would collect water and alarm.  This does not happen with the Trilogy.  There is also no autocycling.  Over the course of the night, water would collect in the LTV circuit, causing Noah to breathe very fast and pulselike.  We would have to get up several times a night and drain the water.  This does not happen with the Trilogy.  We have less vent alarms overall.  The only major issue was that Noah had a pretty big leak around his trach.  We compensated for this with the LTV by turning off the low min volume alarm.  However, we can't do that with the Trilogy because this is the main alarm.  Instead, we upsized his trach from a 3.5 to a 4 and we lowered the alarm rate.  This helped tremendously.  He is still able to talk well with the larger trach. 

 

The sleep study at the hospital was very awkward. This was done in his room.  The sleep technician sat beside his bed the whole night.  Neither I nor Noah got much sleep.  She sat there with her little light and her computer.  We heard her typing, shuffling papers, moving around in her chair, and her cell phone vibrating.  In addition to this, there were people in and out of the room all night.  The next day, the RT informed us that the sleep study wasn't "great".  I told him of course it wasn't because we did not get any sleep.  Noah is not use to having someone sit beside his bed all night.  I'm so glad we never had nursing because this would have driven us nuts night after night.  Regardless, they were able to get some numbers.  We increased his breath rate a little but he basically has the same settings that he did with the LTV.

 

After one night in the hospital, Noah was released.  The first night at home was interesting.  I was so accustomed to the louder noise of the LTV.  The Trilogy is much quieter.  It took a few nights to adjust to the quiet.  He alarmed quite a bit so I adjusted the alarms.  The next night was much better. 

 

 

Overall, the changeover from the Trilogy to the LTV was one of the best changes we have made.  The only negatives that I see are that the Trilogy goes through a lot more water.  We would go 3 days using one water bag with the LTV.  Now, we pretty much go through a bag of water a day.  Also, the Trilogy has a whisper valve that the LTV does not have.  The valve is near his chest.  I find that he covers it up with blankets or his bear, causing it to alarm.  I think it would work better if the valve was located towards the bottom of the circuit, similar to where the PEEP valve was on the LTV.  As I stated above, the quietness of the Trilogy was also a small negative but we have adjusted to it now. 

 

I highly recommend the Trilogy over the LTV.  It is more portable, easier to use and much quieter.  Our next step is to transition from the trach to a mask.  This transition will probably take a lot longer or even not at all.  Noah hates masks on his face.  I firmly believe it's because of the "smelly masks" they use for the bronchoscopies.  He doesn't even like Halloween masks on his face.  We are not going to push the issue.  As long as he is happy with his trach then that's what he will use.  We definitely want him to have some control over his care.  Maybe one day, there will even be a smaller, better ventilator than the Trilogy. 

 

 

Bye Bye LTV.  Thanks for keeping him alive for 5 years. 



 

 

 

 

 



 

We are the Weeds

I will never forget the news I received in June 2009.  I was hugely pregnant with Noah.  We had just completed our annual one week vacation at the beach and were returning home when my phone indicated that I had an email.  Being bored while Chris drove home, I opened my email and my heart sank.  The email was from our good friend Kevin.  He explained that he had gotten the news from the doctor that he had been diagnosed with cancer.  He went on to explain the events leading up to his diagnosis and explained the prognosis,  which was good.  We were shocked and saddened.   The Weeds (see my explanation below) rallied around him and began sending messages of love and encouragement. 

Shortly after his diagnosis, Noah was born.  Unfortunately, we found ourselves  dealing with our own family health crisis.  The Weeds rallied around us this time and brought meals, love and encouragement.  One day at church, we were presented with a special gift for Noah.  Kevin and his family had a shirt made.  On the front, were the words The Mighty Noah and on the back were the words Trach This.  Kevin had given Noah his special nickname and his first trach this t shirt.  Throughout the whole 4 months Noah was in the hospital, Kevin constantly asked about him.  He was always concerned with his progress and when most people's interest was only polite, Kevin's was genuine.  When finding out about CCHS he asked us so many questions.  Later, when Noah was released from the hospital and we began all of his therapies and had all of his swallow studies, Kevin wanted to know all about it and seemed genuinely interested.  He didn't just listen.  He asked questions and seemed eager to learn about CCHS. 

Noah's first outing after being released from the hospital was our annual Weeds Christmas party.  Kevin was so excited to see Noah in person for the first time.  He held him and talked to him.  Throughout Noah's life, Kevin was there, commenting, showing interest and loving Noah. 

Flash forward 6 years later and we are attending the church for Kevin's memorial.  There was much sadness but in the midst, much happiness for the fact that we had been his friend.  He will always be remembered as a fighter, like the Mighty Noah.  His love for his family was deep.   His love for his friends was evident.  He will always be one of my favorite people.  One of my most favorite memories of him was shortly after Noah was born.  I was in the midst of travelling to the hospital twice a week for Noah's therapy and had many endless sleepless nights.  Our friends were still there but they didn't really ask us to help with anything for fear of intruding.   I was removed from a committee at church, which was fine and I know it was meant as a kind gesture to help us.  But, it made me feel somewhat isolated and not as useful as I had previously been.  During this time, Kevin asked me to make dinner for his family.  His wife was having some kind of procedure and he wanted dinner for his girls.  I was so excited.  Yes, it was a pain to take Noah as an infant to the store and get the stuff, come home, and make it.  But it was the best feeling ever.   Someone needed me to do something and it made me feel "normal" again.  Kevin did not let Noah's condition stop him from including us.   I will forever be grateful to him for that. 

Kevin was always there with a ready hug and his big smile.  Sure he could have a potty mouth and he was very strong in his opinions but he was one of the good guys.  He leaves behind a whole community of mourners.  His wife and his 3 young daughters will certainly feel his loss more than anyone. But looking around the church at all the people paying their respects shows the type of man he was and how much he was loved.  I saw a whole row of his coworkers, I saw former college class kids that were now grown up adults (Kevin taught a college age Sunday School class), I saw youth that were now grown (he was also the Youth Minister for several years), I saw older church members, I saw rows full of the girl's soccer team who had come to pay their respects.  People of all ages were there, remembering him and celebrating him. 

I sincerely hope he realized how much he was loved.  I deeply regret that we didn't spend more time together.  I think my husband said it best:

Father, Husband, Son, Musician, Follower of God, Bozo the Clown, Jesus Impersonator, Blogger, Advocate, Athlete, Fighter, Runner, Fantasy Football god, Manager, Youth Director, Leader, Football Fan, McRib Lover, Teacher... The list goes on but I am most glad that to me he was always a Friend

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Kevin and The Mighty Noah







Kevin had a blog.  Below is my all time favorite blog that he wrote.  The whole blog can be found at

http://kevinmichaelokelley.blogspot.com/2009/12/color-of-urine-2009-year-in-review.html

My favorite passage that he wrote is this:

i am not very well versed on being the victim of a curse. perhaps, you don't know that you are, in fact, cursed until you come out the other side. let's take a look at certain proverbial stones that struck the heads of the weeds class in 2009.

 cancer.

the death of a husband/father/friend.

the celebration of a newborn child tempered by the realization that something is amiss.

the passing of the mother of one of our emeritus members.

why did all of this happen to us? was it because we didn't get along very well with the previous pastor and he has used his black magic, upon leaving, to ruin our lives? well, that's my theory, but i am rarely (and by "rarely" i mean usually) right about anything.

were we just unlucky? maybe in some terms. in others, though...

i lost a kidney, but not my life.

our class was blessed with healthy twins and a fighter in the mighty noah that will make all of us, most especially his incredible parents, better human beings.

one of us was a serviceable lay leader.

one of us rejoined our church's staff.

one of us will manage our facility with a strong, yet humble, hand.

one of us (with the help of the rest of us) will always make vbs rock even if she says this year is her last year.

one of us is now a city councilperson and can get me free stuff (oh yeah, and change her church AND her city for the better)

one of us continues to make our daycare a place worthy of a waiting list.

one of us championed our children, challenged our council and then led the way by shepherding our many faces of our future, herself.

one of us will bring our worship technology into the current millenia.

one of us will set an example for all our of church's mothers through the trials she has and will continue to overcome at home.

one of us, with his "questions", got this ball rolling.

were we cursed after june? as far as this blog was concerned, um, yes. absolutely.

in reality, crappy things happened, but lessons in perspective through the victories that we enjoyed together will forge, for us, a brighter tomorrow. that's a promise.

good riddance, 2009. don't let propaghandi hit you on the way out. because they will hit you. hit you in the face with my best record of the year.

2009...

the end of my world as i knew it.



Our Sunday School class is called the Weeds.  Weeds are strong and thrive even in harsh conditions.  Weeds are scattered everywhere.  Weeds are beautiful in their own way.  I think this is a wonderful way to describe Kevin.  Even though he was facing a terminal illness, he handled it with bravery.  His wife, Sarah, is so strong and stood by him through it all. Rest in peace my dear friend.  Know that your girls will always have someone to go to if they need it. 

To Tanya and Donald, Brad and Kathy, Deborah, Kim, Kevin and Sarah, and Chris and myself,  Donna, (and even Katie and Chris later on).  We will always be the Weeds.  May we honor Kevin's memory, love and support his family and live our life to the fullest until we meet him again.  #ftcs. 

This Gets Easier---Or Does It?

When Noah was first diagnosed with CCHS I spoke with several CCHS parents and they all told me one thing--it gets easier.  I really doubted them but now I understand why they told me that. 

Noah's first year was filled with appointments.  Twice a week I loaded him and his equipment (no nurse available to help) by myself and went to his therapy at the hospital.  In addition to this, I also had to take him to all of the normal first year well check ups.  We also had to coordinate his speech therapist, occupational therapist and his physical therapist to come twice a month to our house for home visits.  Looking back, I wonder how I did all that alone.  It was definitely not easy. 

Travelling was also an issue.  We could not go anywhere without the vent.  As an infant, he would fall asleep at any time so we had to make sure his vent was with us, even if it was just a short trip to the store.  Definitely not easy. 

I can see now, that the older he gets the easier it can be.  We no longer pack the vent up to go places around town.  He no longer has the home therapies and we do not frequent the hospital as often.  In this respect, it has gotten easier.  But, now we are facing other issues. 

School is a big issue.   Do we keep him in private preschool where I will have to go with him everyday or put him in public where there is a chance that they have no idea how to care for him in an emergency.  I realize that these school nurses are suppose to know what to do but it's hard for me to believe that they can care for him when his condition is so rare.  Even the nurses at Children's Hospital have never heard of CCHS.  They refer to me and ask a lot of questions. So how can a school nurse really know what to do? Plus, the children in his pre K class accept him.   There is no bullying or making fun of him.  I'm sure at some point in the future this will not be the case.  He is going to have to deal with being "different" and I can only hope that he has surrounded himself with good friends and not care what anyone else thinks.   In this respect, I think its harder.   

I know that there are going to be many more issues that arise as he ages.  At some point, he will want to be self sufficient.  How can he do that if he doesn't even hear the alarms going off when he's asleep?  What happens if he's driving and is in an accident where he is knocked out?  What about college?  He's not going to want his mommy there to hook him up every night.

All of these (plus some I probably haven't even thought of) makes me think that it's not necessarily easier as he grows.  I think it gets harder.  I suppose we just take it one day at a time and figure it out as we go along. 

For the NICU Mom

To the NICU mom. I see you. I get it.  5 years ago I was in your shoes.

The day of your child's birth.  It's suppose to be a magical day but instead turns into a nightmare.  One minute you're holding your baby in your arms and the next minute they are wheeling him to the NICU. Some of you don't even get the chance to hold your baby before he is carried off in an incubator.  Instead of holding, feeding and loving your child your days are reduced to short visits by his bedside.  Nobody visits you and you don't want any visitors.  Nurses basically leave you alone and when they come to your room they have a sadness in their eyes and speak to you in hushed tones.  Your eyes are perpetually red from crying. There is a dark cloud hanging over you.  You can't eat. You can't sleep.  You go through the daily motions of life but you are numb.

You walk in to the nicu.  You would expect that a room full of babies would be loud. You'd expect to hear baby cries, coos, hear the babies moving around. But there is none of that.  All you hear is the soft sounds of machines.  Hear the occasional beeps of a monitor.  It's completely silent.

As you look at your baby, you see him covered in wires.  He lies completely still and looks like an alien.  You wonder what happened.  Was it something you ate. Something you did or didn't do.  Your husband is there too.  When you look at him you feel his sadness but he is trying to be strong.  Men aren't suppose to show emotions but you see how much this is tearing him up inside.  He's doing his best to comfort you.  But you can't be comforted.

The nurses are respectful.  They explain everything that they are doing. They give you updates. But it's not the same. YOU are suppose to be feeding your baby, changing his diaper, rocking him to sleep. Instead a stranger is watching him. They know his needs.  They are his caregiver.  You feel like a failure and a bad mom.

As you spend your days there, you watch other babies come and go.  You see the happy parents as they put their baby in the car seat to leave. They look at you with pity and sorrow.  Then they turn around and walk out of the room with their baby. They are going home.  You are not.  You feel a lot of envy. Then guilt because really do wish them well.

You worry so much about bonding with your baby.  You hear the experts say how important it is to bond.  How can you bond with a baby that is covered in tubes and wires?   How can you bond with a baby that has to live in the hospital while you live at home?  How can you bond with a baby who is always asleep every time you visit?  How can you bond with a baby when they won't even let you hold him?

You have other children who need you so you leave your baby in the hands of strangers and head home to your other children.  You put on a brave face and try to act like everything is normal.  You go through the routine of cooking, eating, homework, hanging out at home all the while knowing someone is missing.  Your body is at home but your heart is at the hospital.  You don't show your other children your tears because it will scare them.  You put them to bed at might and allow yourself time to grieve.  You're grieving for the baby who does not have a diagnosis. You're grieving for the happy time that families have in the hospital after a baby's birth.  But you have no good memories.  No first pictures.  No happy visitors to your home.  No chance to dress your baby in the cute little clothes that still sit at home.  The baby needs no clothes only a diaper.  By the time your baby comes home he will have outgrown those cute clothes.

Every time the phone rings you jump. You race to see if it is the nicu calling.  You really begin to hate that place.  You know you need to be there but you really hate to go.  You wonder why you even bother because all you do is sit by your baby's bed while he sleeps. How is he going to know if you are there or not?  But you go.  You make yourself go because some small part of you hopes that he hears your voice and feels your touch.  You pray that he knows you're his mom and that he know you love him. Most of all you hope he knows how sorry you are that he has to stay there.

You wait for a diagnosis. The doctors tell you the tests they have done.  Everything comes back normal. You are relieved but your patience is wearing thin. Why can't they figure out what's wrong?  With all of his technology why is it taking so long?  Then the day arrives. As you visit your baby all of the doctors and nurses gather around.  Their faces are somber.  Nobody is smiling.  Your heart clinches in fear.  The doctor says what you have been waiting for but dreading to hear.  You have a diagnosis.  You hear the diagnosis and your heart breaks into a million pieces. You crumble and your husband reaches out to support you.  You cling together as the doctor keeps talking.  But you don't really hear him at first. There's this roaring in your ears. You feel like you are outside of your body.  Then you start to calm down and focus on what they are saying.  You hear the words "home" and "he's going to be fine" and you begin to feel a little hopeful.   You begin to realize that the other doctors were wrong. Your son will not live in an institution. He will come home.  It will take a long time and you will have to have a lot of machines to keep him alive but he tells you the magic words "YOU" will care for him at "HOME".  The diagnosis is terrifying.  You're so very sad that this will be your child's life from now on but there is a great relief in knowing what's wrong.  Now you have a plan.  Now you can work towards getting him home. There's a light at the end of the tunnel.

I am here to tell you that you can do it.  You're stronger than you think.  Life will never be "normal" but you find your own new "normal".  You will come out of this a stronger more compassionate person. You've been changed forever.  Not many people have been through what you have.

As you sit at home and hold your baby you realize how precious life is. You see how much of a fighter your baby is and he becomes your hero.  He's so strong and you know that he can handle whatever life throws at him because he's been through the darkness.  Occasionally you will be brought back to those dark days. You will smell hand sanitizer and be reminded of the hospital.  You will see a mom somewhere in public holding her newborn baby and have some regrets that it wasn't the same for you.  Your baby didn't get to wear the cute clothes.  Your baby didn't get to have a first photo.  Your baby didn't make a sound for a very long time.  But you realize that none of that matters now.  All that matters is that your baby is home where he belongs.  You have finally bonded and your bond is unbreakable.  You and your baby have come through hell and your love is fierce for one another. Now the little baby begins to grow and only wants you. Nobody else will do.  You never tire of the baby clinging to you.  You never complain about the sweet little boy who has grown up to make lots of noise. You embrace every hug, every kiss, every I love you. You even embrace the messes, the noise, the times you have to send him to the corner. You secretly love it when he's disobedient because that means he's alive and living his "normal" life.   You embrace all of it because you know how precious it is.  You enjoy every little moment.

Hang in there NICU mom.  One day you will look back on this experience as a bad dream.  There is hope. You're not alone. You will get through this.  

A Year in Review--The Fourth Year

Noah enjoying his birthday cake

Noah at Chuck E. Cheese

Today is Noah's 5th birthday.  I cannot believe that another year has passed so quickly. It seems like just yesterday we were learning about CCHS and ventilation and now we are moving onto kindergarten and investigating other ventilation options as he grows up.   This past year was a really good year.  He has really done a lot of growing up this year. Noah is very bright and constantly asking about everything he sees and hears.  He loves to tell everyone what he knows about his surroundings including all of the colors and numbers.  The best part from a medical standpoint is that he had no real medical issues this past year and has been very healthy and stable. 

We began the year by attending speech therapy at the elementary school twice a week.  He made such good progress that we were able to drop a therapy and only attend once a week.  His vent clinics went very well.  Noah's annual bronchoscopy was uneventful, which was a tremendous blessing given all of the turmoil that we had after the previous one.  No granulomas were found and there were no other issues.  His annual sleep study went well.   Everything was in the proper range and no ventilator settings were required.  He also had his holtor monitor (heart monitor)  and  neuroblastoma screening, which were both normal. 

This year was the year of travel.  With both his sisters playing travel volleyball, we were on the road most every weekend during the season.  We went to Tennessee, Georgia and several places here in Alabama for tournaments.  Noah became the unofficial assistant coach of the team and loved having 12 girls and their coach making him a part of the team.   During the summer, we spent a lot of time at Gulf Shores because his oldest sister played sand volleyball.  We had so much fun spending time at the beach.  Noah loved playing in the sand and the water.  We purchased a pop up canopy that was large enough to cover all of our beach chairs. We filled a large cooler with water, snacks and drinks and spent the days on the beach. Fortunately, the summer was fairly mild and it never got too hot during the tournaments.  As an extra precaution, I took a squirt bottle filled with water to squirt around the trach in case he got sand there but with the flextend trach, I really didn't need it.  I just put him in a swim shirt and tucked the trach under the shirt.  It worked very well.  I had to be very cautious with the heat and make sure he didn't get too hot.  He got very tired of me telling him to take a drink every so often, he just wanted to play in the sand. 

Noah had a really great time this summer at Vacation Bible School.  He really began interacting with the other children and actually participated in the activities.  He was very reserved last year so it was very encouraging to see him branching out socially.  It's so funny watching him.  He is very decisive and will tell them if he doesn't want to do something.  His personality is adorable.  He made several new friends at VBS and invited them to his birthday party. 

Another fun thing Noah did was to ride on Thomas the Train.  He loves trains and every year Thomas comes to visit our local train station.  They have a lot of fun activities related to trains.  He was very excited to be able to see Thomas. 

Noah was also able to spend the night with his Nana and Poppa.  They have kept him a couple of times this past year and have done fantastic with the vent and trach care.  It was a huge step for them and for us.  It has been fantastic for him to do the things that "normal" kids do and spend the night with his grandparents.  He loves staying there.  The spoil him terribly and he loves every minute of it.  Every time we go over there he asks when he is going to get to spend the night with them again. 

We recently had his birthday party at Chuck E. Cheese.  He invited several of his friends and a lot of family.  We spent the day playing games, eating pizza and cake and visiting with friends and family.  The noise level was little overwhelming for him at first but he quickly recovered and had a great time. 

 

Noah has also began 4K this year.  Currently, he attends twice a week from 9-1 at a local church based private kindergarten.  Because it is a private school, they do not have a nurse so I attend with him.  I stay in a room upstairs in case I am needed for a medical issue.  His starting school has not bothered me as much as I thought it would.  I guess its because I don't actually leave him.  I am on the premises.  Next year will be a whole different story.  He will be attending every day all day. The teachers and staff there have been fantastic and do a great job of watching him and making sure that he is ok.  They brought him to me once to check his trach because he had some nystatin powder around his neck.  We use the powder every night when we clean the trach.  They noticed some clumped up around the stoma and wasn't sure if it was a concern or not.  Now our other big decision is whether to leave him at his current preschool (which he loves) or put him in the public schools 5K program.  When we move him to public school, we will have to go through all of the negotiations with the school on nursing and Noah's care and what will have to be provided as a result of his condition.  I would prefer to leave him where he is now but if he went public, they would be required to have him a nurse and I could actually leave the school, which would be nice. I think that it will be a fight to get what we need with the public school.  I'm not looking forward to that part of it. 

Watching him grow and change has been such a blessing.  It is amazing to see how far he has come. 5 years ago I saw him being wheeled out of my room in an incubator going to the NICU.  I observed him with tubes and wires poking out of his body.  He never made a sound.  Now I see him talking constantly, playing in the sand, swimming in the pool, aggravating his sisters and I marvel at how strong he is, how much of a fighter he can be.  He is an amazing mighty little man and I am so blessed to be his mother.  They told me he would be in an institution the rest of his life.  He continues to show them just how wrong they were.   

Noah after his trach surgery

Noah's first birthday

Noah's first birthday



Coach Noah and the volleyball team

Noah and Thomas the Train

   

 

 

 

Happy 5th Birthday my Mighty Noah.  Mommy (and Daddy) are so proud of you. 

Do You Really Need a Nurse?

I belong to several trach/vent support groups on Facebook.  One of the most talked about issues is nursing care.  Some of these women have hit my last nerve.  So here goes.

Noah has never had nursing. Our insurance doesn't cover it and there no way we could afford to pay for nurses out of pocket so nursing has never really been an option for us.  That being said,  I know that some people need nurses.  Maybe their child is extremely vent dependent., maybe they work outside the home, maybe they are a single parent.  For whatever reason, nursing is necessary for them.  I get that.  But what I don't get is these moms who don't seem to know how to care for their child.  The moms who won't step foot outside their house during the winter, ones who are scared of using candles or perfume or having pets, ones who do not take their trached children to the beach or the pool.   I understand it's necessary to be careful but these kids need to experience LIFE.  They need the sand on their toes and the sun on their face.  They need to go to parks, zoos, movies, restaurants and experience all that life has to give.   I will be the first to admit how hard it is when you have to carry a ventilator, pulse ox, go bag and your baby.  It took me several trips to the car just to get stuff loaded.  It's a hassle for sure but one that is worth it.  I feel so sad for these kids who are stuck at home and don't get to do anything.

I've heard all the reasons for having nurses.

"It's safer to have someone watch your little one 24/7".
"Having a nurse at home is a must"
"You are a mom". (Not a nurse)
"There are no second chances for mistakes"
"You need sleep"

Yes I am a mom but I am also a chef, chauffeur, teacher, laundress, secretary, and nurse.  Every mom is these things. Special needs mommies just have more of the mommy nurse role.   No, there are no second chances but there's no second chances for anyone.  Yes, I do need sleep but so do all the mommies of newborns and daddies who work night shifts.  No, having a nurse at home is not a must.  We have done just fine for the last 5 years without one.  As for 24/7 watch, how would you like if someone sat beside you every day all day watching your every move.  There's no privacy.

I really do get that 24/7 nursing is important for some people.  I'm afraid, though. that these moms are becoming too dependent on other people to care for their child.  They don't know how to do trach care, they don't bathe their own children,  they rely on these nurses to handle all of the medical issues (trach care, suctioning, trach changes, vent alarms, etc.)  This is dangerous!  A few months ago a little boy died because his nurse did not know his trach was out!!!   These parents lost their child because a NURSE was not properly trained.  Just because someone has a nurse's license doesn't mean they know how to care for our child.  Not to mention, all of the schedulelng conflicts, nurses sleeping on the job, messing up the house and the lack of privacy.

If you have nursing and love them then I'm glad.  All I'm saying is that you need to be sure, completely 100% sure, that you can take care of your child's medical needs yourself.   Don't be afraid to do this. It's your child and nobody knows that child better than you.  Don't be afraid to ask questions. Build up a list if resources you can contact if you're not sure of something.  Don't listen to the people who say it can't be done.  It can.  It's just takes a lot of effort, planning and learning.  I just don't want trach/vent moms to be scared of their own kids.  They are just kids, they just need a little extra help. Do not be afraid to rely on yourself. Trust your instincts. Please, whatever you do,
don't condemn those of us who don't have nurses.  Our children are not in any more danger than yours.

I am so blessed that our hospital trained me so well.  It took several months but by the time I left the hospital with Noah, I knew how to care for him completely.  No, I am not a licensed nurse but I do know the nursing skills needed to care for my own child.   Our pulmonary team made sure we had the right training and the confidence to handle things ourselves and for that I will be forever grateful.

When Our Best Isn't Good Enough

The CCHS community has suffered yet another loss.  A little girl named Sloane lost her battle with CCHS.  Her parents did all the right things, took great care of her but yet it still wasn't enough. 

We take such careful care of Noah.  We go to all of his checkups, get all of his vaccinations, do all of the yearly tests, read as much as we can on his disorder and do everything we can to make his life as normal as possible.  But there is always that fear.   The fear that our best isn't good enough.  Noah has a mild mutation of 20/25, which means he doesn't have as many problems as some of the higher mutations.  But that doesn't matter to me.  The risk is still there. 

My greatest fear is that Noah will have a heart pause.  We have lost several CCHS kids to heart issues.  Noah has yearly holtor monitors to test for this.  However, as his doctor has told us, CCHS is a brain issue, not a heart issue.  He could have a holtor monitor for 3 months and the next day after he has had it removed, he could have a pause.  Because its a brain issue, it can happen any time.  There is no rhyme or reason. 

My other concern is the development of neuroblastomas (cancer).  One sweet CCHS boy was tested every 6 months but he still developed neuroblastoma and lost his battle also.  Noah gets tested once a year for this.  Is this enough?  I don't know. 

The CCHS community is small.  However, we are close.  When one family cries, we all cry.  Our children have so much in common and even though they are fierce warriors, they are still fragile.   Sometimes we forget that.  We try to go about our daily lives as normal as possible, not dwelling on the possibilities of this crazy disorder.  We live our lives doing the best that we can, doing all of the right things, but still sometimes that is not good enough and we have to live with that. 



In memory of our brave CCHS warriors
Sloane
Landon
Tim
Brielle
Lucy
Allison

Decisions

One of the first decisions we had to make was whether to trach or use a mask.  For us, it really wasn't much of a decision.  We felt that a trach would ventilate Noah better and be more comfortable for him.  Now that he is older, we have to decide if we want to decannulate and go with a mask for ventilation. There is a lot of things to consider before doing this transition.  First, we would have to completely change ventilators, going from an LTV 950 to a Trilogy.  This would involve at least a 3 day stay in the hospital where we would have to learn how to use a whole new vent and make sure that Noah could get adequate ventilation from this new system.  Then, we would have to get him use to wearing a mask.  This would involve getting him one to use while watching tv, playing, and wearing it at various times during the day to acclimate him to the feeling of a mask.  During this time, we would have to make sure his CO2 stays within the correct limits.  Once he has acclimated to a mask, we would then find the right one for him.  After finding the right mask, we would then let him use it while sleeping and schedule a sleep study to make sure his numbers are good while using the new setup.  Then, decannulation would occur.

We have mixed feelings about decannulating.  I would love for him to be rid of the trach.  No more trach care and swimming while going under the water are two huge advantages.  The disadvantages would be the long process of switching over to a new vent and getting him to wear the mask.  Plus, the trach is a visual reminder that something is different about his health.  Once the trach is gone, there is no way for people to see that he has any health issues, which could possibly make them less careful around him.  We would also have to change the way we check his CO2.  We would more than likely lose our Medicaid help.  We would not have all of the trach supplies, but would still have to have the equipment (the ventilator, CO2 machine, Oxygen and the pulse ox).  Insurance does not cover all of this completely and we would have to spend more out of pocket to keep all of these machines.  It is going to be a very long process.

Another decision we have made is whether to do the diaphragm pacer surgery.  This was not that difficult for us to decide.  This is not our decision to make, it is Noah's.  A diaphragm pacer would be implanted on his diaphragm.  This device would be used in place of a ventilator.  At first, it sounds like a perfect idea.  So what are we waiting for?  I have read that there is a small chance that his diaphragm could be damaged during the surgery, causing him to require 24 hour ventilation.  I realize that the surgery has greatly improved over the years and the chance is small, however how in the world would we be able to live with ourselves if our decision caused our child who is only ventilated about 8-10 hours a day during sleep to be required to be ventilated 24 hours a day 7 days a week for the rest of his life.   At this point, we are not comfortable making that decision for him.  This is an invasive surgery and I have mixed feelings about doing this.   We are not willing to take the risk.  As he gets older, I am sure he will have questions and have his own ideas on how to take care of himself.  My job is to present him with the information and help him make an informed decision.

One of the big decisions we face now is school.  Noah is extremely bright and loves to learn.  I know he would do well in school.   The problem is having experienced people there who know what to do in case of an emergency.  I really do not like the idea of me going with him and sitting there all day, every day.  My goal is to make him more independent and realize that there are other people who can take care of him.  I am having so much trouble trusting people with his care.  It terrifies me that even the most experienced hospital personnel have never heard of CCHS and really do not understand the seriousness of the disease so how is the school system suppose to be able to handle this?  I can train them and explain things to them but ultimately I know that something is going to happen at school that could possibly endanger him.  A simple headache can mean his CO2 is high.  He has trouble regulating his body temperature sometimes so during recess a simple complaint of being too hot or too cold could be ignored.  During standardized tests the students are allowed to rest when they are finished with their tests.  Both Beth and Hannah have told me that they have fallen asleep waiting on test time to be finished.  This can absolutely NOT happen with Noah.  Those are just a few things I have thought of when thinking of school.  Unfortunately, there are not many cases like his so we really have no model to follow.  I guess we will have to figure this out as we go along.  

Once we pass the school hurdle, we then have to decide how to allow him to care for himself as a teenager and then an adult.  How can he have his privacy as a teenager when he wont even wake up when his ventilator alarms?  I'm sure he wont want his mommy or daddy watching over him while he sleeps as he gets older.  What about college?  How is he going to be able to go off alone and live in a dorm?  One of the huge dangers of CCHS teenagers and adults is drinking.  There have been instances where people with CCHS have drank too much, passed out and died.   Drinking is always serious but for people with CCHS it can be deadly. 

These are just a few of the decisions we face now and later.  I try so hard to be prepared for anything but I know that inevitably something will happen for which I am not prepared.  This thought terrifies me.  The fact that the decisions we make for him can impact the rest of his life is a huge responsibility.  I always use to think that CCHS was so much harder when he was younger and that things should get much easier the older he got.  I'm not so sure about that now. 

A Few Things I Have Learned from CCHS

1.  Don't compare--Don't compare your special needs child with your other children.  It's so hard not to compare, especially when looking at those baby milestones.  Instead of focusing on what your special needs child is not doing focus on what they CAN do.  Embrace every milestone and celebrate their accomplishments. 

2.  Be flexible--This one is so hard for me sometimes.  I have learned over the years to take things in stride.  Don't be afraid to improvise.  I have learned to stop stressing over the small things that I cannot change. 


3.  Rest whenever possible--I always took sleep for granted.  I've always been one who has to get their 8 hours.  Then Noah came along and I haven't slept the same since.  We have no nursing so I am the one who gets up for every alarm.  Some nights are worse than others.  Some mornings it's all I can do to get up and get the girls off to school.  I crave sleep like a junky craves drugs.  I have learned the hard way to sleep whenever possible.  When Noah naps, so do I.  There are so many other things I should be doing than napping during the day (laundry, cleaning, etc) but in order to function I have to sleep so a lot of things do not get done.  My house is a wreck most days but I honestly have no choice if I want to be functional.  Don't be ashamed of napping when possible.

4.  Make some time for yourself--I am so guilty of not doing this.  It is so hard with 2 girls, a husband and a boy with a ventilator.  I have been guilty of staying up late just to have some time by myself but this isn't the best thing because I pay for it the next day.  Inevetibly Noah will beep a lot that night and the next day I feel like the Walking Dead.  I have learned to take time when I can.  I go by myself on Tuesdays to pick Hannah up after school.  Beth watches Noah and I get 30 minutes to myself.  Sometimes I hide in the bathroom for about 30 minutes.  Take the time when and where you can get it.

5.  Make some time for your spouse--This one is hard too.  What do you do when nobody wants to keep your special needs child and your and your husband want to go out?  Take them with you.  We have done this many a time.  I must say that it is difficult.  I can't tell you the number of times that the kids were in bed and Chris and I sat down to watch something on tv together.  It's sometimes taken us a whole week to watch a 30 minute episode together because either one or the both of us end up falling asleep.  Do your best to find some time.  Take 5 extra minutes and have coffee together.  Make an impromptu phone call during the day.  Send a sweet text or email.  I read somewhere that the divorce rate for parents of special needs children was over 50%.  I can definitely understand why.  

5.  Don't be afraid to show your feelings--It's ok to be sad.  It's ok to be mad.  The life of a special needs parent is demanding and difficult.  I can't tell you how many times I have cried with frustration, how many times I have been so mad at doctors, the equipment company and the medicaid people that refuse to show up to my house on time.

6.  Do the research--Living with a rare disease means that doctors do not know much about CCHS unless we tell them.  I have done countless hours of reading about CCHS, talking with other parents, searching the internet, all with the intent of becoming more knowledgable about CCHS.  I made myself a CCHS binder.  It is now full of articles and resources.

7. Your home is your sanctuary--Make sure everyone honors this.  As a special needs parent, you will have so many people coming into your home.  Nurses (we never had nurses but I've heard from a lot of parents who do), therapists, the equipment company, the medicaid agency.  All of these people come in on a monthly basis.  That doesn't seem so bad but when you have 6 people who all want to come at the end of the month, all on different days, it gets so frustrating.  These people have learned to call me the Monday of the week they want to visit.  They do not just show up.  That's not to say that sometimes things don't work exactly as I planned but I do not allow them to take advantage of me.  If they are suppose to be here at a specific time and are 30 minutes late without calling then I leave if I have somewhere else to go.  I do not wait on them.  Do not let them take advantage of you.

8.  Don't be afraid to fight the system--We had an issue last year with anethesia.  Since then, I do not trust them at all.  I made this known to the hospital.  It has taken over a year but there is now a CCHS policy regarding anethesia in place.  We have decided to allow them to do the yearly tests but have made several requests.  If these are not met, then they are not touching Noah.


9.  Make time for your other children--We were determined to allow the girls to still do things even though it was more difficult with Noah.  Many a time I have packed up all of his equipment and gone to the dance studio to wait for Hannah.  We have sat in the car waiting on both girls to get out of piano.  And this past year, we packed everything up multiple times to go out of town for Beth's volleyball games.  Yes it was a hardship and not the easiest thing to do but we did not want them to begin to resent Noah.  We wanted them to see that we realized they are just as important as he is, even though he requires a little more care.

10.  LIVE--To me, this is the most important one.  I have seen so many trach/vent parents who are scared to go out during flu season, who got rid of their pets, who will not burn candles or spray perfume, who do not go to the beach or let their kids swim, who keep their child in the home at all times unless they have a doctor's appointment.  The way I see it, having a special needs child does not mean you should isolate yourself.  It may be harder, it may take a lot of planning and a lot of work but it is so important to treat the special needs child as "normal" as possible.  So go out, have birthdays, go to the zoo, visit the beach and swim, go to the park.  LIVE YOUR LIFE without being scared.

A guest blog by another CCHS mom, Sarah Y.

 When Noah was first diagnosed with CCHS, it was so overwhelming.  There was literally nobody here to talk to that could understand everything we were going through.  Then one day I received an email from another CCHS mom.  Turns out she lives in the same city!  I was so excited.  We met in the lobby of Children's hospital.  Immediately I felt a kinship with her that I had not experienced with anyone else.  I realized she was going through everything we had experienced the year before.  Even though I wish CCHS on nobody, I am so glad we walk this road together.  

We are now trying to raise awareness of this rare disease.  For the first time, UAB is hosting a rare disease day event.  We have been interviewed for a local parenting magazine and NORD has allowed Sarah to write about our journey as rare disease parents.  I have included the link to her article.  

Thanks Sarah for sharing Madi with us and for being there for me. 



http://blog.rarediseases.org/rare-kiddo/

The NICU

I have always been a planner.  I like everything to be in order and am not very spontaneous.  This was true with the planning of Noah's birth.  I had everything ready.  His room was painted, crib was ready with new sheets and his mobile hung, little boy baby clothes were hanging in the closet, the car seat was installed and ready for him to come home.  Little did I know that none of that mattered.  He would not sleep in his room (it is too small and will not hold all the equipment), he would not sleep in his crib for 4 months, he would outgrow those little baby clothes in the closet because he spent the first 4 months of his life in a diaper with tubes and wires poking out) and the car seat sat unused in the car for 4 months.  My plans did not include a NICU stay.

 I had never given the NICU much thought before I had Noah.  The NICU was just that place in the hospital where they took sick babies.  (Other people's sick babies, but not my baby). I remember my first visit to the NICU.  Chris wheeled me in a wheel chair.  We had to be buzzed in the locked door.  Upon entering, we stopped at the sink and washed our hands.   There were 2 big rooms divided by a nurses station.  Noah was on the right.  Chris wheeled me into a huge room.  There were incubators spaced all along the walls.  Monitors were everywhere.  The antiseptic smell was strong.  Surprisingly the NICU was very quiet.  The only sounds were the various beeping of machines.  Being a nursery, I thought it would be loud with the sounds of babies crying but there were no cries.  I realized that these babies were using all of their energy trying to stay alive.  The room was dimly lit, except for one bright spot where a baby was under several huge biliruben lights.  The blue lights gave the NICU a very eerie glow.  All of the babies, mine included, looked like little aliens undergoing some weird science experiment. You could barely see the babies because they were covered in wires, tapes and tubing. 

As Chris wheeled me to Noah's incubator I was terrified but elated to see him.  He was sound asleep.  Wearing only a diaper, wires were on his chest and he had a nasal cannula.  Other than that, he looked perfect.  I was allowed to hold and snuggle him while he slept.  Several times, his oxygen levels dropped to the upper 80s but then came right back up to the 90s.  Before the nurse could even come over to check, the machine had stopped beeping.  After visiting for awhile, Chris wheeled me back to my room.  I was very sad to leave Noah but I thought that this would only be for a short time.  Unbeknowest to me, this was the beginning of our long 4 month nightmare. 

We continued visiting Noah at all hours of the day and night.  The day finally arrived when the doctors informed me that I was being discharged but my baby would not be coming home with me.  I was devastated.  This was not in my plans. All of the "normal" things you do in a hospital with a newborn didn't happen.  We didn't get to have the first baby picture, see him in the nursery, or even listen to the speech on breast feeding from the lactation consultant.  We were suppose to be putting him in his coming home outfit and bringing him home to see his sisters and grandparents.  Instead, I was given my discharge papers and we began the long walk to the NICU to visit.  The nurses there were so kind.  They knew that I did not want to leave my baby.  I was assured that they would call if they needed me and they gave me a number to call 24/7 so that I could check on Noah.  We gave him one last kiss and walked out of the hospital without him.  It was the hardest thing I have ever had to do.  We returned home to an empty house. The girls were at school and there was no need for the grandparents to be there.  The silence was overwhelming.  Instead of being home holding my son, rocking him, feeding him, changing him and taking care of him, I was sitting at home with just my husband and I in a silent house.  My parents came over later that morning for a visit and to check on me.  They arrived with sad eyes and hushed voices.  The girls returned home from school glad to see me but missing Noah.  They had only been able to see him for 5 short minutes before he was rushed to the NICU.  Instead of cuddling him, they had to be content with looking at pictures we had taken of him in his incubator.  The silence of the house was deafening.  Instead of a baby crying, phone ringing, doorbell ringing and visitors we were left with nothing. 

We began a routine that would continue for 4 long months.  We would wake up in the morning and I would get the girls off to school while Chris would go to work.  I would then get ready and go to the hospital (before the doctors released me to drive, I would have to rely on my daddy to come pick me up and take me to the hospital.  We did this for about a week until I was cleared to drive.  He would pick me up, drive me to the hospital and sit in the lobby while I visited with Noah). Chris would leave work on his lunch break and we would spend an hour together with Noah.   He would leave to go back to work and I would stay until it was time to go meet the girls who rode the bus to school.  Once home, I would begin dinner while the girls did homework.  Chris would come home, we would have dinner and then begin the nighttime routine of baths and getting ready for bed.  Chris would then kiss the girls goodnight and go to the hospital while I tucked the girls in bed.  The next day would begin the routine all over again.  Every weekend, we would either drop the girls at my parent's house or my parents would come to ours while Chris and I went to the hospital. It was exhausting.

Many sights and sounds of the NICU are emblazoned on my brain forever.  The smell of hand sanitizer will forever remind me of Noah's hospital stay.   The silence of a room full of babies was deafening.  Constant beeps and soft whispers of the nurses were all sounds of the NICU.  I saw things I never wish to see again.  Small, sweet babies with tubes and wires coming out of their bodies, mommies and daddies crying by their baby's bedside, the pity and sympathy in the nurses eyes, all made a huge impact on me.  I will never forget the sight of Noah, lying in the NICU, newly intubated, blood on the sheets and him not moving. The sight of the IV in his head was unnerving.  Seeing him lying there with tubes, wires and IVs was frightening.  I wondered what I had done to cause this.  I wondered if he would ever come home.  I wondered if he did come home, how on earth was I suppose to care for him and what kind of quality of life would he have with a trach and vent.   Honestly, at one point I even wondered if we should let him go.  Eventually, we were allowed to hold him.  Sitting in the chair with him in my arms, feeling the hard vent tubing, carefully moving around the wires so as not to pull them out I realized that I would do anything in my power to keep him with us.  I instinctively knew that he had so much to teach us and his life was just as precious as any other. 

The NICU nurses were wonderful.  When Noah was three weeks old he was transferred by ambulance to the local Children's Hospital NICU.  I was very nervous about the transition.  One of his nurses assured me that she would ride with him to the new NICU.  I could not be there because my youngest daughter had the flu.  The transfer went well and as soon as Noah was settled the new NICU nurse called me.  I had to content myself with phone calls for the first week he was in the NICU because I became sick with the flu.  Once I was finally able to visit him, I was impressed with Children's NICU.  Every time we came to visit, a nurse would come over to us and explain everything they had done and what tests they were going to do that day.   Once we knew Noah was going to get a trach, they made him a special personalized trach box to hold his trach supplies.  One day I came in and found him dressed in a cute Halloween onesie.  A nurse had bought him several Halloween onesies and dressed him.  They brought us a rocking chair so we could sit and rock. I spent many a day just sitting in the NICU surrounded by beeping machines and quiet babies.  One by one I watched babies come and go.  Some had a short stay, some had longer.  I saw parents crying, nurses talking in hushed tones and babies who didn't move.  Once, the NICU was closed for hours.  I sat in the lobby waiting to go in to see Noah but they never opened it back up until that night.  I felt sad and frustrated because I couldn't see my baby but I felt extreme sadness for the parents of the baby who had shut down the NICU.  Another time I encountered a mom crying in the hallway. She was on the phone with someone explaining that they were having to make the decision to whether to turn off the machines or not.  It was heartbreaking and in the back of my mind I wondered if one day I would have to make that same decision. 

The day we were released from the NICU was both scary and exhilarating at the same time.  The NICU nurses had become our lifeline and they were so supportive and caring.  I wanted to take all of them downstairs to the 5th floor with us.  I will never forget them packing up his stuff in a small box, unhooking the equipment to put on a battery and then wheeling him to the elevator.  A new chapter of our life had begun.

The NICU experience is something I hope to never have again.  We learned a lot during our 1 1/2 month stay there. We learned that the human spirit is strong; we learned that there are kind people everywhere; we learned that our girls are extremely compassionate; we learned that adversity makes us stronger; we learned many life lessons.  The NICU didn't break us, it made us stronger. 

A Year in Review: The Third Year

Today is another milestone for Noah.  His fourth birthday is today so I thought I would give a short recap of his third year.

When Noah turned 3, he aged out of our Early Intervention program and began to receive speech services at our local school.  We went from having 6 home visits a month (2 speech, 2 occupational and 2 physical therapies) plus 2 hospital visits a week for vital stim down to only 2 speech therapies a week.  Looking back, I have no idea how I juggled all of those therapies but I am glad he was able to receive all the help.  He loves his speech teacher and loves going to "big" school.  His speech has improved dramatically.

This was the big year of potty training.  I had heard that CCHS kids have some trouble with the training but he did great.  My secret weapon was m and m candy, which is Noah's favorite.  He hasn't quite mastered the nighttime training.  This is a little more difficult because in order to go to the bathroom at night, we have to disconnect his vent and pulse ox.  He can't just get up and go.  Last week during nap time, he stayed dry all during nap so I'm hoping the nighttime training goes well also.

He had a few colds during the year and we had to adjust some vent settings but only had one really big sickness.  He got walking pneumonia and had to be on his vent 24/7 for a few days.

We went on several vacations this summer.  Washington DC was a great learning experience for him.  He loved riding on the Metro and was fascinated by the Lincoln Memorial.  We bought him some Lincoln logs at the Ford Theater and now Noah tells us that Abraham Lincoln gave him some logs.  We had an interesting time figuring out how to carry his equipment all over DC without using our car and came up with the idea of using a luggage cart.  This worked very well.  Our annual family beach trip was also this summer.  We spent the week with grandparents and cousins.  Our challenge this year was to figure out how to keep him safe in the water since he has outgrown his baby boat.  We ended up using a life vest and a swim ring.  I also found a small kid float that folds out flat.  He liked to sit on that while wearing his swim vest.  He absolutely loved the sand and the ocean.  He built sandcastles and I let him sit at the edge of the water by himself.  His favorite thing to do there was to catch the crabs at night.

Noah attended his first Vacation Bible School.  His first year he was sick.  His second year I got his grandmother to keep him because he wasn't old enough to attend.  He was very reserved at first but by the end of the week, with encouragement from the great VBS workers, he was singing, dancing and participating.

Noah had his first sleepover alone at his Nana and Poppa's house.  (See my blog post The First Sleepover).  This was a huge deal for all of us.  Sending a vent dependent child to his grandparents is not easy.  There's a lot of packing involved and a sleepless night for his grandparents.  But Noah had the best time and that's all that matters. 

My oldest daughter, Beth, did travel volleyball this year.  She was on the regional team and we traveled out of town a lot for games.  We became a pro at overnight vent setup at different hotels.  I just kept a suitcase of supplies packed for the season and replenished as needed.  Noah loved traveling and staying in the hotels.

We celebrated his birthday this year by renting a pavilion at a splash pad.  He loved playing in the water.  We spent the afternoon with family and friends, including Noah's CCHS sister.  It was so amazing seeing the two of them sit together and know that they are two of only about 800 people in the world with CCHS.


I have heard many CCHS parents say that it gets easier.  This is true.  I'm not sure, though, if it really gets easier or if we have learned to manage everything better.  Noah has a wonderful ability to keep himself awake, which is good for traveling but bad for nap/bed time.  We now travel around town without the ventilator.  I use to pack up everything just to go to the store but now we travel lightly.  I take the suction machine and the go bag.  As he gets older, the doctor visits and the therapies have decreased.  His resistance has built up so he doesn't get sick as often, however I am sure this will change when he starts school.  Our next big hurdle is preschool and beginning our transition from trach to mask ventilation.  

Noah has come such a long way from that tiny baby in the NICU to a happy, healthy 4 year old.  CCHS does not slow him down. Happy Birthday sweet boy.  Mommy loves you. 

Noah when he was about 3 weeks old. 

Hannah's first time to see Noah.  He was 2 months old

Beth's first time to see Noah

Noah age 3

Noah age 3