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

The First Sleepover

Well it finally happened.  Chris and I knew it was going to happen sooner or later.  Noah asked to spend the night at his grandparent's house.  My girls have always loved going over to my parent's house (Nana and Poppa).  Even at age 10, Hannah still loves to spend the night.  We knew that it would just be a matter of time before Noah wanted to spend the night too. 

Awhile back, Noah and I packed everything up and went to spend the night at Nana's house.  I stayed too, just in case.  He did great, although I don't think my poor mom slept at all that night.  Last night, I did not stay. 

Packing for an overnight stay is a little exhausting.  The back of the van looked like we were going for a week.  I had his vent, suction machine, co2 monitor, sat monitor, the vent heater, a bag full of machine cords, the go bag, an overnight bag and one bag just to hold all of Noah's favorite blankets and babies.  I carried everything over there and helped mom set it all up. 

Noah had already been talking about spending the night.  The only thing he was worried about was that Nana would close the door or turn the light off.  I kept reassuring him that wouldn't happen and so did Nana.  He was so excited and ready to stay.  Then it was time for us to leave.  He looked at me and said he wanted to go with me.  My heart sank.  We had already discussed that if he was really scared and wanted to leave that I was not taking all the equipment apart and packing it back up.  I decided that if he did this, that I would just spend the night also.  I reassured him that it would be fine and reminded him that his Honey (his sister, Hannah) was spending the night also.  He thought about this for a minute and then agreed.  We kissed him and left.  I had no worries leaving him in my mom and dad's care.  It was a sad but great feeling at the same time.  I was happy to let him stay but realized that my little boy is growing up. 

It was so weird going to sleep without the sound of the ventilator.  I slept all night, the first time in almost 4 years, with no alarms, no wooshes of air, no beeps.  It was amazing.  It was time.  I knew he was ready and so was I. 

I can't imagine how scary that probably was for my parents.  I've always tried to put myself in other people's shoes to see how they would feel.  It is a huge responsibility.  But, my mom was trained at the hospital with me and I knew she could take care of him all night without me.  Noah is very stable and the only alarms that occur are false; there is water in the circuit, the sat probe is loose, he is laying on the circuit, etc.  We live about 20 minutes away so I told my mom that if she got scared, just wake him up and call me.  I'm so proud of them for taking this big step and letting him realize that just because he has a trach and a vent that he can do the same things as his sisters.  I am determined that his diagnosis will not hold him back and that he will never feel penalized for having CCHS.  Yes we have to take some precautions and it sometimes takes a lot of planning but it is so worth it in the end.  

Thanks mom and dad for helping Noah be "normal".  I know how scary that was and I'm proud of you. 

Noah sleeping peacefully at Nana's and Poppa's house

The Wrong Way

Growing up in the deep south, we were taught manners at an early age.  I have always tried to be mindful of other people's feelings and consider myself to be a tactful person.  Unfortunately, I have found that this is not true with all people.  Maybe I have become more sensitive to Noah's diagnosis or maybe I just notice it more but I have found that a lot of people need to use more restraint and better manners when discussing special needs. 

When Noah was in the hospital before getting a diagnosis, we saw so many doctors and professionals.  One of these was a geneticist who was suppose to be an expert in his field.  I will never forget the day we got a call from the hospital telling us the geneticist would be there to meet with us.  The call came only an hour beforehand so there was not much time to plan.  Chris rushed home from work, we had no time for a sitter so we loaded the girls in the car and headed to the NICU.  Because of the swine flu epidemic, the girls were not allowed in the NICU so we had to make them wait in the waiting room.  Chris and I were sent to a small conference room to wait.  After about 15 minutes, the NICU doctor and the geneticist entered the room.  They proceeded to ramble on about the tests they had performed and informed us that all of them were normal.  The geneticist looked us straight in the eyes and said "Can I tell you I feel good about Noah?  No, I cannot."  Now how in the world were we suppose to process this information?  We took it to mean he was at death's door.  As they looked at us with pity, we were devastated.  After he told us this, they ended the meeting by telling us that "we could always hope for the outcome that we wanted as long as we had no answers".  What???  Basically, they gave us no hope whatsoever.   

Not long after, we were visiting Noah in the NICU when the other doctor came over to us.  She explained that they were testing for a rare disorder of CCHS.  She then informed us that he would be in an institution the rest of his life,  handed us a short, uninformative page from a medical journal, told us she would allow us to "process this information" and then walked off. 

We were left with the thought that Noah was close to dying and if he did survive, he would never live with us and wold be in an institution the rest of his life.  There was no more hope.  The despair was overwhelming.

Looking back, I realize that these so called doctors had no tact. There is a right and wrong way to give information like this.  In retrospect, they should have started by telling us the good news.  For instance, they could have told us things he did not have and explain that other than the unexplained desats that he was healthy.  Apparently, they saw being on the vent as a death sentence. 

Not only do the doctors/specialists have no tact when dealing with CCHS but other special needs parents can also.  There was a mother recently who I met on one of the special needs facebook pages.  Her daughter was undiagnosed but had many of the same symptoms of CCHS. Several of us CCHS parents had tried to help her.  She constantly asked questions and when we answered them, she would ignore the answers.  One day, she posted on our CCHS page that she had gotten the CCHS test results back.  To paraphrase her post, she basically said "thank God my kid doesn't have what your kid has".  Then she proceeded to ask us why we thought her child had apnea.  Seriously, who gets on a page where people have done their best to help you and then act so thankful that your child doesn't have the same diagnosis.  Plus, have the nerve to ask us what we thought was wrong.  Thankfully, she was removed from the page.  Another mother in the same situation was also asking questions.  We kept telling her that it was important for her daughter to be on the vent until the diagnosis was made and she kept making excuses like "we don't have a battery so we aren't taking the vent on vacation".  We kept urging her to get second opinions and all we heard were excuses and things like "I'm planning on" or "I'm going to" ask such and such doctor when we go back.  Eventually, we stopped answering her altogether.  It is beyond my understanding how people can act this way. 

When dealing with a diagnosis like CCHS, it is important to be positive and encouraging.  Parents are dealing with enough worries and do not need to hear negative comments.  One can be supportive without being tactless. 

Traveling with a special needs child

Traveling is stressful but even more so with a special needs child.  There are so many pieces of equipment and so many supplies that have to be taken, not including all of the regular things that have to be packed when traveling.  Plus, it is always a challenge to set the room up like a mini ICU.  We have always been of the mindset that we would treat Noah just as we treat our girls, including letting him travel.

I remember the first trip we took after he was discharged from the hospital.  We went to the beach during spring break.   I packed enough for a whole month but I wanted to be sure we had everything we needed.  After all, there was no running to Wal Mart to get HMEs or circuits.  We also had to figure out where he would sleep and room arrangement.  That trip was a learning experience for us.  We had so much fun and it helped to know that traveling with him would be possible. 

I have put together a few helpful tips for traveling with a trached/ventilated child.  I will also explain how we set the room up for Noah to sleep.

Supplies--When we first went to the beach for a week, I packed a suitcase for the trach supplies, one for vent supplies and one for clothing.  Noah had 3 suitcases!  After that trip, I realized it was a bit excessive so now I've condensed everything into 2 suitcases.  One for supplies and one for clothes.  We change circuits and the trach weekly.  I start the packing process by packing the vent things first.  (You could make a list of everything you need for circuit changes but I just go through the process in my head without using a list).  For a week, I usually take 3 of everything.  I pack 3 water bags (we usually use 2 in a week), 3 circuits, 3 water chambers, 3 omniflex, 3 swivels.  For trach supplies, I pack a lot of trach ties because I never know when we will be swimming.  I usually plan for 2 a day, which is 14 for a week.  I pack the cleansing soap, nystatin powder, 4 trachs, scissors, a trach kit for every day plus some extra gauze, about 4 bags of suction catheters and a baggie full of saline bullets.  I also take an extra suction canister and tubing.  I pack about 4 caps since he wears them all the time and they tend to get lost sometimes.  Plus, they are small and fit in the suitcase easily.

Equipment--We are very careful when packing the equipment.   We take our time to make sure we have everything.  The vent gets packed in its travel bag.  I am extremely careful with the CO2 monitor.  I wrap it in bubble wrap.  The sat monitor goes on top of the CO2 monitor and they have their own bag.  The suction machine has its own bag.

Electrical Cords--Every piece of equipment has a cord.  We have a ton of cords so we have a designated "cord bag".  Its a duffle bag that came with our set of luggage.  The first thing in the cord bag is the vent stand.  It's flat so it goes on bottom.  Then as I pack each piece of equipment, I put its cord in the cord bag.  I pack up the CO2 monitor and then take the cord and put it in the cord bag.  Same thing with the sat monitor.  We also put the vent heater in this bag.  The vent battery goes on the vent and the cord goes in the bag.  We also put our bungee cords in here too.  We make sure to take our surge protector.  We purchased an octopus like protector that has a lot of room for the cords to plug into.  We always take a long extension cord just in case. 

Vent batteries--We have 2 vent batteries.  The night before we leave, I plug everything up and let it all charge if needed.  I keep one vent battery in the back pocket of the car and the other is on the vent.  We went to Disney a couple of years ago when Noah was almost 2 and we carried 3 vent batteries.  On Noah's typical vent settings a vent battery will last 3-4 hours.  We took 3 because we wanted to be sure we had enough battery to last all day if necessary.  We have found that the higher the settings, the less time the battery lasts. 

Sleeping--We have found it easier to let Noah sleep on a blow up bed.  We bought a twin blow up mattress and I take a twin sheet with lots of blankets.  Upon arriving at our destination, we move the furniture around if needed.  All places are different but we usually have the same setup.  We put the blow up bed by our bed and use a nightstand for the vent.  The heater goes on the floor, as well as the sat monitor.  If the nightstand is too tall for the circuits to reach, we use a small upside down trash can or a small stool.

Taking equipment to attractions-- One of the biggest challenges is trying to figure out how to carry all the equipment to different attractions.  When we went to Disney, we took our large pack and play stroller.  When we went to the beach, we took a wagon.  The wagon was too hard to pull in the sand so I ended up getting a large beach bag in which to put the suction machine.  We have recently returned from a trip to Washington DC.  We really didn't want to take the large stroller, especially on the Metro so we had to come up with an alternative.  We ended up using a collapsible luggage cart and purchased a lot of bungee cords to secure the equipment to the cart.  Instead of taking our large stroller, we purchased a small, cheap umbrella stroller for Noah to ride in when he got tired.  When he wasnt using it, we strapped it to the luggage cart.  This worked extremely well.  The only downside was when we had to undo everything to get through security. 

A few extra tips--I always keep a spare circuit in the car for emergencies.  I use a laundry basket in front of Noah's seat in the car that holds the vent in place.  I keep his nebulizer equipment in a ziplock bag that I can just grab and put in the suitcase without unpacking it. I always have Chris double check the supplies/equipment to make sure I packed everything. 

As you can see, traveling takes a little extra planning but with careful packing we have never had an issue with not having anything we needed. 

Here is an example of how we set the vent up when we went to the mountains during spring break.  We try to hang the water bag but if there's no doorknob or hook then we just prop the water bag in front of the vent.  Here, the table was just the right height but if it is too tall, we place the heater on a small overturned trash can or a small stool.  The sat monitor is not shown but we put that on the floor by the heater.  I always take his current size trach and one smaller to put next to the ventilator. 

Here is the luggage cart with the equipment.  This worked very well when we went to Washington since we did a lot of walking and riding the Metro.

This was taken a few years ago at a beach house when Noah still slept in a crib.  There was a handy hook on the wall that I used to hang the water bag.  We used a stool because the circuit wouldn't reach from the table to the crib.  (Please note that we did not take a crib with us.  There was already one at this beach house).  The extra trachs are behind the ventilator.

This is the setup we used when we went to Disney.  We cut a hole in the pack and play to accommodate the vent circuits.  The vent is not shown in this picture but it is on a table on the right side.  (Please note:  We cut the mesh horizontally but realized that cutting it vertically would have made it easier to drain the circuits of water.  I had to pull unhook Noah from the circuit and pull it back through the mesh to drain the water.  This was a huge pain.  If we had cut the mesh vertically I could have just raised the circuit up to drain, rather than having to unhook him).

This is our very first beach trip after Noah was released from the hospital.  He was still small enough to sleep in the pumpkin seat.  As you can see, the vent is on its stand on the nightstand.  The heater is below on an overturned trash can and the water bag is propped up in front of the vent.  This is the same setup we use now except instead of the pumpkin seat, Noah is on a blow up mattress (as shown in the picture above).

The setup remains pretty much the same wherever we go.  We usually have to move a lamp off of the table or sometimes move the bed over to accommodate the blowup mattress.  There is usually a nightstand but once we went to a volleyball tournament and stayed in a motel that did not have one so we used a sturdy chair on which to put the ventilator.

We have learned to become very inventive.  It does take a little time to set everything up but with patience and imagination, it can be done. 

Noah's Story

Early morning, August 26, 2009 I was awakened and knew it was time to go

to the hospital.  We made arrangements to get the girls off to school and

we packed and headed off to St. Vincents Hospital to meet our son, Noah.

He was originally due September 22 but I knew he was at a decent weight because I had been to the doctor the previous day.  I was a little worried, but not overly concerned.

Noah arrived in the world the morning of August 26, 2009. He did not make one

sound whatsoever when he was delivered, which worried me.  I continually

asked the doctor if he was ok and she assured me that he was fine.  There

was a small nagging doubt that kept telling me something was wrong.  After awhile, Chris left to check the girls out of school and I settled in to hold

Noah and rest.  The nurse brought him to me fresh from his bath.  As I

was holding him, I noticed a small blue tinge around his lips.  The

nurse came to check on us and I showed her.  She immediately took him

and checked his vitals, reporting that his oxygen was a little low.  She

gave him some o2 and worked with him for awhile.  After about 15

minutes, she took him to the nurse’s station so she could keep an eye on

him.  It wasn't long before she returned (without Noah) and informed me

that he had to go to the NICU because his oxygen kept dropping and there

was no way for him to be monitored in my room.  She asked if the girls

were close to coming and stated that if they were 5 minutes out they

would wait for them, otherwise he was going on to the NICU.  In a panic,

I called Chris to find out that they were in the parking deck.  So the

nurses wheeled Noah in the room in an incubator.  I held him while the

girls talked to him, touched him and kissed him.  They only let them see

him for 5 minutes then he was wheeled to the NICU.  It all happened so

fast, we had no time to process it.  The girls kept asking where he went

and why couldn't they see him.  I was extremely upset and it was so hard

to keep composed in front of them. 

There were no first family pictures, no pictures of Noah with his grandparents, nothing but tears and fear. This was the year of the swine flu and the NICU did not allow anyone except parents to visit.  Because of this, nobody except Chris and me got to see Noah until he was 4 months old.

We were first told that he would be able to go home with me.  But the day came and they said, he would stay another week so I packed up and walked out of the hospital without my baby.  It was the hardest thing I have ever had to do.   We visited daily.  It was extremely difficult having a child in the NICU and 2 children at home.  After the girls left for school, I would drive

to the hospital and stay with Noah until it was time to leave to meet

the girls at the bus stop.  We would do the regular after school things

of homework and dinner.  When the girls had gone to bed, Chris would go

to the hospital to see Noah.  On the weekends, we would get a sitter and

stay with him a few hours on Saturday and Sunday. 

Noah had many different tests (MRIs, Blood Tests, Genetic Tests, etc).  Everything came back normal.  He would desat down to the 80s and then before the nurses could even come check on him, he was back up to the upper 90s.  This was constant.  He would do this all day and all night and they couldn't figure out why.  He was eating fairly well. He was fine other than the many desats.

Then, a week after he was born he hit rock bottom.  Chris had

gone to see him that evening and he called me when he got to the

hospital.  His voice was shaking and he said they had closed the NICU.

I asked if it was Noah and he said he didn't know because they weren't

letting anyone back there.  I hung up the phone with him promising to

call me soon.  I immediately knew it was Noah.  I just had this horrible

feeling and a deep blackness overcame me.  I began crying hysterically,

trying to keep quiet so as not to frighten the girls.  Not too much

later, Chris called me and I have never heard his voice sound so sad and

scared.  He informed me that Noah had a seizure and they had to intubate

him.  We were terrified.  They said his CO2 was too high and they were

giving him phenobarbital to prevent more seizures (in retrospect this

was not good because it was depressing his breathing even more but at

the time we didn't know his diagnosis).  The next day, they asked

permission to give him a blood transfusion.  They had taken so much

blood from him for tests that he needed more.  Seeing him laying there

with a tube down his throat, tape all over his face, iv in his head,

wires all over and blood on the bed was the most terrifying thing I had

ever seen.  The depression hit full force and I feared for his life.

This was our life for another week.  The doctors would come talk to us

in hushed tones.  The nurses would give us sympathetic looks and pat our

backs.  We watched many babies come and go from the NICU but there we

sat with no end in site.  I began to dread going to the hospital but I

felt so guilty when I wasn't there.  It was killing me to see him like

that.  He was never awake and we did not get to hold him.  They stopped

feeding him by mouth and gave him an IV.  The lowest day was when the

doctor told us they could not care for him anymore.  She informed us

that he was being transferred to our local children's hospital, which in

retrospect was the best thing that could have happened.  With deep pity

in her eyes, she informed us that they suspected that Noah had Ondine's

Curse or Congenital Central Hypoventilation Syndrome, a very rare disease.  She said that he would be on a ventilator the rest of his life and would most

likely have to be institutionalized.  She said that she had only seen

this extremely rare disease in a child one other time.  She handed us a

short 5 paragraph medical paper and told us she would let us "process the information" and then she walked off.  We were devastated.  How is a parent suppose to process that information?  They gave us no hope, no information and it seemed as if they had just washed their hands of him. 

Shortly thereafter, Noah was transported by ambulance to children's hospital.  I did not get to go because I was at the doctor with Hannah, who had the flu.  Chris made sure he got settled in and took some pictures for me.  Unfortunately, I got the flu also and could not visit Noah for 2 weeks.  It was truly the worst nightmare. 

Once I finally got to visit, the whole atmosphere was different.  The nurses were encouraging.  Noah was awake and the nurse asked if we wanted to hold him.  In shock, we asked if we really could and were told that they encouraged it.  I finally got to hold him after 2 weeks.  The pulmonologist did a sleep study, which Noah failed miserably. 

I remember the day we finally got a diagnosis.  We were visiting Noah together (Chris was on his lunch break) and all of the doctors and nurses gathered around Noah's bed.  I immediately became nervous.  The pulmonologist informed us that the test had came back positive for Congenital Central Hypoventilation Syndrome (CCHS).  I immediately broke down.  The doctor kept talking but for a minute there all I heard was a roaring in my ears.  The fear was overwhelming.  I had visions of having to send him out of state to some institution and never being able to see or care for him myself.  I slowly began listening to the doctor.  He told us that the diagnosis was scary but that Noah would be up in no time running around like every other child.  He told us that he would be able to go to school, play ball and do everything else (except maybe scuba dive).  We were told that we would have to have extensive training before bringing him home and it was still going to be awhile before he was released from the hospital, months not days.  I was horrified and elated at the same time.  We went from being told that he

would live in an institution to being told that he would not only be going home but that he would live life like any other child.  It was an extraordinary amount of information to process.  We went home and got on the computer, which was a mistake.  There wasn't a lot of information out there and we really felt so alone and scared. 

That evening, we got a call telling us that they wanted to do trach surgery the next day.  We consented and went to the hospital after getting the girls off to school.  The surgery  did not last long and we were able to see him soon after.  That first glimpse of him was amazing.  For the first time since he had been born, we saw his little face.  It was a little red from the tape, but he was sleeping so peacefully.  The trach looked scary but he looked so

much more comfortable.  The thing that scared us was that his breath

rate on the vent was up to 55 bpm and he was not taking any breaths on

his own.  The ventilator was taking every breath for him.  They informed

us this was because of the sedation. 

The next day, he was awake and alert.  His breath rate was down.  After about a week, they told us that he would be moved to a floor as soon as they had a bed for him.  We were so excited.  This was one more step closer to coming home and the girls could finally come visit him.  The day finally arrived and he went to the pulmonary floor.  What an amazing day.  The girls got to hold and snuggle with him and we finally got some pictures of them together.  He

was 2 1/2 months old.  We still could not stay there with him because the room he was in had no bed for us but at least we could let the girls visit whenever we wanted and stay as long as we wanted. 

The nurses slowly began showing us how to suction and we began asking a lot of questions.  The home ventilator team met with us and explained exactly what would happen. We decided to allow him to have a g-tube so that we would get to take him home quicker.  He was eating, but not enough to sustain him.  They felt that this was because he had been IV fed for so long. 

After the g-tube and trach site had healed some, we would begin our training and train for 3 days a week for a few hours.  Our training included doing

everything 3 times each (bathing, cleaning the trach, changing the

trach, suctioning, changing the circuits, doing a bolus feed, etc).  We

decided that I would train while Chris worked, since he was our only

source of income.  My mother and mother in law agreed to be trained as

well. 

We began our training on my birthday, which was the best present

ever.  For the next month, we learned as much as we could.  We had an

excellent home vent nurse who made sure were were thoroughly trained.

We learned in one month what it took professionals years to learn.  We

took lots of notes and knew that we were not eligible for nursing care

at home so we paid close attention.    We learned quickly and they told

us they would try their best to have us home before Christmas. 

December 15, 2009 was Noah's homecoming.  It was a day we never thought we would see.  The homecoming was a little crazy because Hannah had a stomach

virus and the DME had to meet us ASAP because Beth had her first band

concert.  My mother in law stayed with Noah while we went to the

concert.  The first night home, I didn't sleep at all.  Our dining room

looked like a mini ICU.  We had him hooked to the vent, pulse ox, apnea

monitor, and feeding pump.  He looked like a little science experiment

laying there but we didn't care.  He was finally home. 

Slowly, we began to get in to a routine.  I was able to wean him off the vent.  I realized that I could do this.  Then, he got sick.  Never had he had

oxygen in the hospital but now he needed oxygen.  I was so extremely

stressed for the week he was sick.  He was ventilated 24/7 and I was

constantly suctioning and dealing with alarms.  Christmas day, he slept

a lot.  We really didn't care because we were all together.  Eventually,

he got better and our routine returned to normal.  

3 months after coming home, we took our first trip to the beach.  It was the most amazing trip we have ever had.  He loved it and we were elated to

realize that we could do this and live a relatively normal life.  The

darkness was over.

Noah is now a happy, healthy 3 year old.  He is off the vent during the

day and we trach his cap.  His speech has improved greatly after 3 years of speech therapy and he has proven to be so smart with a great sense of humor.  He is our miracle and our blessing.  We have learned so much from him.  I never tire of hearing him run around the house aggravating his sisters and being a real boy. I never thought we would get this far.  We do not know what the future holds.  Hopefully we will be able to have him decannulated and just use a bipap.  We may even do the diaphragm pacer surgery.  Attending school is our next big hurdle.

Life is never boring with our little miracle man.  We are always doing research on CCHS, constantly having struggles with the equipment company, insurance, and doctors.  Slowly, we have learned how to live with a special needs child.  It has been rough at times but worth every minute.  

Before the CCHS diagnosis

Our first pictures together

After trach surgery

Before trach surgery

Noah age 3

At the beach

At the park