What it's Like The Harsh Reality

Well here I come again with an update that may be hard to read, but after writing something today for a video that is being made I wanted to get it all out on here too.

The video that is being made I was asked what it is like to have a child with a CHD.  So many things came rushing to my mind when I thought about my response to this question.  It was at this moment that I realized there are so many things to say about tit as well as for me and so many others it is not something that always ends with a happily ever after.
Finding out that you will give birth to a child with a CHD is heart breaking.  The news itself is devastating.  You quickly come into a realization that bad things happen and you are touchable.  You become familiar with terms that you never heard of before and you research the defect that your child will have.  You begin looking for doctors and specialists.  You search out hospitals that you know can handle your child.
In the meantime of all this you are still anxiously awaiting the birth of your baby.  You are preparing to have a baby.  You are falling in love with your child as you feel them mving and kicking inside of you.  You are imagining all the things that your child will do and what he will do and what he will be like.  You are going to doctors appointments to listen to their heart and get pictures of them and their heart.  It was having amniocentisis' done to check on his chromosomes and lung development.  It was going through a crazy pregnancy and worrying all the while you were happy that you were having a baby.
It was finally the day I would meet him.  It was the anxiety that he would be here, but I had no idea for how long.  It was knowing I was hours from home and had no idea what to expect.  It was preparing for my c-section and being terrified and excited all at once.  It was being wheeled into a surgery room knowing that within an hour he would be a part of this world and I would no longer be able to supply everything he needed.  It was the scare that if he was not in my belly he was no longer safe.  It was being told they were starting the procedure and all of a sudden it was hearing the most beautiful sound in the world.  Yes he cried and I heard him, but I did not get to see him!  He was alive!!!!!  He came out alive even though they prepared me that he may not.  But he was alive and I heard him cry though I had not seen his face.
It was my recovery while they swooped him off to a room to start IV's and monitoring and Prostaglandin.  It was being tired from the surgery, but trying to convince them I was alright enough to meet my son.  It was seeing a little video and some pictures until I could see him.
It was calling and asking if I could see him for them to tell me he was just intubated and I could be wheeled down, but would not be able to hold him.  It was 4 1/2 hours since he was born and I got to finally meet my son.  It was terrifying to see him like that.  It was thinking that this can not be happening and knowing that it was.  It was nurses everywhere and being told all that was happening.  It was dedicating him to God right then and there not sure of the future.  It was being wheeled away from him knowing I just wanted to stay by him and couldn't.  It was being taken out of the NICU down the hall around the corner and down that hall away from him.  It was hours later pushing myself to prove I was OK enough to get in a wheel chair to go back to his incubator.
It was being scared while I sat there and listened to everything beep.  Having to have everything explained to me about what was happening.  It was wanting to sweep him up into my arms and run away with him.  It was wanting to protect him knowing I couldn't.  It was praying and begging God to fix his heart.  It was feelings of guilt that I put him there.  It was knowing that I was his mommy and I could not do a damn thing for him.  It was the realization that as a mommy my super natural powers of kissing away boo boos would not work this time.
It was crying myself to sleep that first night as my baby was not in my room and I was al alone.  It was having Ethin in the NICU and him being transferred to a different floor.  It was again falling asleep now a whole floor away from my baby to be woke up the next morning by the nurse taking care of him telling me he was getting a blood transfusion.  It was being discharged and going up the elevator looking like death warmed over to sit next to my son in the PCTU.  It was being told there was a room for me at the RMDH which meant leaving the hospital.  It was the day they told me he would have surgery in a couple days.
It was the day of his first open heart surgery he was six days old and I would finally get to hold him.  It was going in there and having them place him in my arms I had waited for so long.  It was praying and hoping that God would bring him back for me to hold again.  It was them taking him out of my arms to take him to the OR.  It was a let down of tears knowing I may never see him alive again.  It was waiting in a waiting room to hear updates of how things were going.  It was finally seeing his surgeon appear through the doors to tell me how things went.  It was hearing the surgeon tell me he was in critical condition and looked very sick.  It was waiting for them to come get me to see my son I had waited all day.  It was all night sitting there knowing he was not doing well.
It was the recovery it took weeks.  It was finally being able to change a diaper and put him clothes, and finally feed him.  It was learning how to place a tube down his nose, administer meds, and check for signs of heart failure.  It was making new friends you would forever be connected.  It was your heart breaking when their babies fight was done.   It was finally being told we would go home.  It was coming home and being terrified I might screw up.  It was trying to find normalcy in a hectic world that we had entered.  It was when things finally seemed OK that it was short lived and back to the hospital we would go.  It was following the ambulance three hours to the hospital praying he would make it there.
It was entering the hospital we had just left knowing he was very sick.  It was being exhausted, but knowing you just could not sleep.  It was watching him stop breathing multiple times and hearing his doctor say I have to intubate him and get a line.  Really it was walking back in seeing him like that knowing I was not ready.  It was another recovery and coming home once again.  It was having my family all together for 3 short weeks.  As it was back to the hospital he would never leave alive again.
It was a heart cath and echos, labs and blood draws.  It was his surgeon coming to tell me surgery was not far away.  It was the night before surgery and I could not sleep.  It was making sure I was there and awake to give him his last bath before surgery and his last meal before morning.  It was being wheeled down with him in my arms to the surgical holding.  It was having the anestegiologist come and take him from my arms.  It was crying and waiting all day long.  It was done he was back in ICU and he was not doing well.
It was being told my child may not make it through the night.  It was emergency chest opening at the bedside and life support being considered.  It was days of being told we are not sure if he will make it.  It was having him baptized he may not live.  It was the call 6 days after his surgery and they said you need to get here now.  It was getting there and being told he was having an emergency open heart surgery or he would die.  It was waiting and praying again that God would hold him in his hands and bring him back to me. 
It was days later he was doing much better they said he could breathe on his own and they placed him back in my arms.  It was holding him again thankful that he fought so hard and was doing much better.  But quickly that changed when I left and was called to b told he was being reintubated.  The next morning being told he would need a surgery on his diaphragm as they had knicked the nerve and it needed to be sewed down for him to breathe on his own.  Surgery again you have got to be kidding.  But all would be well for a bit and recovery would begin.  It was being moved out of ICU.  And fighting with caretakers they just did not always listen.  It was back in ICU he just was not ready. 
It was tears as the days were long and the nights were longer.  It was intubation and extubation it was learning that it had to be slow all on his terms and time.  It was watching his doctor put his head down when things were not good.  It was learning the faces of something gone wrong.  It was having other kids back home and missing them so.  Spending mother's day in the ICU but we were all there together.  It was hoping for tomorrow unsure of the day at hand.  It was finally out of ICU and things would be slow.
It was weening and learning to eat all over again.  It was more changees of doctors and adjusting to the floor.  It was a benefit that would be held back home my prescence was expected.  It was preparing to come home I would be gone for a couple of days.  It was team meetings and making a plan.  It was knowing I would see my other kids, but Ethin would be home in just ten days.  It was saying goodbye to him kissing his head telling him how when I came back I would not leave without him again.  It was being home and calling many times while I was there.  He was getting his first tooth when I left I would only be gone for a couple days.
It was the day of the benefit I called before we went.  It was the phone ringing his nurse was on the other end.  It was knowing immediately that something was terribly wrong.  It was hearing the worst words ever and falling to the ground knowing I would never reach him in time.  It was grasping at friends, screaming for help, it was gasping for breath I swear I thought I would pass out.  It was the race of against time that I knew would not matter.  It was the phone ringing once again it was Bryan his doctor I knew this was the end. 
It was hearing him say the words I never wanted to hear.  It was hearing the sadness in his voice as he told me how sorry he was.  It was falling to my knees on the side of the road begging for life support and finally admitting defeat.  It was crawling back into the car crying and calling people that needed to know.  It was a long ride back to the hospital.
It was coming off the elevator running to the room which I knew he would be in.  It was seeing him lifeless and wanting so badly to wake him up knowing I never could.  It was feeling defeated and knowing as his mother I could no longer do a thing to help him.  It was seeing the tears in the eyes of nurses and his doctor looking completely defeated.  It was bathing him one last time, dressing him one last time, napping with him one last time, seeing the sun touch his face one last time.  It was knowing that I wanted to go back to the day before.
It was coming home with empty arms not wanting to eat or to live.  It was planning a funeral and writing an obituary I did not want to do it.  It was picking out a casket and finding a place to lay him to rest.  It was bible verses that needed to be read and music that needed to play.  It was saying thank you for coming not feeling thankful at all.  It was the day I had dreaded and it was hard.  it was walking into the church and knowing this would be the last time I would ever see him in this life.  It was tucking my sweet punk in one last time.  It was last kiss I would ever lay upon his head.  It was tears as they brought him into the service and more as I followed him out.  It was watching them lower my son into the ground knowing I needed to fight for him to stay alive.  It was weeks later a headstone was placed.  And a month later balloons in his name.
It's been blankets given out, balloons released, months gone by, money from a ball, proclamation writing, and constant reminding that Ethin's Heart Still Beats in us.  It has been the worst hardest, most awfully amzing and beautiful journey I have ever been on.  This is what it is like to have a child with a CHD.

I will be updating again pry tomorrow as some very hard things are happening right now, but I needed to write all this out after I was asked this question.

Please pray for Zachary Yeager's family as Zachary earned his wings this morning.
Jordan is home
Logan is doing well
Derrick is extubated!

Blessings,
Jessica