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I went in to the hospital on June 3 the day after my son Colin’s 3rd birthday because I was not feeling fetal movement.  They were able to get him moving  but his fetal tracing was off.  This is the whole reason they decided to induce me on June 4 was because of his fetal tracing.  Nothing that had them wanting to rush me off into the operating room just enough that my doctors said lets induce.   I had even had a sonogram that morning to check out his heart and it all looked perfect. ( I had the technician print out a pic of his heart to put in his baby book that I could say to Scott one day you know what you did…that pic is still buried in my too be filed paper box.  Can’t shred it, can’t do anything else with it so it just sits there) my doctors had no real reason to expect anything significantly wrong.  I was told to expect him to be in the NICU for a couple of days because most likely his lungs would need to strengthen. 

I got to deliver Scott vaginally he was out in one push.  Dr. Mudd hadn’t even finished putting her gown on and he was out.  He was rushed to the bassinet where I find out later they performed chest compressions to jump start his heart.  I remember them yelling for a crash cart.   I did not hold him till he was a day old.  It was because of the Nicu nurses who are on standby to run down to labor and delivery when needed that I got two weeks with Scott.  If we would have waited longer to have Scott he most likely would have been stillborn.

I had a nurse Diane who made sure once the epidural wore off (and maybe she helped me “fudge” it a little) that Mike and I were taken to the NICU to see Scott.   Diane stayed past her shift that day to make sure we got up to see Scott.  Scott just laid there.  He was the most beautiful baby, looked a lot like Colin but with wavy brown hair that I hoped he would keep.  He was silent and so very still like he was in a coma.  They told us that 48 hours was the “magic” number that is when you get a read on what’s going on and what’s going to happen.  I had no worries I knew he was going to be okay.  I realize now the wall of denial went up as soon as he was born and possibly as soon as I entered that hospital.  The denial is how I lived for the next week and got out of bed every morning.

The next day Mike went home to get Colin and I went up to the NICU.  Nurse Angie was the sweetest nurse who was busy chatting away and it came up I hadn’t held him.  She was aghast when she heard.  She told me I don’t care how many tubes and wires he’s hooked too you’re holding your baby.  So I held Scott for the first time.  I talked to him, I hugged him, I sang to him.  I could not wait for Mike to come so he could see me holding Scott.    Colin met his brother that day and Mike held him too.  We met Dr. Abibi for the first time.  If you talked to me anytime during those two days you would hear how much I hated that man that he was just trying to scare me.  I realize now he recognized the severity of Scott’s condition and was doing everything possible to get him the best care possible.    Later that day because of Dr. ABibi  Dr. Greene the genetics doctor became a significant part of our lives.  She was coming to the NICU to do rounds and Dr. ABIBI had her squeeze in one more patient.    She came to examine him.   We watched her put one of those metal lights down our son’s throat and he never reacted.  Did not cry, did not gag, and did not move.  Mike got a clue than I still shrouded myself in denial.  Dr. Green was honest with us and told us she has seen worst off patients so there was still a chance. Dr. Abibi is suggesting a possible move to another hospital that is making me angrier.  That night my brothers came and their spouses.  Elena brought the baby announcements she had made bags of microwave popcorn with his stats.  I never got to hand those out it’s the little things like that, that bother me the most and make me the most sad.  Never getting to celebrate his life.  They all met Scott and I think they probably saw the writing on the wall after meeting him.  I had so much information thrown at me that day that I could not be by myself so I had Mike spend the night.

The next morning Mike woke up sobbing and could not stop.  We got someone to come in and talk to us.  I find out a week later Mike had realized what Scott’s fate was that morning but he would not share it with me he knew I had to come to terms with it myself.  So I now have a husband who knows his baby is going to die and a wife who had no clue and won’t accept reality at this point.  We visit Scott he’s the same a tiny bit of movement but still no primitive reflexes and still no opening of his eyes.  I get released that day and I refuse to be wheeled down in a wheel chair.  If I’m leaving with empty arms I am leaving on my own two feet. (I remember the joy of being wheeled out with Colin in my arms)  I don’t bother to dress, or comb my hair or even put on shoes.  The nurse had to write me a note in case I was stopped by security because I would have looked like a patient escaping.    Dr. Abuleo had offered to come up with an “illness’ to get me admitted longer but I honestly could not stay there.  I needed to go home and see Colin and be able to get away. 

We had just gotten home from picking Colin up at my parents when the call came.  Dr. Abibi is asking for permission to transfer Scott to UMMC.  They think they know the problem it’s something with the brain.    I’m apprehensive about him moving but we are told it’s a level IV Nicu and one of the top in the state.  Mike tells me it’s for the best so we agree.  He is transported that night by ambulance.   I am feeling very light hearted because I have decided in my head they know what is wrong and he’s going to be okay. They’re going to fix him.

The next day we go visit Scott.  I hate the hospital.  We had asked someone where the closest garage was and it ended being the farthest one so we are walking through a very “sketchy” part of town to go see our son.  We get into the hospital and get lost and cannot find the NICU.  I’m telling Mike this was a huge mistake.  Our child was taken from wonderful nurses and sent here.  I get up to the NICU and we have to wait.  I learn very quickly that you do a lot of standing around and waiting in the NICU between shift changes, rounds, etc.  We finally get in to see Scott and he has all these wires attached to his head.   We get assigned a social worker and we meet the doctor and he has a really nice nurse.  No one knows his name.  I am so sad by this I want to stand on a chair and yell that his name is Scott.  He is being called baby boy Miller I hate this more than I probably should but I do.  We tell them his name and they say the night nurse will make a sign that night.

The next day we find better parking, we know where we are going and we realize this place isn’t so bad.  I go in and they didn’t just scribble his name on a piece of paper they used marker and creatively wrote his name attaching it to blue paper.  Mom feels good.  Scott has another great nurse and we talk to the doctors to figure out what could possibly be going on they are just running test after test after test.    He does seem to be showing more movement and resistance in his limbs. (Mind you that it’s still very insignificant but when your child has had none of that it’s huge!)  The days go on and we are flooded with info and meeting specialist after specialist.  We are fortunate that Dr. Green the genetics doctor and Dr. Falk his “regular” doctor are very kind, and compassionate.  They aren’t like some specialist can be very cold and uncaring.    I came to a realization a few weeks ago that every doctor and nurse had probably figured out that Scott didn’t have a chance yet they still let us have our hope without encouraging it.  This may sound crazy but they knew how to walk that fine line.  We got to bathe Scott one afternoon, and take his vitals.  We got to feed him by pouring formula into a tube in his mouth.  We held him till our arms hurts.   Then that Monday came he was almost a week old.  He opened his eyes.  This is huge and not only that he even has more mobility and is showing more resistance.  He opened his eyes for the nurse that morning and then for us when we came.  Even Mike gets hopeful at this point. 

We are so excited about this that I make him a happy one week sign to take in the next day and find a family photo to hang in his bassinet.  We go through hell that Tuesday to get to UMMC.  The president is in town and it has traffic at a stand still.  We manage to get to an exit and get home.  I could not go a day and not see my baby so Mike finds a back way.  We get there and it’s good I did because I got my wake up call to snap out of it and see what was really happening.  Scott is having a horrible day.  You would be holding him and he would stop breathing for about 3 seconds gasp then start breathing again.  It was nerve wracking.  We leave their very heavy hearted and not looking forward to the big meeting with doctors the next day.  Driving home I tell Mike what I have now figured out.  I realize he is not doing well and there is a chance he is going to die.  Mike tells me yes and that he has been waiting for me to come to terms with this on my own.  He didn’t want to be the one to tell me especially since we had no clue what type of decisions we were going to have to make and he wanted me to make decisions myself.

The next day we get there early to spend time with Scott before the meeting.  Dr. Falk asked to speak with us.  She takes us into the conference and sits us down and tells us that she wanted to share with us before the meeting.  She confides in us that things are not looking good for Scott and that he probably will not live. They had to “bag” him the night before.  She leaves us to have a moment alone and we just sit there and cry.  Mike calls our minister to come and baptize our baby.  Then I have to make one of the hardest calls of my life I have to call my dad and tell him what we’ve been told.  Our minister is there within the hour and sits in the meeting with us.  We sit at a conference table with 8-10 specialists, a social worker, and the hospital minister.  The results are not good and the info they are able to give us is not good.  Talk about overwhelming.  Trying to ask questions without sobbing, trying to understand what is being said.   Hearing all this talk of genetics and genetic disorders.  Waking up and taking notice when you here a phrase with your other son’s name and totally misinterpreting what is said thinking at first that something it going to happen to Colin.   Finding out that as parents we have the right to make the decision to take Scott off of life support if we think it’s in his best interest.  Then afterwards sitting there dumbfounded and wandering how in the hell we ended up here and the big question why??  Hating that all you are doing is crying when you should be doing something, anything.  Then going with your minister in to see Scott where they have partitioned it off to give us privacy so Scott could be baptized.  A 5 minute ceremony done in a hospital NICU not the big celebration I had started planning weeks ago.   Leaving that day and wanting nothing more than to go home and hug Colin.  But before you can leave you have to tell the doctor your decision to give a DNR order on your son.  Going home and having your prayers turn from asking for your baby to be healed to asking God please just take him. Don’t make me have to make that decision. Hoping you will get a phone call saying he has passed so you don’t have to make the decision.

Then it happens I go from to Denial to making the decision I’m going to do what I have to do and stay clear headed.  So I go into robot mode.   I will not let anyone come near me to hug or give comfort.  I push my mom away, my SIL anyone who wants to give comfort.  I sometimes wouldn’t even let Mike hug me.  My dad comments to me on this and I simply tell him if anyone touches me I will crumble.  I couldn’t crumble because I didn’t know if I would be able to pick up the pieces and I had to be there for Scott and Colin.  I knew I had some really hard life decisions to make. 

So now we face when.  When do we make the most horrible decision of our life?  How do you know when it’s time?  We wrestle with this and then that Friday we are leaving and they are trying to put in another IV after another one has failed.  20 minutes and they still haven’t gotten one.  We leave while they are still trying.  We go in the next day and it hasn’t been 24 hours and that IV has already failed.  We really look at Scott.  He has bruises all up and down him, he can’t keep an IV, yes he opens those eyes but there is no one there.  We realize we can’t keep letting Scott be a Science Experiment.  This is what he has become and we say enough.  We decided it’s time to let him stop the suffering.  We call family and tell them our decision and if they want to come say good bye.  We go home to get Colin.  By the time we return 2 hours later they have cleared out the area around Scott and put up a partition so we can have privacy.  We take photos, Colin sees his brother one last time and says good bye.  To tell your son to kiss his brother and tell him you love him because this is the last you’ll be able to is indescribable.     We leave with heavy hearts.

The next day Father’s Day we go in were Scott now his own private room.  He has a Happy Father’s day sign that was made by the nurses with his hand and foot prints.  We meet with Scott’s doctor and have a conference call with the genetics doctor who is out of town.  We give them our decision.  But it’s not that easy we have to decide autopsy, partial autopsy, bank blood, bank skin cells and so on.  I tell Mike no autopsy we are doing this to stop his suffering he will not go through it after he has passed.   All machines are removed later that day.  I kiss my son one last time and leave.  Mike and my brother spend all of Father’s day sitting in a NICU waiting for Scott to die.  Scott died in Mike’s arms that night then came back to life.  Mike says it will haunt him forever.

That Tuesday My son is still hanging on.  We go to the funeral home to finalize funeral plans.  Scott had a funeral because of my parents.  I would not give thought to planning one.  I said small and let them take the reins.  I went to the meeting because there were decisions and papers that had to be signed by me and Mike.  I came close to running from the room when the pamphlet came out to pick out coffins and headstones.  But I knew if I left I wouldn’t ever come back into that funeral home.  So once again my robot function kicked in.  I left that meeting and knew I had to go see Scott.  I went and you could tell he only had hours left.  I was refusing to hold him but his nurse made me.  I am so grateful now that she did.  When I left I kissed him and told him he could let go.  I told my son that it was okay for him to die.  That night we got the phone call.

Mike decided to get us out of town after the funeral so we went to the beach that is when I finally let my guard down and starting grieving.  I went into a deep black hole of depression.   It was bad.  Mike made me get out of bed everyday and made me go to the beach etc.  I was making myself continue to be sad by thinking all sorts of bad things.  When we got home I got out of bed because I had to make Colin’s breakfast.  After he was fed I would lay on the couch while he played or lay in his bed while he played.  Usually around 10 I would force myself to shower and dress and take Colin out of the house.   

I found out at the end of summer that my son had practically no brain function. Yet he knew who I was.  He would only open his eyes for me after the first big reveal.  He would squeeze my finger and he would squeeze tight when I held him.  I struggle with this everyday on how did he know?

Slowly I started to climb out of the hole and I am where I am today because of family, friends, and therapy.  So that is Scott’s story and the hell that was my life during that summer.