Wednesday, June 5, 2013


There are so many pieces of that night that I didn't include in the What Happened post.
Pieces I'm ashamed of.  Pieces I feel so guilty about.  Pieces that hurt so very deeply and so badly that I feel like my heart stops too when I think of them.
They are pieces I thought only I felt, pieces I thought that I was so weak that I couldn't handle and that others were so much braver and stronger.
In the few weeks that have already passed I have spoken to other moms.  Each of our journeys are as unique as our fingerprints but that being said there are some things that were the same over and over and over.  Surprisingly some of the things I am so ashamed of and feeling so weak about are some of the big things I keep hearing over and over from others.
Others are just as afraid and ashamed to say these things.  It's so sad that we are all so scared to say these things out loud for others following in our painful footsteps to know.  For others who come after us to see that these things are normal, these things are ok, these things don't make us bad.  These things come from intense pain, so much shattering pain that our bodies simply can NOT handle it.

I reminded myself that I have always vowed to stay open and honest.  I have vowed to share our journey, raw and unedited.  I don't want others to think they are alone.  So here it is.  Raw.

When Eli had his first seizure I collapsed in the hallway against a chair. I couldn't be in the room.  They got him "stable" at that point and I went back in.
When Eli had his huge seizure in our arms and stopped breathing I ran out of the room and collapsed on the floor screaming.  Someone came to me and tried to help me.  I couldn't move.  I could only scream.  I stayed in the hall for probably an hr.  2 nurses and a chaplain held me up.  I couldn't move.  I couldn't go in Eli's room, I couldn't even look in there.  I could hear them.  I could hear the beeping.  I could see the monitor in the hall flashing 4-6 for his pulse ox for almost 1 hr.  I could only yell questions at my husband.  I couldn't step in there first hand to see what was happening.  I made my husband be there with Eli and all of the doctors standing at the end of our sons bed while they intubated and bagged him.  I grabbed his nurse at one point as he was trying to get to eli and told him to save my baby.

I couldn't walk or stand without holding on to someone or something.  I felt like nothing was real.  I didn't feel as though my feet were on the ground or that the world was holding me upright.

At one point during the night I had to go to the waiting room.  I layed down.  I couldn't sleep.  I was so dizzy and nauseous I could no longer move.  I layed with a blanked pushed over my mouth as hard as I could to try to keep from throwing up and to stifle the screams that were inside of me.

When my husband came to me after maybe 30 or 45 minutes he told me that they were trying their last thing.  The hail mary vent.  He said it wasn't working.  He said I needed to come.  I laid there staring blankly.  I didn't flinch.  I didn't cry.  I didn't move.  Finally when I was able to move I first walked to the bathroom to be ill, before barely walking back to my sons room.

I went to Eli.  I begged and pleaded with him to be strong.  I told him over and over how strong he was.  How he had to keep fighting.  I never once told him that it was ok.  I simply pleaded with him to keep fighting.  It never once crossed my mind how much pain he might be in, I just pleaded with him to not give up.  I cried a million tears on him.

I made his primary doc make some calls.  I made him decide when to bring the kids.  I made him talk to the kids.  I couldn't do it.  He sat them down.  He talked to them.  He told them what was happening.  I sat there blankly crying and staring.

I called up a good friend of ours early in the evening.  She spent the entire night with us.  She had to go thru the torture of such a night.  Another friend had to come up with the children.  A good friend of ours had to be with us all night taking photos of every moment.  I pulled people into this night that didn't have to be there.   I asked them to be there because I was to weak but this made them have to experience this pain too.

I made my husband stay at the foot of Eli's bed.  I didn't let him leave him because I was to weak to be there.  My husband didn't pee, not 1 single time in 16 hrs.  He stayed there.  He watched every single second, without his wife by his side at times.

I didn't research anything.  I didn't check the meds they were giving.  I didn't push for answers and options and help.  I didn't fight and ask for second opinions.  I didn't push for a miracle.  I didn't question everything. I didn't ask for his sugar checks and temps.  I didn't.  I don't know what pain meds they gave my baby.  For the first time in his life I can't tell you any of the medical things happening.  All I know is my baby was dying right before my eyes and so was I.

I told the PICU doc and our doc and the nurse that I was dying with Eli.  I told them that if and when he died I just knew that I would too.  His PICU doc grabbed my shoulders and looked at me with a pain in his eyes that I had no doubt what he was going to say.  He had lost a child too.  He said he had felt that same feeling.

We stood in the hall many times.  His primary doc showed us Eli's chest xrays as he explained what was happening.  He had requested from the ICU doc for him to be the one to talk to us.  He told us it was ARDS.  We begged for a fix.  He told us that ECMO may have been a very small possibility for a "healthy" person but not for Eli.  He also told us that nobody in our state does it and Eli wasn't stable enough to transfer to a CT scan let alone another hospital.  He told us we were out of options.  I just stared blankly at him.  The next words out of his mouth were about not wanting Eli to suffer.  He said at some point Eli's heart would stop.  DNR.  We said we don't know.  We asked him what to do.  At this point we couldn't even think.  We couldn't.  He stepped away to talk to the PICU doc.  Bob and I stayed in the hall outside of Eli's open PICU room talking.  At that exact moment the alarms went off, Eli's heart had stopped while we stood in the hall discussing the DNR.  I ran to the doctor.  I didn't run to my baby's side.  I ran for the doctor and literally drug him by the arm to Eli's room.  I stood in the hall while everyone flooded my baby.  My body couldn't move until I heard the PICU doc yell start CPR.

Then I was all movement.  I flew to Eli's bedside with my husband and Eli's doc right behind me, as I yelled stop.  The PICU doc grabbed me.  He said you have to say it.  I begged him.  I screamed at him that I hadn't held my baby yet.  I kept yelling that over and over.  He shook my shoulder and said you have to say it.  The moment the words were out of my mouth my kids screamed and ran for Eli.  I broke them.  I broke them.  I made the call.  I said those words.  The docs and nurses and respiratory and I all started literally ripping the tape and cords and monitors and lines off of my baby.  I grabbed him and they swung me around and shoved me on the bed with him, bob being pushed onto the bed with us.  They shoved the kids forward on top of us.  I held him. I held him so close and so tight.  I couldn't let go.  I couldn't let anyone else have those last seconds with him.  Bob had his arms around both of us.  the kids arms and faces all around us.  At some point we removed the tape and pulled the intubation tube out of his mouth and threw it across the room.  The nurse removed the cath for us so it was simply our baby.

I couldn't move him.  We stayed that way for sooo long.  In the end Lauren had to lift him off of me because I couldn't do it.  I was the last one to hold my baby.

I am not strong.  I'm not. I'm still not sure if that's ok.  I feel as though I let my baby down.  I feel as though I abandoned him.  His heart stopped when he was laying in that bed alone and we were in the hall going back and forth over that fucking DNR.  We should have been there with him.  He shouldn't have been alone.

and please don't think that my fuck ups stopped that night.  I was numb.  I didn't help my kids.  I didn't help my family.  i didn't check in with my friends that we had up there that night with us to see if they were ok.  i shut down.  I cried.  i refused food.  I walked around blank.

I couldn't move at the funeral and froze in the doorway.  i had to be held up by a few people and shoved down the aisle.  I collapsed graveside pulling many people down with me.  I watched as one of my sons tried to jump into the grave yet I did nothing.  I didn't even know that my other son was crying for one of the first times in his life and NOBODY was with him or knew because they were attending to me.  We found this out after the fact in pictures.  I never checked in to make sure others were ok.

Then I shut down for weeks.  No tears no emotion no nothing.

now the tears are uncontrollable and it makes the kids upset too.  so then I try to hide my tears when they fall.

so again I say.  I'm not strong.  I'm not perfect.  I'm human.  I'm shattered.  I'm forever broken.

I also know for a fact that so are others.  so i guess my point in sharing this is for those like me, those like us, please know that this is normal, this is ok, you aren't alone.  we are all here walking this road.  we are broken too.


Laura Wagner said...

It's so hard to know how to be a good friend right now. I don't know if you would want to hear about "normal" things in our lives now, if that hurts or helps. I don't know if the trivial daily stuff is a good distraction, or if it just causes more pain. I wonder if you don't know either though, I don't suppose there is a right way to do any of this.

I feel like I have no right to even pretend to understand what you have been through, and are going through. I feel like I have caught glimpses of these things in my life, touched the tip of the iceberg of thos situations, but then have no right to compare anything I have experienced with any of this.

I will say that there are a lot of things that happened after H was born and was in the nicu, things I did or didnt do, things I am ashamed of and have pushed from my mind. Those are the tip of the iceberg, and just from that glimpse, from how I handled those things, i am glad you shared your whole story, because it makes me feel less alone in what I still have bottled up.

Lindsey Willow said...

Heather, you are human. More than that, a mother feeling tremendous pain. You are allowed fuck ups. This was raw and real and beautiful....yes, beautiful. Because not one of us reading this thinks that we could have done any better. Your love shined for him through your pain.

Be broken, my friend. It is ok. We are here for you.

Mommy98n09 said...

No one is equipped to deal with loosing a child NO ONE. There is no guidebook, there are no street signs, you do the best you can do with whatever you can hold on to. You are an amazing mother to some amazing children you aren't doing anything wrong there is no wrong way to grieve.

Gentlepup said...

Oh, Heather. I'm so very sorry for your loss. You know, it is possible that your tears enabled your son to grieve. You said he never cries, but you taught him how to let the sadness out, you know?
You were incredibly strong, just getting through all of this.
My prayers are with you.
Jenny Findling

Gentlepup said...

Heather, I'm so sorry for your loss.
You said that your son never cries, but it is possible that your tears allowed him to get in touch with the painful feelings. You taught him how to grieve. You are so strong, just getting through this. My prayers are with you.
Jenny Findling