Whoever You Are

I realized something today.  A phenomenally large group of people separately mentioned to me all in the past three or four days that I do so much for other people.  When people you love, respect and know you well all say something to you that is similar in such a short period of time you should pay attention.  The funny thing is I feel like I am not doing enough for other people.  I did not get my best friend a birthday present, I forgot to call someone who just had surgery, someone I love  just lost someone very close to them and I did not even think to call them for three days in a row.  I could make this list go on and on.  Probably the most difficult is that I feel like I am neglecting my husband.  I seems as if I just don't have any emotion left.  Having to watch your baby go through something so painful and actually be a part of that pain kills something inside of you.  One of the reasons I started this blog was to write about LillyAnna's dressing changes.  You may want to stop reading here if you have a weak stomach.

 

 

You have seen the pictures of LillyAnna's lesions.  They went all the way down to her muscle.  I once asked the dermatologist how painful they were; I began by stating that the most painful thing I could imagine is a serious burn.  She said this was much, MUCH worse than a burn.  By the time we left the hospital Lil had had a total of 30 lesions.  The biggest was her leg.  Every other day, we would have to change her dressings.  Finding dressings that will stay in place, prevent infection and provide some kind of comfort was not easy.  The dressings we ended up using were slightly sticky.  Every other day, I would spend an hour or more preparing for the dressing changes; getting out and cutting various sized bandages, sterile water, gauze pads, any ointments we were using, extra blankets in which to wrap her to hold her down, and more.  Most importantly I would line up the things we hoped might soothe her: pink and green soft blanket, pink diamond ring rattle, cell phone with video of Poppop and Mommom singing, Monsters Inc. ready on the hospital TV... Even though she was already on Morphine every four hours we had to prep her with extra medications.  I am not even sure any of it mattered because it did not stop her screaming.  Timing this was sometimes difficult because the amount of people who attended these sessions numbered anywhere from six to twenty.  It took at least six of us to do it.  She was 9 months old when it started.


We would start with the PICC line lesion because the IV team had to be there (this was something they had never dealt with before).  The PICC actually caused the lesion and made it worse.  PICC lines go straight to the heart and are so sensitive to infections that can kill.  Because of the risk and the pain of having a tube going into and laying on this lesion, we did this first. 

We started by papoosing her.  She hated it and this is when the screaming would began and the little door that allows feeling into and out of my heart would have to slam shut.  As the nurses held her down, my job was to ineffectually try to soothe her.  After about a month I would sometimes help with the actual changes.  We held her tiny squirming body still while we peeled off this slightly sticky bandage and shot sterile water at her completely open wound with a huge syringe.  It was important to peel very very very slowly so that new skin would not detach.  We were not always successful.  Once they were off, we all examined them and take pictures.  In the beginning we did each one individually because the air hitting them added to the pain but after awhile we did them in groups.  Then back to holding her down to replace bandages and rewrap, cover with babylegs and clean up the bloody mess.  The whole process (excluding set up and clean up) took anywhere from one to two hours.

Everyone involved fell in love with Lil and did an absolutely amazing job, I have never seen anything like it.   Tom would even warm up the sterile water so it would be less of a shock to her skin.  Afterwards they would hand her to me so quickly.  And rush to get me anything that would make her feel better.  They almost tripped over themselves to settle her and me in.  But sometimes I felt like, why are you giving her to me?  I can't fix it?  I can't take away her pain?  You did this and I helped.  She does not want me either.  Sometimes in the middle of it she would simply fall asleep for a few minutes.  I think she was possibly passing out.  I was terrified that she was going to develop post traumatic stress disorder. 

I recently went to a funeral and met a psychologist who worked in a NICU.  She was asking me about Lil's disease and at one point mentioned dressing changes, she simply said it must have been terrible.  That is not usually a topic people think about.  I looked up at her and met her eyes.  She leaned over, put her hand on my arm and said, "I am so sorry."

These memories haunt me.  I remember every second of it.  I will never forget what it felt like to hold her down and cause her so much pain.  I replay it in my mind when I cannot sleep at night or when I am rocking her before bed and she is so peaceful.  I want her to know how very sorry I am for hurting her. 

I think that maybe I have been putting so much pressure on myself to do things for others because I have to prove how strong I am.  I have to prove it to myself, I have to prove it to you, I have to prove it to that baby.  If that strength falters, if I show weakness, then maybe a weakness will actually appear.  If that happens, it will grow and that strength which I have used as a shield around my aching soul will crack and crumble in on itself.  I will be exposed as a fraud.  I am weak.  I hurt my own baby.  I hurt her and I held her down while others hurt her.  I am a piece of shit and I don't deserve your respect, kind words, actions or even thoughts.  This strength is not real.  I am a fraud.