Wanna Know What I'm Thinking?

I have been asked countless times, "What are you thinking? How are you doing? What's running through your head?". All fair questions, especially considering that most folks don't really know what to say at all. Sometimes I want to talk about Cash' situation, sometimes I don't. Many times I want to talk about him like there is nothing wrong, excluding hospital stuff or medical terms, other times its all I can focus on. One of my old high school friends, Melissa, outside of being completely supportive has referred me to a friend of hers who is a Neuropsychologist. Her name is Dr. Julia Hannay, and she has ties with some folks down at TCH, has a brother who had a micro preemie birth and gave a speech about his experience.

This speech was very interesting, and gives some great insight as to how a "high-risk parent" copes and feels about this unfortunate position they and their babies are in. Here are some excerpts from the speech, those that I most closely identify with. They explain a lot of my emotions, and should answer those "What are you feeling today?" type of questions.


"I had seen him sleeping in his nest of wires and tubes in the urgent glare of intensive care, watched the jagged green shadow of his pulse on the screen above his crib. When there was nothing more for me to do in the hospital, I went home and dialed a number in Florida. "Oh mama," I said, "I'm so scared."
......And I am scared because the day is drawing closer when he will understand that this is not how life is
meant to be..."

"Will I ever get over this, will I always be afraid". Will I always feel so vulnerable?"

"It seemed like a lot of buck passing was going on. Vicki heard a lot of ,"This is an interesting case. Please
let me know what happens." Vicki hates it when she looks at Ariel and sees symptoms instead of her baby."

 "...parents can realize that they can be the only ones in their baby's
life who does not cause pain. We know that the lives of high- risk babies are
filled with pain. Babies have many aversive encounters with doctors and nurses
each day. But parents don't draw blood or put in IVS. Parents can learn to match
a soothing voice with a touch that is always gentle. Your baby will then learn
that you are the good ones. You're unique. You are my parents."

"What do you think happened when a resident decided to impress the Chief
Neonatologist during rounds in front of Lauren and me. Christopher had been
doing beautifully for the last two weeks, and the staff had been full of
confidence- - telling us that he would come home as a normal baby, and because
of that Lauren and I had trust and hope and were beginning to cope OK. Then the
resident says to the Neonatologist that she is going to order a sweat test
because of a large meconium plug when he was born. I'm foolish enough to
ask,"What's a sweat test." And she is impressive enough to tell me all about the
meconium plug syndrome and its relationship to disorders of metabolism, chronic
pulmonary infections, possible biliary cirrhosis, cystic fibrosis, and salty
skin. And suddenly I'm incapable of listening anymore. I'm terrorized, I'm
angry, I feel misled, and I don't trust anyone in the NICU anymore."

"I would like to ask perinatal professionals to acknowledge to high- risk
parents what great jugglers we have become. High- risk- parents must focus on
coping with a series of emergencies or problems to solve. We go through these
times paying close attention to one thing at a time while trying to manage two
or three together things on the back burner. It is juggling practice. We have to
ignore most of the rest of our lives which lie scattered around us. This is
necessary. Otherwise we would drown in our sea of problems. So it is 3 mo. of
bed rest, emergency C- section, Apgar scores, intubation, transport team, mom
gets discharged from the hospital, worries of the other kids, trips to the NICU,
lost 20 gm. yesterday, blood gasses, apnea and bradys, belli lights, extubation,
the breast pump broke, gavage, room air, gained 10 gm., more visits, gained 40
gm., discharge planning, coming home, apnea monitors,- - Many of you know the
story."
"Being a high- risk parent is facing a series of bargains, bargains that
seldom come out even, bargains that we often lose. Bargains like, OK, I'll give
up my dream of what giving birth to a beautiful baby should have been like; as
long as my baby can be healthy and come home at term. Or, " Ok, doctor, I'll
accept the ventilator as long as it will help my baby get better and she doesn't
go blind. Or, "If its that bad, I'll accept the risk of ECMO as long as my baby
might live. I'll accept blindness as long as she can walk, and talk. Or I'll
accept Cerebral Palsy as long as he can just smile. Adjustment for the
high- risk parent means making unacceptable losses acceptable, and adjustment is
never complete. But giving up lost dreams and accepting what we do have is
simply necessary, if we're going to resume living our lives as a family with any
joy."

None of this is all that comforting to those asking the questions, and my intention is not to discourage you from asking. We appreciate the concern, and know that most folks are just speechless. I know I would be.
Many times those who think they know what to say, are wrong; or at the very least may have bad timing. Sometimes, its just a simple, "We are praying for you and Cash" that means the most. Other times its "How are you doing bro?", but be prepared for a long reply. All of this is so confusing to us, I cannot imagine how hard it must be on our friends and family. They want to help. We need their help. But is it the right time, or are they the right ones at the right time. Its unfair to those trying to be so helpful, but as I have learned recently, life aint fair. Don't quit on us, your offers for help will be taken up soon enough!

We cannot express how much we appreciate all of the support we have been given. From watching Savy, to visiting the hospital, an FB post, prayer or a friendly text; you all have been so helpful!
Sometimes its easier to explain by writing, taking the time to put my feelings into words. Other times its just rambling on my neighbors backporch, but both help me to cope and hopefully shed some light on whats running through this thick head I have.

To my mom: I know you are feeling left out. You are not. You know as much about Cash as I do. Your time with Savy in a couple weeks will be precious and perfectly timed. I am sorry for my breakdowns. I am sorry for my temper. I am sorry for ever forgetting to update you. Thank you for being available for us, and we appreciate your concern. You have always been a great mother and grandmother. I need you, we need you. I wish you could kiss this booboo and make it go away. I love you.