17Jan

A Mother’s Voice

By Sue Ludwig

Gail Lewis OTR, CIMI interviewed Jennifer Hays about her NICU journey. It’s powerful, raw and brave. It reflects what so many mothers feel and cannot express. Through the writings of Gail Lewis, here is Jennifer’s story.

little-babyA Mother’s Voice

Inside I am screaming……

I feel useless

I feel hopeless

I feel helpless

I am their mother, but I can’t help the little ones I just brought into the world like a mother should. I feel sick, so sick to my very core. My world is crashing around me and I have absolutely no control of it.

This is my true story.

I am one of those late AMA (advanced maternal age) Moms. I married at 36. My husband was 41. It was the first marriage for both of us. After 6 months of trying I was elated that I got pregnant. It was even more exciting when we saw the heart beat. Our excitement and bliss was short lived, because at 11 weeks and 5 days we lost our baby.

We were devastated.

I took it upon myself to get pregnant again no matter what. I tried Clomid for 3 months, I took shots, I tried acupuncture, had a hysterosalpingogram, numerous tests and finally IUI (inter-uterine insemination). After a year of a rollercoaster ride I finally got pregnant.

This time with twins…..

I was not surprised when I saw and heard two little hear beats. Twins run in my family. When I called my husband with the good news, he was at work. He collapsed in awe with his head between his legs. I was ecstatic. My pregnancy could not be better. I felt good, I ate well, no aches, pains, pangs, sickness, discomfort, or swelling. Then one Friday in July I went in for my normal checkup. I had no complaints except for an increase in my blood pressure. I guess it must have been pretty elevated, because I was put on immediate bed rest.

The next week on Tuesday and Wednesday I had increasing burping just like with acid reflux. I had no relief from this. Then I discovered minor swelling in my hands and feet, along with lower back pain and bright orange urine. I didn’t know all these were big red flags that I was going into HELLP Syndrome and preeclampsia. My kidneys and liver were shutting down and I was progressing into total organ failure!

Friday, July 30th in a whirlwind of MD’s and RN’s and aides I had an emergency cesarean section. I gave birth to two beautiful little boys. Just 26 weeks old.

Baby A was 1lb 6 oz. and Baby B was 2lbs 3 oz. Soon after my twins were shown to us they were whisked away by the NICU (Neonatal Intensive Care Unit) Team. Back in the recovery room I went through an emotional turmoil of “guilt”. Guilt at not being able to carry my twins to full term. Guilt that my body gave out so early. Guilt that I did not give my sons a fighting chance.

Guilt that it was all my fault.

The first time I saw my boys in NICU I was overwhelmed! They looked so small and fragile and almost lifeless, with numerous lines invading their little bodies, a ventilator to help them breathe, a tube to feed them.

I felt useless, there was nothing I could do to help them. Hopeless, there was no miracle that could prevent this. Helpless, there was nothing I could do to protect them.

I felt inadequate and sick to see them so small, and yes ignorant too. It was difficult for me to understand what the doctors and nurses were saying about my tiny beautiful boys. I nodded in affirmation that I understood the information I was given, but really I didn’t. I was overwhelmed with emotion. It was difficult to absorb new medical jargon, words like “brady, apnea, oxygen saturation, pulse oximeter, respiratory rate, ventilator, nasal CPAP, gavage tubes”.

Everything was just a big blur. Everything moved in slow motion!

I fell into depression and was put on Prozac. I experienced a pendulum of emotions…. I was jipped out of my pregnancy. I wanted to have a big belly, I wanted to have swollen ankles, I wanted to waddle, I wanted a normal birth, I wanted to take my babies home just like any other parent. But none of that happened. I was spiraling into a deep vortex, I had to emerge.

I had to be strong for my two little boys fighting to stay alive. I had to be there for my husband, my companion, my lifelong friend.

Having twins in NICU is stressful and it took its toll on me, both physically and mentally. My life was engulfed with daily phone calls and interactions with neonatologists, nurses, social workers, and therapists. I was living and breathing NICU. Every waking hour I was absorbed with nothing else but the fragile health of my two sons. I was warned earlier by the social worker not to Google information that I was given. “The internet has too much information, and a lot of it will not relate to your infants, and it will scare you”.

This was the best piece of advice I received. I restrained myself from doing my own research and asked questions of the healthcare professionals when I was in doubt.

I was taught about kangaroo care (skin to skin contact) with my infants. I was nervous and petrified every time one of the alarms went off when I was holding my baby. I looked forward to my one on one time with each boy and had to inconvenience my husband or in-laws to drive me to the hospital, since I was still not cleared to drive. I remember one day when I was told I could kangaroo with the boys, I drove up to the hospital elated, anticipating my bonding time. Ready to feel his little heart beat near me. Yearning to touch his soft skin. Wanting to plant a kiss on his little head.

I arrived in NICU only to be told that the boys had a bad day, and could not be held. I cried softly inside, but knew that minimal handling was best at this point. I learned quickly in NICU that each day your baby can move two steps forward, but some days they move two steps back as well.

Then one day my rollercoaster ride came to a screeching halt….I got a call at 4:00am that Baby B was extremely sick, and that my husband and I should come immediately. We rushed to the hospital. Hearts pounding. We knew that both boys had a kidney infection, but Baby B’s infection was worse and his PDA (patent ductus arteriosus) had reopened.

They let me hold my little boy and even though his heart rate was dangerously low, it stabilized nicely when he was in my arms. Later that morning the grandparents arrived. We all stood around helplessly. I held him whenever he stabilized, but he never really recovered, he just kept getting worst with each passing hour.

Finally the MD informed us that our baby’s organs were shutting down and there wasn’t much time before he passed away.

They took our little boy off the ventilator and all support and placed him in my arms. As a new mother, the hardest part is having your baby look at you and there is nothing, absolutely nothing you can do to help him! Finally it hit me…..my little boy was not going to make it.

We each took turns holding him. Each of his grandparents and then his Dad. I had my son baptized. This was important to me since I am Catholic. At 2pm on Saturday August 21st my little angel passed away in my arms. Just 21 days after he was born.

I am overwhelmed with grief; the tears never seem to stop. I have a lot of unanswered questions. I second guess myself. I have a lot of “what ifs”. I know the staff did all that they possibly could do to save my little boy. It was just not meant to be. I am numb and angry with God, with the whole situation. Why could he not hold on a little longer? He was a fighter. I am screaming inside over and over again….ITS NOT FAIR….Life is not fair…..why did this happen to me, to us, to my family. WHY? WHY? WHY? There is only silence.

There is no answer.

My husband and I came back later that night to see our other surviving son. We felt we had to be close to him, to see him, to touch him, to reassure ourselves that he was going to make it. When we walked into the nursery and saw the empty space where my son was no longer, my husband broke down, fell on his knees and wept. The staff quickly moved us all to another nursery.

I feel emotionally drained. I feel like staying under the covers and sleeping all day. When I am asleep I feel no grief, no sorrow, no pain. I wake up each day and go to the hospital. I still have another little boy who needs his Mom. I hold my only son close to me. I feel better.

Friday, August 26th I attend the funeral of my infant boy. The funeral arrangements have been draining. Four hours of identifying what kind of casket, what flowers, what the tomb stone should read. I am numb, but I have to be strong. I go through the emotions robot like. My husband is unable to deal with the grief. He has never dealt with death before. When I saw my infant in a private viewing lying in his casket I had a melt down. We had a beautiful ceremony of candle lighting and releasing of doves.

I am still numb. I am still angry. I have not returned to church because of unresolved anger. My husband too is still working out his anger. We are going through the stages of grief – denial, guilt, anger, depression, reconstruction and acceptance. I am stuck in the anger stage. I have still to move on.

Just a couple of weeks ago I started sorting out all the monogrammed clothes of my son that passed away. I put them into a little hope chest, along with other memorabilia like his hand and foot prints, made by the caring NICU nurses. Putting them away has given me some closure to that chapter in my life. I have lots of supportive family and friends who have helped me through the rocky road of life. I like to talk about my son that is no longer. I know that my memories will be bitter sweet. Each milestone that Baby A passes I will think of Baby B. I often wonder if and when I should tell my little boy that he had a twin.

I look at my living son and think this is surreal. I look at life differently now.

Each day is precious.

I think what a great opportunity to be surrounded by experts who can give me advice on what I need to know. I know there are no guarantees in life and no crystal ball to tell the future, but I am ready for my baby to come home. It is almost 4 months that I have called NICU my second home, and the doctors and nurses are my extended family.

I am ready to move along a different path. I have a box of memories under one arm and bundle of joy in the other, and an experience of life that I shall never forget.

~ Gail Lewis has been an OT for 22 years, spending the last 7 years exclusively in the NICU.

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