Day 7 My First Week as A NICU Mom of Preemie Twins

I could not believe it had been a week since the emergency delivery of my twins.  I was numb from all the crying I did. It felt so unreal. I was warned about all the anxiety and roller coaster ride all new moms experience.   But I was never schooled on what a NICU mom experiences.

I was dealt a multiple layered dose of complex motherhood:
– First time mom
– Mom of twins
– Mom of preemie twins
– NICU mom

I didn’t know anyone who had this much going on as a new mom. I knew that there are many other women who were in my shoes and in worse circumstances, but there wasn’t anyone in my circle of friends that I could go to who knew what it meant to be a NICU mom.

I never felt so cheated, blessed, helpless, lucky, inept or grateful all at the same time.

I felt that I, I should say we, as a family were cheated.  Big time!  We were robbed of so many experiences.  Many women do not know how lucky they were to have given birth to healthy babies.  I was robbed of the experience of bringing life into this world and bonding with them moments after their arrival.  My children were taken from my womb via emergency c-sections at 31 weeks.  They more than likely would have died had they not been delivered.  They were neatly cut from my belly and whisked out of the room.  We were severed and separated.

They were now a week old and I had yet to change a diaper, provide a feeding, comfort a cry or rock my babies to sleep.  For me, there were no bottles to be given, no breastfeeding, no binkies, no diapers, no baby baths, no cuddling, no snuggling, no burping, no spit up to clean up, and no humming of lullabyes. I couldn’t even tell who they looked like, as I had yet to see their faces without any tubes, wires or eye masks.  There was no real bonding with my children. There are 10,080 minutes in 7 days. I only got to hold one child for 20 of those 10,080 minutes.

My children didn’t know the comfort of a mother’s touch, they were poked, stabbed and prodded for IV lines, blood draws, blood stick testing and monitoring of heart and breathing.  My son suffered the worst of the painful procedures.  They did not fall alseep to the rythmic beating of my heart as they lay on my chest.  Instead they fell asleep under ultarviolet lights and to the sounds of beeping machines and nurses bustling back and forth 24 hours a day, 7 days a week.  We were cheated!

But, we were also blessed. We were blessed with the miracle of not one, but two babies.  A boy and a girl!  We were blessed with strong children who were determined to LIVE.  We were blessed to be in a hospital that was equipped with state of the art medical technology and staffed with highly trained, professional doctors and nurses who were very skilled at going above and beyond the call of duty.  Not only did they care for the babies, but they also cared and support for the parents as well.

We were blessed to have our own wonderful parents. They were so supportive and an essential part of our healing.

My mom was my chauffeur and constant NICU companion. She made sure to dry my tears, make me pump my breastmilk and eat, drink and rest. My mother-in-law was my personal chef and would send tons of food to make sure my mom and I wouldn’t have to eat hospital cafeteria food. Our combined families cheered us on, prayed with us and for us, and loved us.

But I still felt helpless for so many days and hours.  There was nothing I could do to care for my children.  I did not feel like a mom at all.

I was just there to observe.  Cry.  Pray. Be patient.  And learn.

Day 6.1 Praying for Strength

The nurses needed a spatula to scrape me off of my son’s incubator.  I was inconsolable.  A social worker was called in to offer me some support and counseling.  I turned them away.  Any time that I spent at that hospital was time that I wanted to spend in that NICU.  I didn’t want to divide my time with my children.  While I certainly did not understand everything that was going on, I knew that I HAD to be there.

The nurses seemed to have understood.  They see it everyday.  They let me be.

I looked around through bleary eyes and saw that while I felt so alone, I really was not.  There were other women and babies being cared for in the NICU.  Us newer moms looked like we were part of the penguin brigade, waddling around the NICU holding our swollen bellies, while other moms looked well rested, dressed and wearing make-up!  They appeared very comfortable in their environment.  Some came whizzing in, putting bags of freshly pumped breastmilk in the NICU freezer, chatting with the nurses and getting updates about their precious little ones.  Some came in very chipper and happy to be visiting their babies who were in open cribs and dressed in their own cute, little baby clothes.  Babies wearing baby clothes!  Wow!  What a concept!  No awful wires to manage, no naked baby, stretched out and connected to wires and machines.  This is not, at all, what I had envisioned what being a new mom would mean to me.  One mom was so excited because today, her baby was going home!
Oh how I envied those mothers!

I looked at them feeling left out of the “cool” club.  I went back to staring heartbreakingly at my son.  Was he going to get better?  He is so small.  So fragile-looking.

I did not know, or acknowledge exactly how close to death my son was since before his birth.  I refused to acknowledge his surgery, the insertion of the chest tube, was performed without the benefit of anesthesia.  I could not process all of that.  I could not, refused to, process how painful that must’ve been.  My heart hurt.  I convinced myself that they gave him something to keep him comfortable.  But I was too afraid to ask that question because I just didn’t want to know the answer.

Everything that I was seeing and hearing was all that my brain would allow me to process.  My brain wouldn’t allow me to take the thought much further.

I said a prayer over my son’s incubator and moved over to visit with my daughter.  I was so sad that they were no longer next to each in the NICU.  There were now two incubators that separated them. They couldn’t even be next to each other.

I marveled at how tiny she was, yet doing so good.  She was off the respirator and breathing on her own.  I had been able to hold her tiny body and feel the warmth of her skin on mine.  Oh how I wanted that with my son.

The nurse whom I disliked came over and started telling what brave and strong children I have.  She reminded me that they are fighters.  They are strong.  They are my children!

Lesson Learned: “Strength does not come from physical capacity. It comes from an indomitable will.” ~ Mahatma Gandhi

My children had the will to survive.

Raising Awareness

Recently I was given an incredible opportunity to participate in a media tour celebrating World Prematurity Day. I conducted close to 30 media interviews to discuss the topic of premature births, and a dangerous infection called Respiratory Syncytial Virus and my family’s personal experience.

Unfortunately, none of the interviews were aired on radio stations and tv stations in my part of the universe, and due to copyright and infringement, technical legal stuff, I cannot repost my campaigns on my social media.  I am kind of bummed about that, but in a way, sometimes you don’t have to make a loud noise to make a big impact.  My media tour reached thousands of families across the US.  As they were not interviews that were all about me, I had to give a very abbreviated version of our experience with giving birth to pre-term twins and all the challenges they faced and decisions we have had to make.

The thing that struck me was that my children were born more than a decade ago, but my story is still relevant.  I never thought that our story was unimportant, just that it was old news.  And I think that is a large reason why I have kind of neglected my blog.

But doing this media tour, raising awareness and reliving some of these really personal memories has given me a new breath of air to continue what I started.

If for no one else, at some point, when they are older, I would like to think that my children would like to know their story.  And why their mom has tried to educate her family and others.


NEGATIVE Never Sounded So Good!

WoW! These last 10 months have flown by!
Long story cut short, my biopsy was negative.  But I must have a mammo every six months as a precaution.

The day of the biopsy arrived.

I arrived at the clinic Friday morning and tried to assume a measure of calm.  As I was registering at the front desk, I felt a hand on my shoulder and then the hand gently squeezed my shoulder.  I fully expected to turn around and see my BFF.  Instead, smiling, with tears in her eyes, was my first BFF, maid of honor of my wedding and lifetime sister.

I squealed in delight and astonishment.  We hugged for so many reasons but mostly it was for love.

It was so wonderful seeing her.  So many years had passed since we had last seen each other, but it was like to time at all had passed between us.  Before I could ask, she told me that my other BFF contacted her and told her about the abnormal mammo and pending biopsy and she just knew one of them should be with me and that I shouldn’t go through this alone.  I am the luckiest girl in the world and I LOVE MY FRIENDS!

My friend’s presence made the trauma of the procedure so incredibly distant.

After the doctor cored me like an apple, snipped 6 specimens, tagged me like a seal with a marker so they can keep any eye on things, and wrap me with tape as if I were a Christmas present, my BFF and I went out to a delicious Italian dinner, with cocktails, laughs and giggles.  It hurt my chest to laugh, but I was happy.

We left each other’s company and I promised to call with the results.

Tuesday morning, the clinic called that the biopsy was NEGATIVE!

I was utterly relieved that my biopsy was clear.  It was a huge weight lifted off of my shoulders.

As promised, I called my 2 BFF’s and shared my wonderful news.

This past May I went for my first 6 month follow-up.  During the physical examination, the doctor noted the scars on my breast.  I had to explain that I had an allergic reaction to the tape they used to secure the dressing, along with the steri-strips from the biopsy. The adhesive burned and blistered my skin.  A dermatologist injected some kind of a steroid to give me relief!  It was awfully painful!  So I explained to him that now have zero chance of ever posing in Playboy or Maxxim, due to the scarring.  But on the bright side of things, my boobs may sag and drag, BUT they are healthy, they are mine and for this, I am grateful!

Biopsy: the Scariest Word in My Book

It’s Halloween.
I am not a person who is easily frightened. However there are certain things that strikes fear in my heart (not in any particular order):
1. Stomach Flu
2. Natural Disasters
3. Scary Clowns (actually most clowns in general)
4. Biopsy/Cancer

I received a phone call that literally took my breath away and left me at a loss of words. My doctor called and said “…you need to come in for a biopsy.”

Day 6 All He Knows Is Pain

My first night at home was very uncomfortable.  I got very little sleep.  First, I was anxious that my phone would ring in the middle of the night…and it would be the hospital…with bad news… Thankfully, my phone never rang. But, I was pumping breast milk every 3 hours; then sterilizing the breast pump parts; labeled the bottles to freeze and catalog the time and quantities of milk expressed.  I was exhausted!  Plus, I missed my adjustable hospital bed that I had grown accustomed to over the last 7 weeks.

But my level of discomfort was nothing compared to what my son was going through.

When I got to the NICU by mid-afternoon the first day after I’d been discharged, my son wasn’t in the traditional incubator.  His new digs was open and it had the overhead UV lamp.  The overhead ultraviolet light shone blue and he still had the green ultraviolet light that was placed underneath him.  In place of a diaper, a surgeon’s mask was still wrapped around him, and it still looked obscenely huge.

I stood several feet back away from the incubator staring at my son.  I was so scared to approach him.  I had wanted to hold him, touch him, caress him, promise him that everything would be okay.

I took two steps closer to the incubator.  I rested both of my hands on the of edge of his new bed. I watched as his chest rose and fell in sync with the respirator. I watched in awe as his chest cavity retracted inward in time sequence.

Very hesitantly, I nervously extended one hand and reached into the incubator and put my hand on one of his little feet.

He instinctively curled his little leg up closer to his body and began to wail.

It was the first time I had heard my baby boy cry.  It was a heartbreaking moment. His wail was weak yet so mournful. His dry lips stretched open forming a circle. You could see a filmy string of saliva stretch at the corners of his mouth as his mouth opened.

I immediately withdrew my hand.  My heart was shattering.  It was the very first time I touched my baby…I made him cry.

Several moments passed and he seemed to calm down and relax his legs.  I reached in a second time to put my hand on his little foot.  Once again he curled his leg up, into his body wailing.

His rejection of my touch killed me.  He was rejecting me and I took it personal.  This was the very first time that I was attempting to physically bond with my son.  And he was rejecting me.

Then it occurred to me.  He thought I was going to hurt him.  All he knows is pain.

For the past six days, anyone who has touched him has just given him pain. First, he sustained multiple bruises and contusions from the battering of my uterus from the weeks of unrelenting pre-term labor contractions. Then he suffered a birth injury during the delivery which resulted in nerve damage to his neck and arm. After that, he was poked and probed for blood work, his temperature, the insertion of an IV and eventually a PIC line. Then, the ultimate pain of having a collapsed lung and the doctors inserting a chest tube to save the damaged underdeveloped lung…without the benefit of anesthesia.

My poor baby. He doesn’t know the soft caress of a mother’s touch.  He doesn’t know that I, his mother, would never cause him such pain.  He doesn’t know that I would never hurt him.  But he doesn’t know who I am.

After the awful realization, I became determined that this child will now who his mother is!  He WILL learn the softness of a mother’s touch.  More importantly, he will know the softness of MY touch, HIS mother’s touch.  He will know that I am his mother and that my touch will not cause him pain.

Once again, I grabbed his little foot.  Once again he tried to recoil.  This time I did not let go.  In a cracked voice I whispered to him “I am your mommy and I will not hurt you. You can trust me that I will not cause you pain. I am your mommy.  Mommy won’t hurt you.”  By this time I was bawling.  Oprah would’ve called it an ugly cry.  Tears mixed with mucus… Couldn’t tell them apart.

All I could keep saying was “I love you baby and I am so sorry you are so much pain.  Mommy loves you.  Mommy loves you.  Mommy loves you…”