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.”

https://undercovertwins.wordpress.com/parkers-turn-as-a-patient/

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…”

Day 5.4 Not the Homecoming I’d Been Dreaming Of

My husband got me settled into  the car.

He tried to dry my tears and convince me that all will be well.

He started the short drive home.

We rode in silence. When he pulled into our driveway I suddenly felt as if I was in a foreign place.

I was home, but there was no joy in being there. The house felt so cold and empty.

But, I have to give my husband much credit. He was home alone for a total of 12 weeks, and our home was spotless. Not only did he keep the house clean but he also re-tiled the bathroom.

He was very excited to show me his handiwork. His masterpiece: the twin’s bedroom. He had painted the room, assembled the furniture and installed new shelving in the closet. He was proud of his work and wanted to share it with me.

I entered the room with bated breath. Everything looked so pretty. The last time I has seen this room, it was a spare bedroom complete with a dresser, full-sized bed, two night stands and treadmill. Now it was a sweet bedroom waiting for its tiny occupants.

It was truly hard to believe that this room would be filled with babies! OUR babies! We just didn’t know when.

My mom had washed the linens and put sheets on the mattresses. My husband displayed some of the little trinkets, stuffed animals and figurines that we had received as gifts around the room. It was really quite lovely.

We started unpacking my bags from the hospital and sorting some of my stuff. I was rifling through the stack of papers that the hospital sent home. The documents included my discharge papers from 3 different hospital admissions, information packets about caring for your preemie babies and breast-feeding, and booklets about the dangers of RSV respiratory syncytial virus and lots of other papers. Then I came across a small envelope that did not look familiar. I opened it, gasped and covered my mouth. My husband heard my whimper and came to check on me.

I was crying (again, no big surprise) and handed him the contents of the envelope. It was two pictures. One of each of our babies.

I was not expecting these pictures. There was a note in the envelope from one of the NICU nurses offering words of encouragement intended to raise my spirits.

Little Miss

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Little Mister

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I missed them so much.

Lesson Learned: “A picture is worth a thousand words.” A picture of your children is priceless…and can leave you speechless.

Day 5.3 The Long Walk Home (ok, it was really a short walk to the car)

I was very upset that my little boy was doing poorly.  I had hoped that we would have received encouraging news.  I was hoping for word of an improvement in his condition, but it didn’t happen that day. Now I had to go home, without my babies, and with my son being so periously fragile.  I could not think at all.  My brain stopped working.  I could not wrap my head around the fact that I was supposed to ‘go home’ like everything is okay.  And it wasn’t.

During the last 2 days, my husband had slowly taken home most of the things he could so that we wouldn’t need a small wagon to cart all of the flower baskets and bags back home on the day I was discharged home from the hospital.

We still had to carry some more congratulatory flower baskets that had arrived earlier that day and the day before.

I gathered that last of my belongings and walked to the elevator with the image of my little boy sandwiched between ultraviolet lights both above and below him and his bruised arms and legs from the countless blood draws and IV insertions.

My husband and I were silent and I took a spot in the back of the elevator hiding my face behind flowers and balloons.

The elevator stopped and two older women entered the elevator and their faces brightened when they saw the balloon my husband was holding that said “Welcome Twins!”

They enthusiastically started chattering “Oh Twins! How exciting! Are they boys? Girls? One of each?” My husband, not used to the attention, stammered that we had a boy and a girl.  They commented on how lucky he was to have both a boy and girl at one time.  Then I overheard one woman say to the other, “Let’s wait in the lobby.  I am sure he has to go back to get them, and we can see the two babies.”

And then the dam broke.

I spoke up with a quivering voice, “Well, you will be waiting a long time because….because…”

My husband’s head spun around like in those horror movies, and his eyes were wide open, but I continued to speak “they are not coming home with us….wwaahhhhhh.”  And I started bawling.

Those poor women and my poor husband had no idea what to do or what to say.  One of them pulled out a minty smelling handkerchief from her purse and offered it to me.

My husband, who was horribly embarrassed, couldn’t do much because his arms were filled with all my stuff from the room.

But he did manage to apologize about a million times to them.

They were really kind and actually walked us to our car, one of them holding my arm and tried to comfort herself and me.  They promised to keep my new family in their prayers and they urged me to get some rest because they were sure that the babies would be home in no time and things would get better.

Thinking about it now, it’s quite comical, but when it happened I was less than amused.  And my husband was mortified!

Lesson Learned:  Appreciate the kindess of strangers.

Day 5.2 How Could I Leave?

“Well Parker. This is it. What do you want to do?” my husband asked me with a slight tone of impatience.

“I’ll tell you what I don’t want…I don’t want to leave.”

“But you’ve been discharged All the papers are ready. It’s time to go.”

“How can you make me leave? I’m not ready to go home without them.”

He pulled me to him and hugged me. “I’m not making you leave. I am giving you a choice. We can go home now, unpack all your stuff and get some rest. Then we can come back later on tonight…”

“But they won’t open the NICU until after eight tonight. That is too many hours between now and then to not see them.” I pleaded.

“You didn’t let me finish… Or we can stay here until they close the NICU for shift change at seven o’clock… But when we leave at seven we will not be coming back until tomorrow.”

“You are being mean to me!” I sobbed burying my head in his chest

“Honey, realistically there’s not a whole lot you can do for them. You need to go home and get some rest. Besides, I finished the nursery you haven’t even seen the furniture yet.”

I hadn’t been home more than 2 months. My husband painted and decorated the nursery, hung pictures and transformed the closet so that we could hang the all the babies’ clothes in one closet with two racks. My mom washed whatever clothing and linens that were sent to us as gifts for the babies. I missed that whole part of nesting and decorating. Everything was just piled in a laundry bucket waiting to be put away.

Again, I hated him for being the voice of reason.

I did not want to go home. I wasn’t ready to leave them. I felt so empty leaving them behind.

“Well, can we at least say goodbye before we leave?

“Of course we can. It’ll be a quick visit and then we will come back later tonight and spend time with them.”

We went to the NICU and we were alarmed to discover that our son’s condition was not improving as we had hoped. For starters, they removed his diaper and they made a make-shift diaper out of a surgeon’s mask. It was terribly sad because the mask was huge on him and didn’t really cover him at all. It really just looked like a tent around him. Not only they did have the blue light above him, but now he was resting on an ultraviolet pad that shone green. His bilirubin was reaching dangerously high levels.

He was losing more weight and at a faster rate.

His oxygen requirement had increased. Not decrease as we had hoped.

And they were having trouble setting up a new IV. So we were presented with another document to sign. It was the consent to start a PIC line also known as a central venous line. The PIC line would be inserted into his chest and would deliver all the nutrition that he would require, and double as a portal to draw blood on demand without having to have to constantly search for viable veins.

I was so scared for our son. All I could think was, my poor, poor baby. What is going to happen to him??? Is he going to be okay???

The doctor reassured me that as frail as he was, the doctor was confident that we would see an improvement in our son in the next 24-48 hours. I prayed that he was right.

We spent a few minutes with Little Miss and promised to come back to see her and brother later that evening.

The NICU doctor urged me to go home and rest. Against the panic rising in my heart, I heeded his advice and let my husband lead me out of the NICU. As we were leaving, one of the nurses handed me a “Going Home” present. It was sealed in an envelope. I thanked them, and reassured everyone that we would be back later that evening.

I reluctantly left the NICU and headed back toward my room to gather my belongings and go home.