Tag Archives: underdeveloped lung

When You Find the Right Pediatrician, it’s Like Magic

I fired my children’s first pediatrician when they were 13 months old.  The pediatrician was fantastic – so long as you had a healthy, full term baby.  I did not know this about him when I initially entrusted him to care for my premature babies.  Both he and his wife (who worked with him) were very much laid back in their care.  I found them both to be very condescending whenever I would bring up issues and concerns.  I think they truly did  enjoy watching babies grow, but they didn’t seem to know or want to help those babies that needed help or extra care.

The pediatrician’s wife was like the high priestess of La Leche League – and very much of the “shame on you if you don’t breastfeed your babies” mindset. Don’t get me wrong, I wanted nothing more than to breastfeed my dumplings, but after 6 weeks in the NICU, we never bonded in that way.  My breast pump and I were inseparable for the first 10 weeks of my children’s lives. Every 3 hours I fed one twin, then other twin and then I pumped.  It was like feeding tr, every 3 hours, every day, for 10 weeks.  I pumped until the twins were consuming more than what I could pump. It did not make sense for me to continue pumping if the amount I was pumping was less than half of the amount of fortified formula that was added (and needed to sustain them).   As a side note, I was also admonished for continuing to work despite having premature twins at home. It wasn’t like she was dipping into her pockets to pay my mortgage. But I digress.

The 1st pediatrician and I had an epic falling out after he misdiagnosed my son, for the 2nd time with a major illness.  The pediatrician first misdiagnosed my son’s RSV (Respiratory Syncytial Virus) when he was 9 months old.  Two months later, he misdiagnosed my son’s Kawasaki Disease.  Years later, I would realize that he also missed the sleep apnea diagnosis too.  And we won’t even discuss my daughter’s vascular malformation.

I was beyond furious that fateful day.  I was distraught.  I was angry!  This man was endangering the wellbeing and lives of my children!

After bitter words were exchanged in his office, I stormed out of his office (with my sick boy in my arms) and drove to straight to the hospital where my children were born (prematurely) and well cared for in their NICU.

Thinking about it now, I must’ve been quite the sight leaving that office. I remember balancing two, year old toddlers – one child incredibly ill in my arms and the other bubbly and cooing in her car seat. My son was lethargic from the relentless high fever that raged in his body for days. He was also precariously dehydrated. But here I was trying to balance the twins, a diaper bag, my purse and my uncontainable rage.

Upon entering the emergency room, the pediatric hospitalist seemed to be expecting us. Without examining him, and without hesitation, she immediately announced “It is so very clear to see that his child has all the classic symptoms of Kawasaki Disease.  He needs a transfusion. STAT!”  I was amazed!  How did she know?  But there was no time for questions.  She quickly pointed out the critical symptoms he was clearly experiencing.  He was rushed to the pediatric unit and given a lifesaving IVIG transfusion.

Once my boy was stable, I toured the hospital and visited all the specialists we had seen up until that point. I started with my high risk specialist who carefully monitored me during the first trimester, and worked my way back to the NICU and took a poll.  I was looking for recommendations for an excellent pediatrician.  At first, everyone was reluctant to provide a referral (it’s against hospital policy), but after hearing how the first pediatrician misdiagnosed my son with a 2nd major illness in less than 2 months, they were willing to bend the rules and start coughing up some names.

I was down to two solid contenders.  I called both offices to schedule interviews.  I was no longer willing to just take someone’s word.  I needed to interview the doctor, I had some serious questions!  Most important, I needed to feel comfortable with the doctor whom I am trusting to help me keep my children healthy.  It turned out that doctor #2 did not accept any form of health insurance.  He was strictly private pay.  Judging by the fact that this was my son’s 2nd hospitalization in two months, choosing doctor #2 would have been the fast track to the poorhouse.

I was worried that doctor #1 might be of the same mindset as my newly fired pediatrician.  I was nervous to meet him.  I was asked to schedule an appointment to meet him after my son was discharged from the hospital.  I was not comfortable with that directive, but I had no choice.  In the meantime, I was asked to have the fired pediatrician send my children’s medical files to this new doctor for review.

The following morning, a doctor entered my son’s room with a broad smile and cheerful hello.  He walked in and asked me “So how is my boy doing?”  as he started perusing my son’s medical chart.  I stammered “Not well, he is still running a fever of 105, he is so very weak and the transfusion doesn’t seem to be working… I’m sorry, but who are you?”

He put the chart down and smiled and said “I’m your new pediatrician. I came by to say hello and meet my new boy!  I would like to see you the day after our boy gets home.  Don’t you worry darling, you are in good hands.  He’s going to be fine.  Now get some rest and I will see you in a few days.”

I was in shock!  This doctor made it a point to come to the hospital, find us, introduce himself and welcome us.  Right at that moment, I felt like I had just hit the jackpot, at last, a caring doctor! He was like a male version of Mary Poppins.  He made everything better!

That introduction happened in early 2004.  After all these years, he continues to make everything better.  He is a great doctor who cares very deeply for his patients.  He has helped us navigate all the illnesses, syndromes and diseases my children have been diagnosed with.  And when he doesn’t have all the answers, he knows who to send us to help us out.  But most importantly, he listens!

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Day 8 Life Goes On

Hubby went back to work right away. At first for only 1/2 a day. But at the dawn of a new work week, he was back at work fulltime. We couldn’t afford to live on my short-term disability income (but thank goodness my employer offered it) and have him without a full paycheck. The world continued to spin. Except mine. Now, looking back, I realize that my world didn’t stop spinning, it was just spinning on a new rotation that I did not want to be a part of.
But, life did go on. Every day, I pumped breastmilk every 3 hours, even in the middle of the night. I got dressed, waited for my mom to get me. We would have breakfast together and then go to the hospital. We would spend between 10-12 hours hovering over the incubators. Hubby would go straight to the hospital after work to visit with our children. We would go to the local diner for dinner during change of shift. We’d visit for an hour more and then go home and then repeat the cycle the next day.

On the 8th day, I entered the NICU and stored my breakmilk in the freezer. Oddly, the nurse’s desk was empty so I couldn’t get an update. Panic started to rise in my throat, as I approached my son’s incubator, I realized with horror that it was empty! And it was a mess. There were wires everywhere, the paper bedsheet was askew. I looked for the nurses and they were moving quickly, but happily huddled around a baby. They lifted the baby onto a scale and I saw that it was a boy. Could it be my boy?
It was! And he was free. Free of the cap on his head, the mask that covered his eyes, the venitlator that covered most of his face. And best yet, free of the tube that had been inserted into his chest! There was a huge bandage that covered the space where the tube was.
I spoke up with tears “That’s my son!” One of the nurses saw me and gave me a huge warm smile. “Yes, and you should be so proud! His lung has healed nicely and we were able to remove the chest tube.”

“Can I hold him? Please?” She then gave me a sad smile and told me “No, I am sorry. We need to move quickly and get him back on the ventilator. He still a needs help breathing. We were hoping to surprise you before you got here today.”
“Oh, I am most certainly and pleasantly surprised, but, can I see him before you hook him back up?”

She slid over and let me stand next to her as she hurriedly finished weighing him and did other things to him. I did not care to notice what she was doing because I was finally getting my chance to see what may baby looked like. And, oh my, he had the deepest darkest brown eyes I had ever seen. They reminded me of chocolate candy, Hershey Kisses. They were that milky brown. And his hair was jet black. And he had so much of it!! Meanwhile my daughter had very light colored hair and not much of it. She looked more like a hairy little peach. His hair was straight, dark and stood out in all directions. He was beautiful!  And I was in love all over again.
And he was getting better!

 

Lesson learned: I have looked into your eyes with my eyes.  I have put my heart near your heart.

Pope John XXIII

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.

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 4.1 – A Twin’s Bond

I needed a break from the remaining somber faces in my room. Our family had come to support us but it was a bit overwhelming for me.

I buzzed the NICU intercom and they let me in.

They had separated my babies. They were no longer side-by-side.

My son was now the first incubator that could be seen the moment anyone entered the NICU. He was right next to the nurse’s station. He had a front row seat in the NICU where the nurses could keep a super watchful eye on him.

There was another baby that separated my children.

My daughter’s incubator was right where it was the day before.

The atmosphere was awkward. The nurses barely made eye contact with me. They told me that he was holding his own but could not give me any indication if that was a good thing or not.

I shuffled over to my daughter’s incubator and I sat on the stool next to it. I put my hand through the little hole and I held onto one little leg. Tightly.

I told her while she was his little sister, she needed to keep an eye on her big brother.

The not-so-nice nurse overheard me talking to my daughter and chimed in. “Don’t worry Mrs. Quinn your daughter has it covered. Yesterday, all of a sudden, she began fussing and wouldn’t quiet down. She made quite a ruckus. We went over to see that she seemed agitated, yet it seemed that there was nothing wrong with her. But just then, your son started going into distress. It was like she knew that he was going to need our help so she called our attention before he got bad.”

To me, that.was.profound.

Without making eye contact I asked her “Do you think she knew her brother was in trouble?”

The nurse paused and said “We see it happen a lot. It’s like the stronger twin starts to fight for the twin who is in trouble. It’s like they want their energy to help the weaker twin. It’s a unique bond that I don’t think anyone but twins will ever understand.”

I whispered “Thank you.” to my daughter and hung my head down fighting back more tears.

They were literally in the fight of their lives and they were already watching out for each other.

Lesson learned: Never underestimate the power of the bond between twins.

Day 4 – What’s In A Name?

While we already had agreed on a name for our daughter, naming our son proved to be quite the challenge.

For various reasons, many of them quite silly, we just could not agree on a name for our little boy.

The day they saved my son’s life by inserting a chest tube, the nurses had asked me if we were ready to name our son. Sadly we were not.

Looking back now I think that I was very reluctant to name my son for fear that he may die. I do remember thinking that if I uttered his name, I may only be able to sing it once and then lose him forever. Pathetic and selfish I know.

I know it sounds utterly sad and ridiculous but looking back, I really do think that that is where my heart was.

Our family kept vigil with us while we waited to hear updates of my son’s condition. The topic of his not having a name came up in conversation.

I recall getting very defensive because we could not agree on a name for our first born child. I remember breaking down and accusing my family of judging. I remember telling them “How dare you judge me! None of you have ever been in these shoes. You all had healthy, full term babies who went home with you in a few days. None of you had to leave your baby behind in the hospital not breathing on his own! None of you will know the pain in my breaking heart of how close he is to not being able to coming home at all! What if he doesn’t make it? How am I supposed to go home if he doesn’t make it? I am being discharged home in two days with no babies! I am going home to an empty home without my children. My family is being split up. Half here at the hospital and half at home. Naming our son is none of your business, so keep your opinions to yourselves and do not worry. He will have a name when we are good and ready to agree on one!”

It was intense time.

I am not proud of the things that I said. And I am not defending my words. But I remember being so scared and alone because no one truly knew what I was going through. All I know is that by the time I was done with my hysterics, quite a few family members left my room in tears.

Frantic – Surviving My Premature Baby’s First Operation

My husband arrived about 20 minutes after my frantic phone call. I was painfully pacing the room.

We kept asking all those terrible, anxiety filled questions one asks when waiting for someone who is in surgery.

Why did this have to happen? he is only 3 days old!! He’s a premie, he is too fragile for this!! What is taking so long? I wonder if they even started yet. How long is the surgery supposed to be? Were they going to operate right there in the NICU or do it in a regular operating room? The baby is so small, can he even handle anesthesia? What if something goes wrong? How will we know? What the hell is taking the doctor do long? When will we get an update? How long will his recovery be? This is a huge operation and he is so small how will this affect him down the road?

We decided that we would call our own parents and explain that our 3 day old baby, who was born too early, was undergoing an operation to fix a hole in his lung and ask them to pray for our baby. It all seemed too unreal to say all of that. Both of our mothers offered to spread the news to our siblings so that we wouldn’t have to repeat the awful news.

Our siblings and parents started arriving at the hospital in spurts. Everyone was trying to be cautiously optimistic and encouraging. No one in our families had ever gone through something so dramatic. No one had any experience, information, statistics or stories to share. Or if they did, the outcomes were probably not positive and they chose to keep those stories to themselves.

After what seemed to be an eternity, the doctor entered the room and reported that the surgery was a success. The latest x-rays revealed that the pressure had decreased in the baby’s chest cavity and his heart and other lung are slowly moving back to their respective places, but our son still required a lot of oxygen.

Everyone in the room breathed a huge sigh of relief. But the doctor did caution the next 24 – 48 hours were precarious and he would continue to be monitored closely. The doctor explained that they inserted a chest tube between his 2nd and 3rd rib to alleivate the pressure. He could not determine how long the chest tube would need to be in place. He made it clear that I would not be holding my son anytime soon.

Naturally, I had wanted to know when could I go in to visit him. The doctor advised that I keep my visit short and to avoid stimulating him in any manner as it would be best if we didn’t excite our son. Even the sound of our voices could prove to be too much stimulus for him.

The excitement would make his heart beat faster and his respiration would increase, which was not an ideal situation for someone who was in his delicate condition.

My husband and I followed the doctor back to the NICU.

Reliving these memories is just too painful.

My husband stood by my side as I sat on a stool by our son’s incubator. My husband and I didn’t speak. There were no words to be said. We visually soaked in the sight of our son.

I subconsciously held my breath as I inspected all of the bruises on our son’s tiny body. He sustained these bruises during the weeks of nonstop preterm contractions my body subjected us to. I was hospitalized for 7 weeks prior to their traumatic birth via c-section. Those bruises covered him from head to toe. Thankfully they were starting to fade into a tinge of yellow as they were healing, but it was still painful to look at.

While the swelling in his right arm had diminished greatly, it was still swollen and restrained by a board so as to avoid further nerve damage by involuntary movements and reflexes.

My eyes focused on the new tiny tube that was now coming out of his chest. That tube was saving his life.

He looked broken, bruised and battered. And this exactly how I felt.

With tears streaming down my face, all I could think was, “He is so small. Why must he suffer through this?”

Lesson learned. The greatest gifts come in small packages.