Tag Archives: chest tube

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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Once is Enough

A few months ago, I received an invitation in the mail.  As I read it, I was flooded with sadness.  Invitations generally are not supposed to invoke sadness, especially invitations to reunions.

I set the invitation aside and contemplated whether or not I should attend.  I knew that in my heart I really wanted to go, but at the same time, the thought of attending just overwhelmed me with anxiety and sadness.

I called my mom and asked her if she wanted to be my date for the event, as always, she agreed.  She thought it was wonderful that the NICU was hosting a reunion.  She thought it would be great to see all the doctors and nurses that saved my children’s lives when they were born.  Of course she was right!  It would be nice to see everyone and show off how big the children have gotten despite their scary start, but I was sad that I couldn’t share her excitement and joy.

I am incredibly grateful and indebted to the all the doctors and nurses that cared for me and my children.  There is nothing that I can ever do or say to repay them for giving me my children’s lives.  I still send Christmas cards to the NICU and am still in contact with 2 very special nurses.  But I don’t like to think about those dark, dark days.  I guess this is why I haven’t really kept up with this blog.

Having spent so much time in the NICU left me traumatized.  I don’t want to put too many more words into trying to describe my experience, so I will only use one: traumatizing.

The morning of the reunion I prepared my mom and told her that I was going to try to keep it together, but I knew that it would not be easy.

Walking into the event hall I already felt the lump forming in my throat.  I scanned the room and found the doctor who performed the emergency chest tube insertion on my son who was 3 days old and weighed a little over 3 lbs. at the time.  My son’s lung developed a small hole, and the doctor had to make an incision into his chest and insert a tube to suction out the air being forced into his small body by the C-PAP machine.

So much time had passed since I had last seen this man.  Thirteen years ago this doctor saved my son’s life.  I walked up to him and began to cry.  And I could not stop crying.  I could not even speak.  The doctor has no idea who I am, or my son’s name.  All he could gather was this woman (me) walking up to him, crying, and trying to stammer out “Thank you.” and hugging him.  There is so much I had wanted to say, and so much that I could not.

Thankfully, my son was able to speak for me and introduce our family.  I looked over to my mom, but she was crying too.

I was just very emotionally overwhelmed by the number of people in that room who were alive because of the doctors and nurses who saved their lives.  I was overwhelmed by the number of parents who are also hurting due to the losses they endured, and yet, so eternally grateful for their beautiful children that are alive thanks to these doctors and nurses.

I came across a woman who was proudly sharing her pictures of her baby in the NICU with the various doctors and nurses.  She assumed that I had pictures as well.  I firmly told her that I did not.

I do not regret my decision of not haven taken any pictures of my children while they were in the NICU.  In fact, I refused to allow anyone to take pictures.  It was awful enough to witness my babies being attached to machines and IV’s and heart monitors and blood pressure cuffs and PIC lines and a chest tube.  NO!  This was not something I wanted to record.  Or remember.

I had only 2 pictures of my children in the NICU.  They were taken by the NICU staff.  They are blurry Polaroids and they are enough of a memory for me.

It wasn’t until about 2 years after they were born that my dad was having trouble with his computer and he asked me backup his computer and photos.  Lo and behold, I came across several pictures of my children in the NICU.  I was shocked and angry!!

My sister, who was pregnant at the time, had snuck into the NICU and had taken pictures of them.  She defended her actions and told me that she did it because she thought that maybe some day I might change my mind and she wouldn’t want me to regret not having these pictures.  She felt that maybe the children should know how their lives started.  It is a part of who they are.  I still do not agree, but I did save the pictures.

I have a special album set aside with just those NICU pictures.  That album is not viewed very often, but it is there if they ever want to see those pictures.  My children have very typical baby albums, it’s just that they begin when the twins were 2 months old, which is when my son came home from the hospital.

Try as I might to forget those dark days, they have left an indelible mark in me.  I tucked all the pain of watching my children struggle to breathe into the deep recesses of my heart and mind.

I have new heartaches that we contend with on a very regular basis.  I have shifted my energy and focus on my children’s growth and development.  I have been navigating the rough seas of their accumulations of diseases, syndromes and illnesses.  I have been dedicated to following up with each specialist and follow the regimen of medications, supplements and therapies.  I celebrate their milestones and try to not relive the past.  But it does have a funny way of sneaking up on you.

While it was a wonderful opportunity to try to say thank you to very special people, I don’t think that I will be attending anymore NICU reunions.  There are just something things I want to experience once.  NICU stays and NICU reunions are on the top of my list.

 

Day 8.1 Life Goes on and it Gets Better

My husband got out of work early that day. It was a day of celebration for us. Our boy’s lung was “healed” and he was no longer just “stable”. He was improving!

It was a huge milestone and success. Seeing our boy with one less tube in his frail body was invigorating. We had been so sad and felt lost for what seemed like a lifetime. For me, my world was at a stand still. But here he was, getting better. It felt like the conveyor belt of life start moving again. It meant that he was one tiny step closer to coming home.

We knew that he still had many more obstacles to overcome. At this point he was eight days old. His birth weight was 3 lbs. 12 oz.. Due to his collapsed lung and subsequent chest tube, he was unable to be fed. Even by tube. He had yet to learn the taste of breastmilk or formula. He was subsisting on IV fluids being injected into his tiny veins. He lost weight and dwindled down to 2 lbs 10 oz.. He had lost more than a whole pound!

Little Mister still had to learn how to breathe on his own. He was still very much dependent on the ventilator.

His body needed to learn how to self regulate it’s temperature, therefore he still required the warmth of the incubator.

His brain, lungs and heart needed to find their life sustaining rhythms. His brain would “forget” to send signals to his lungs to make him breathe. His brain would “forget” to send signals to his heart to make it beat.

He still had so much more healing and growing that he needed to do before we could even begin to hope that he would come home soon. But we took that day as a day of victory and celebration. It was a step closer to us being able to bring him home. Being weaned off of the chest tube was a monumental task for him to have achieved. His little body has already been so battered and been through such awful trauma, and he was overcoming an awesome feat for someone who weighed less than 3 lbs and was only on this earth for one week.

He is my warrior, my fighter, my champion and a survivor!
He is my son!

There is nothing happens to any person but what was in his power to go through with. ~ Marcus Aurelius

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 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 4.2 – A Sister’s Bond

My sister magically appeared by my side. She was gently rubbing my back while stifling her own tears.

“What are you doing in here? I thought they said only allowed parents and grandparents to be in here.”

She replied, “Since you’re by yourself and mom is not here yet, I told them that I was taking the place of mom. Besides, I don’t think they would have the heart to turn away a pregnant woman.”

I dug my head into her chest and sobbed “Thank you.”

My sister and I were pregnant at the same time. Our due dates were within a couple of weeks of each other. We hadn’t planned it that way but we were both so happy to be pregnant at the same time.

We had planned on navigating pregnancy and motherhood together. We had already known that I would have one boy and one girl and she chose to not know the sex of her baby. It didn’t matter because no matter what, boy or girl, her child would have an instant companion. We had planned on sharing toys, clothes and mommy duties. We were supposed to go furniture shopping together and choose items for our registries together. We were looking forward to shopping and eating our way through pregnancy.

But I abandoned her very early on. I was placed on strict bed rest at 19 weeks. Then hospitalized at 24 weeks.

Now here I had delivered these babies a little more than two months ahead of schedule at 31 weeks.

I cannot imagine the fear that she must have felt in her heart coming to see me and my babies. She had to be wondering if her child, who was still growing in her belly, looked the same way that my children did. She had to be wondering what would she do if she were in my shoes.

I urged her to leave the NICU. I told her “Don’t spend too much time in here. It’s very sad in here. You are pregnant you shouldn’t be in here. This place to too depressing. You should be out shopping, eating and getting pampered.”

She told me that there was no other place that she wanted to be except by my side.

After several minutes of peaceful silence, she asked, “Parker, please don’t get mad at me. I want to ask you a question. I know you’re probably not thinking about this. But do you want me to take pictures of your babies?”

“No.”

“Okay.”

“No. I do not want to remember them like this.”

“It’s okay Parker, I understand. I probably would not want pictures either. But I don’t want you to have any regrets later on thinking that maybe you should have and you didn’t think about it at the time.”

“No! No pictures! They do not make me happy. I don’t want to remember them not being able to breathe on their own. I don’t want to remember all these wires and machines and tubes. I don’t want to remember how to tiny and frail they are. I don’t want to be in this situation and there is nothing that I can do to change it. So I certainly don’t want to remember and relive it through pictures.”

“Parker, it’s okay you do not have to explain yourself to me. I know it’s not easy. I understand.”

“I.Can’t.Name.Him.” I sobbed.
“And I feel awful about it. We have had her name picked out for the longest. But we cannot agree on a name for him.”

“Parker, do not let the family pressure you into something you are not ready to do. He is your baby. You do what you feel you need to do for him and with him.”

“It’s not that. I just feel so awful looking at the tag on his isolette and it just says Baby Boy Quinn. And I’m so embarrassed because every day the nurses asked me if I have chosen a name for him yet. And I just can’t do it. I just cannot give him a name just yet.”

“Then don’t. Take your time Parker.”

“What is his life going to be like? Is he going to live past these medical problems? It’s only been four days since he was born and look at how much he has already endured.”

“Yes, without any doubt, he has been through a lot. And you have every right to scared. But you have been through a lot too. Parker, he is strong, and he is a fighter, and he is still with us, and you are his mother. You are strong, you are a fighter. You survived nearly 10 years of infertility treatments. You suffered through too many painful and emotionally draining medical procedures to get pregnant. You survived the prison of sorts for the last seven weeks been subjected to terrible hospital food, poking, probing and endless monitoring of you and the babies just to keep these babies in you. And you did it with such grace, presence and gratitude. But you survived! And you here you are, standing here next to both of your babies. You are strong they have no choice but to be strong to. It’s in their DNA. His name with come to you when the time is right. And when it does, it will be a name most fitting for who he is and who he will become.”

I hugged her and thanked her again.

Lessened learned: Is solace anywhere more comforting than in the arms of a sister ~ Alice Walker