Tag Archives: premature

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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World Prematurity Day

Spolier Alert: this is not your typical celebratory post.

This is our 14th year “celebrating” World Prematurity Day.  Our 14th year of knowing how blessed our family is, in that our 3.5 pound, born 9 weeks early twins are now high school freshmen honor students.  We recognize and are grateful that they a.) survived being born too soon b.) met their milestones and c.) are thriving.

For all that we are thankful for, the experience of giving birth to premature babies robbed me of so many moments of joy, but I was so focused on willing them to survive, willing my body to stay pregnant one more day, that I did not dwell on all the special moments that all pregnant women dream about, long for, and often have the opportunity to experience.

My body rejected the pregnancy from day one.  I spent the greater part of my short pregnancy in bed.  I was put on bedrest at 19 weeks (after emergency surgery to sew up my cervix).  Then I spent the last 7 weeks (24 – 31 weeks) in the peri-natal ward of not one, but 2 hospitals.  But I embraced each and every day during that time as it was my last.  Every day those babies stayed in me, was 3 days less time they would spend in the NICU.  I worked really hard to stay pregnant.

Yet, I was denied the joy and humiliation of buying maternity clothes; wearing a silly hat made of bows and streamers from all the presents at my own baby shower; picking out nursery decor and baby linens; nesting and fussing over decorating the nursery; sending hubby out at 2am to satisfy some outrageous craving.  All of that was robbed from me.  But I didn’t care, none of it mattered.  It still doesn’t.  All that mattered was that I would look forward to hearing my babies heartbeats almost every other day.  The frequent monitoring of the babies was the one thing I looked forward too.  That was all that mattered.

Their emergency delivery robbed me the opportunity to bond with them.  They were cut from my womb, shown to me from across the room and quickly whisked down the hall and placed on lifesaving machines and monitors.  There was no time for the quintessential placing my newborns on my chest and feeling the warmth of their tiny bodies against my skin; there was no feeling their tiny hearts beat against mine; there was not time to count fingers and toes; no time to discover birthmarks; no time to marvel if they looked more like mommy or daddy.  All of that was robbed from us.

I was gutted, left with a literal hole in my womb.  And in my heart.  I felt empty.

The only thing that we had time for was for the doctors to insert needles and tubes into their tiny, frail little bodies to make sure they would have many more important moments in their lives – such as taking their next breath.

  *  *  *  *  *  *  *  *  *  *

Fourteen years later and I am still, not doing a good job at accepting that my children will never outgrow the effects of being born prematurely.

The beast of premature births needs to be stopped!  It steals, it robs, it turns your world upside down.  And, in my case, each passing year, as my children are diagnosed with something new, it is a constant reminder that my children are the ones who are being robbed, and their world is being turned upside down.  All because they were born too soon.

This past year has been a year filled with new diagnoses added to our already complex medical history.  This past week we were at yet, another appointment with another new specialist.  And she said 8 words that hit me so hard, that I almost started to cry.  She was talking about my daughter’s new health crisis and said “this is a byproduct of being a preemie”.  I haven’t heard those words said to me in a long time, and having my teenager being called a preemie stung.  I felt offended.  There was no mal-intent in her tone or in the manner in which she spoke, but I took it as a personal affront.  I felt like the doctor defamed my family, as if she used the word “preemie” like an angry, hateful slur.  I have been trying to hard so get my kiddos to be and stay “mainstream”, “stay on track”, be “normal”,  be like all the other kids their age.  I have been trying too hard to ignore the fact that they will always have medical issues that they will never outgrow because they were born too soon.

So, no.  I am not happy about “celebrating” World Prematurity Day.  It needs to go away.  I do not need to be reminded about the awfulness and trauma of giving birth to premature  babies.  We are reminded of their premature birth every time they get sick.

I don’t know how to express how much it sucks to be a preemie parent, but it sucks 1 million times more to be a teen who lives and wrestles with the consequence of being born prematurely.

We have to find a way to prevent premature births so babies can grow healthy and strong.

#WorldPrematurityDay

An Early Morning Visit

Day 3 – It was early in the morning and I could not sleep. I decided to go visit my babies.

I shuffled down the quiet hallway toward the NICU holding my empty but very swollen and achy belly.

Once I stepped behind the NICU door, my world suddenly became very awake and alive!

Machine and monitors were beeping and flashing, babies were stirring and the nurses greeted me in chipper tones.

They expressed how good it was to see a new mommy in the NICU so early in the morning.

I spent some time with my baby girl admiring her long delicate fingers. And I had to acknowledge that the hubs was right. Our girl would be spending a fortune on lip liner because her lips were shaped just like her daddy’s thin lips.

Then I moved over to my son’s incubator.  I was very happy to see that the swelling in his arm had gone down significantly and it was no longer a deep color of purple.  There were still some swelling and the color of his arm did not match the rest of his body, but it was a clear indication that his arm was getting better.

I commented to the nurse that he had looked better.

The nurse commented that he seemed to be in less pain since they started giving him Tylenol suppositories.

It hurt my  heart very deeply to know that he was in pain.

I had always heard that babies this small do not feel pain.  I have come to learn that that was simply not true.

I really felt bad for my son.  It seemed that they have managed to have things shoved into every orifice of his little body. They left no hole untouched. Even his poor little rectum was violated.

I was learning to read and interpret the numbers that flashed on the monitors.  I noted that while my daughter’s oxygen level was holding steady at 30% from last nights reading, my sons crept up to 42%.

The doctor explained that those numbers can fluctuate for different reasons and that we shouldn’t be too concerned about them. So I pretended to not be concerned about the number being higher than it was the night before.

I decided to focus and marvel at the sight of my babies. I imagined what it would be like to hold my babies: one at a time, together in each arm, one on my lap the other on my chest.  I pondered what their personalities would be like.   I envisioned myself chasing after them around a playground, pushing them on swings and making sand castles at the beach.  I imagined family vacations filled with laughter and fun.  I longed to snuggle with them inhale the sweet scent of their baby skin.

I looked at the time and realize that I  needed to get back to my room. The one thing I knew that I could do for them, I wholeheartedly wanted to do and that was to be able to give them breast milk. . The lactation consultant was on her way to meet me in my room.

Lesson learned:  Appreciated the little things.