Bump On The Road

Maksim enjoying his bassinet with rotating bears and music

With a newborn baby comes new and exciting experiences, like the first visit to the pediatrician - which occurred on Thursday, December 29, 2011.

When we arrived at the pediatric office, the lobby was void of people but filled with untouched magazines, toys, kids' desk and chairs.  The walls were covered in colorful posters and the carpeting had an interesting pattern.  I filled out and faxed Maksim's paperwork ahead of time so the medical assistant (MA) took us back immediately.  She directed us to the last room at the end of the hallway. The room was decorated in the University of Iowa football memorabilia.  One of the walls had a gigantic picture of the Kinnick Stadium; dispersed throughout the room were wall stickers of footballs, the like, and the Hawkeyes logo.  It was definitely a boys room.

Like any new patient appointment, the medical assistant asked questions about family history and then took Maksim's vitals.  He had to be weighed so we took off all his clothes (except for a clean diaper). Baby Maksim lost weight (as do all newborns after birth) and weighed a little over 9 lbs, still 21 inches long. 

His doctor was on holiday so we saw the nurse practitioner on duty.  Nurse Practitioner (NP) J has a very delightful, colorful, personable, and bubbly disposition perfect for kids to love and warm up to.  She did the necessary routine to examine babies and then listened to the heart beat.  There was silence then:

"I heard a heart murmur but I want to get the doctor on

duty to verify and get a second opinion. Is that okay with you guys?"

With those words my heart sank and all of a sudden I didn't know how to breathe.  The doctor on duty, Dr. K., came in to listen to Maksim's heart.  He verified an audible heart murmur and tried his best to answer all our questions.  It took my all to be strong, to stop the tears from streaming down my face.  What was happening?  There came an instant worry that never existed before I became a mother.  It was then my perspective on life was altered.  It was then I realized that someone's life became more valuable than mine and such disturbing news hit me hard.  The enormity of reality was then explained to our families, which brought on more sadness and tears.

Dr. K immediately referred us to the University of Iowa Pediatric Cardiologist to get things evaluated so not to miss anything.  The next day we got an appointment.  

The university hospital is nice and modern, but still a hospital and being there made me cringe - hospitals are so depressing.  At the entrance of the Pediatric Specialty Center stood a woman on her mobile leaning over a glass wall overlooking a view of a building in construction - she was speaking to someone and crying.  I felt her pain and prayed that her condition would not foreshadow what was to come. 

At the hospital they did tests on Maksim: ECHO, EKG, and X-Rays.  I will refrain from detailing what occurred during these tests because it was difficult to see our baby endure so much at such a young age.  He cried most of the testing time and all I could do was to whisper how sorry I was that he had to go through it all.  It was draining.

The tests took 3-4 hours.  Towards the evening we finally saw the Pediatric Cardiologist who interpreted the tests.  After introductions and preliminaries, she delivered the bad news.  Maksim has a congenital heart defect called Pulmonary Valve Stenosis (PVS). This basically means that the valve on the right side of his heart prevents sufficient amount of blood to pass through to his lungs - which ultimately limits his oxygen intake.  The doctor further discussed a balloon angioplasty/cardiac catheterization procedure to normalize the blood flow.  This procedure allows the surgeons to insert a catheter to the baby that will travel towards the heart to the defected ventricle.  A balloon will be aired to widen the valves for the blood to flow through.  If this procedure is insufficient, then Maksim will have to undergo open heart surgery.

It came as a shock to me.  A perfectly healthy looking baby who was discharged from the hospital at birth with no complications all of a sudden had a heart condition.  At first I was distraught, then I couldn't concentrate.  All I could think of were the risks involved in such procedures.  All I could do was to look at my son and silently apologize for bringing him into a world of disease and imperfection.  I blamed myself for not taking better care of myself during pregnancy - that somehow I brought this upon him - that it was my fault that he was suffering.  My whole being was in turmoil that in the middle of it all, I became engulfed in a state of an emotional break down that it became difficult for me to speak, ask questions, and look at the doctor in the eye.  I couldn't keep my composure but was thankful that Dre and my brother, Izzy, were with me to get all the facts straight. They asked all the questions while I held Maksim tight in my arms, sobbing.  It was the last day of the year and I was an emotional wreck. 

The beginning of 2012 was unpleasant, while everyone was celebrating the new year, there was a gray cloud that hovered over our heads.  It was (and still is) difficult news to take but we are fortunate to have a community of friends and family members who support/ed and pray/ed for us through the tough times.  It would have been more difficult without them.  

The new year was emotionally challenging.  I was in war with myself with the blaming.  I didn't understand because neither Dre nor I have a family history of congenital heart defects - but like the doctor said, it can happen by chance.  Nonetheless it was a weekend of emotional roller coaster that got me in a fetal position in a pit that I didn't want to get out of - even though I desperately wanted the burden to be lifted off.  I turned off my mobile and didn't want to speak with anybody.  Talking about it made it more difficult and my head was already pounding and spinning from it all.

We were asked to come back on Tuesday, the 3rd of January 2012 to do a more thorough examination on Maksim's heart.  To make the long story short, Maksim's condition didn't worsen so the next course of action is to have a follow-up appointment in two weeks to monitor his heart.  Hopefully the next ECHO test will show an improving valve.  If the condition stays the same or worsens, the doctors want to do the procedure, balloon angioplasty/cardiac catheterization, in a month's time.  Although our baby still has the condition, this news made me feel better because his PV isn't as severe as we anticipated.  He has good coloring and hasn't shown signs of bluing due to low oxygen levels.

In light of the situation, I vented out my frustrations to Dre about how unfair everything was.  He responded with:

"It is a rare condition, but why not us?  Things happen for 

a reason and we can handle it.  Maksim needs our 

love and support right now so we should be strong. 

We should be thankful for modern medicine."

I was upset with his response at first because I wanted him to agree with me, but he was right.  Maksim is a handsome, beautiful, special little baby boy that needs more love and tender loving care from his parents.  We are there for him no matter how hard it is for us.  Things do happen for reasons unknown.

I'm not going to say that its been easy - a parent's job is not a walk in the park.  Having a "heart" child makes me look at life in a different light - that life is more precious, miraculous, more of a blessing, and a privilege.  

Besides the support and the prayers from friends and family, what helped me cope with such the situation were the parents of children, from a "heartline" forum, who also have congenital heart problems.  Most of their situations are worse than ours.  Their children were born with multiple heart defects: criss-cross heart, missing chambers, holes in the heart, etc.  Many of their babies had open heart surgery at 1-2 days old and survived.  It's really heartbreaking but their support really helped me go through a lot of confusion - that there is always hope - never give up no matter what happens.  I too can be strong for our baby... and someday I too can reach out to parents going through the same situation. 

Maksim, our handsome baby boy.

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

- Serenity Prayer -