Friday, March 21, 2014

Normal, what's that?

Laura and I are almost getting accustomed to doctors visits, extreme medical situations and a planned life with a newborn baby that requires serious medical needs and special care.   We are adapting because we have to and because we want Micah and Dylan to have a "normal" life.

The other day, I was updating my former second line manager about Micah's situation.  I explained how we're happy that Dr. Donofrio at Children's was able to break down the key concerns about the 22q deletion as it relates to the heart disease.  The two major concerns: baby has poor calcium and/or poor immune system.  Getting additional knowledge is like getting new batteries to a small flashlight...that I am using to navigate through a dark cave...that is filled with goblins. Anyways!  In this conversation, I'm noticing that my colleague starts getting those signs of visible stress about my family's situation.

This type of conversation has happened multiple times.  As Laura and I pray and strive to understand/cope/learn/grow, we are distancing ourselves from how -straight up - sad this all is.  Laura and I have our "trigger moments" every couple days, but we've decided that we need to be strong and need to be loving - at all times, regardless of our situation.  In a way, this has built up our emotional defenses.

Doctors/family and friends say "prepare for the worst, expect the best."  I got tired of that saying, real quick. What's the worst that could happen?  Well, what about me getting into a car accident, Laura being on her own and Micah dying in surgery.  FYI, that's what goes through my head when someone says "prepare for the worst."  How can anyone prepare for something like that?  That's crazy... I'm definitely digressing, but the point I wanted to make was that Laura and I are preparing for difficult situations (Micah going into surgery right after birth, Laura going into pre-term labor, Micah not developing mentally as fast as Dylan, things like that). In that type of mental preparation, we grow immune to the smaller things - like talking about how Micah has a hole in his heart - no, not the kind that heals itself.

I had a conversation two days ago with my good friend from work.  He came by to check up on me, say what's up and see how the family is doing.  I felt fine, we were doing well that day and the past week.  But in a routine amount of "here's the updates on Micah's/Laura's situation" my man gets emotional. Real life happens from the hours of 9-5 M-F.  Real men get emotional.  (I know you're reading this, by the way, haha, my bad).

These moments remind me of two things. 1. We're going through some hard times. 2. There is no normal.

I watched a video a month ago, there's a camp in PA (Dragonfly Forest) that accepts kids with special needs.  There's a moment in the video where a child says, "There's no such thing as normal."  Boom, hit me like a rock.  I've lived 27 years measuring myself against predetermined standards.  Comparing, competing, judging myself.  It's just not healthy.  Even though I've come a long way on my personal comparisons, like "Man, I wish I was making more money, in relation to other ISE graduates working in the area" it's a whole new ball game in making that leap of re-defining or eliminating the idea of normalcy when I think about Micah.  Thinking about how everyone is on a unique path, everyone is in a different time of their journey, everyone has struggles and everyone is valuable.

To think that Micah will not have a normal life is a wasted thought.  He's going to be born, go through pain, struggle eating, struggle learning, struggle sleeping, be curious, be happy, be loved - sounds familiar.  Any time that I spend thinking negatively is time wasted.  I can spend my time loving others, loving Dylan, loving Laura, loving Micah and even loving my crazy dog.

(Old photo)

Monday, March 17, 2014

Inova or Children's?

The trouble with Congenital Heart Defects (CHD) and genetic anomalies is that you're fearful about whether or not you're choosing the right medical care. I have nothing but love for the doctors, surgeons and nurses at Fairfax Inova. I had a wonderful birthing experience there when I had Dylan. But every time we visit, I just zero in on the frequent phrase, "one of the more severe forms of CHD" and I start to worry. So, after much thought, Ray I scheduled an appointment with the cardiologists at Children's National Medical Center in Washington, DC.

After reviewing the echocardiogram pictures, Dr. Donofrio said she sees what looks like a very VERY small pulmonary artery (PA) that didn't develop properly. And she also sees what appears to be an equally small patent ductus arteriosus (PDA). She also gave us some more insight on what to expect after he is born.

Best case scenario: After Micah is born, if his collateral arteries (the ones that formed in the absence of his main PA) are providing enough blood to his lungs and circulation looks good, then we can go home after a few days to fatten him up and prepare him for surgery 4-6 weeks later.

Not necessarily "worst" case scenario, but least favored scenario: If his circulation is poor then he can expect to have surgery within the first week of his life.

We also met with the nurse coordinator, Kami, and social worker, Heather, who told us about Washington Hospital Center's OB, Dr. Maungman. They both recommended we deliver there so Micah can be transported quickly to Children's - they're right across the street from each other in the same medical complex. They even have a connector bridge so that right after I give birth, Ray can run over to Children's to be with Micah while they examine his heart.

Heather took us on a tour of the Cardiac Intensive Care Unit. Each room is private with two "beds" so the parents can be with their heart baby 24/7. Inova puts their heart babies in the NICU with preemies and other sick babies - it's not specialized or private, and the parents can only coming during visiting hours. After the meeting, Ray and I decided Micah would receive the best post operative care at Children's. The only disadvantage about Children's is that its about an hour from our home whereas Inova is about 12 minutes away. I think we can deal with that :)

Having made our decision I feel so much better about the looming surgeries Micah will need.

Another update is that at the last ultrasound Micah's kidneys were measuring smaller than the previous visit! Finally a bit of good news. And I haven't gone into preterm labor and I'm almost 27 weeks! There are things to be thankful for!

I'm still waiting for that miracle though.