Wednesday, February 26, 2014

Grant me the Serenity

This week is our first week since Jan 20th that we haven't received new, worse information.   We had a follow up visit with our cardiologist, who performed a fetal echocardiogram (sonogram).  Laura and I said this prayer while waiting.

Lord grant me the serenity 
to accept the things I cannot change;  
courage to change the things I can; 
and wisdom to know the difference.
Living one day at a time; 
Enjoying one moment at a time; 
Accepting hardships as the pathway to peace; 
Taking, as He did, this sinful world
as it is, not as I would have it; 
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life 
and supremely happy with Him
Forever in the next.

Our doctor was pleased with the clarity of the echocardiogram.  Micah is larger, which makes it easier for him to see his heart lesions clearly.  It’s incredible how much change is viewable on his heart in the past 3 weeks.  It’s also incredible the impact of simple, grainy, black and white images have on our family. 

The good signs are that his heart is growing at the appropriate rate and that his heart is operating at the appropriate function (both ventricles have a good squeeze).  Aside from that, there isn’t much more to ascertain at this point.  He still doesn’t see a pulmonary valve.  He can’t view the small valves (MAPCAs) that send blood to the lunges.  The valves will be critical in the operations that occur after birth.  It seems that the surgeons will have to place a conduit from the right ventricle, to act as a pulmonary artery, and link the MAPCAs from the lungs to the conduit. 

We spent some time talking with our doctor and obtained some new information about what to expect.  A slight degree of TOF would likely have just 1 surgery, to fill the VSD and to remove obstructions in the pulmonary artery.  Since Micah’s is at the other end of the spectrum, he’ll likely have a surgery right away, stay in the hospital for a number of weeks, and then have another surgery prior to turning a year old.  This seems to be it.  Just wait until the birth (which, we pray will happen near full term).  Next week we will meet with our surgeons. There is so little that we can do.  We are powerless and weak. 
Laura and I have been listening to Fr. Emmerich’s “Detaching with Love” CD’s over the past few weeks, by recommendation of my sister.   Fr. Emmerich is a friend of my parents.   It’s very helpful to realize that there is no such thing as a normal situation exempt form difficulty.  We live in an imperfect world.  We are weak and powerless without love.  In dying to what we hold dear, we may experience the grace of God’s love.  Here’s a link if you are interested.
We’ve also prayed a novena to St. Francis (via the website).  I feel I pray for something new each day.  Pray for strength. Pray for Micah’s soul. Pray for Micah’s heart. Pray for Laura. Pray for peace. Pray for Dylan. Pray for humility.  Pray for family. Pray for friends.  Pray for the woman who was honking like a mad person on the way into work today.  Pray for wisdom. Pray for understanding God’s will.

One of the primary struggles that I’ve dealt with the past few weeks is in deciding to keep course or pivot.  

Some days, it’s a battle to simply get through the day (last Monday comes to mind, see Laura’s last post).  Some days, I’m left with decisions on how to spend my time and energy.  In January, Laura and I were making progress towards moving.  I can’t say if we should move or not, but I’ve been spending time working on making improvements in our condo. I’ve installed bifold doors, painted hall doors, installed new door handles, removed and installed a new door jam, removed and installed a new ceiling fan.   Dylan seems to enjoy participating.  

I hope that Laura and I can set ourselves up for making a sound decision on moving and I hope that we’ll see God’s plan when we are faced with the decision.  

I’ve been continuing working out 6 days a week.  It’s a very difficult decision to spend time and energy in working out, as opposed to in other areas.  I’m trying to decide if I should cram for GMAT’s, take the test, and submit an application to GMU’s MBA program prior to 3/15 – in order to be considered for a potential scholarship.  
I’ve been playing music lately.  I find it terribly frustrating to sing well (which is the current state I’m in).  Stress plays a large factor in that.  I’m surprised how many people have asked me lately about if I’m playing music.  It’s nice to hear people’s interest. 
I’ve had a couple of work/career related changes that presented themselves before me.  I know that the more effort I place, the more changes will come.  It’s hard to decide what to do there, as well. 

Sure seems like a lot when I write it all out!  What am I doing…

I want to say thanks for reading. Thanks for the support.  I've had a number of moments where peace was easier to obtain, due to the support and prayers – I’m sure.  I truly hope that there are 1 or 2 people that will read our blog and help find peace because of our story. 

Remember that we are all weak. We live in a flawed world. We can find peace. Love is greater than evil.

Know yourself. Trust in god.

Monday, February 17, 2014

Daily I Wonder

This past week Dylan was cutting his molars. OUCH! Can you imagine having your teeth grow in for the first time ever?? He's just been a hot mess lately! He'll start crying for no reason, go limp wherever he's standing, fall to the floor, or into the bookshelf, or on a toy, and accidentally injure himself in his apparent misery. Thursday, as he was crying he ran to the front door, stopped inches away from it, and then ran into it (on purpose?). I think he's going crazy with pain, ha. Not to mention he has a cold :(

Being little is tough! Another recent development is his relationship with Luna. Ray and I yell at her when she barks or growls at the front door (condo living... in the past, neighbors have already written us anonymous complaints about her noise) or when she jumps on guests. So, Dylan has started yelling at her when she gets a little excited or starts barking. It's really sweet because Luna just think's she's getting lots of love and attention from Dylan.

And I swear, every day Dylan learns a new word. One of his latest is "Jesus", except for it sounds more like, "JeeJee." SO CUTE! He'll point to the crucifix hanging in our bedroom, or he'll be playing with one of our rosaries repeating "JeeJee, JeeJee."

I went to another follow up appointment today. About two weeks ago the perinatologist said Micah's kidney's were a bit swollen and they'd have to monitor them throughout the pregnancy. Today, his right kidney hadn't changed, but his left kidney measured slightly more swollen. They didn't seem too concerned and said they'd continue to monitor it.

I was also told two weeks ago that I had partial placenta previa. Today, they said everything look fine and it is no longer an issue! YAY!

But... I've been told to "take it easy" because I have another condition that could possibly lead to preterm labor, UGH! I asked exactly what "take it easy" meant and the perinatologist said: no running errands, no household chores, minimize walking and stairs, no picking up your child, picking up or carrying heavy objects, no sex, etc. I can basically go to work (thank goodness) and come home to do nothing. It doesn't sound SO bad... but when you're restricted, thats when you realize how much moving around you actually do.

It makes me upset that my new baby is facing these special challenges and now my body seems to be falling apart. WHAT THE HECK! The last thing I want is to deliver Micah before I'm full term. Just pile it onto my long list of worries that I'm trying to negotiate with God.

God negotiates, right?

So many people have reached out to Ray and I since we told everyone about Micah. I'm so thankful for our huge support system. It's especially comforting to have strangers (referred through mutual friends) and friends I haven't spoken to in years reach out to me to share their personal experiences with similar situations. It lets me know that everyone has their own struggles and although they might still be experiencing grief, uncertainty, disappointments, anxiety, etc. they've made it this far. It gives me comfort and assurance that God will give Ray, Dylan, Micah and me the strength we need to pull through this. So, thank you everyone for your kind, thoughtful and loving words. You have no idea how encouraging they are to us. We love you all!!

Sunday, February 9, 2014

Laura is amazing. Dylan is perfect. We love our baby. God is good.

The past three weeks have changed my life.  I've experienced more pain, sadness, fear and frustration than I previously thought I was capable of.  Each Monday was a wave of increased worse news about our baby's state of health.  Though I have traveled though these painful moments, I am filled with love for my baby, love for my family and love for God.  

I've written a personal, detailed account of the past three weeks.  I started writing on the idea that Micah and Dylan could read the story, someday.  I hope that my words will bring peace to our family and peace to those who read and share in our journey.  I have a few moments over the past week that I feel are important to share. 

Monday, Jan 20 - Day of the gender ultrasound: The moment when Laura and I, alone in the doctor's office, knew to ourselves that the technician's were seeing something wrong in the ultrasound.  Laura, just barely able to voice the question out loud, asked if I thought something was wrong.  Laura teared up as I tried to console her.  When the doctor came into the room, the truth of the situation was visible apparent on her face.  The doctor's words of "there seems to be an abnormality with the baby's heart" carried a crushing weight.  Seeing Laura cry, then, was the worst of that moment. 

Monday, Jan 20 - Day of the gender ultrasound: Leaving the hospital with Laura.
Nothing felt real that day; it was as if it were an elaborate dream.  We entered the hospital wonderfully hopeful and excited to hear if we were having a boy or a girl.  We left having been asked if we want to terminate the fetus.  The drastic change in perspective occurred over just a few hours.  

Monday, Jan 20 - Walking the dog in the flurries and starlight.
Realizing that there is next to nothing I can do to help our baby,  I decided that we needed to name him.  I looked to the stars and asked "why" the on sought of this much pain is coming to my family.  I cried in a moment of realization.  Realization that I've been training for over 60 days through intense physical fitness - perhaps to be ready.  I thought - with all the BS in the world - someone needs to be strong enough to endure, to bring God’s light.  Maybe I’m strong enough. Maybe we’re strong enough to do that.  I beat my chest three times on each side.  Let me bear the pain. Let me bear the cross. Let me do your will. Take this pain from my wife and my unborn child.  Heal my child. Embrace my wife with comforting love.  

Tuesday, Jan 21 - Morning snow and lost ring. I was shoving snow off our car and noticed a large chunk that was behind the wheel. I thought of kicking the snow clump aside, but then decided to pick it up and toss it. In doing so, my wedding ring slid off, bounced on the pavement, and disappeared into the snow. Laura and I searched for 10 minutes before leaving. She reminded me that "it's just a thing" - knowing to herself that I wouldn't find it. I returned home and refused to fail at finding my ring. I feared that this was a test designed to prep my ability to lose something sacred. I searched for 30 minutes unsuccessfully and then returned and searched again. Shortly after praying to St. Joseph, I found the ring. Laura couldn't believe it. 

Saturday, Jan 25th - a week of prayer. After attending Mass each day, praying the rosary and then attending reconciliation, I have felt multiple moments of clarity, peace and strength. I would leave mass feeling amped and ready to battle the day. I could commit to being thankful to God for the gifts in my life - thankful for Laura, Dylan, our baby on the way, family and friends. I learned the valuable lesson that - though I may be able to show strength to Laura through the unfolding events - matching Laura's emotions, being emphatic and being present to Dylan are the truly valuable contributions.  

Thursday, Jan 30th - an email with a friend. In emailing my good friend, he taught me a valuable lesson. Don't waste my time asking "Why?" Understand the reality before me. Seek and hope for God's grace to be strength for my wife and sons. 

Friday, Feb 7th - Date night with Laura. Laura and I went to Mexicali Blues and Bakeshop in Arlington. We spent the whole night in deep conversation with each other. We have so much to talk about, so much to laugh about, and such strong love for each other. Laura helped me realize that, no matter what, we will bring our baby Micah into a world of love and joy.  

Dylan started saying "Daddy" this past week. I believe that my suffering is a means to expand my capacity for love. I am filled with love for my wife, Dylan and my unborn son. I see Dylan as an amazing older brother.

I pray for strength. I pray for hope. I pray for faith. I pray to bring light to my family and friends.

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Tuesday, February 4, 2014

Lead Me Home

The days leading up to today were hopeful, prayerful, and disquieting. After we received the news two weeks ago, each passing day had been getting better than the next. In those two weeks, Ray and I felt moved to name the baby. We discussed a few names, and decided to name him Micah. It's a beautiful name and I feel very protective of it. I don't want just anyone to know the name but I want everyone to know he is our child.

This past Monday, Ray received a call from the genetic specialist. She explained that the results from the cell free fetal (CFF) test came back with with indicators for DiGeorge syndrome. Thankfully it was Ray who spoke with her. She wanted to talk to me too but I couldn't even bring myself to call her back to hear the details firsthand. I sat in my office and cried for the rest of the afternoon. It seemed like an emotional set back but I took one look at Dylan when I got home from work and remembered how much my life changed when he entered the world. There were so many uncertainties being a first time mom. When Micah enters the world, our lives will change again. I want to be the best mother I can be. His heart defect and his potential chromosomal abnormality are not about me - they're about him.

But strangely, today wasn't as scary as I thought it was going to be. We met with the cardiologist, the genetic specialist, and the perinatologist. I remained composed without even trying. I asked all the right questions. I think I was just happy that there wasn't any new news. I think God gave me the strength to face today.

The cardiologist still maintains that Micah has TOF with PA, VSD, and MAPCAs. He did however, mention that Micah's heart rate and "squeeze" were within normal range. The genetic specialist told us that they ruled out certain symptoms. For example, it's unlikely he has central nervous system damage based on the imaging of his spinal cord and brain. Cleft lip wasn't seen on the imaging device. He doesn't appear to have any skeletal abnormalities. We won't know anything more about his parathyroid, thymus, or whether or not he has an "intellectual disability" until after he is born. Finally, the perinatologist put us in contact with the nurse coordinator for Inova. The coordinator will take us on a tour of the NICU, set up a meeting with cardiac surgeons and put us in touch with other specialists once Micah is born. Now that I think about it, it seems like a lot to take in, but I feel really confident about the medical team that we're slowly acquiring.

Dylan on the other hand has been such a stress reliever. He's nearly 15 months old and is SO ADORABLE! He loves feeding Luna her food one piece at a time. This activity keeps him occupied for at least 20 minutes at a time. It even diverts him from his favorite dishwasher activities! Sometimes, he'll pick a piece of food out of Luna's bowl, contemplate putting it in his own mouth, and then runs over to Luna who gently nibbles it out of his hand.

He's also able to say the word "Joseph" which, coincidentally, is his middle name and his Granddaddy's name, haha. We think he learned how to say it at day care because Joseph is the name of one of his care takers. Whenever we say "Joseph" to Dylan, he gets this little smirk on his face and looks around for him.

He's also been having night terrors. He'll wake up in the middle of the night screaming inconsolably and everything we do seems to make it worse. The other night we turned the tv on trying to wake him up and he would NOT wake up for anything. He just continued to scream so we put him back in his crib and he started slamming his back/head into the crib rails. It was really kind of frightening! He eventually settled down and fell back to sleep. I researched it a bit and found night terrors to be somewhat normal. Next time it happens I'm going to try not to interfere and see what happens. Poor guy.

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