Nesting and Moving on

Nesting is what expecting parents do in preparation for their newborn.

With Dylan, Laura and I we're not the best of nesters.  We got a lot of baby items from family and friends, so we really didn't purchase much.  We didn't paint the guest bedroom a bright baby blue.  We didn't get large wooden letters to spell "Dylan" on the wall of his crib.  Thankfully, someone gave us a crib...which we finally started using about 6 months in.

A lot of our nesting was more mental preparation.  Laura and I were giving the first grandchild to both of our parents.  We also were one of the first of our friends to have gotten married, much less, have a child.  I remember having a strong feeling of jumping off into the unknown.  Like standing on an outlook, wondering where to place the first step down the mountain side.

To prep, we each read a book on attachment parenting, which basically said a lot of "do what you think is best." (It's easy to read books with a message like that!)  I had an encounter with a woman at an airport.  She noticed my reading and commented, seemingly friendly enough, with an "oh! Are you expecting?" I replied confidently, "Yes, I am."  She directly went into recommending me a book on training your baby "I got my baby on a schedule very quickly."  I had my first moment of being a bad ass dad and replied to her, "Why would you want to train your child?  Your child is not a pet."  That ended the conversation real quick. 

Well, over the past number of weeks of stressful task completing, I've had a few people mention with a laugh, "you two are in extreme nesting mode." I hadn't given it too much thought, prior to this.  To be honest, Laura and I were thinking more along the lines of "we need to get things done prior to mid June!"  I completed my graduate management admissions test (GMAT, like a GRE but for an MBA program).  Laura has been chugging away at her two MPA classes.  Once she is done, she'll have just 1 class left prior to graduating.  We've done our fair share of additional rosaries and we're doing all of what we can to read up, get smart and get prepped for a baby with a CHD and 22q deletion.

The biggest task that we've undergone is in selling our condo and moving out.  Back in January, when Laura and I thought we were an invincible power couple, I solicited advice from a family friend.  He wisely suggested that we should look into moving and make a sound decision, if we can afford it.  Sounded like a smart notion to me and Laura.  Before you knew it, we were out looking for town homes in Burke and replacing door knobs (the kind that look really nice, but are NOT kid preventative. Read: Dylan played in the toilet water a good amount).

I (and helpful family members) repainted our place.  I think I've become quite handy with all of the fixes we've done.  We put our place on the market and had 2 realtors come by on the first day.  Two and a half days in, we got an offer for more than we asked and they didn't ask for any closing costs.  We were thrilled and could barely believe it.  To make things even more unbelievable, the person buying our house has the same first and last name as one of us.  For the sake of his/her privacy, I won't spell it out, but lets just say, that we have a running joke about Laura being a time traveler in the future.

With having an offer on our home, we were able to place an offer on a townhouse in Burke, right close to the VRE (train into DC) for Laura.  We love the area.  Paths between the woods, tall trees, hilly, great sense of community, despite being in northern Virginia.  We were on our way through the home inspection when we caught sight of the events to come.

Our home inspector noted that there was visible sign of termite damage.  Two weeks ago, I knew next to nothing about termites.  The sellers were willing to do the right thing and send out a specialist to investigate further.  On Good Friday morning, I was on site with the general contractor, realtors from both parties and a structural engineer.

The termite damage was 3 layers beyond what was visible to our inspector.  I took pictures, drew diagrams and asked as many questions as I could.  Since Laura was in a doctors appointment, I needed to explain the situation to her afterwards.    The general contractor said phrases like, "don't any one ask me about the monetary impact at this point." and "this is a huge deal" and "I can't give anyone an idea about the duration of the job until I have more details."  A brief summary of the situation is that there was 4 structural pieces of wood totally compromised.  This caused the floor above to sink a few inches.  This would require replacing part of the floor above, 8 feet up on the walls and custom ordering a new front door.  Just to make this whole situation even more wild, there was a live snake in the storage area.  For all you Christian readers, I was definitely feeling like this was a sign.

Laura and I quickly came to the decision that we needed to find an out.  I talked to our realtor, who totally agreed and understood.  We used an out and decided to go to plan B.

Plan B is to live as homeless people!

Just kidding, plan B was to look at a property in Bristow, near the last train station of the VRE and near my parents.  On Holy Saturday, we went out to a home that we had our eyes on for the past three weeks.  It's cheaper, larger, and a single family home.  On our way over, we got alerts from realtor.com that the house dropped in price.  Perfect timing!  We saw the home and loved it.  We did our due diligence and viewed the other houses on the market, this only instilled our stance on the first home.  Our realtor took the lead and put together a game plan for our offer.  He did research on the recent comparable sales and suggested that we offer 13k less than the current asking price and 7.5k in closing.  We couldn't believe it - we were ready to offer asking price!  We deferred to his judgement and, about an hour later, we got a counter offer for the price we asked and 2k in closing costs.  That's a deal!

We're now relaxing on Easter Sunday afternoon, for what seems like the first time in forever.  (Frozen fans, I did that on purpose... yes, Dylan is watching Frozen right now - how else am I going to write this blog post!).  We went to an early mass, Dylan napped, and we spent a few hours playing, dancing, reading and relaxing.  Laura isn't working on school work. I'm not studying.  We're not stressing about our house situation. We aren't entertaining guests and we're not tired.  We're off to visit grandparents and then have lunch in Bristow with my family.

Thanks for reading, Happy Easter! 

PS: We're so thankful to Sean Blanchette, our realtor, for getting us through this.

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)

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.

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.

Amen.

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. http://www.12-step-review.org/books/index.html

We’ve also prayed a novena to St. Francis (via the http://www.praymorenovenas.com/ 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.

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!!

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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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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