At St. Mary's (at last)

It seems like weeks ago we were going to have Jake transferred to St Mary's Childrens Hospital. Oh wait, it was weeks ago. Not even four months old and being wait-listed already. Anyhow, he is finally where he needs to be for the long road ahead. The staff, like CHONY, is first class. They give you the sense that they really care. Only time will tell of how far he will recover. I find it funny looking back and remembering when he only had that heart thing to contend with. Like it was something minor. Life's rollercoaster has really given little Jake a ride.

Missing Persons

This holiday weekend we enjoyed a barbecue at long time friends house. Our four-year-old was having a sleepover at grandmas while Christina and I brought Corinne with us. While we were there, we bumped into another long time friend who had also recently given birth in February. She has a beautiful baby girl. As we enjoyed the day and traded war stories, we introduced our new children to those who passed by.  When we told people that Corinne was a twin, we noticed that everyone looked at the single stroller and put puzzled looks on their faces. "Where is the other one?" It was not hard telling people what had happened to Jacob. It has become part of our daily routine. It has, however, made me miss Jacob more than ever. He is being moved (finally) to St Mary's tomorrow. He will be closer and a lot easier to visit.  We can even apply for day-passes so we can take him out every now and then. This whole ordeal has made me appreciate things in ways I never thought of before. I have learned to appreciate the short amount of time we have on Earth. I want to spend every second of that time with my kids. I know it is impossible just the same. Don't throw away that time you have. Spend it wisely. Younever know how much longer you have. Of the last three and one half months that Jacob has been alive, he has only spent one month at home with us. I will cherish that time and I am looking forward to August when he may be back home again. My son, I am missing you dearly.

Can you be pissed at God?

This event, starting in November of 2010, has shaken my faith to the core.  It has always been said that we mere mortals cannot see the divine wisdom of the Creator.  Why are there earthquakes and tsunamis that kill thousands or tornadoes that devastate entire communities?  Why make an innocent infant with half a heart then kill half his brain?  What divine wisdom is that?  Why make people suffer?
When I first learned about Jacob's condition, I was pissed; pissed at God.  Why did you do this to an infant?  What has he ever done?  I remained angry for quite some time.  After Christina and I came to terms with the prospect of raising a child that has a serious cardiac issue, I came to terms with my feelings towards God.  His life was a gift to us.  If he lived three days, three months or three years - it is all a gift to us.  I had to focus on what we were given; the hand we were dealt.  There was no point pondering the "what ifs".  There was only the "what is" so deal with it and move on.  We couldn't just dwell on the negatives - we had to find the positives and exploit them.
What kind of positives are there in something like this?  Here is what I've termed as positive and in no certain order:
I have met world class doctors, nurses and other staff that treat patients and their parents with genuine care.
I have seen the depths of despair and the ecstasy of parenthood.
I have seen the true value of good friends and the good nature of total strangers.
I have seen a strength in myself and my wife that I never thought possible (honestly, I thought I'd be a puddle of goo by now.)
Is this the true nature of faith?  Do horrible things have to happen to bring out the good in people?  Maybe, maybe not.  I think that the good is always there, but it needs a catalyst to release it.
Maybe the old cliche that God works in mysterious ways it true.  If all of this had not happened, would I appreciate my friends and family as much?  Is there a Butterfly Effect that effects all of the people in Jacobs life as well as those in mine?
I have seen, as you may have, the "invisible family", the one with the kid in the wheelchair or the one with the deaf child.  I have always turned away from them because I have felt sorry for them and that it was impolite to stare.  I know now that I may very well become that invisible family.  I do not feel ashamed or embarrassed.  I welcome stares and questions.  Jacob is my son and I will be proud of him whatever becomes of him.  He will never be 100%, whatever that means, but he is part of me.
How can I stay pissed at God?  The saying is true that life is a journey and not a destination.  God has made me take roads I never wanted to take.  Now that I am on this road, I have to make the best of it.  Sometimes I actually feel that I am somewhat lucky for being on the road less traveled.  I will have experiences that others will never have.  Life is all about the experiences.  I guess I'm on this road for a reason.  The trouble is I have no idea where this road will take me.  Care to walk with me?

Introduction to St. Mary's

Tonight we toured what will most likely be Jacob's home for the next month and a half.  It is a small specialized facility with a caring staff. Located in a very nice neighborhood in Bayside Queens, it can be considered a pediatric nursing home. Beautifully decorated and nicely taken care of, it seems rather cozy and friendly. Jacob will be in the best of therapeutic care here. It is important for him to get therapy quickly.

Homecoming

On March 7, 2011 Jacob came home.  We had a small family get-together to celebrate the occasion. He came home to a family that couldn't wait to see him.  John Paul was so very proud to be the Big Brother.  We started to get into a daily groove.  Corinne was starting to do very well with eating while Jacob still had trouble.  Corinne would suck down 4 ounces in a hurry while Jake would only take 1 ounce by mouth and the rest of his feeding via tube.  A few weeks passed by and Jake's weight was increasing.  We were giving him a high-calorie formula to boost his weight without increasing his fluid intake.  Excess fluid would wind up in the lungs and he was on diuretics to help prevent that from happening.  Soon thereafter, we had to stop bottle feeding him, he would vomit the formula back up soon after eating.  The bottle feeding was too much too fast for the little guy.  We wound up feeding him almost exclusively via tube. His heart was working harder and harder to pump his blood and would need the second atrial septostomy soon.  We took him in for his procedure on April 21st and the rest you already read about.  Now that the history is done, my posts will be day by day in realtime.

A breif history con't.

...to continue where I left off before Jacob's stroke...
Jacob and Corinne were born at 4:00 AM on February 8, 2011. Jacob was whisked away quickly after a brief introduction. Corinne was kept in the O.R. with her mom and dad. I didn't even have a chance to take a photo of him. Christina was taken to recovery and I was put on ice. I wanted to see Jake but was told that he was being taken care of and was started on the medicines he needed to keep his ductus ateriosis from closing. If the ductus closed, he would die.
A few days later we got to take Corinne home. Jake stayed at NY Presbyterian. It felt as if I left a piece of myself behind. About a week later doctors Julie Vincent and Emile Basha performed a hybrid version of the Norwood procedure to begin treating the hypoplastic heart. He did well but looked like hell after the surgery.
He was recovering nicely when it was noticed that the hole between the atria was too narrow. In a normal heart a hole is a bad thing but Jacob needed it to stay alive. He was taken to the catheter lab for a balloon septostomy. This opened the hole called the atrial septal defect (ASD) so blood could flow freely to the lungs and body. After this procedure his next hurdle was feeding. Hypoplastic babies are notorious poor feeders. They would not discharge him until they were satisfied that he could take nourishment without vomiting. This kept him in the NICU for an extra week. At $10350 per day, that's an expensive hotel room. The nurses told us that he would probably go home on a feeding tube. We were trained how to insert the tube. It takes getting used to but you get over it.
Jacob came home after 27 days in the NICU.

Coming out of my funk.

After visiting Jacob last night and seeing that he is comfortable has begun to bring me out of my funk. I think I was actually becoming clinically depressed. Having Jacob fall asleep in my arms has reaffirmed my feelings of love and joy for him. I want no more than to hold him in my arms. The plan now is that he will be discharged on Friday and be transferred to St. Mary's Children's Hospital in Queens for intense physical and occupational therapy. I now feel less dread for his long and hard road to recovery. There are many cases such as shaken-baby-syndrome that have had positive outcomes with more serious brain damage. He will still have disabilities but we shall overcome them as a family. Jacob has a strong support staff that includes family, friends and his father's lodge Brothers. He will survive and he will thrive.

Good news, bad news

We received some good news and some bad news today. Jacob's doctors think he should make an acceptable recovery barring any further setbacks. The bad news, however, is that he has a protein in his blood called troponin. It is a protein secreted by the heart when injured. He should have none. The fear is that the heart is not receiving the blood it needs. Could this be related to the stroke? I am hoping he does not have a heart attack on top of the stroke.

Preliminary stroke results

Jacob has had an extensive stroke affecting most of the right hemisphere.  It is unknown how much his left brain can compensate.  His age is on his side since most of the brain has not been hard wired yet.  This stroke, while devastating, would be much worse in an adult.  Still at the hospital right now.

May 2, 2011 - My Darkest Day

This blog was supposed to post in chronological order from recent past to present.  This post will change all of my best laid plans.  Prior to today, my darkest day was when I found out that Jacob was going to be born with half a heart.  That was 11/3/10.  I am going to fast-forward (I'll go back, I swear) past the birth of the twins, Jacob's Hybrid Norwood procedure, first atrial septostomy and Homecoming up to just prior to his second atrial septostomy.

Jake had been home since March 7.  He started developing problems holding food down and it was determined that the main cause was that the Atrial Septal Defect (ASD) in his heart was closing up and he wasn't getting the amount of blood that he needed to flow throughout his little body.  It was decided that he would need another catheter procedure called an atrial septostomy to open it back up.  The idea was to use a balloon with tiny blades on it to cut open the atrial septum and allow blood to flow freely between the two atria.  The blades weren't enough and the doctor decided to put in a stent to keep the ASD open.  This meant that he would need blood thinners to prevent clotting around the stent.  The procedure went well and he would be home in a day or two.  That was Thursday April, 21st.  On Saturday morning, the day we expected to take him home, we received panicked emergency phone calls from the hospital informing us that Jacob was in distress and we needed to get there ASAP.  Forty-five minutes, 80 MPH and a driving rainstorm later, we were tossing the keys to the valet and running to the elevators.  Jacob had developed a mystery malady the doctors attributed to a post-op infection.  They still really don't know what caused him to get so sick so quickly.  A few days later (Thursday April 28th) he was regaining consciousness and opening his eyes.  He had an odd stare to the right and would not look left (see first photo above), probably from all the sedation which was slow to wear off.  The following Sunday we came in for another visit since he had been extubated and was breathing with the aid of a CPAP (Constant Positive Air Pressure).  He still had that odd stare, even when being held by his mother (next photo).  I started to worry and raised an alarm.  A neurologist was called in for a quick examination and she called for an ultrasound of Jacob's brain.  They said that the sedatives given to him were strong and would take some time to entirely leave his body and this was probably the cause.  Something was not right and it started eating at me.  They scheduled a CT scan for the following morning.  That morning was today, my darkest day.  Jacob had suffered from a large stroke in his right hemisphere.  At this point, 9:30PM, I am still in shock.  I don't know where to turn.  I don't know what to do.  Tomorrow we are meeting with the neurologist and staff to see what can be done and the extent of the damage.  I am worried sick.

Coming to terms

I hate to be all over the place with this blog but I’m trying to play catch-up to May 2, 2011.  I still have a good three months or so of history to go through before I get there.

That being said – It came time for my wife and I to come to terms with Jacob’s condition and all of the possible outcomes.  This was the first rough patch for me.  I didn’t know how to feel.  We had the joy of knowing we were having twins, a boy and a girl, offset by the disastrous news of the hypoplastic left heart.  All of my emotions were mixed about and I did not know how I was supposed to feel.  How is one “supposed” to feel when something like this happens?  I still don’t know.  I don’t think the experts know either.  I was torn by a mixture of pity and guilt.  Was it something I did?  Was it preventable?  How would the other children treat him because he would be weaker and smaller than normal?  How am I going to cope with raising a special needs child?  Am I special enough to raise such a child?  Would he be born with brain damage from the lack of oxygen?  Will my marriage survive?

To further complicate my emotional state, I found myself thinking dark thoughts.  What if he died shortly after birth?  Would it be so bad?  Wouldn’t it be better to lose him soon after birth than to lose him after I got to know him and see him develop?  Do I try to get to know him or do I keep my distance after he is born?  Am I just being selfish and thinking about myself?  These questions may seem easy to answer but they are not.  Not when the outcome affects you this personally.

I watch my older son and wonder:

He is almost 5 years old.  This is the age when Jacob is due to have his third major surgery – the Fontan procedure.  It is an extensive open-heart procedure to help palliate the hypoplastic left heart.  How will I fare seeing my son at this age in such pain after the surgery or even deal with his death if something goes horribly wrong?  Will I be strong enough to deal with the pain of losing a child?  Is anyone really strong enough?

I don’t know if it was the constant exposure to the problems of HLHS or divine intervention but Christina and I have coped rather well with all of the possibilities we have foreseen and some we hadn’t.  I guess we all find a way to cope.

You are not alone.

The hospital staff had given us contact information of families and survivors that are living through what we considered our little corner of hell.  I never realized how important it was to talk to other people that can empathize with you.  One outstanding mother was Joann.  Her son had a very difficult time with complications.  She is strong and resilient and always remained positive.  I am trying to emulate her but I can be pessimistic by nature.

The complications disturbed me.  Wasn’t it bad enough that my boy was going to undergo drastic surgeries?  Now there were the very real possibilities of complications.  They are the sort of thing you know are possible but you don’t want to think of.  They happen to someone else, right?  Something akin to a plane crash or earthquake disaster (or congenital heart defect). 

A Whirlwind of Doctors Appointments

After we found out that my unborn son had a hypoplastic heart, it was time to start seeing the plethora of doctors  who would help my son live after birth.  My wife and I took many trips to many doctors in the following weeks.  We almost got to know how to get around the labyrinth that is Colombia Medical Center.  I was quite impressed by the caliber of the staff at Colombia.  I knew that my son's life was in the best hands possible.  His cardiologist literally wrote the book on HLHS and his planned surgeon was on ABC for doing this type of surgery on a child in Boston.  I felt better about hypoplastic left heart syndrome, but was never comfortable.  At least once a week we were driving into the city from Long Island for an as many appointments as could possibly fit into one day's schedule.  Angel at Colombia was our "handler" and he did a great job with our schedule - a great asset to the hospital.
We were also given the contacts of several survivors with HLHS.  We were not alone.

In the beginning...

My son, Jacob, was first diagnosed with Hypoplastic Left Heart Syndrome (HLHS) on November 3, 2010 in utero.  It was a bright and beautiful autumn day that I will never forget.  My wife went for an ultrasound and I went golfing with some buddies from work.  On my way home, I got a call from my wife - one of the twins (the boy) had a problem.  She would tell me more when I got home.  When I got home she told me that she would not be giving birth at Winthrop as planned but at Colombia Presbyterian in Manhattan.  When she said that, my body went cold.  It was the first time in my life I had ever heard of HLHS.  I knew about other congenital heart defects but not this one.  A birth defect was the one thing I dreaded the most.
The rest of the day passed away in a fog as I was self-educated on the Internet about the condition.  I did not like what I found. His chances of surviving the minimum of three open-heart procedures was around 75%. All I could do was thank God we lived so close to one of the top medical centers in the country.
I knew that life, as I knew it, just took a drastic turn in a new direction; a direction I never wanted to go in.  In an instant we became that "Special" family.  The one you always heard about but were grateful that it was not you.

Getting started

This is the first blog I have ever made - please bear with me.

I started this blog to accomplish two main objectives:
Venting my feelings and frustrations about my son's condition.
Trying to reach out and help other parents of children with Hypoplastic Left Heart Syndrome.