Denial - 12 More Days

denial 

noun

1. an assertion that something said, believed, alleged, etc., is false

2. refusal to believe a doctrine, theory, or the like.

3. disbelief in the existence or reality of a thing.

4. the refusal to satisfy a claim, request, desire, etc., or the refusal of a person making it.
 

Denial is exactly what it was when we first heard the news.  Even the days that followed, I didn't call the doctor's office to make the follow up appointments right away.  I thought that things would be fine and they would do the tests and find out that they were wrong.  I have two beautiful, healthy girls at home – they barely even catch colds.  There is no way that my son is going to have a major heart condition.

First Steps

Our first appointments were a cardiogram for him, a meeting with the cardiologist to explain the results, a meeting with the genetic counselor, and a possible amniocentesis.  The cardiogram took two hours – they looked at his heart, very artery, vein, blood flow, and everything they could.  At one point I was told that he wasn’t sitting in a good position so me and my husband went and ran stairs trying to get him to move. 

 

From there we went for a meeting with Dr. Cutler, our new cardiologist.  She was so reassuring, she explained what they saw and confirmed that our son did in fact have a heart condition.  Denial became even stronger for me, however the news hit my husband in a whole different way.  Thoughts raced through my head – what does this mean, how do we deal with this, are we looking at years of issues, how do I explain this to the girls?  As I sat there crying Dr. Cutler took her time and explained everything – the good, bad, and the ugly.  She said that it was too early to jump to say what exactly my son had, seeing he wasn’t sitting in a good position and we would need to come back to another cardiogram to get better pictures. 

 

Our third appointment was the genetic counselor.  Now let tell you at this point I hadn’t heard anything from my original blood work.  And my doctor had told me no news was good news when it came to the blood work for genetic anomalies.  Not only that but looking at our family history there is nothing.  Between my husband and I’s complete medical history we could not find one genetic anomaly so how could my son just have one?  Another question, it seemed to be all questions and no answers.  The counselor explained that children with this type of condition normally have one of two genetic concerns, one is Down Syndrome - however they were pretty certain that son didn't have this seeing my blood work previously told them that he had a 1 out of 40,000 chance to have Down Syndrome.  There was another concern a Q22 deficiency - with this the 22nd chromosome should have a tail to it but with this deficiency the tail is missing.  With that gone the child could have a range of problems from a clef lip to serious learning disabilities but no one could tell you what the child would have if they have a Q22 deficiency.  The counselor strongly suggested that I do the amniocentesis to rule it out completely.  When asked we were given a 2% chance of a miscarriage with the amnio.  I'll never forget looking at my husband and him looking at me and just knowing that the chance wasn't worth it.  At this point, whatever caused this issue didn't matter.  It wasn't worth my child, it wasn't worth the pain, it wasn't worth the risk.  If our baby had more than a heart condition we would face it.  Just like we were going to face the heart defect.  For some reason, at that moment in the all the confusion and heart break that I was going through I was oddly calm and collected.  It was the first time that in the ciaos that I saw a light of hope.   

Peace, Love, and Cupcakes,
Jillian Whalin

 

The Start - 14 More Days

 

 

 

The Start To Our Story

First Off:



A thank you to everyone that is reading this and that is sharing in our journey with Baby Whalin.  I have been very blessed in my life to have family and friends that love and support me and my family.  Without all of you I would not have the strength, the drive, or the need to carry on from day to day.  So THANK YOU!

 

Also this week a YouTube video was forwarded on to me from my father-in-law.  It was so very touching and true to life for me that I wanted to share it with you.  Please take a moment to visit the link. 

http://m.youtube.com/watch?v=vn-dpk2qkP8

 The Beginning:

In the beginning being pregnant was a complete shock to me.  It was my husband that told me we were expecting (as funny as it sounds, this time he was right!).  I had always hoped for baby number three to come along however we were happy and settled with my two beautiful daughters.  So when the test came back positive it was a mix of emotions.

I knew that Baby Whalin was not going to be an easy nine months.  When I scheduled my first doctor's appoint and met my OB it was all confirmed that we would be graced with another beautiful child.  However, the doctor wanted me to get an ultrasound ASAP as baby was measuring bigger than the 10 weeks that I thought I was at.  So the very next day, back to the doctors to find out that I was not 10 weeks but 12. Wth that came blood work every quickly to check for any genetic issues.  The weeks to follow became even more interesting when I was diagnosed with Bell's Palsy.  What's Bell's Palsy you ask?

"Bell's palsy is a disorder of the nerve that controls movement of the muscles in the face. This nerve is called the facial or 7th cranial nerve. Damage to this nerve causes weakness or paralysis of these muscles. Paralysis means that you cannot use the muscles at all."

Basically, I couldn't do anything with my left side of my face.   I got to drink out of straw, tape my eye shut at night, not taste anything sweet, and talk like I just had a root canal for about a week.  To this day my smile is a little off to the side and my eye doesn't react like my right one.  But its not noticeable to anyone but me. 

So with the issues that I was experiencing I knew that this baby was different and not like their sisters.  I just thought it was a boy – hmm, mother’s always right!  But little did I know how unlike their sisters it would really be!  And yes I said issues, plural.   The nausea throughout the day was crazy.  It didn’t matter what I ate or what I took it didn’t help I just had to deal with it.  On top of that the tiredness was and is just damaging to my everyday life.  I don’t care how little I do in a day I’m exhausted. True pregnancy pains!

20 Weeks:

Yay!  It was time for another ultrasound and with this one we would find out the sex of our baby.  It is such an exciting time for an expecting mother and father.  I never understood those that don't want to find out what they are having.  I can't wait 9 months for a surprise like that!  Not only that but those that know me know that I have to have know EVERYTHING! 

My husband was able to join me for this appointment and the girls where with their grandparents at their schools Welcome Back to School ice cream social. So they start the ultrasound and ask us if we are finding out what we are having.  And the answer is "Of Course!" - I will never forget the moment that she (the ultrasound tech) said "It's a Boy and he isn't shy!".  My reply was tears of joy.  Our prayers had been answered.  My husband's first reply "While I might my hockey player after all".  From there I remember the ultrasound taking a lot longer than normal.  And I also remember that she spent a lot of time playing the heart beat and focusing on his heart. 

Out of no where a doctor comes into the room.  For the life of me I couldn't tell you what his name was or is.  But he apologized for coming in the room like this but "we have a problem" came out of his mouth and my heart dropped.  He explained that he was watching the ultrasound remotely and noticed that there is a problem with the baby's heart.  He gave me a business card with names and numbers.  He explained that in what they are seeing they highly suggest that I speak with a genetic counselor seeing these type of issues are sometimes accompanied with genetic issues like down syndrome.  Again, my responds is tears.  This time not tears of joy but tears of dread, fear, and sadness.

We leave the appointment in a whirlwind of thoughts, but we have to go get the girls at the ice cream social.  Time to suck it up and put on a brave face. The options that we left with - we could terminate the pregnancy (but had to decide that very quickly) or we could continue on with scheduling appointments for a lot more tests, doctors appointments, and talking with a genetic counselor.  Seeing I have only 14 more days left - what option do you think I took???

What's Next:  

Well I guess you will have to stay tuned to find out the next steps, challenges, and discoveries that we have gone through.  

Good Night, until next time and . . . 

Peace, Love, and Cupcakes,
Jillian Whalin  



Hypoplastic Left Heart Syndrome - 16 more days

 

Baby Whalin #3's Condition

So its called abnormal Hypoplastic Left Heart Syndrome and to be honest with you I had never heard of it in my life.  Now that it has been diagnosed to my son I hear about someone who knows someone with it.  But to give you an idea - it's quite rare.  It affects one out of every 5,000 babies born, in the United States, about 1,000 babies are born with HLHS each year.  See I told you we were special ;-)!

 

How does it happen?

Well, that's a great questions one that I have been asking myself over and over again.  However according to health care providers - THERE IS NO RHYME OR REASON.  They do know that out of the children that are affected about 2/3rds are boys.  And that most babies that are born with it are otherwise healthy.   So, for some unknown reason, the left side of the heart does not develop properly while the baby is in the mother's womb. 

 

What's the difference between a healthy heart and one with HLHS?

Well, for a minute let me take you back to science class.  The heart (a healthy one) has four chambers - the two on top are called the atria and the two lower chambers are ventricles.  A wall divides them causing the right and left side.  The ventricles are the pumping muscles that help bring the blood back out to where it needs to go, either the lungs or throughout your body.  To keep this simple and not to confuse anyone - the right side of your heart pumps to your lungs to get oxygen and the left side pumps throughout your body.  A child that has HLHS has a small left side and is unable to enough blood to meet the body's needs.

 

Now let me be clear - there are different types of HLHS.  My son's condition is being called abnormal HLHS because not all the parts that are affected in normal HLHS are being affected in his heart. In short the doctors and surgeons have told me that the way to think of it is that he is going to be born with half of a heart.  His left ventricle never really formed due to having a hole in the wall between the two.  Over time the hole that he had has closed and diagnoses have changed for us but in the end nothing has changed with his left ventricle being less than half the size of his right.  

 

How is this corrected?

Well, corrected it is not - worked around is more like it.  Baby Whalin and other children with HLHS are looking forward to at least three surgeries in their lifetime.  The Norwood is the first surgery that baby Whalin will be having - this will be taking place a few days after birth, normal completed between 3-7days.  For us - I'm being induced on October 28th and the surgeon has schedule surgery on October 31, 2014.   Basically, what will be done is that the blood will be redirected to bypass the left side of the heart.  So the right side of the heart becomes the main pumping chamber for both blood to the lungs and to the body.  Again, I don't want to get to technical with all this because I am not the expert in the matter, but that gives you an idea!  

 

The other two surgeries: The Hemi-Fontan (completed around 3-6 months of life) and the Fontan (completed around 2 years of life) are to strengthen the original surgery.  These are much less invasive to the child.  The second one (Hemi-Fontan) is to reduce the amount of work the right ventricle is doing, after this stage the right heart will only have to pump blood to the body because the work of pumping blood to the lungs is taken away.  The third stage (Fontan) is completed so that the rest of the blue blood (or blood that needs oxygen) coming back from the body goes straight to the lungs. 

 

The other option that is out there for children with this condition is a complete heart transplant.  This is not an option at this point for my son.  The doctors are very confident that the other steps will provide him with a strong viable heart.  However, if we need to travel that road later it is an option that would be considered - but you got to remember that there are more children that needs hearts then hearts are available.

 

What's the Outcome?

Who knows!  I wish I could answer that one question too!  I will tell you that babies born before 1984 with HLHS passed away with in weeks of life.  So as far as what the future holds we don't know.

 

  As one book that I have one it says "In a very real sense, these children are pioneers!"

 

But as for recovery times, well that also depends on baby.  We are being told that for the first surgery normal recovery can take anywhere from 2-4 weeks.  For the other two, like one week.  These are times that baby Whalin will be in the hospital, full recovery will be much more than that.  And the other concern is baby's weight due to the fact that he is taken away right away he is not given the chance to learn to eat - so most children go home on a feeding tube. 

 

So there it is in a nutshell.  The what of it all!  If you have questions about it please don't hesitate to ask.  I want everyone to be as knowledgeable as possible - with knowledge comes power and with power more can be accomplished.  So tomorrow I hope to blog again, I will provide you with our story of finding out about the condition and how it has affected us.  Until then . . .

 

Peace, Love, and Cupcakes!

Jillian Whalin 

Welcome - Counting Down - 17 Days

 

 

Welcome To Hope for Harold - Our Journey

Why a Blog?

So our journey has started counting down until Baby Whalin #3 is going to join us. But its defiantly not the end of the story!

 

Only 17 MORE DAYS!

And we know that with this baby there is going to be good days and bad.  I wanted to share our story to help anyone that may go through the same thing.  I recently received a message from a friend telling me that my story and my positivity through it all is very uplifting and that started me thinking.

 

This is not a blog looking for sympathy, I don't want that for me, my family, or my unborn son.  I want love, support and understanding.  I want people to read this and be knowledgeable about what is happening with us.

 

Why Hope for "Harold"?

Let me clarify, my unborn son's name is NOT Harold however there is a story behind it.  I have two daughters Hannah and Hayley and each time I was pregnant we hoped for a boy.  When naming my children it was not my intention for them both to be named with an "Ha-" name.  However, since my second was another girl my Mother-in-law started hoping for a "Harold" to join our family.  When we found out that we were having baby number three she was so excited and felt that her campaign for a boy or for "Harold" worked. 

 

The campaign "Hope for Harold" took on a new meaning when we learned that A.) we are having a boy and B.) he has a heart condition.  At 21 weeks I went to find out during an ultrasound the growth of the baby and the sex.  And came out with the knowledge that my unborn son had a heart condition.  We would find out later how special our son's condition really is.

 

Our family's "Hope For Harold" is now to join us and be big and strong.  To learn to love life like his father and I.  We want only the best through his journey and we want him to know that like each of our children he is loved and supported.  He may never be able to skate up and down a hockey rink like his father did or run 5Ks like his grandma and grandpa but we know that he will make his own footprint in this world and being a Whalin - I'm sure that it's something great!

 

What's to Come?

I hope that I can blog everyday, however let's be honest that may not happen!  But I will defiantly try my best to keep you in the loop of what is happening.  My next blog will be about my son's condition, what it is, what we are facing, and how it will impact him so I hope that you all continue to read, learn, and understand right along with me.  As this is a journey that I am taking as well and am truly learning as I go!

 

Peace, Love, and Cupcakes,

Jillian Whalin