Day Two - October 30th - A Day of Visiting

Day Two - A Day of Visiting

October 30th 2014

 

 Yay! Harlan is here, the doctor's have told us that there is nothing new to confirm with his heart condition.  And he is otherwise a healthy baby.  We are told that he will go through with the Norwood surgery on Friday at 7am.

Mom got downstairs first, at about 7am.  The cardiologist was completing yet another cardiogram.  And the other doctors were doing rounds.  They introduced themselves to Mom and explained that Harlan is doing wonderful (besides for needing surgery).  They are very pleased with how Harlan was overnight and we are able to hold him for today.  So mom took full advantage of that and held him for an hour before more company came by.

Grandma and Grandpa from both mom and dad's side came for a visit.  So did Harlan's aunt and cousin.  He even got to meet his sisters for the first time.  The entire time Harlan slept through the whole thing but we were very excited to see, hold, and be able to kiss him.  

Harlan and His Grandma

After everyone left for the night, mom went back to her room for dinner, a shower, to pump and then she shortly returned for more cuddle time before surgery.  By 10pm mom was falling asleep with Harlan in her arms - so back to being apart for the night but Mom would return by 6am to get even more sunggles in.  It was an amazing day with family!  

Peace, Love, and Cupcakes-

Jillian  Whalin

Happy Birthday - October 29,2014

               Happy Birthday!

Let me introduce:

Welcome to the world Harlan Joseph Whalin! You came into this world on October 29th, 2014 at 8:42pm.  You are 7 pounds 10 ounces.  And daddy already says you have Mommy's lungs! 

The story of your arrival: 

Wow, you were not easy for any of us!  

Oct.28th:

It was a day of packing and getting for you.  It was a lot of waiting! I called the hospital at 1pm because I was told that someone would call me about my inducement - however no one had.  I was told not to worry about it they don't call until 4pm-6pm.  At 4:55pm I finally get a call that told me not to come in to the hospital until 8pm.   So daddy and I took our time and met Grandma and Grandpa at their hotel.  At this point I was scared and not yet ready to met you.  It all seemed very unreal that I was headed to the hospital to have a baby! 

So we get to the hospital and check in.  Our nurse did a normal check in - blood pressure, temp, put you on a monitor and hooked me to an IV.  Shortly there after the doctor came in. And we learned that I was already dilated to a three.  After discussing my labor with your sisters the doctor decided we would start the potocin (the drug that starts labor) until 1am!    So daddy and I played words with friends until all the fun began! 

Oct. 29th:

From 1am to 7am - every hour the nurse would come in and take a blood pressure and then up the amount of potocin.  However, I didn't feel anything for that entire time.  Then out of no where my contractions started and were furious and every two minutes.  When the doctor came in to check I was only dilated to a four. 

I labored for hours!  Grandma and Grandpa brought your sisters who were hoping to meet you right away!  Your Auntie and cousins were there too!  All we could do was wait for you to be ready to enter the world!  But you sure wanted to take your time!!! 

Finally around 1pm and after another check (I was only dilated to six)- I decided to get my epidural to help with the pain.  The end result of an epidural is amazing but getting one I don't wish on my worse enemy.  Your Daddy is amazing he stayed and helped me through the entire process.  And once the doctors started the medicine I felt better.  However, the medicine went right to my legs and I couldn't move them at all.  I kept being told that would go away and so would the pins and needles I felt in my legs- let tell you how wrong that was!!!

After another check and not really having to much more of a progression my nurse decided to get me up on all fours.  From there she massaged my back - and amazingly my water broke.  From there things progressed.  

My nurse went to have dinner and out of no where my pain got unbearable!!  Sparing you all the nasty details they took Daddy and I to the operating room where you would be born.  There was a room FULL of doctors!!! But there was only two voices I could hear - your Daddy and my Nurse.  

After four sets of pushing you were here!!! They put you right on my stomach and cleaned you off.  Daddy cut the cord and they took you away - they asked you Daddy if he wanted to go with baby or Mommy and of course I sent him with you.  

I have to say that it wasn't easy, it hurt like hell, and yes, it was worse than your sisters.  But to finally see you and hold you even for minute - it was worth it.  Also all the love surrounding us (you especially) will get us through all the bumps in the road. 

Peace, Love, and Cupcakes, 

Jillian Whalin 

Today is The Day!!!

 

Today is The Day!!!

 

Wow!  What a wait!  It's 4:45pm on October 28th, 2014 and I just got a call from U of  M asking for me to not come to check in for inducement until 8pm.  I have a feeling that tonight is going to be a long night!!

 

Today has been filled with packing bags, cleaning house, and making calendars for the next month to have a schedule for my girls.  As there is really no plan to any of this except that I may not be home for a while so I can watch over Baby Whalin.  People keep asking me if I'm ready - how do you get ready for something like this?  If I knew then I would have much more of a plan!!

 

I would like to take this opportunity to THANK everyone that has extended prayers and thoughts our way.  Today is the beginning of what I like to call my "New Normal" as things, I'm sure, will never be as they are today.  And I'm not even speaking in the way of Baby Whalin's heart condition but just having three children is going to change everything.  I truly appreciate everyone that has shown support to our situation and really I'm so thankful to have such wonderful friends and family.

 

I would also like to say congratulations to the Mercado Family who just welcomed their third beautiful daughter last night.  I was told that labor was not easy for this one - which makes me even more on edge.  Again, as stated before there is no plans for this one for me but I was thinking of going natural and not having an epidural.  But with the recent stories I have been hearing - having that as an option doesn't sound too bad!!   

 

I look forward to sharing pictures and more of our story with you.  But for now, I got to go.  Please continue to keep us in your thoughts and prayers.

 

Peace, Love, and Cupcakes

Jillian Whalin 

Fast Forwarding to Today - 3 Days Left

 

 

 

 

Fast Forwarding to Today

 

Sorry for the Delay:

I know that some of you have been waiting so patiently for another blog - I apologize that it has taken me this long to be able to sit and write.  But now at 6:30am on a Saturday morning, a steaming cup of coffee next to me, and complete silence (which won't last long, no doubt) I have the time, the space, and the want to continue on with our story.

 

Where We Left Off:

So looking back, I left you with us, my husband and I, sitting in a genetics conference room deciding to find out if this condition was more then just the heart.  Giving you the short version of the end of that appointment, come to find to out that medicine has come so far at an amnio is not necessary to find out if your baby has a genetic disorder.  Now again, I can not talk to all disorders but for us, it was a simple blood draw and results came back in two weeks that everything was normal.

 

So where did that leave us?  Well, with more doctor's appointments.  I went for bi-weekly ultrasounds and cardiograms, on top of normal OB appointments.  I'm pretty sure that I have heard my unborn child's heart beat more than I have heard my own or my other children's.  Not that its a bad thing.  But every time I hear it a doctor will tell me how strong it is - and it never ranges different then what a baby in the womb should be (130-160 beats per minute).  So with that always being a constant throughout my pregnancy sometimes its been hard to accept his condition.

 

Where Do We Go From Here:

Well of course a lot of personal phone calls were made to family and friends to explain the situation.  Everyone handles news like this differently and still with a confirmed diagnose behind us the way that some people handle it is not my cup of tea.  But I have learned not to judge, you never know what that persons untold story is and whatever makes it easier for them to accept shocking and life altering news then so be it.

 

So after more doctor's appointments I was told by Dr. Cutler, Royal Oak Beaumont Pediatric Cardiologist, that we would be giving birth in Ann Arbor at the U of M hospital.  That our son for sure would need to have the Norwood surgery and to do that U of  M would be the place to be.  She explained to me that her office would set up the first appointment and everything I needed as far as referrals.  Now, being honest we have all dealt with the health care system and it is NEVER easy - however this was a amazing experience, within the same day of finding out that I would be giving birth in Ann Arbor, a U of M social worker had called me and advised me that she was setting up multiple appointments all on the same day to make it as easy as possible as she knew I didn't live close. 

 

Our first visit to U of M was also amazing.  Well maybe not the drive there . . . I say this to pick on my husband as we took side roads from Royal Oak to Ann Arbor, I have never been so frustrated on a car ride.  But once we, my husband, my mother-in-law, and myself arrived all the appointments were set up for me, we had someone take us from appointment to appointment, and everyone in that building is SUPER nice.  I left there feeling like we are in the right spot.   

 

Now not everything was figured out in that one day in Ann Arbor, my primary doctor was still seeing me at Royal Oak Beaumont and we had another planned visit to Ann Arbor.  We still had ultrasounds, cardiograms, and NSTs (non-stress tests).  It was our second visit to Ann Arbor that we were able to get an inducement date, October 28th at 7pm.  It was sort of a mix of emotions to know that my son would be here and we would jump start that process on the 28th, still to this day I don't really like the idea of knowing the date.  On this visit we also got to meet with the surgeon who will be completing the Norwood surgery, Dr. Ohye.  He explained that he had scheduled my son's surgery for October 31st as long as he is born sometime between the 28th and the 29th.  To be honest, I really liked him, he was very straight up and honest with every aspect of what we were about to go through.  From there, the social worker took us on a tour of the hospital and the different floors that we would be staying on.  Now that was when all of this hit me.  Seeing those babies hooked up to all different sort of machines, tubes, vents, and everything else and realizing that this was going to be my son hit me like a ton of bricks.

Since That Day:

I have had some time since that day to process through what we, my family, is going to go through.  And honestly, we have some much love, patience, hope, and faith that this will not be an easy journey but it will be a journey that we all take together.  And really knowing that it makes it easier. 

 

Someone last night, actually,th pointed out how so much of this is the unknown for us.  And that is absolutely true.  There is so many directions, from birth for the rest of his life, that this could go but we just have to be there and support him and love him, and that is the only thing that I am sure on.

 

Peace, Love, and Cupcakes,

 

Jillian Whalin



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