Three More Days until Surgery #2

 

 

 

We are ready to do this again . . . maybe.

 



So here we are three more days . . .  Let me provide the run down of what is going to happen.

 

Monday, April 20, 2015-  After dropping my girls off at school Harlan and I will make our way back to Mott's Children Hospital in Ann Arbor.  Our first stop is a chest X-ray (on floor 3).  From there we will continue the day on the Cardiac Floor (the 11th Floor).  From there is will be a day of meeting with Nurses and Doctors.  We will complete a series of test including echograms and something that requires Harlan to fast.  I will not be able to feed him after 8am tomorrow and up to 11 he can only have clear liquids (water, apple juice, or pedilyte) - I can only imagine this will make for a long morning with a crabby little one.  Everything that they have planned for us should take about four to five hours. 

 

From there Harlan is free to leave.  We will be meeting up with my parents for the evening - I can not say enough how thankful I am for the AMAZING family support that we have.

 

 

Tuesday, April 21, 2015-  Harlan has to be back to the Hospital by 7:00am.  He will be getting a Cathazation 

Five Months Old, How Life has Changed!

 

 

Five Months Old, On Our Way to Surgery #2

 

 

Where we are today. . .

 

So it has been awhile since I have been able to write.  Now with three children my time is spent "being mom", working full time, and really just trying to keep up!  However, I wouldn't change any of it.  As of Today - Harlan is Five months old!  And what a journey we have had getting here.  Harlan is a happy, smiley baby.  I must say he is really an easy going baby.  He loves his sisters, his daddy ALWAYS catches his eye, and he will never turn down a bottle.  There are days that I completely forget about everything that Harlan has already gone through, as he really looks and acts like any other happy, healthy baby. 

 

Where we were . . .

So last time I wrote I believe I was still in the hospital with Harlan.  With Harlan's first surgery it was estimated that he would be in the hospital for about a month.  My strong little man was home in 12 days.  Everyday in the hospital Harlan progressed more and more, and everyday another tube, wire, or IV was removed.  I only left his side for two nights out of those 12 days.  Which was very hard for me, however I knew that my family at home needed my support as well.  My husband did an amazing job with my daughters and without our family's support it could have been a much longer harder road.  When we got home, Harlan had a week of doctor's visits - I was exhausted that first week home.  After that we are part of a follow up program - so every week (still to this day) I have a nutritionist call on Mondays, a Nurse call on Fridays, regular doctor visits every month to two months for our shots and healthy checkups, and a monthly cardiologist appointment.  When we first got home we had an at home nurse as well.  She would come and take Harlan's blood pressure, she would over stay her welcome and talk too much.  But I was thankful for the extra support.  It was finally noticed that Harlan is really doing MUCH better than anyone expected and all the support was a little bit of over kill. 

 

So it was a couple of weeks home and Harlan pulled his feeding tube out - from that point forward we have been taking a bottle and never looked back.  Then before I knew it - it was time to return to work, I only took my six weeks off.  People at work thought I was nuts, however it was time to go back.  Harlan got to spend time with his Grandpa, again I can not stress how blessed I am with an amazing Family Support! 

 

From there it was life as normal for any baby - we had our first Thanksgiving at Grandma and Grandpa's, we saw Santa for our first Christmas, our sisters showed us off at school, we eat, sleep, and poop.  And I finally settled into life with three children.

 

Where we are headed . . .

 

So our last cardiologist appointment it was determined that we are ready for our second surgery.  The best way to explain this surgery is that it will give Harlan a separation between oxygen and un-oxygenated blood from his head, neck, shoulders, and arms.  This is done by creating a direct follow of blood to the lungs (which Harlan doesn't currently have).  The doctor's say that he should be in the hospital for a week on this one (if all goes well).  We will have the same surgeon, Dr. Ohye, from Mott's Children Hospital in Ann Arbor, MI.

 

Personally, this second surgery is harder for me.  I have gotten to know and learn all about this smiley baby and I really don't want him to have to be in any pain.  But I understand that this is necessary and he recovered so well the last time that this should be a piece of cake.  It's just the feeling of the unknown that kills me about this whole disease.  

 

So, we are 24 days away from doing this all over again, we need all the thoughts and prayers that we can get.  Harlan surgery will take place on April 22nd, 2015 and with everyone's continued support we will be back to "normal" in no time.  I can not Thank Everyone enough, even the smallest gestures means the world to me and my family - so stay positive and keep praying!

 

Peace, Love, and Cupcakes,
Jillian Whalin

  







Surgery Day - October 31st - Happy Halloween

 

Surgery Day - October 31st

Saying "See you Later"

Mom woke up early knowing that it was her last time to hold you for awhile.   And the moments that we shared the day before were too few and far between to say that I was ready for you to be taken to surgery.  I was at your bed by 6am, the nurse pulled out a chair for me and I got to snuggle with you.  I got to sing to you, rock you, hug you, and make you promise me that everything would be ok.  And together we could get through anything.

 

The Doctors completed rounds about 7am - coming by and explaining that you were going into surgery today and what the plan was for recovery.  They talked about how wonderful you did over the night and that you were in good shape and ready for the surgery.  Shortly after, Dr. Ohye came by . . . on crutches.  My first thought was you have to be "kidding me" the person that is working on my son is in an air cast.  I was scared.  But he reassured me that you were in good hands and his current condition didn't stop him from getting you through this just fine.  He explained that we would be receiving updates while the surgery went on and that we should hear directly from him by about 1pm.  From there you were placed back into bed and the anesthesiologists came to take you.  The nurse told me that I should hear my first update by 10am.  So I gave you kisses and wished you luck and went back to my room. 

 

Let me pause and explain, that this is when I was finally alone and able to express myself - yes, I broke down.  You never want anything like this to happen to anyone you know let alone your own child. Watching you be taken away will forever be with me and the worse part of that is it will have to have happen at least two more times.  It's not that ever doubted you coming back to me its that I have no control over what happens to you and the previous 24 hours you looked so perfect I just wanted to take you home - this is all just a bad dream right??

 

Waiting . . .

So your grandmas and grandpas from both sides came around 9am to my room.  We hung out for awhile until we went down to the waiting room as it became 10am and we still hadn't heard anything yet.  Your daddy came in very shortly there after. . . he had to take your sisters to school.  We had decided that it being Halloween we wanted to keep normal as possible and they didn't need to be just sitting waiting to hear something - but I will tell you that your sisters were just as worried about you as everyone else.  We all talked about everything but what was happening, you could see that each of us had our own way of getting through it. 

 

So it wasn't long before a nurse came in to talk to us.  She told us that they were already completed with the actual surgery.  She told us that you were off bi-pass and your heart was pumping on its own already - this was probably about 11am AT THE LATEST.  I was shocked.  She said that Dr. Ohye would be in to talk to us before noon and that you would go into recovery but we would be able to see you by 1pm.

 

So the waiting continued, but I think that we all breathed a little easier after that news.  Now, I must tell you, when I originally met with Dr. Ohye some months back he explained to me that normally children that have the Norwood surgery would come back from surgery with their chest still open.  They do this to allow the heart to swell up and not be constricted.  I figured this would be the hardest for me to see.  However, it wasn't long before Dr. Ohye came to talk with us.  He explained that surgery went so well.  And that you were truly a fighter as your Norwood came out so wonderful and he was so happy with it that he closed your chest already and that you had not a single complication. We had to wait for you to come out of recovery but otherwise things should be just fine.

 

Seeing You for the First Time

When we were finally able to go back we could only go back three at a time.  So your Daddy, grandma and me went back.  When I first saw you my first thought was OH MY GOD, you look amazing.  I was so happy to see that you hadn't lost any of your color and that you looked just like you did when I said goodbye, well almost.  We took turns come and visiting, everyone dealt with seeing you a little different, some of us even broke down.  But - as your mother I was so alighted.

 

You kept up your end of the bargain, you made me feel like for once everything was going to be good.  I want you to know, little man, that I love you and truly that at three days old you made me PROUD.

 

Peace, Love, and Cupcakes,

Jillian Whalin   



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