Tuesday, May 10, 2011

Baby by Ohio, Heart by University of Michigan

I've sat down to write this post no less than a dozen times.  It's not a case of writer's block.  I think it's a cold, hard case of denial.  I mean like deep denial.  Like every day we get closer to Joey's surgery, I go more into denial.  I want to write about it, but I'm finding that the more I write about it the more real it is becoming.  Going to the hospital, meeting with the cardiologist, getting our scheduling instructions--it all is just becoming much more real than I ever imagined.  Instead of dealing with it I just keep scheduling myself like a crazy person.  I work full time right now and in addition to that I'm co-chairing a fundraiser this coming Saturday/Sunday and I'm volunteering at another fundraiser this coming Friday.  

On top of those commitments I'm trying to spend more time with both Joey and Tommy because I just don't know what our lives will be like  during and after his surgery.  I imagine that I am probably just trying to do anything and everything to not think about what is coming up and in the process I am just pushing myself to the absolute brink of exhaustion.  I feel bad for my husband who has been living on leftovers and the occasional bowl of cereal because right now I make a real dinner about one night a week and hope that the leftovers will last for most of the rest of the week.

Friday was a long, long day.  Why is it that when I know I have to get up at 4:30am I end up staying up until midnight the night before?  What is that all about?  The good part was that we realized that the drive to the University of Michigan is only 2 1/2 hours.  Somewhere along the way I had gotten into my head that it was a 3 1/2 hour drive.  It's nice to know we are going to be that one hour closer to Thomas Henry who will be staying in Akron during the first few days of Joey's hospitalization and recovery from his open heart surgery (OHS). 

Right off the exit into Ann Arbor was a Starbucks (cue--angels singing) where I picked up a Venti Americano (I'm usually a Grande Americano girl, but it was an early morning).  Pulling out of Starbucks, Tom saw a McDonald's where he proceeded to pull in and order a large Coca-Cola and Sausage Egg McMuffin.  I ordered the fruit and oatmeal (not bad!).  It is literally hell being married to someone with his ridiculous metabolism (and he doesn't work out--totally unfair--I hope our kids get his metabolism).  

We finally made our way through downtown Ann Arbor to East Medical Center drive. 

Above is the new Children's Hospital, which will be opening in November. It looks amazing!

What we learned on our last visit was that we could park in the actual parking garage and the hospital will even validate our ticket, or we could pay $5 to have our car valet parked.  The $5 option is definitely the way to go.  You pull up, you pull all your junk out (cooler of bottles mixed with thickener, diaper bag, Joey's medical history bag, my giant camera, etc.), and these nice folks take care of the parking for you--I'm telling this is the best $5 we spent all day. 

Because of my major time/distance miscalculation, we arrived at the hospital about an hour before our scheduled appointment.  If you know us, then you are probably laughing right now because we generally are not the early family.  We are generally the family who is flying in exactly on time or about 10-15 minutes late.  This time we rolled in at about 9:15am.  

Going through all of this with Joey we encounter many, many doctor's offices and medical facilities.  I cannot even begin to explain how amazing U of M has been.  Despite being this major, major hospital and center for pediatric cardiology--someone always answers the phone, someone always calls you back and they truly take good care of you.  Within five minutes of our arrival we were already called back to a room.

We first met with a cardiology fellow who reviewed Joey's history, listened to his heart and checked his blood pressure.  He said, "I guess I don't have to ask you if he's been eating."  Nope.  Big Joe has been a champion.  Some babies who have a congenital heart defect and Down syndrome have a difficult time gaining weight.  Once we figured out the aspiration issues (a post on aspirating to come soon) Joey was able to do a great job with eating his bottles and gaining weight.

The next step was heading back to the sedation area where we met with an amazing nurse--Terri.  A good nurse makes all the difference in the world and we were blessed with this angel.  She was with us from the beginning of the sedation process, through the echocardiogram and then afterwards while we waited for the sedation to wear off.  Terri and I mixed and measured and finally figured out how much thickener to add in to make the chyloral hydrate thick enough so he wouldn't aspirate it.  Once we got it into him it took about 20 minutes for him to finally stop crying (he was pretty hungry) and fall asleep.

Sorry, Joey-- not the most flattering pose, little man, but an adorable photo of you and Daddy.

Nurse Terri came back in and we rolled with Joey over to the echocardiogram room.  Ironically, although we are up in Wolverine country, this particular sonographer is apparently the only Ohio State fan in all of Ann Arbor.  He quickly emphasized to me that he was not from Ohio, but just a fan.  Ummm... okay.  This should be fun.  

I have a lot of mixed emotions about the echocardiograms.  It's been such a wild journey.  We had our first one when I was about 24-25 weeks pregnant. I then had multiple more while pregnant and then once Joey was born he has averaged about one echocardiogram every other month.  It's such an incredible process to sit and watch people stare at your baby's little heart.

The echo lasted about an hour and the entire time our angel nurse, Terri, sat with us, answered questions and tried to really help prepare us for the surgery.  

Once the echo was over we headed back to the sedation area.  Joey was completely knocked out.

After the echo, Joey's cardiologist and his fellow met with us to review the results.  There was a tiny, tiny part of me that thought maybe, just maybe they would say that everything looked great and that Joey didn't really need the surgery.  That wasn't to be.  The doctors said that yes, his hole is getting bigger and his mitral valve is leaking and that because his hole is basically in the middle of his heart and is pretty big, he definitely needs to have the OHS.  We talked a little bit about the surgery and next steps and they said that post-surgery he will continue to need to have his mitral valve monitored in case it ever starts to leak again.  

The doctors left and while we were giving Joey some time for the sedation to wear off, another angel met with us.  This angel's name was Barbara and she is the social worker who helps families arrange housing and answer questions.  Again, I cannot emphasize what it means to have kind and helpful and compassionate people in the medical field.  You all make such a difference.  Parents and family members already have so much stress and so many worries between the insurance and the scheduling, let alone the actual emotional stress and when you meet people like Terri and Barbara you are just so, so grateful for their care and their compassion.

Terri said that she would keep an eye on Joey so that we could tour the ICU and the moderate care floor and the general care with Barbara.  It was so very nice of Barbara and she took us on a complete tour starting with where we would wait while Joey is in surgery.  She then took us through the ICU where we saw at least four other babies who had just had OHS and were in recovery.  It really was like everyone says it is-- all kinds of tubes and machines on these tiny little bodies.  I just keep telling myself that the surgery will be a good thing and that it will be a huge milestone to get past it.  Still-- those tiny babies, those large cuts down the middle of their chests and all those machines.  Ugh.

She showed us the laundry room (yep-- a lot of the parents are in the hospital for quite awhile with their kiddos so there is a place you can do your laundry). She showed us where we can get water and coffee.  Where there is a public shower.  Right now we have reservations at the Med Inn, which is a hotel connected to the hospital, but they are undergoing renovations and we aren't sure if a room will be ready by Joey's surgery.  We are keeping our fingers crossed because the Med Inn is literally a five minute walk from the cardiac unit and it would be great to have a place so close to just shower and change clothes.  

Barbara also showed us the following board:

This board has some Gore-Tex (what will be used to patch Joey's hole), it has a chest tube, a central line, pacer wires and last but not least- sternal wires.  For some reason I'm good with most everything, but for some reason when I think of my precious baby's chest getting cracked open and then sewn up with sternal wires that will be inside him for the rest of his life I get a little choked up. 

Moving on. After the tour with Barbara it was time to go back to Joey and see if we could wake him up.  It took a little bit, but once we did he was a hungry little man.

Great job, Joey!  We are working on holding our bottle.

We also had a surprise visitor down in the sedation room-- Uncle Eric!!!  My brother, Eric, who is also Joey's Godfather, attends school at Eastern Michigan University and he came over to meet us and see Joey.  Eric's girlfriend, Emily just graduated as a nurse at U of M and was actually working the day we were there, but was on a different floor and since none of our cell phones worked down in the basement we missed seeing her on this visit.

I know I've already said this,  but it was a long day.  On the brighter side, at least there were no major surprises.  We've now known for a year that Joey would need OHS and that his day would come.  I do feel blessed that we have had this time to prepare.  I feel blessed that he made it past six months (that was a major goal-- apparently OHS surgery after a baby is six months old is much easier).  I feel blessed that he didn't need to have surgery immediately after birth.  I feel super blessed that we get to take him to this amazing pediatric cardiology center and that we are taking him to a place where they are experts and where Joey's heart issues are nowhere near as complex or as major as many of the other heart defects they see and treat.

I am grateful for my husband, for our children and for all of our family and friends who I know are going to help us get through this scary time.  I'm grateful for the incredible surgeon and medical team that will be helpful heal Joey's heart.  

As Al Green (and the Bee Gees) sang...
And how can you mend a broken heart?
How can you stop the rain from falling down?
How can you stop the sun from shining?
What makes the world go round?
How can you mend this broken man?
How can a loser ever win?
Please help me mend my broken heart and let me live again.


  1. Jen,
    I hear you in overbooking yourself and avoiding this post as a means of feeding denial. I cannot even imagine what you are going through but do know that I am thinking about you guys and praying very hard. I am relieved that you had Terri, Barbara, and valet parking to help ease things a bit.

    The pics of Joey on his tummy--excellent head lifting! He is such a strong little boy.

  2. Hey Jen:
    I just wanted to let you know that I am a silent but regular follower of your blog. You are doing a really incredible job with it, and I bet that, as hard as it is to write these posts sometimes, they are probably really great therapy for you. They are also really great to read and see. Joey is just one of the most adorable babies I've ever seen (and I have had some pretty cute ones, if I do say so myself!)
    Anyway, I am there with you as best as I can be, and I am rooting for you guys! I cannot imagine how hard it must be for you to prepare for this surgery, but it sounds like you are doing a really good job. You are a strong woman and you will get through this.
    All my best,


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