CHD Week Story #3 - Logan Vallee

In honor of Congenital Heart Defect Week, we are bringing you some stories of hope.

This is the story of Logan Vallee who is 11 years old and has HLHS.  Like most with HLHS, his road has been a tough one.  But we are thankful that even in the last 11 years how much the medical field has advanced. 

CHD Week Story #2 - Aly Jean

In honor of Congenital Heart Defect Week, we are bringing you some stories of hope.

If you who have read our blog regularly or talked to us about HLHS, then you are likely to remember this heart warrior, Aly Jean.  Her mom, Jenny, was one of the first people we reached out to when we received the diagonis.  Jenny has answered tons of questions for us, ranging from serious to silly.  Considering all the kindness, patience and support she has shown to our family as total strangers, I know that she is an amazing mom, wife, daughter, sister, friend, colleague and person!  Aly  is through the planned surgeries, doing well and will be turning 3 in June.  Below is her 2nd Birthday video from last June and it just melts your heart.  Check out their blog to see more recent pictures here. What a special little girl and family!

CHD Week Story #1 - Jeni Busta

In honor of Congenital Heart Defect Week, we are bringing you some stories of hope.

Jeni Busta is a 26 year old survivor of HLHS.  She drove across the country to meet a new baby born with HLHS, Kaelyn DeYoung, in April of 2011 and is making a documentary of the trip.  The trailer for the documentary is below and we are just ordering the DVD for the full documentary as it just came out!  We are thankful that her parents made the choice of life and that Jeni has been such a strong heart warrior.  She really has been though a lot.  Over the last 27 years the medical procedures have changed and improved so much that it gives us such hope for our little girl!


"Journey's Beginning" Trailer from james eric on Vimeo.

Congenital Heart Defect Awareness Week

Februray 7-14 is Congenital Heart Defect Awareness Week so we wanted to pass along some information to help spread the word.  Unfortunately, congenital heart defects (CHDs) are all too common and can happen to anyone at any time.  We are proof of this as there is no reason that anyone can give us why our daughter will be born with a CHD and we didn’t do anything that anyone can point to that caused our daughter’s CHD.  HLHS is just one type of CHDs and it is amoung the most rare. More research is really needed to help those that are born with CHDs and to help eradicate CHDs altogether! 

According to the CDC:

-Congenital heart defects are the most common type of birth defect in the United States, affecting nearly 1 out of 100―or about 40,000―births per year.

-About 85% of congenital heart defects are NOT associated with genetic conditions.

-About 70% to 80% of people with a congenital heart defect do not have other physical problems or developmental or cognitive disorders.

-There are likely nearly 1 million adults in the United States living with a congenital heart defect.

These heart warriors have usually been through more in the first few years of their lives than we can even imagine!  This week we will share with you some stories of these heart warriors with HLHS to give us all some hope!

Hearts of Hope Event

This afternoon we attended a Hearts of Hope event called a Day for Hearts.  It was a nice event for those affected by congenital heart disease.  The event had games, lunch, the best balloon making clown ever, a magic show and dancing.  Our older daughter really enjoyed the dancing at end and thus, why she will still not going down for her nap!  Anyway, it was inspiring to see so many little survivors running around enjoying themselves.  Besides at the hospital, this is the first time, to our knowledge, that we have seen any HLHS kids in person.  This was truly an inspiring and emotional experience.  It is so encouraging to see these children running around like any other child. It really does give us hope!

We have a plan

Our appointments at U of M went well yesterday and we have a plan… well sort of.  I will be induced at 39 weeks but we didn’t schedule the date yet because they do not schedule that far advance.  So we will schedule when we go back for our next appointment on March 2.

The day started off with the ultrasound.  We had the same tech as last time and she was very nice.  She cruised through the ultrasound and was able to get all the measurement quickly.  Nothing looked any different than before and our little one is already measuring to be about 4 lbs. 14 oz.  We are so excited that she is growing so well and is likely to be a nice sized baby.  We also got to see some of her hair, which explains my heartburn! 

Our next appointment was a meeting with a high risk ob.  The women’s ob clinic is right in the children’s hospital.  As with any appointment, it started out with my weight and blood pressure.  We were totally amazed (and happy) when my blood pressure came out on the low side for me.  It hasn’t been high this pregnancy but of course with my family history, it is always something we watch.  So good news there!

At the ob appointment, we learned a lot.  As far as the ob is concerned, I am not a high risk patient, but it is our little one that puts us into the high risk category.  I am going to continue to do the shared care, so that I can have my appointments with my local ob office, which is literally minutes from our house.  Of course, if there are any signs of labor before the scheduled induction date, we have to head over to U of M.  We obviously need to do what is best for our little girl and having her born at U of M is the best start we can give her!  Learning about how things will go makes us feel more comfortable and enables us to have a plan. 

After lunch we had a fetal echo.  The same fellow that did the first echo did our second echo.  Our little girl was moving around and put her chin down with her hands pulled in just to make things more difficult for the fellow and the cardiologist.  She is a feisty one!

The good news is that she is a “standard risk” HLHS patient.  The cardiologist says there are no “low risk” HLHS patients but there is nothing that would put her into a high risk category.  This is, of course, good news.  The cardiologist answered all of our questions and again we were able to come up with one that she hasn’t heard before.  I think we just have some odd questions!   The next echo that our little girl has will be once she is born!

After the echo, we got a tour.  We started with the area where we will spend the least amount of time – the general cardiology rooms where we will be just before we are ready to go home.  These rooms are all private and both parents can stay in the room.  In this area is a big play room, art center, laundry and kitchen.  It was very nice and will allow our older daughter to come spend some time with us.  The next area we visited was the cardiology intensive care unit.  In this area we will spend a lot of time.  The rooms are all private and each room has one nurse assigned to it.  One parent can stay in these rooms.  Then we visited the other part of the intensive care unit where patients come just after surgery.  It is a more open style than the private rooms but there is still some privacy compared to old-style intensive care units.  One parent can stay bedside here as well.  We checked out the waiting room, which was already an emotional experience as any experience can turn into with a pregnant lady!

We then visited the Ronald McDonald House that is onsite and literally around the corner from the intensive care unit.  We are hoping that we can get a room there for the beginning of our stay but it is not certain. So we shall see on that.

We visited the milk storage area and found out more about the process for storing milk.  The final stop of our tour was an activity center that has just opened.  This activity center is beautiful as long as you are a Michigan fan.  It has a huge jungle gym and many other things that can keep the kids entertained for quite a while.  We think our older daughter will enjoy spending some of her time here.

Things are starting to come together and everything is feeling more real.  This can be both good and bad.  We feel that we are preparing as best we can but you cannot be prepared for everything and you never know where the road will lead you.  We are just happy to be working with everyone at U of M to give our little one the best care possible.

In the oddest part of the plan, my three sisters all have three different weeks off for spring break right after the time that our little one will arrive.  What are the odds of that?!? 

Thank you to everyone for all of your support!  It really means a lot to us.

As I finish writing this our older daughter is refusing to go to sleep for her nap despite falling alseep in the car on the way home earlier... Oh the joys :)

Ob Appointment

We had an ob appointment this morning with my favorite ob.  I love all of the obs at my office and the nurse practitioner – they are all great – but we have really connected with the ob we saw today.  She has been through so much with us and has always been positive (without blowing sunshine) and realistic.  It is actually sort of ironic because during my first pregnancy, I only saw her one time, she wasn’t my favorite and then she delivered our older daughter.  She was great during the delivery and we liked her.  Then we didn’t see her again until after our diagnosis.  And now, since I don’t have to see all of the doctors, I try to schedule all of my appointments with her but she won't deliver our second daughter.

At the appointment we talked about whether she thought I would be induced versus going into labor on my own.  In her opinion, she thinks that they will schedule a date for induction about a week before my due date because this way we can make sure the cardiologists and other supporting team are available and ready.  She also explained that since this is our second, it should be an easier process because my body knows what to do (but of course nothing is guaranteed).  We were expecting this and we really want to do what is best for our daughter.  This sounds like it might be what is best but we will find out more on Friday at U of M.  The appointment ended in a hug, which was very much appreciated!