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Wednesday, February 29, 2012

Leap Day Update


Happy February 29th!  When we first found out we were expecting a baby in March, I was worried about this day because I didn't want our baby to be born on it.  In elementary school there was a boy with a Leap Day Birthday and (unfortunately) we made fun of him for it since he only had a birthday once every 4 years.  I guess once you are older, it is nice to be a lot "younger".  Our baby girl will be full term on this coming Sunday so we are hoping that she doesn’t arrive until at least after that.  Despite the fact that I am tired and uncomfortable, we want her to continue to grow safe and sound for as long as possible.

Anyway, it has been a while since our last update because we have been busy, busy!  My husband’s sister and family are in town from Germany.  Our daughter is enjoying hanging out with her little cousin as he crawls after her, although she isn’t a big fan of him playing with her toys.  We are working on sharing.  To add to the craziness, we are having our attic finished up.  Hopefully this finishes up sooner rather than later. 

My non-stress test and ob appointment went well last week.  The little one had her active periods and rest periods within 20 minutes so we were able to get on our way.  My blood pressure was a bit increased, so we are keeping an eye on that.


Our meeting with our pastor went well.  We have his cell phone number so that we can call him to have him come over to the hospital for our baby girl's baptism before her first surgery.  We also received a nice blessing from him.  It feels good to have this sorted out.

I really cannot believe that I only have a week and a half left of going into work as I will work from home my last week before the induction.  On Friday we will schedule the induction date!  The bet is March 19 although it could also be the 20th, so we shall see soon.

Sunday, February 19, 2012

One Month-ish Left

We have about a month left until our little one arrives.  I am definitely starting to feel very pregnant – uncomfortable and tired – with all the fun that comes along with that.  We want a big baby and I have a feeling that I will deliver on that one ;)

I started having weekly non-stress tests last week.  My first one went well and the little one cooperated.  The hospital was getting a new computer system so I was delayed 30 minutes.  Once we got going our little one had her two active periods when her heart rate increased with rest periods when her heart rate came back down.  This is what you look for so we were glad that she did so well!

My weekly non-stress test is followed up the next day by my weekly ob appointment.  No real news here.

We have a meeting with our pastor this coming week because he will be coming over to the hospital after our little one is born to baptize her.  This is something important to us so we are very excited to have this meeting!

Finally, if you want to stay updated without having to come back and check the blog all the time, you can sign up for emails on the right of the blog.  We have found that the alerts are not always timely as to when a new post is posted but it is better than having to remember to come here randomly.

Until next time!

Tuesday, February 14, 2012

CHD Week Story #8 - Meghan Roswick

Happy Heart Day!  How fitting that Valentine's Day is the last day of Congenital Heart Defect Week.  So this is the last story for the week.  Hope you enjoyed them as much as we did!  

Below is a "Day with Meg Roswick". Meghan Roswick is a 20 year old with HLHS. Her day is pretty long but she starts talking about her HLHS around 7:29. She lives a normal life and her story gives us great hope!  She has some really powerful messages at such a young age!




There is also a second video that Meghan just shared.  She did an interview at a  local news station with her Mom that aired yesterday for CHD Week.  It is great to see her spreading the word and spreading the hope!


Monday, February 13, 2012

CHD Week Story #7 - Sisters by Heart

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

We would be remiss if we did not post this video when bringing stories of hope.  Sisters by Heart is one of the first places that we were able to get hope from.  It is such a great organization and they do truly help to provide newly diagnosed parents with the hope we so desperately desire!



Sunday, February 12, 2012

CHD Week Story #6 - Mira Larrison

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

Today's story of hope is that of Mira Larrison.  She had to have surgery while she was in the womb for her HLHS (that our daughter does not need) and was born in 2009.  It is really amazing what they can do at U of M and that was already 3 years ago!

Saturday, February 11, 2012

CHD Week Story #5 - Maribeth Gillis

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

We have been in contact with an adult HLHS survivor.  Her name is Maribeth Gillis.  She literally wrote me back 8 minutes after I wrote her an email.  She shared with me a blog posting that she wrote as an adult CHD survivor telling her story.  She will be a regular blogger on Heart Waves.  Here is the link:

http://info.heartwaves.org/bid/119923/Living-As-An-Adult-With-HLHS

Friday, February 10, 2012

CHD Week Story #4 - Bowen Hammit

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

Today's story is that of Bowen Hammit.  His dad, Matt Hammit,  is in the Christian band Sanctus Real and one of my sisters was the first one to point me in their direction.  Matt actually wrote an ablum inspired by his son.  We just got the album and it really keeps you in tears.  Bowen will be 1.5 here shortly and by the family's account, he is doing well.  Here is the story of Bowen's birth and first surgery at U of M.  Note: you have to clink on the link to watch it on Youtube.

Thursday, February 9, 2012

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. 

Wednesday, February 8, 2012

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!

Tuesday, February 7, 2012

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.

Monday, February 6, 2012

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!

Saturday, February 4, 2012

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 :)

Wednesday, February 1, 2012

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!