Thanksgiving Weekend Recap

We have much to be thankful and we do realize this.  We had a great holiday weekend with family and friends.  We were able to gather ourselves with our time off and relax.  It was even topped off with a Michigan football win over “Ohio”, which is hopefully a sign of good things to come.

The MDC

So back when we got the news, we were promised a meeting called a multi disciplinary council (MDC) with various doctors and people from our hospital.  Initially, we thought it was going to take place by the end of that first week.  Well, it took until Friday to get the meeting scheduled.  The meeting was not taking place until the afternoon the day before Thanksgiving.

We were not very happy about how long this was going to take.  If we waited until our meeting to take action, it would nearly be December by the time we could even try to schedule our next appointment due to the Thanksgiving holiday.  We knew that we wanted to see Dr. Bove at U of M, so why was it necessary to have this meeting with so many people when he was the one with all the answers?  Well, we took matters into our own hands and called over to U of M.  Shortly thereafter, we had our appointment scheduled at U of M with Dr. Bove – December 8^th. 

There were times that we wanted to cancel the MDC.  It seemed like it would be a waste of time.  After meeting with one of the awesome OBs from my office, whom I hadn’t seen since she delivered my older daughter, we decided to go to the MDC.  My OB was generally very optimistic, which was a change from everything we had been experiencing lately.  She let us know she would also be at the MDC.

The MDC started with a genetic counseling, which we didn’t even really want to have in the first place.  We know there is an increased risk of genetic defects but according to our integrated screen and the level two ultrasound, everything looks normal.  We understand that there are errors associated with both of these and there are no guarantees but we didn’t want to have to listen to the genetic counselor try to convince us to have an amino or mention other alternatives that we have never been willing to consider.  Much to our surprise, the meeting went well all things considered.

There was a break after we met with the genetic counselor and before meeting with the room full doctors.  When we were called back into the meeting room, it was filled.  There were four doctors, two residents, the genetic counselor, my bff who is also a doctor, my husband and of course me.  The social worker, whom I gathered was supposed to be there merely to take notes, could not attend.  The genetic counselor took notes for us, which were very detailed and highly appreciated.

The meeting was a bit intimidating but we were prepared with our research and our list of questions.  We learned a lot and the pediatric cardiologist said she highly recommends Dr. Bove and U of M, so we were already on the right path. 

It felt good to get more information and be moving forward although we could have had a few less people in the meeting to get the message across in a much more effective manner.  But I guess everyone wants to have a say.

Reaching Out

In our research, we were able to find a lot of blogs out there of people who have similar stories.  I found a very inspirational story at: www.alyjeansspecialheart.com/.  It touched me quickly when I read their story of the level two ultrasound.  It sounded so similar to my story and touched me.  They had also decided to go to the U of M and had Dr. Bove for the surgeries.  I made my way through all of the posts, mostly with tears in my eyes, and was so happy to see their family standing strong on the other side of all of this. 

I decided to reach out to this special heart mom, Jenny, since she had been there and done that :)  She responded to me so quickly and was able to just understand what we are going through right now.  It helped.  It is just so nice to know that your family is not alone in this. 

Jenny also told me about a great organization called Sisters By Heart.  It is a group of Heart Moms who send out care packages to newly diagnosed HLHS families.  Just the idea of getting a list of things a group of HLHS Heart Moms recommended excited me, let alone an actual package of recommended things!  I couldn’t believe that there was such a great group out there.  You can check out their blog at: www.sisters-by-heart.org/, which has a ton of information on it that has already been very helpful to us!

Thank you!

We want to extend a huge thank you to all of our family and friends who have been so supportive through these initial days.  The phone calls, cards, prayers, prayer requests, and emails mean more than you can know.  We are thankful for all of the kindness that everyone has shown us over these past few weeks.  We will likely have to call on many of you over these next months and so thank you for being there for us in advance!

The Email

Here is a sample of the email we sent out in various forms to many family and friends:

Dear Family,

We hope this email finds you well.  We are happy to tell you that MJ is going to be a big sister around March 25, as many of you already know :)  We are expecting another daughter.  This last week we found out that our baby has an underdeveloped left side of the heart (called hypoplastic left heart syndrome).  It is a pretty rare and serious heart problem.  Although we are still getting our arms around this, we know that she we will have to surgery within her first week of life, again at 4-6 months and then again at 2 years old.  Even though nothing is certain and we have a tough road ahead of us, her prognosis is good to have a wonderful, long life with the help of the top notch team at U of M.  We hope that you can keep our unborn daughter in your prayers. We are really trying to keep a positive attitude during all of this.  Please do not feel sorry for us because there is really no reason to be sorry.  We are excited for the arrival of our second daughter and will do everything we can to meet the challenges that are ahead of us!  Your positive support means a lot to us!

 

With love,

L & A

We apologize that we had to send this out but it was the most effective way to get our news out there.  It is hard to have to have to explain this just a few times and we did want to share our news.

As we state in the email, we are not looking for sympathy.  We know that God has chosen us to be the parents of this little girl so that we can provide everything that we can.  We have the means and the support necessary to do everything we can to give our daughter the best life possible. 

Research

Over the past few days, we did TONS of research.  Some of the research was good and a lot of it was bad.  My bff, who is an awesome doc, did her own research for us and reached out to some of her doc friends.  She provided us with a wealth of information and support (as she continues to do). 

Through all of our collective research, we found that U of M’s Congenital Heart Center is ranked third in the country in pediatric cardiology surgery and Dr. Edward Bove is the surgeon to work with when your child has HLHS.  With knowledge is power and we began to feel hopeful and less confused.

We found that our daughter would need surgery on her heart within the first week of her life, then again when she is 4-6 months old and then again when she is between 18 months to two years old.  The survival rate of these surgeries varies based on the hospital and the surgeon, so this is why we decided to go with the leaders and best.  We still have a ton more to learn but we are ready and willing to move forward with a positive attitude!

November 15

This is the day we had our level two ultrasound and found out that our daughter had “an under-developed left side of the heart”. Our lives changed instantly. 

As many hypoplastic left heart syndrome (HLHS) stories go, we had our anatomy scan and everything looked normal but our tech couldn’t get a “good” view of the heart.  We found out we are having a girl and everything looked normal even though she couldn’t see the heart very well.  The tech joked that our daughter was a stubborn one and made me get up and walk around.  This didn’t change anything.  The tech told us that she wasn’t worried but she wanted us to come back so she could have a better look.  We made our appointment for two weeks later and headed off to Germany without a second thought.

The Monday morning after we got back from Germany we headed back to our OB office to have a follow-up scan.  Our regular ultrasound tech was out since she just had shoulder surgery so we had a new lady.  She also couldn’t get a good view of our little girl’s heart.  She also made me get up and walk around.  When I got back my OB was in the room.  This was a first and of course, made us worry instantly.  Our OB agreed with the tech that there wasn’t a “good” view of the heart and ordered a level two ultrasound at our nearby hospital.  She also asked for an echocardiogram, which she told us was to get a good view of the heart.

It took forever to get the appointment scheduled but after the tech talked to the hospital, we got our appointment scheduled for November 15 (the next day) in the afternoon.  I was nervous but not overly concerned.

I talked to one of my sisters to calm some of my fears, as I often had during my first pregnancy, and was convinced that this was just a precaution.  The tech was new and couldn’t get a good view so she called my OB in to prove she couldn’t get a good view.  My OB merely agreed.  Well, there was a reason that they couldn’t get a “good” view of our little girl’s heart.  It is underdeveloped on the left side.

My husband and I both drove to the hospital directly from work.  We were both nervous but had no idea how much our world was about to change.

The tech started on our level two ultrasound and measured everything. She kept noting how everything was measuring normal.  When she moved to the heart, she also had me get up and walk around because our little girl was not in a good position.  I was all too familiar with this.  Once she had a good view, she was no longer telling us how everything looked normal.  She was taking her measurements and was very quiet.  My husband asked how everything look and she said that one side was measuring smaller than the other, which is not normal.  I shot my husband a concerned look and the tech told us that a doctor would review all of the shots she took and then come in to talk to us.  My husband asked a few more questions and I just wanted the doctor to come in to explain this all to us.  I was scared and confused.

The doctor came in and did some measurements of his own.  He had me sit up and then began to explain how a normal heart functions.  We had anatomy, cut to the chase already!  He then moved on to how a baby’s heart in the womb functions differently.  FINALLY, he explained that our little girl’s heart was underdeveloped on the left side.  He threw out some terms and I was probably in too much shock to take any of them in.  I was crying and couldn’t believe what I was hearing.  What did this mean for our little girl?  Was she going to be okay?  Our world was spinning.

After answering a few questions that my husband could piece together, they brought us to what we figured was the bad news room.  We tried to gather ourselves a bit and put together some questions.  When the doctor came in, he answered all of the questions that he could for us.  He let us know that our baby would have to undergo a series of surgeries and that they couldn’t do the surgeries at this hospital.  So we would have to deliver at one of the area hospitals that could do the surgeries for us.  Then he told us we would have some sort of meeting with a bunch of doctors, a genetics counselor and a social worker.  He said it probably wouldn’t happen until the end of the week.  We would be able to get more information at this.

When we got home, we shared the news with our nanny.  Her son had had open heart surgery as an infant, so she assured us that there was a lot that we could do for our little girl and she would be here for us.  What are the odds that she would be in our life at this moment having been through all that she has?  We have loved having her in our lives since the moment we met her and now even more so!  Her encouragement and unwaivering support means so much to us and we are so blessed to have her in our lives.  At that moment, it was really all we wanted to hear – our little girl was going to be okay.  It isn’t a promise that anyone can make but we decided that we are going to stay positive and we are going to do everything we can to make her okay.

That night was really hard for us.  We were playing with our older daughter after dinner and I just bursted out crying.  Our older daughter came over to me and looked really concerned.  I knew I was scaring her.  I don’t think she has ever seen me cry other than perhaps a few tears of joy.  I am sure it was frightening.  I never like to see my mom cry.  So I had to pull myself together. 

We did research online and talked to our family and my bff who all provided a ton of support.  It was at that point we found that an “under-developed left side of the heart” is HLHS and the University of Michigan has a ton of up to date information about it on its website here.

When we went to bed last night, we were exhausted and still shocked and confused.