Sunday, September 16, 2012

We Picked A Name!!!

She has a name!!
Aug 30, 2012
We have been going back and forth on several names for our baby girl! Whatever we picked one thing was certain for me... it had to have MEANING! We had narrowed it down to about 4 names and one day my husband came down with some paperwork for FMLA and had me look it over and that's when I saw it in print! He decided on her name!!
Isabelle Grace Groninger
I think we will call her "Izzy" for short! 

Second Trip to Michigan!

Aug. 9, 2012
Our second trip to Mott's Children's Hospital:
This trip was basically a follow up and a chance for us to get to meet the surgeon, Dr. Ohye who's skilled hands will be operating on our little baby girl.
During our first visit they had found that her ventricles in her brain were on the high end of normal (at 10) and this time they were measuring lower (good news).  It was still hard for them to get good visuals on her entire brain, specifically looking at the corpus callosum, the midline of your brain that connects the two hemispheres (left and right) and it communicates and coordinates functions of the body. The corpus callosum transfers motor, sensory, and cognitive information between the brain hemispheres. The doctor who was looking at it could see the blood flow in the front part but not follow it back to the base of the brain, mainly because of the position she was in.  They will keep an eye out on it and believe that it's ok and that there's no need to have an MRI done.

The other thing they found NOW was that here heart RHYTHM is irregular and concerning to the cardiologist. The bottom chamber, the pumping chamber (aka: right ventricle) is NOT firing in proper rhythm with the top chamber (aka: right atrium).  The concerns are that it could cause what they call a heart block which has varying degrees, but with our baby having only "half a heart" it's a concern that must be watched closely. Here is a link to better explain heart block on a normal heart: Heart Block
So the pediatric cardiologist we saw there, Dr. Van Der Velde, strongly encouraged us to see our pediatric cardiologist back home in Evansville on a weekly basis to keep an eye on it to make sure it doesn't get any worse. On this day, the top chamber was beating at a normal 120 (+/-) beats per minute and the bottom chamber was only beating at 65 bpm. If it gets worse than that or other concerns arise from it then there is a good chance we will have to have a c-section earlier than our scheduled date.  Otherwise, baby girl is growing well and is 2 lbs 2oz. 

We did ask to speak with the genetic counselor in MI to see if she might know any more information regarding the abnormal duplication of chromosome 8 and she also said that there is no information on this particular type of duplication.  So as far as that goes, it's still remains unknown the implications it could cause. (Frustration!!) 

We LOVED Dr. Ohye and were so glad to meet him! He sat with us for at least an hour going over our  baby's heart condition again with us, explaining that her heart isn't a straight forward classic case of HLHS.  She has Hypoplastic Left Heart Syndrome (HLHS) but also has double outlet right ventricle (DORV) and a atrial septum defect (ASD).  Then he went over what it is they do to make the heart work and function as "normal" as they can.  He explained the"whys" and the "hows" on the different types of surgeries she will undergo and what they will be doing in each surgery and what it accomplishes.  I wish I had been able to record it because he made it so clear to understand! 

We will be heading back to MI on September 13th for another follow up!! 

Monday, September 10, 2012

Results from Chromosome 8 research!

July 11, 2012
It felt like an eternity passed before we finally heard back about what it meant when we were told about  the "extra material" on chromosome 8.  The anticipation and the anxiety we felt was again on high alert for this doctor appointment ~ wondering what we were going to be told now! 
Soon after our appointment began with the genetic counselor all the anxiety was replaced with MORE unknowns and more frustrating news. Our baby girl has not one not two not three but a total of  FOUR copies of the top 3 bands on one of the short arms of Chromosome 8.  Now normally anyone would have two copies, one from mom and one from dad.  But hers duplicated and now she has 4 total. (I have added the photo at the bottom of the chromosome print out they gave us so we could "see" what they were talking about.)

What we heard next is what made us speechless. 

"THIS HAS NOT BEEN FOUND IN LITERATURE" the counselor stated, therefore they can not tell us specifically what this will mean for our baby. She handed us a brochure on different scenarios about deletion and duplications of this chromosome and what it can lead to and mean.  Well, she told us to take it with a grain of salt because it really doesn't apply to our situation. What can one say, think or feel now ~ NUMB is the word that comes to mind! Can I call it a set back... maybe... but it is more like yet another "unknown" piece being added to an already complicated situation.  So it was pointless to try to go home and research this specific chromosome 8 abnormality... there really isn't ANY information out there about it!
Adam and I agreed to the request to have our blood taken to see if either of us were carriers. We both felt like we weren't based on the fact that our first child is healthy, but I understand that some people can carry duplications of a chromosome and never have "side effects" from it.  We were hoping that neither of us carried it because it could defiantly change our minds about having any more children.
This whole situation to say has been difficult is a huge understatement at this point. We felt our faith, hope and strength fading before our eyes.

Ultrasound photos from July 11, 2012 (almost 26 weeks along) 

Trying to hide

Below is the Chromosome 8 duplication. 
One copy on the left and 3 total on the right.

Our First Trip to Michigan

June 28 2012
Knowing we couldn't make the 9 hour trip to Ann Arbor in one day with our appointments beginning so early we decided to head for Indianapolis on Tuesday.  We stopped to spend the night with Adam's brother and sister-in-law and their son Zac and this is where Chloe would spend her very first night away from us both ~ as Mommy and Daddy headed to Michigan on Wednesday.  I think it was harder on us to leave our sweet Chloe behind than it was for her, I doubt she even noticed we were gone! 

My husband and I were both anxious about our first visit and orientation of the hospital but we were ready to take this big step ~ feeling good that this was the right choice for our baby girl.   After a restless night of sleep, it was time to head to the hospital campus. 

The size of the entire hospital campus was quite intimidating, the size of the children's wing is as big as the hospitals back home! It was a very long, emotional day to say the least.  Our first appointment began around 8am and our last one was around 2pm and I remember leaving the grounds around 5pm to take the long drive back to Indy. 
We met so many wonderful people, nurses, and doctors that day. We started out having a fetal echocardiogram done and then meeting with Dr. Fifer, a pediatric cardiologist to go over the findings of the echo, which I will go into later on.  We then had an appointment with high risk OB and then we met with a genetics counselor and had another ultrasound study done to look at the growth and progress of our baby.  We met another high risk OB doctor in this appointment. Unfortunately we were unable to meet with the surgeon on this visit. 
We were given a couple tours of the children's hospital, and got to see the areas that would be pertaining to us and our baby.  This wasn't the easiest part of our tour either. It was hard to see the innocent babies and children in their beds hooked up to so many wires and machines.  It certainly is going to be difficult to see our OWN baby laying there in that very same condition. 

Here She Is!

So, what all did we find out and learn during our visit? 
By now I am 24 weeks along which made it a" little easier" to see specific structures of the heart and the rest of the body.  Not that the baby was cooperating very well, but at least they could see a little more.
We learned that our baby does indeed have HLHS and that they did see a little tiny bit of a left ventricle, which was hard to detect during our initial findings when I was 18 weeks along. They also found that it actually was the aorta that was smaller in size and the pulmonary artery was of normal size, this is more common in HLHS babies (during the initial findings they thought that it was the other way around).  BUT, they did confirm that both the aorta and pulmonary artery were coming out from the right ventricle.  This is also called Double Outlet Right Ventricle (DORV). She also has an atrial septal defect (ASD).  She will still need to have the 3 separate heart surgeries: The Norwood, The Hemi-Fontan and the Fontan to make her heart work as efficiently as possible.  It doesn't "fix" the heart to make it work and look like a normal heart, but it will enable the right ventricle do all the work of what normally would be done by two ventricles.  Below is one link to a great series of videos we found on our research on HLHS from The Children's Hospital of Philadelphia (CHOP)
What else did we learn this day? We found out during our last appointment of the day, after the ultrasound, that they noticed that the ventricles in her brain were "large".  Now, they put it on a scale of 1mm to 10mm, with 10mm being on the high end of "normal".  Our baby girl's was measuring at a 10. Now this is another issue they are going to keep a close eye on throughout the rest of my pregnancy.  What does it mean? Well, it basically boils down to cognitive development of our baby. 
Overall, the first visit went well and we were glad to finally see the place that we will be calling "home" for a while once we have our baby.  Unfortunately, we learned about things we weren't prepared to hear making the trip home somewhat quite.
We did make an appointment for a return visit to Michigan for Aug 9th and we went ahead and scheduled a c-section for Oct 11, 2012.  (I am opting to have a c-section because my first baby was delivered via c-section and I just feel safer doing it this way).
The Wind in Our Sails
UGH! Yet one more thing to worry about! Her heart, wondering what the extra chromosome material results will be, wondering if other organs in her body are affected, and now this issue with the ventricles! Needless to say, the wind was taken from our sails once again, our hearts seem go grow heavier and heavier with each doctor visit we have. We must stay positive, but that is proving to be quite difficult to do! 
Giving Us a Signal!!

Sunday, September 9, 2012


June 1 2012
After a lot of consideration we decided to go to University of Michigan's Mott's Children's Hospital in Ann Arbor. We called and talked to a wonderful nurse practitioner for the pediatric cardiology area of  Mott's Children's Hospital.  She spent well over an hour on the phone with Adam and I, writing down our information and answering all our questions.  We told her we weren't really sure where to even begin and what steps to take next after receiving such news.  We just knew we would like to tour the hospital to see what they had to offer us. She was MORE than helpful! We set up an appointment for the 28th of June.
June 12 2012
We received a call from the genetic counselor informing us that there was "extra material" on chromosome 8 and they needed permission to go on with further research.  She explained that it could be "junk material" or it could be one of the reasons causing our baby's CHD, or it could be something "else" that they just can't see yet without further research and results could take up to a week.  We agreed to let them go on with the research. 
Curiosity got the best of me and I began to research what this all could mean... I should NOT have done that.  It left me feeling even more helpless and depressed.  Just after getting news that the amniotic fluid showed "nothing" was wrong they call back with this news, it was just another set back for us.  Leaving us with MORE uncertainty and unknown answers to our questions we were feeling hopeless and lost once again. Our hearts are heavy!

Life feels like a blur!

The Day After
May 23, 2012
I am not quite sure if Adam and I really slept much the night after we got the news about our baby's heart condition. One thing we knew for sure was that we had to at least share the news with each of our parents and rely on them to pass the news along to the rest of the family.   We ended up skyping our parents to share the news that we were going to have another girl as well as informing them of her congenital heart defect (CHD).  We did the best we could to explain what HLHS was and what was in store for us.  We explained that we needed to deliver at a level 3 (tertiary) hospital because they were more equipped for babies like this but if I did deliver in Evansville that they would take the necessary precautions to stabilize her and send her to the hospital we've chosen to care for her.   
It was very hard for our parents to hear the news and it was hard to tell them.  Very emotional and still difficult to digest. Understanding how difficult it was for us to talk about, they agreed to spread the news on to family and close friends.  We also were not prepared for the "whole" world to know yet, so we asked that nothing be posted on public web-sites like facebook.  We just asked that we put into everyone's prayers.  We believe in the power of prayer, miracles and hope.

So curiosity naturally took over and we began our research on what HLHS is and researched tons of hospitals that had experience in caring for babies with CHD and HLHS. Bombarded with stories, blogs and videos of parents and their children with HLHS it became more evident how serious this condition was and how fragile many of these babies are.  There are stories of success, survival, as well as, stories of babies didn't have such a happy ending.  These "Heart Angels" couldn't sustain and overcome some of the complications that can occur with this CHD.   It was hard to see it all and to see the photos and videos of the babies after their surgeries, knowing this is what we are going to be facing before we knew it! 
Mind-boggling, overwhelming, stressful, depressing, scary, the uncertainty... are just a few of the emotions we were going through and feeling ~ and still are today. 

As a mother of a beautiful baby girl, I know I can rock her to soothe her when she's upset, give her tylenol when she's in pain or sick, kiss her to "make it all better" ~ and then to look down at my belly knowing there is NOTHING I can do to make this better, to sooth it, to make it go away leaves me feeling helpless and and very sad.  This is something I never, ever imagined I would be going through.   
The emotions, feelings and thoughts that go through my head on a daily basis are consuming!  All I or my husband can do is to take one day at a time. We know we have a long road ahead of us and all we can do is prepare as best as we can and to "prepare for the worse and hope for the best".   
We knew we were going to do our best to give our baby girl the best fighting chance she can get.  So, we had to decide where we are going to deliver our baby and let the professionals take her from there. It would be one of the most important choices we would have to make knowing that it would become a "second" home to us for the next couple of years. 

May 29 2012
As Dr. Kumbar anticipated, we made another appointment to meet with her.  She went over the fetal echocardiogram results with us again as well as the surgeries that our baby would be undergoing, the treatment plans, the interventions that may be needed after delivery, and answered any questions we had. 
Once again, she explained that it was very hard to see the structures of the heart but it appeared that the the pulmonary artery appears to be small, the aorta appears of normal size and is not stenotic (constricted or narrowed) and that the aorta and pulmonary artery appear to be coming out from the same ventricle, most likely the right and that the left ventricle never developed or it is so small that it is hard to visualize. It also appeared that the aorta and pulmonary artery were "flip-flopped" meaning that the aorta appeared to be in front of the pulmonary artery and in a normal heart it's the other way around.  She also told us that sometimes other conditions may arise with organs such as the spleen or liver but they are unable to see those organs as of now.   She said as we have more fetal echocardiograms it will be easier to achieve a more accurate study of all these structures. 
This time, it was still hard to hear about our baby's CHD, but I believe we could actually HEAR what she was saying without the mind numbing feelings we had the first time around.  We still felt like there were so many "unknowns" to be considered and that this wasn't a straightforward case of HLHS.

We can't say enough good things about Dr. Kumbar, she is a great doctor and very thorough and very patient with us.  We felt as if she had nothing else to do on the first day we met her, as well as this second visit with her. 

May 30 2012
We were in the area and decided to stop by to see if our results from the amniocentesis had come back.  The counselor informed us that the preliminary results show everything came back clear.  That was huge news for us and for our baby girl! 

Where to begin?

It's taken me a long time to find the strength to even being a blog about our daughter.
I want to take you all back in time to where it all began nearly 16 weeks ago!

I found out before Valentines Day that I was pregnant and decided to hand make a Valentine's card for my husband to share the great news with him that way.  Needless to say, he was so surprised and very excited to be adding another baby to our family.  We shared the news with the rest of the family and we took a photo of our first daughter, Chloe, holding up a book saying "I'm a Big Sister"
We were anxious about finding out the sex of this baby and I thought for sure it was going to be a boy because of how different this pregnancy was compared to my first one with my daughter.

May 22, 2012 
Today we find out if it's a boy or girl!!
First off let me say that our ultrasounds were done and are still done with a Maternal-Fetal Medicine & Genetics Center being referred there because of me being "high risk" mainly because of my age.  (Ha Ha Ha! I just find that funny)

I was just a few days over of being 18 weeks along when we had our ultrasound and found out we were going to have another baby girl!
It's a Girl! (18 weeks)
Our excitement about hearing we were having another baby girl was soon transformed into what seemed like a dream that I nor my husband, Adam, could wake up from. I knew in my gut that something wasn't right because the ultrasound seemed to be taking a lot longer than what it should have.  Once we were done there, we were escorted into a meeting room to wait for a doctor to review the ultrasound with us. After what seemed like an eternity of waiting and trying to entertain our 18 month old daughter the doctor came in and sat down.  She reviewed everything with us, telling us our baby girl was growing just fine and things looks normal BUT they saw an issue with her heart.
I believe her words were, "Your baby has a very serious and complex congenital heart defect" and it is what we call Hypoplastic Left Heart Syndrome also known as HLHS.  Being that I was only 18 weeks along, it was very hard for them to tell in great detail every aspect of what all was wrong with her heart but they knew for certain that she hadn't developed the left ventricle of her heart. After the doctor explained that our baby would need a series of  surgeries to survive, the emotions began to surface.  I think we were both in such shock and disbelief of the news that was just given to us. The doctor explained that we had a choice to have an amniocentesis done to test for downs syndrome, fragile X syndrome, and trisomies 13 and 18 and based on the findings of these test would give us further indication on if our baby could and would be able to have open heart surgery.  I guess under certain circumstances, if a baby has a severe enough chromosomal abnormality,  heart surgery would not sustain their life. Well of course immediately we agreed to have the amniocentesis preformed, which we had done the same day.

Here is what a typical Hypoplastic Left heart looks like compared to a normal heart. 

We were also told that we would need to make an appointment with the pediatric cardiologist office to have have a fetal echocardiogram done and to meet with Dr. Kumbar.  The office called for us this same day to see if we could be fit in which we were so thankful that they actually could squeeze us in.  After a quick bite to eat we went to get the fetal echo done and to meet with Dr. Kumbar.  The fetal echo took about 2 hours because it was so hard for the technician to get the views she needed because I was only 18 weeks along.  Soon we were sitting and waiting yet again in another clinical room trying to keep Chloe quite and entertained as best we could. Dr. Kumbar came in and began to go over what she saw from the ultrasound and from the echocardiogram that we just had done. Still in a fog over all the information we received thus far ... we were about to enter info overload with what Dr. Kumbar was going to tell us ~ she even "warned" us that we were about to hear a lot of information and to stop her at any point to just take breather and/or ask questions.

It really is all a blur to me even now, sitting here trying to recall the events of the day. A few things do stick out in my mind though so I guess I will share what I do recall.   I was extremely impressed with how patient Dr. Kumbar was with us and how she took her time to explain everything.  Drawing out photos of what a normal heart looks like and what they were seeing with our baby girl's heart. Stopping each time to let our tears flow and give a moment to gather ourselves and to soothe Chloe (who finally fell asleep on Daddy's shoulder) before she continued. She explained that the baby will have a series of 3 separate heart surgeries to get the heart to work more efficiently, but made sure we understood it wouldn't make the heart normal... like what a "normal" heart should look like and function like.  The first surgery would take place within the first few days of life, the second would take place around 6 months of age and the third being around 18 months - 2 years of age. Without these surgeries, it IS a fatal congenital heart defect (CHD).
She kindly asked us if we had any questions as she went along... I think we were still in such shock we naturally didn't have a lot of questions at the time. We were merely just trying to absorb all the information from the entire day.  She reiterated the fact that our baby has a very complex heart condition and she fully expects us to take a few days to absorb this information, research it on our own and we could call back at anytime to make another appointment to discuss it more.  After spending OVER an hour with us, our day at the doctors offices was finally over. I believe our day began in the offices around 8:30am and we were leaving to go home sometime around 4:30 or 5:00.

I can remember walking hand in hand with Chloe as Adam walked in front of us with the stroller and diaper bag.  Two ladies passed us and commented on how adorable Chloe was and they were in aww over her thick curly hair.  For some reason, at that  moment after they walked away ... I fell apart ... right there on the sidewalk.  I remember Adam coming back, putting Chloe into the stroller and just holding me as I sobbed.

After arriving home, neither Adam or I could do much of anything other than stare into "space" and feel the occasional tear run down our face. We didn't call ANYONE or answer our phones, knowing that the family knew we were going to have our ultrasound done to see what we were having, I am sure they all wondered what was going on.

Feeling numb and like we were living in a dream ... we had to keep going on as normal as we could for Chloe ...  and then it was bedtime.