My Angel is 3 Months Old!

Dec. 22, 2012

Three months today I had to "physically" let get go of my Isabelle.
She will forever and always remain in my heart. My arms feel empty and I still feel a bit lost.  The pain is still very raw. Everything about my body is telling me that I should have a baby in my arms, even my mind tries to tell me this - but the reality of it all tells me something totally different.
Looking out the window the other day watching the leaves swirl around aimlessly reminded me of how I felt - like those leaves.

This is not going to be a "easy" Christmas for me.  I am grateful for Chloe and my loving husband Adam - I am not sure how I would be without them.
This will be my baby's first Christmas in heaven! 

Setting up a Christmas tree this year wasn't something I WANTED to do, but knew I had to for my daughter, Chloe.  She needed to have that AWW moment when she got to see a Christmas tree all lit up.  I decided to set it up while she was napping that way it was REALLY a surprise for her when she woke up - and it was! I am glad now, that my husband drug it out of storage and that I set it up; Chloe just loves to look at it, touch it and tell me what colors she sees.  She brings the JOY of Christmas to me.

 

In my next few posts I will be "backing up" to the day we found out Isabelle had to be delivered.... to catch up so it, my story, our journey will make more sense. It, again, may take me some time but THANK you all for your patience, understanding and for following my blog! 
MERRY CHRISTMAS TO YOU ALL!  

Patience 

Thank you to all who have taken the time to read and who have followed my blog.  

My up-coming entries aren't going to be easy and will take me time to write.

I thank you for your patience and hope you check back often.

September 13, 2012

Final Check-Ups at Mott's

Our last trip to Michigan, Sept 13th, and our nerves are high!  Will they decide to keep me and monitor Isabelle or deliver her? If we deliver now, will her lungs be mature enough? Will we be sent back home? Is her heart rate and rhythm ok? Did I pack the right clothes for us all in case we have to stay? Did I pack what I needed and wanted for Izzy too? What's going to happen?
These are just a FEW of the tons of questions running through my mind along with the ton running through my husbands mind I am sure! 

Kisses for Isabelle

My mother-in-law, Margaret, took the trip with us this time.  She got to see this massive hospital for herself.  She was very impressed how each department we went to all treated us with great respect and patience.  We NEVER felt rushed...  WE were their only concern the whole time we were there.  She KNEW we had chosen the right place for our Isabelle!
Chloe was glad to have a companion in the back seat with her too, it can be a very long 4 1/2 hour car ride for a one year old! 

Our day started out with meeting the high risk OB doctors with my routine health check up.  Then off to have our fetal diagnostic/ultrasound done.  Izzy is growing quite well... this time she measured at about 5 lbs and some ounces (I can't remember exactly).  I was shocked to hear that she was actually 5 pounds! At 35 weeks she's nearly as big as Chloe was when I had her (and she was a day late!)  Isabelle must have known she was needing to "bulk up" for her big debut... she knew something we didn't evidently! This ultrasound caught me off guard, the tears began to flow like a water fountain.  I think all the various emotions were just weighing on me and I couldn't hold it in any longer.  Once again, the ultrasound tech was very kind, consoling and compassionate with me. Everything was looking good on the ultrasound and so it was off to the last appointment of the day to have the echocardiogram done of Izzy's heart. THIS is where we would more than likely be told if they are or are not keeping me.  (GULP)

Mark, I believe was the name of the echocardiogram technician ~ he had been with us for each appointment and he was a kind & familiar face to see.  These echo's take about an hour, so after a while Margaret took Chloe out for a walk and entertain her, poor girl was tired and probably sick of watching Bubble Guppies at this point! The other person who helped us out a lot was also there, Alicia Valentini, RN, MS, CPNP.  She was always calming and would answer any questions we had or would find the answer to any question if she didn't know herself.  She knew of our anxiety about wondering if we were going to have to stay or not.  Once Mike was done with his scan he would leave to inform the doctor and given them his results.  Alicia came back in before the doctor and wanted to ease our minds.  She said she believed upon what she heard that things looked good!! Dr. Van der Velde came in to perform her own scan and then told us that same thing.  "Things look good" ~ well good for Izzy's heart that is.  It appeared like her heart rate was decent and that the rhythm was looking a little better on this day than it had even during our last echo in Evansville.  But there's still signs of the rhythm being irregular, but there were no indications that I would need to stay to be monitored there or to have Izzy delivered early.  We, "...should be good to go home..." was a welcome but also scary relief. Welcome in the sense that I knew my baby could grow a little more and get stronger inside me before she had to face everything coming her way; but scary because we were afraid we would make the trip back home, continue on with our routine weekly echos and BPP studies just to be told her heart rhythm was worse and we needed to go back before our actual due date of Oct. 11th, which is only 4 weeks away.  We also did not want to have to deliver in Evansville.  This is just one of the reasons we picked Mott's ~ knowing Isabelle and I would only be separated by a couple of floors ~ not by blocks or miles. If anything happened, I would only be an elevator ride away.

We also got to meet with Barb Shaltis, the social worker we'd been talking with on the phone for the last few months.  She also played a huge roll in our lives during our trips to Michigan, helping us coordinate our overnight stays and helping us prepare for our long stay after Isabelle was born.  We got to talk with her about concerns we had or other questions we had regarding our stay and any family that was planning to stay to help us out.  We made plans to be put on the list to stay at the Ronald McDonald house. I asked her to help me have it set up so that when I had Isabelle, that we could have her baptized as soon as possible.  I explained I wanted it done before any surgery were to be preformed on her and later that day, I received a voicemail from one of the pastoral care coordinators! 

Getting the news we would be good to go home and that they would see me in 4 weeks settled the nerves just a little.  I called my mom as soon as I could get a signal on my cell phone to tell her the news.  She sighed in huge relief and then I heard her cry.  The tears were from so much anticipation and waiting for me to call ... to hear and learn what was going to happen.  I told her to call everyone else in the family to spread the news.

 This is one tuckered out tot! 

Adam & I

It is funny now, not so much at the time, but a funny thing happened to us on the way home.  We stopped at a McDonalds in Fort Wayne, IN to take a potty break, change a diaper,  and get something to drink for the rest of the ride home.  We all loaded back into the car and the key wouldn't turn in the ignition barrel.  Now, we had troubles with this in the past and eventually just left the spare key in the ignition without turning it all the way back to where the key would come out.  It seemed to work just fine.  Once in a while out of habit, we'd turn the key all the way back and take it out... then have to jiggle the key to get it to turn in the ignition.  It was one of those, we'll get around to fixing it ... soon.  Well that "soon" came sooner than we thought.  Out of habit, the key was taken out and we were stranded.  NOW.. of all times! You've got to be kidding me... WHAT ARE WE GOING TO DO NOW? After a LOT of debate, phone calls, people trying to help... we found we had no choice but for us to all get a hotel room for the night.  We would get the car towed to the nearest car dealership that night and hope they could get the car in ASAP the next morning so that we could be on our way home again.  Adam had to get back to work on Saturday, we HAD to get the car fixed!  That's what happened ... the dealership got our car in as fast at they could and replaced the ignition barrel.  Adam and I had to laugh when we got in the car, we were all excited about a shiny new ignition barrel... and then when we stopped to get out of the car we were afraid to take the key out!  We even took turns turning the key, feeling how smooth it turned... no more jiggling the key! HA HA HA HA!!! 

What an adventure... chalk it up to all the other ones! 
Back on the road again.... 

Doctor Visits!

Doctors, Doctors, Doctors.

It's been a LONG time since my last post, so I will do my best to recall from memory what all has transpired, but it will more than likely take place over several different posts. Thanks for your understanding and patience. 

Since our last visit to Mott's on Aug. 9th we had been to doctor appointments every week, sometimes twice in one week or twice in one day! It felt like that was all I was doing! 

I went every Thursday to the cardiologist to have Izzy's heart looked at to monitor her heart rhythm as suggested by Dr. Van der Velde.  So after our scan, we would meet with Dr. Kumbar and she would discuss the findings of the scan with us.  Each time we sat there waiting... it felt like an eternity, making us more anxious by the second.  We feared that she would walk in and tell us that we needed to go back to Michigan NOW to prepare for Izzy's delivery OR she would tell us we had to deliver in Evansville NOW.  

We were afraid that Izzy's heart rhythm on the bottom chamber was lower than 60-65 bpm but with each visit Dr. Kumbar would tell us that the rhythm was remaining pretty consistent and there showed no signs of fluid building up around her heart. AHHH... big sigh of relief!   

It was our last visit with Dr. Kumbar on Sept. 6th, that we felt more pressure.  Izzy's heart rate/rhythm was still like it was before but she said she wouldn't be surprised if, upon our next visit to Michigan on Sept. 13th, that they would just keep me there, monitor Izzy and if needed go ahead and deliver her.  So we might want to prepare for that accordingly. Dr. Kumbar was concerned enough to make her feel like I wouldn't make it to my due date. This is something Adam and I had talked about and were concerned about and discussed how we felt about it if Michigan actually did keep me.  I was concerned because if that were the case, I would only be 35 weeks along.  I worried about Isabelle's lungs being ready for that.

  

I was also going for another ultrasound appointment at my high risk OB doctor on the same day, Sept. 6th.  It was here I told them about this horrible itchy sensation I was having ALL OVER my body.  I never showed signs of a rash.  I told them it felt like I was wearing a full body suit made of wool and lotion was not helping... oh I was so miserable.  It got worse at night when I was going to bed, I felt like I was loosing my mind.  They ordered a blood test on me to check that my liver function and bile acids were what they needed to be.  Sometimes this condition known as Cholestasis can increase risk for fetal distress, preterm birth or stillbirth.  With this, Dr. Turnquest ordered that I come in once a week to have a Biophysical Profile (BPP) study done on Isabelle.  With this test, they monitor a baby's movement, baby's breathing and tone as well as the amniotic fluid volume.  Each gets evaluated within a 30 minute period during and ultrasound and scored. If you get a score of 8/8 then everything is normal.  Scores below 6 may indicate the baby is in distress and needs further intervention and possible delivery. 

I had my first BPP study done the following Monday (Sept. 10th).  Adam was a work, so I flew solo with Chloe.  Thank goodness for Daddy's iPod downloaded with Bubble Guppies... it kept Chloe entertained the whole time otherwise, that visit or any future "solo" visits could be quite ugly!  I was told that my blood results came back normal, which surprised me AND the ultrasound technician.  We both thought they would find something elevated causing my itching.... but this wasn't the case.  So it's a mystery why I was so itchy!  So I laid back for my ultrasound as they study Isabelle's movements and such.  ALL GOOD.. she was kicking and moving and breathing just fine and everything looks good! She passed her test, the technician said, with flying colors! THANK GOD... finally something GOOD from a doctor visit!

Now we prepare for our visit to Mott's for our last round of check-ups.  

The nerves are on high alert! 

Will they keep me or send me home? 

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.

Dr. Ohye profile link

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!! 

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) 

 Profile 

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)

CHOP Video Series on HLHS

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!!

Decisions

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.