Sunday, September 9, 2012

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.

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