Our little princess

So, I have decided to start blogging about what has been happening with our little miss.  This way, those that are interested can keep up to date.  This first post is going to be everything that has happened up until this point.  I will trying and post an update each week after my weekly doctor’s appointment.

January 10^th

Everything was normal (no indication of anything wrong) until my 20 week appointment.  I went in on January 10 for a routine ultrasound.  I was so anxious and excited because this is the appointment where we find out the gender.  I was so ecstatic to hear it was a baby girl!  This news was followed closely by “well I see some fluid around her heart that concerns me a bit.  It could mean nothing, or it could be something.  I want to send you to a specialist and have him take a closer look at it.”  I asked what it could mean and the doctor wouldn’t give us any idea.  He said it could be such a myriad of things and didn’t give us any more information.  I was still hopeful that this was just a mistake and that our little princess was going to be perfectly healthy.  

January 18^th

I had an appointment with the perinatologist on January 18.  I went in extremely nervous, not quite sure what to expect.  The doctor hadn’t given me any clue what I should expect, so I went in thinking it was probably going to be some kind of birth defect.  I had prepared myself for this news and was ready to hear that from the doctor.  

I was in the ultrasound room with the tech and I immediately knew something was off when the doctor himself came into the room halfway through the ultrasound.  The two started talking all kinds of medical jargon as I lay there feeling helpless.  I couldn’t understand all the terminology, but I was able to tell something major was wrong.  I fought back the tears as best I could.  The doctor looked at me and asked “you doing ok?” I wanted to shout “DO I LOOK LIKE I’M DOING OK?”, instead I calmly said “yes, just nervous”.  They finished up the ultrasound and asked that I meet the doctor in his office to talk.  I pulled myself together, put on a brave-ish face and sat down across from the doctor.  

With very little hesitation or bedside manner, the doctor said that there was in fact something wrong with her heart.  He sees a horseshoe of fluid along the bottom of her heart.  Her left ventricles are also dilated and not pumping and contracting like they should.  This could be one of two reasons; either it’s viral, which she will recover from; or it’s structural which chances are she won’t make it to delivery.  He said it looks like it could be cardiomyopathy, which basically means she will live until her heart gives out.  With cardiomyopathy there is no cure.  He also informed me that my cervix appears to be funneling.  (More on this later) Let me remind you we were planning on leaving for our cruise the very next day.  The doctor told me he was willing to write me a “medical emergency letter” for us to get refunded for our cruise if we didn’t feel like going.  His advice to me though was, live your lives as normally as you can, control what you can control, go have fun and try not to think about this (ya right).  I decided I would discuss it with Ethan and we would make the decision that night.  

I left the doctor’s office streaming tears feeling like there was no hope.  We needed a serious miracle and at this point I felt like I needed to come to terms with the fact that we were going to lose our baby girl before she was even born.  I received words of encouragement from several friends and family members, but I still cried the rest of the day.  I tried to put on a brave face, but let’s be honest, I was falling apart.  Ethan pretty much left the decision up to me about whether or not we would go on the cruise.  I told him I need to get away; I don’t want to think about this anymore.  I felt I needed the time with my little family to rejuvenate and come to terms with what was happening.  I needed this vacation so desperately at this point to just be together, away from work, stress, and responsibilities.  So, we went.  

January 26^th

The cruise was quite the adventure. I got bronchitis our very first day, they changed our ports the day before we got on the boat, and the weather (because of the port changes) was not as warm as we had planned.  It was about 15 degrees cooler than the other ports we had planned on visiting.  Even though our cruise wasn’t everything we hoped it would be, we had fun as a family and came home feeling like we could handle anything that might happen with our little princess. 

January 28^th

After arriving home from the cruise I had a follow up appointment with the perinatologist, Dr. Wheeler, on January 28^th to see if anything had changed.  He started the ultrasound by saying it doesn’t appear to be viral because it is still dilated.  Her heart is now occupying a little more than 50% of her chest.  So the fact that it isn’t viral means that there is something structurally wrong (which in my first appointment he said she wouldn’t survive).  But on a positive note there does appear to be less fluid than there was before the cruise.  

Right now she is too little and too young to fix.  We cannot do anything about it right now, surgery wise.  He said as she continues to grow it is going to put more and more strain on her heart, but as of right now she is doing well.  At this point if we can make it to delivery; if her heart can keep up with the demands of her growing body, then they can operate.  I left this appointment feeling lighter than I had in weeks.  I felt new hope and I felt like we could do this.  It wasn’t the best news in the world, but it sure felt like it at this point.  We had HOPE again.  The doctor said he wanted to send me to a person “smarter than him” so they could have a look at the baby.  We scheduled a fetal echocardiogram for February 13^th.  

At this point we decided we needed to call in the big guns and began arranging a family fast.  My mother-in-law sent out this email to help get the word out about the fast: 

“I have a special request for my family and friends! For those of you who remember my son, Ethan Bennett, we're asking for a little help on his family's behalf.  Ethan's wife, Kelli, is pregnant with their second child, a girl.  She's due in May but we're asking you to add Kelli and especially the baby to your fast this upcoming Sunday.  The baby is having heart complications and may not make it to delivery.  We ask that you pray for her to grow healthy and strong.  We need her heart to withstand the upcoming strain that her growing body will cause.  As of now, the baby is too young to fix but if she can make it to delivery, they can operate.  We want this little girl in our family on Earth and are praying for her daily.  We just ask that you add her to your prayers and include them both in your fast on February 3rd.  Thanks for all you do!”  

Not only did we have family members fasting with us, but we had so many more.  We had many members in our ward family, several, if not all, of those that received this email from Tina, numerous members of the first Baptist church in Alabama (who heard about it through one of their members that received the email), and many more friends.  We felt so much love from all directions; we truly appreciate everyone’s support.

February 11

I met with Dr. Wheeler again today.  The fluid around her heart is now almost completely gone which is great news!  Fluid around the heart means they are basically waiting for heart failure and cannot do anything about it.  Her heart is still dilated and the left ventricle is still not contracting. 

I am now getting weekly progesterone shots to prevent preterm labor because my cervix is "funneling". (Basically my body is preparing for delivery way too early).  This may result in me being put on bed rest soon.  

In order for us to have a fighting chance for surgery to work she needs to make it to 5 lbs. before I deliver (she is currently 2 lbs.).  The doctor said in March he may start me on medication to mature the baby's lungs just in case I do have her early. 

The doctor admitted to me that he honestly did not expect me to get to this point at all and was surprised that she continues to get better week after week.  He said not to get my hopes up, we still have a long ways to go, but to keep doing what I am doing because its magic and it is working. 

The doctor’s words to me while looking (surprisingly) at my ultrasounds were "Kelli, it’s not a cure but she is getting better!"

February 13

I went in for my fetal echocardiogram today.  It was basically a 45 minute ultrasound.  They told me nothing at the end of it, just to call my doctor for the results.  Which I did, and the doctor said we would just talk about it Monday at my next appointment unless they saw something majorly wrong. 

February 18^th

Nothing new to report, she is still hanging in there.   

February 25^th

Ultrasound went well today. No fluid around the heart!  Dr. Wheeler said he wants to hold off for a little while on doing the medicine to mature the lungs because it only lasts a week and it's looking like I'll be pregnant for a while. 

He said the left ventricle must be doing something because there is no signs heart failure; it's still not contracting like it should, but might not be as bad as we thought. 

My cervix is holding up nicely, still getting weekly progesterone shots though. 

The doctor says he's like a weatherman he can't predict the weather but he can tell us what's going on. I see him so frequently (every Monday) we will make future decisions (like when to deliver and whether or not to do lung maturation medicine) on a dime. I was given permission to go to the gym and do some light exercise. 

I did get a belly brace today, so hopefully it will help with the constant back pain.

Dr. Wheeler also asked if I am feeling more and more confident each week as our little girl keeps getting better.  He said his goal right now was to keep me pregnant for the next two months and just keep doing what I'm doing because it’s working. 

We feel so blessed to have all the love and support of our family and friends.  This has been a difficult time for us and a real trial of our faith.  We know the Lord has blessed us in more ways than we can count.  We know it is because of Him that our little princess has made it this far.  We know we can get through this as long as we put our faith in the Lord.  We will take this day by day and remember it’s in the Lords hands.  Come What May!