Our Little Princess: THE BIG UPDATE

April 24

We had our first doctors appointment in Indianapolis today.  What an overload of information, but we finally got our questions answered.

We were at the hospital today for 5 hours (two of which were spent doing ultrasounds), met with 3 different offices, and toured both labor and delivery and the NICU.  Thank you Stephanie for taking Jack so we were able to go do this today with the least amount of distractions. 

We first met with the Jackie Maiers, a pediatric cardiologist, and got my THIRD fetal echo cardiogram.  We were a little confused as to why they couldn't just ask for the results from the previous exams.  Turns out, they don't have the "rights" to those pictures because they were done at a different facility.  When I walked in to the exam room the nurse asked me "why are you here?  What is wrong with the baby?"  I was a bit concerned that they didn't know why I was there, I tried to explain everything I knew and had been told by Dr. Ghazali from my previous echo.  I didn't have much confidence that this appointment was going to be beneficial or answer any unknown questions, especially because they didn't know why I was there.

Dr. Maiers entered the room and began the echo, about 30 minutes into the echo I realized that Dr. Maiers would be the one who would be reading the echo.  With my previous echo cardiograms I had a technician do the fetal echo and then have to wait for the results to be read by the pediatric cardiologist.  It was so nice to have the actual pediatric cardiologist perform the echo because she was able to give us the information right then and there.  My confidence immediately returned once she started explaining things to us.  She was so amazing and kind.  She did it in such a way that we didn't feel belittled, but we were able to understand what was going to be done.  She even drew us a diagram.  This is what we discussed:

Our baby has what is called hypoplastic left heart syndrome (HLHS), which is a rare congenital heart defect in which the left ventricle of the heart is severely underdeveloped.  In our baby, the mitral valve doesn't work properly.  The mitral valve is the valve that regulates the blood flow from the top to the bottom ventricle to allow sufficient blood flow.  The doctor says "no flow, no grow".  Because her left ventricle hasn't been able to receive the proper amount of blood flow it hasn't developed properly.  It is like a muscle that hasn't been used, it grows weaker over time.  This means the left ventricle is not repairable.  I had originally thought the surgery would be to fix the left side of her heart, but this is not the case.  The left ventricle is now useless. 


Within the first two weeks of her life she will undergo major bypass open heart surgery where they will reroute blood flow away from the left ventricle into the right, which will then perform the duties of both sides of the heart.  However, this isn't a long term fix.  She will undergo a second surgery at 8 months old and a third surgery before she is 3.  We have been given all the details on the first surgery, however it is too hard to explain.  It is called the Norwood Procedure, feel free to do some research if you would like.  Here is one link we have found that includes a helpful diagram of what they will do http://www.chw.org/display/PPF/DocID/21364/router.asp.  Riley Hospital has a 85% success rate with this surgery which is higher than many of the other hospitals in the country.  The doctor indicated that she was confident that our baby would survive the first surgery.  This is a "rare" condition, however they see about 10 of these cases a year. 

So, our expected timeline has changed a little bit.  It looks like they wont do surgery within the first day or so, they will wait until she is about 2 weeks old.  During this time she will be in the NICU.  After surgery they will transfer her to the PICU (pediatric intensive care unit) where she will recover.  She will be in the PICU for roughly 2 more weeks, depending on how well she is doing. 

Ethan and I will undergo extensive training so that once we bring her home we will be prepared to care for her.  They will send us home with all kinds of equipment to help us monitor and check her vitals on a regular basis.  She will still be EXTREMELY fragile and wont be able to tolerate any stress (such as crying).

So, after my fetal echo they sent me to the OB/GYNs office to meet with the person who would deliver little miss.  Once arriving here they wanted to do a routine ultrasound just to measure where she was.  The ultrasound technician got a good chuckle out of how active baby was today and how flexible she is.  Most of the time she had her hands AND feet up in front of her face and wouldn't stop wiggling.  The tech had a "fun" time chasing her around.  Baby is weighing in at 5 lbs 10 oz, and is right on track.  Keep up the good work little one!

We then met with Renata A. Sawyer, the OB/GYN that will deliver our baby.  She was very nice and answered all of our questions about delivery!!  After talking to her for a while she mentioned that a VBAC would be a possibility and was encouraging us to consider this as an option.  However, after talking to her more in depth about my delivery with Jack and the difficulties I had, she said "we will HAVE to do a c-section".  Which, by the way, is FINALLY scheduled!!!!!!!!!!!!!!  May 20th at noon. 

If I do go into labor before the 20th Dr. Sawyer said to get to the nearest hospital and tell them that this baby HAS to be delivered at Indiana University and they will life flight me to IU so I can deliver in Indy.  **Clarification** I will deliver at IU and baby will then go to Riley Children's Hospital, which is connected to IU. 

Next we had a consultation with a neonatologist and a NICU nurse.  A neonatologist is a doctor who cares for infants in the NICU.  They were able to explain how everything was going to work with little miss after delivery up until the time she has surgery.   I was also able to get all my little questions answered about what to expect once she is in the NICU.

We then went on a "short" hour long tour of the NICU and labor and delivery.  It was nice to kind of get my barrings and to see all the services they do provide to make this stay as easy as possible.  

So after today many of you have asked how we are feeling, the honest answer is absolutely terrified.  It was great to finally get all the information we needed, but today finally brought into focus the enormous task we have ahead of us.  We have faith that everything will work out how it is suppose to, but unfortunately only those who have experienced something similar can truly understand the emotions we are feeling.  We are putting our trust in the Lords hands and would appreciate your continued prayers and support.