Half the Heart, Twice the Fight: 27 Weeks, 6 Days

Thursday, we had our second appointment at Mott's. We dropped Carsyn off at a family friends house, her first time being baby sat at someone else's house with someone new. She did great! Didn't cry once, and made a new doggy friend!

First stop, we had a fetal echo, and met with the second cardiologist. She sat down and gave us some more details about fetal intervention and explained the risks again, all of which we understood, but they had to be said by her again. There were some things we did find out about Kennedy's heart that we didn't know before.

The anatomy of Kennedy's heart isn't normal, as we already know, but there is more about the anatomy that is different, but it doesn't change her health. In a normal heart, there are typically 4 pulmonary veins that empty into the left atrium (upper chamber) from the lungs, and from there the blood would typically go into the left ventricle to the aorta to be pumped to the body. In Kennedy's heart, the 2 veins on the right side actually wrap around her heart, connect with the 2 veins on the left side to make one big vein that empties into the atrium. Because of the way those veins lead to her left atrium, the only way they can do intervention is if they enter through the right side of her heart, go through the right atrium and into the septum to place a stent and make the right and left atriums flow together. This adds a little challenge to the intervention, because instead of them being able to enter either side of the heart, they can only enter from the right side. She has to be laying perfect with her right side up in order for them to be able to access her septum. Her heart is also missing the mitral valve on the left side, which is the cause of the hypoplastic left heart.

Normal Heart Anatomy (showing the pulmonary veins on the left and right sides)

We asked the cardiologists many questions about the intervention and the way they would go about doing it. She explained to us all the people that would be in the operating room at once:

Two high risk OB's
Two cardiologists
Two pediatric cardiologists
Two anesthesiologists
Our nurse practitioner
Our neonatal/perinatal specialist
And that's all I know for sure, but I'm sure there are more.

Each person in the operating room have their own jobs. The OB's are the hands in the procedure, directing the needle into the heart. There are two people running the sonogram and directing the OB's where the needle needs to go. Another person will "wire" the needle with the stent and balloon, one will push the button to inflate the balloon, one will record the numbers, and so on and so forth. Their fetal intervention team is the team that does all interventions at Mott, and they all were very confident in each other and the way they work together as a team. That was the one thing I heard that really made my decision from the facts standpoint. I've been a part of many teams in my life, and if you can rely and count on your team members, you typically are much more successful. Every other part of the decision has been based off the gut feeling I have that this is best. I know God has his hand guiding us in every way.

The process of fetal intervention could last for hours. Once I am prepped and taken to the OR, they will check to see where Kennedy is laying. If she isn't laying in the right position I will have to move around somehow to try and get her to lay perfect. I won't get an epidural until she is laying in the right position. Blaine isn't permitted into the operating room, so he will have to wait, which could be 6+ hours. Once she is in the right position, I will get my epidural and they will give her a shot to make her stop moving and temporarily paralyze her. I will be awake the entire time, unless I need something to sedate me to help me relax a little bit. After they are done, they will monitor her for about 20-30 minutes, which is the most critical time period, and watch for bleeding and other problems. Once my epidural wears off we will be free to go home. I won't be able to pick Carsyn up, or do any lifting that really uses my abdominals for a week. Although everything is so scary, I know God has placed us with these amazing doctors for a reason. I also keep telling Kennedy she is already such a strong little girl, and she can do anything. I truly do believe that.

After meeting with the cardiologist, we took a tour of the 3 floors we will staying on: the pediatric general care on the cardio floor, the maternity floor, and the Pediatric Cardiothoracic Unit (PCTU). We had another quick body ultrasound to see how she is growing (not that 2 weeks really makes much of a difference.) At that point, she was laying in the most perfect position for fetal intervention. We met with the OB and she explained her position of the intervention. She deals with the intervention things the most, then once the baby is born the cardiologists take over from there. I asked her if we should get an amniocentesis since they will be in there during intervention. I wanted her opinion because I wasn't sure if it would help at all in the long run. She said she had discussed with her team, and they all agreed that at this point and everything they have seen, they will do anything they can to help Kennedy. When you feel like it's the world at your back and you can only control so much anymore, it's a huge sigh of relief and an uplifting feeling knowing there are a handful of doctors that have committed themselves to do the best they can to save your child. There have been no major red flags of other disorders or anything to make them hesitant. Maybe once she is born, we will have some genetic testing just to try and help the research side of it and hope they can connect these heart defects with anything. As a family, we can fight for our own, but we can also try to help the next family, which was and still is us. Not only do we feel fetal intervention can really help Kennedy, if it is unsuccessful, we are praying our doctors can learn from our experience and better their procedures to help the next family. Their main goal is to try and give her sometime once she is born and to hope her lungs can develop a little more normal throughout the rest of her stay in my belly. We pray this will work and go at ease with everyone involved.

Fetal cardiac intervention is scheduled for Tuesday, February 24. Please say a prayer for us, especially to Kennedy to continue to fight, and all the doctors and hands involved.

We have another regular scheduled check up here in Lansing with the specialist, and another ultrasound on Monday, February 9. I have my gestational diabetes test then also...yuck. I love seeing our little girl so often, but I hate the nervousness that someone will see something else wrong.

February 7-14 This week is Congenital Heart Defects (CHD) Awareness Week! Please say a prayer for all families fighting CHDs, and if you find it in your heart to donate to any foundation/family with a CHD!

Join the Fight with Kennedy

"Every little bit makes a difference."

Also, I am challenging everyone who reads this to take a picture of your hand heart and post it in the comments of the blog AND on Facebook! We want to see everyones hand hearts! THEN challenge and tag 3 friends to do the same! Please help spread awareness!!!