Fetal Intervention

Disappointment is never easy. All the hope we get and things that have been laid in front of us don't always work out, and we know all things may not work, but you never expect it. It's always disappointing when it doesn't. As scared and nervous we were for this intervention, we had hope. Hope for Kennedy that this could be her life changer, but it wasn't. It obviously wasn't in God's plans for this to happen, and she even let us know that herself in a way.....

Kennedy 30 Weeks

Kennedy 30 Weeks

Yesterday, we had a busy day, so it thankfully went by decently fast. I took the dog to the vet because she has been itching and chewing herself badly. Ever since we found out Kennedy had a CHD, Izzy knew something was wrong. German shepherds have been known to be emotionally sensitive animals, and she has truly been showing that since the week of January 7. It's almost like all of our stress and anxiety is her stress and anxiety, which makes me feel awful because I know she is miserable in her itchiness to begin with. I then had some errands to run while I was out and since Blaine's parents came in on Sunday night I didn't have to drag Carsyn all around the frozen tundra. I don't get to do many things on my own, which I truly don't mind, but sometimes I just need some space to breathe even if it means doing things I don't necessarily want to be doing. Blaine got home right when we were hoping he would be home to head to Ann Arbor.

We finished packing our bags and seeing Carsyn for a few minutes before getting on the road. She stayed the night in Lansing with Blaine's parents and Izzy and ended up coming to the hospital in the morning. The drive went by fast, as fast as an hour drive can go with all the anticipation waiting to greet us the next day. I was pretty happy because I found out I passed my 3 hour Glucose test and I don't have gestational diabetes! The drive really started to make things feel real. We made it to the hospital in a timely manner and got my pre-op blood work done in literally 30 seconds. From there, we found our way to the hotel where my dad was already waiting for us. I've always been a 'big eater' especially the night before big events, not necessarily sporting events, but mostly when I know I have to fast for a period of time. We went to Red Lobster for dinner and I honestly don't think we could have ordered any more food than we had. After dinner, we went back to the hotel. At that point, I really didn't want to do much besides relax. I think all the running around from the day made me pretty tired, which I was VERY happy about. I actually fell asleep decently early, and even though I was up every so often, I still got about 6 hours of sleep. The last time I could drink any water was 2:30am. I woke up with a really dry mouth and looked at my watch. It was 2:07. I had half a bottle of water next to me, so I decided I was going to chug it while I had a few minutes before I was cut off.

I woke up around 5:00 for the day and got my shower with the required antibacterial scrub. We were planning on leaving at 6:00 for the hospital so we could get there and find which floor we had to be on, because I wasn't quite sure which one. Let's just say that it all didn't happen that way. I was completely flustered and extremely anxious before we even got out of the hotel. Once we finally made it to the hospital (with a few wrong turns here and there), we ended up on 3 different floors in the hospital and some of the people we asked didn't even know where we were supposed to be themselves! Right when we were supposed to be there (6:30), we made it to our destination. I had to change into the lovely hospital gown and put all my items away. Our nurse got my vitals and ran my iv, and also had the pleasure of giving me some "special medicine" to stop my uterus from contracting. Thankfully, I am not a shy person. They brought in an ultrasound machine and looked to see Kennedy's position and her weight so they could give her the proper dosage of medicine. Once everything was settled, and the doctors were all mostly arrived at the hospital, they transported me down to the surgical floor. Blaine was at least able to go down with me to meet the anesthesiologists.

Looking at her position and finding her weight.

The anesthesiologists came in and completed all their work. We were mostly prepared to get my epidural; the anesthesiologist was just about to open the epidural when the MFM doctor walked in and told him to wait to open it because she didn't want to have to give me an epidural if Kennedy wasn't positioned right. They brought in the ultrasound machine on the surgical floor and low and behold, she was not in position. We went on a 10 minute walk to try and get her to move, which she did, but not enough. Next, instead of walking, the doctor just had me roll to one side to see if she would move. Again, she moved, but the wrong direction this time. So I rolled to the other side for about 10 minutes. She was in a much better position then, but not necessarily ready for surgery. The doctor was having trouble seeing the septum and finding the angle she would have to take around all the other structures. The other MFM doctor came in and looked for himself and so did two cardiologists. They all left for a few minutes and came back in and told us, once again, heartbreaking news.

Walking the halls trying to get Kennedy to move.

Kennedy is growing great. She is a great weight and her heart is growing, except the left side of the heart including the left atrium, significantly. The problem they were discussing was the fact that the stent was too big for the area it was supposed to be placed. All the doctors had a few different concerns: 1. The stent was too big for the area. 2. The left atrium was so little they were worried of going too far and puncturing the other side of the heart. And 3. Corrosion of the stent because it would be pushed up against the left atrium wall. They all felt at this point the risks were more than the benefit, if everything went completely perfect and Kennedy would be in the absolute perfect position, there was even less margin for error for the doctors. The little glimpse of hope we had was once again whisked away. It was hard to be upset because I knew she was still safe inside my belly and I didn't have to worry about the procedure. However, what would this mean for her from here? What's next? The waiting game, once again.

We discussed with the doctors the next steps to aim for. I hate that word "aim" just because it shows so much uncertainty. At this point though, we aren't quite sure of anything. How can anything be certain, when everything starts to go one way then we get thrown a curve ball. The MFMs' and cardiologists' next steps are to meet with the cardiothoracic surgeons to discuss what they think. We now have two scenarios that can happen. They both are scheduled C-sections between 38-39 weeks (target time, but it all depends on her growth) where all the doctors are on hand and ready to intervene immediately. It all depends on what the surgeons and doctors think is best, because once she is delivered they only have a slim window of time, called the honeymoon period, where the babies are okay, but will go down hill quickly. Some babies honeymoon period is 5 minutes, and others could last 30 minutes. All the time the doctors have after delivery is so precious and crucial.

The first procedure that could be done is a normal C-section where they deliver her in the cath lab and take her across the room to operate immediately to open up her atrial septum. The second procedure is called the EXIT (Ex Utero Intrapartum Treatment) Procedure. With the EXIT procedure, I would be fully sedated and they would do a C-section but only deliver her head and shoulders and intervene before she is fully delivered leaving her on the placenta until she is fully delivered.

Kennedy's survival rate, from our understanding, has gone down to about 50/50 now. We are just praying she will continue to fight, and grow, and be strong for when she arrives. All of our doctors are so amazing, and all the prayers, support, and love from everyone is truly incredible.

Over the next month, we don't have much dealing with Kennedy. We will have a couple more growth checks, and will meet with the surgeons and doctors in Ann Arbor to discuss a delivery date and all the other details.......again, we wait.

We aren't necessarily upset the procedure couldn't happen, we are more disappointed the doctors couldn't do what they thought was best and scared, again, for what the future holds for our precious girl. For now, we know she is safe where she is and she is growing well. Please keep praying for us, as our road has become a little rocky, once again. We understand this process and journey isn't always going to be easy and smooth. There will be so many more ups and downs, and we will take them as they come. We believe Kennedy is one hell of a fighter (pardon my language), because that's what we have learned over our lives, to fight like hell.

Thank you so much everyone for all the thoughts, prayers, and love today. We truly felt it, but it obviously was not meant to be, and Kennedy seemed to feel the same way by not getting into the perfect position.

Please keep sharing our DONATION page. "Every little bit makes a difference."

Also, if you could, please say an additional prayer for Blaine and all the athletes traveling to Cleveland, OH for the Big Ten Meet this weekend. I am happy Blaine won't have to drive his own car to the meet, but also that he won't have to leave us at home with the unknown after the surgery that was supposed to happen. GO GREEN!

Michigan State University Throwers

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!!!

My Hand Heart for Kennedy

Blaine's Hand Heart

Kennedy 28 Weeks

Carsyn and Lilah

Thank you everyone for following our story and for the prayers and support. May He bless you.

Slowly Moving....

Since my last appointments a couple weeks ago, we haven't had very much going on. Blaine has really been getting into indoor season. Carsyn and I have been able to make it to a couple meets. She loves going to them and running around. I really don't get to watch the athletes much, as I am busy chasing around my 'athlete in training', but it's still great to be able to get out of the house for a little.

We have our next appointment this Thursday, February 5, in Ann Arbor again. We will be meeting with the maternal/fetal medicine doctor for a consultation and possibly another full body ultrasound, and also have another fetal echo done with the cardiologists. Hopefully then we will find out the finalized date for fetal intervention so we can plan and prepare ourselves for this big step. Kennedy has been a wiggle worm. She's been stretching her little legs in there quite often the past couple days and it really hurts. I end up having to push her little feet back just to make her stop. I am glad she is spunky already. She responds to almost every push or touch to my belly.

Last week, we received a care package from Sisters By Heart, an organization to help families with babies with CHDs and HLHS. Whomever nominated us, a very big THANK YOU! We greatly appreciate it. I wanted to share what things came in the care package and maybe a little description as to why they would include that item in it...

• A tote bag
• A book for Carsyn
• Matt Hammitt- All of Me CD
• I have often found comfort in his CD already. Matt is a member for a Christian band called Sanctus Real. In 2010, his family found out their little boy, Bowen, had Hypoplastic Left Heart. He wrote an album throughout their journey, so most of the songs we can relate to very well. I highly suggest listening to the album (it can be found on YouTube), and also reading about their story. www.bowensheart.com
• Swaddle blankets are used often as the babies can't wear clothing very often. It is a whole new challenge to learn to swaddle around tubes and wires, as I am sure Blaine will figure it out quickly and become a pro.
• Coffee mug
• Notebook
• A STOP! sign to ask people to not touch the baby and to wash their hands before they do. I have never been a germ-a-phobe, but I think once Kennedy is here I will be.
• Stress ball
• Hand sanitizer and sanitizer lotion
• A onesie donated by Pampers
• Smiley face baby hospital gown
• Pacifier babies must retain their sucking, so while she will have a feeding tube, pacifiers will be used often to keep her sucking.
• Deck of cards
• Baby socks
• Baby leg warmers
• Hat
• Side snap (Kimono style) onesie

As it may not seem like much, it is so great having things we know we will need once Kennedy arrives. I never realized how hard it is to find side snap onesies/bodysuits that aren't plain white!!!

We are looking forward to Thursday to keep the ball rolling and to be able to see our sweet girl again! Thank you so much everyone for the prayers and support. We are really feeling it and cannot thank everyone enough!

February is Heart Awareness Month! Please wear RED to support and spread word on heart awareness!

God bless you all,

Ana