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.

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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