A Successful Fetal Intervention!

It’s hard to believe I am sitting here in the comfort of my own home writing this blog post and feeling my little one doing somersaults in my belly. Just yesterday morning, I was in the OR, and our little girl was having her first heart surgery… in the womb. How amazing. I figured some of you may be interested in how this all went down…

We arrived in Ann Arbor, Michigan, late last Thursday night. We started our appointments Friday morning at 9 a.m. and they took most of the day. Appointments included meeting with MFM, full ultrasound, echo, genetics counseling and meeting with two of the cardiologists to discuss the fetal intervention. It was a long day. We had the rest of the weekend to relax as much as we could as we waited for our Monday appointments. We were able to relax and enjoy ourselves for the most part, but the reason for being there was never far from our hearts and minds. There were lots of times we just looked at each other and took a deep breath. We definitely felt the weight of it all as the day of the procedure drew closer. We were begging God that He would sustain her life through this procedure and praying we were making the right decision for our little girl, and if we weren’t, that He would put a stop to the procedure somehow. We also worked on finalizing a name for our little girl. We are getting so close!!! Though, I hate to disappoint, but her name will remain a secret until she is born.

We were blessed to have two of our best friends come into town Saturday morning from Ohio and spend the day with us. We spent Saturday and part of Monday with them just hanging out and enjoying each other’s company. Sunday Mark and I “went to church” via the Web by watching our church’s online stream of the service. We had lunch, saw a movie, walked downtown Ann Arbor, ate dinner and had a nice time.

Monday we started appointments at 1:30 p.m. We met with anesthesiology, had more meetings with the fetal intervention team and then a blood draw for me. We were only there for a few hours.

Some of our other best friends drove in Monday night from Indianapolis to be with us on Tuesday. They got into town about midnight (of course we were still wide awake at that time), so they stopped by our room. We caught up with them until 2 a.m. then called it quits for the night. Our wake-up call was at 5 a.m. I didn’t mind staying up so late because (i) we hadn’t seen our friends in four months and enjoyed catching up, and (ii) hello, I was about to have a cardiac fetal intervention on my baby-who can sleep the night before something like this?! We “slept” from 2 a.m. to 5 a.m. (well, my hubby did, the baby and I just tossed and turned all night).

We got to the hospital a little before 6 a.m. Tuesday morning. I put on the stylish hospital gown, laid in the bed and was wheeled to what was technically a recovery room in the maternity ward. My nurse then put in an IV for a saline drip. She placed the first one in my hand, but then the IV wasn’t dripping, so she had to take the tape off, take the IV out and try it again. Sigh. Did I mention I hate needles? She finally got the IV placed correctly, and the saline started coming.

I was hooked up to monitor any contractions. I actually was contracting according to the monitor (I couldn’t feel anything). This may have been due to not having been able to drink or eat anything, according to the nurse. Then, I had to take a medicine that helped to relax my uterus. They did an ultrasound to see how the baby was positioned even though they knew the baby could be in a totally different spot by the time we got to the OR.

Then, off to the OR around 7:15 a.m.. This is when Mark had to go to the waiting room. In the OR, they placed my epidural. This is the first time I have had an epidural. I had a spinal block during my c-section with my first daughter, but they put it in very quickly during one of my contractions/pushing, and I didn’t feel a thing. I did a natural VBAC with my second daughter. Getting the epidural was awful! There was the main anesthesiologist in the OR with a resident and a fellow. I can’t remember which one did my epidural (it was the resident or fellow, I do remember that for sure), but it took nearly 20 minutes. They had to try at least two times. It was not fun. Finally they got it in though. Whew. This is why I opt for natural child birthing lol! I don’t know how long is normal to place an epidural (I thought they said it would only be a few minutes) or how many tries is normal, but that was not fun!

They laid me down, got me situated then started the epidural. During a fetal intervention, they give you more than a normal epidural during labor/delivery-they completely numbed me up to my chest. They kept testing the effectiveness and how high the epidural had climbed up my body by scratching me with a needle on the shoulder, then having me tell them when I felt the same amount of sensation on my belly. When they injected enough to make me numb through most of my body, they put oxygen in my nose, placed my catheter and started the procedure.

There was a blue sheet up in front of me so I couldn’t see the doctors, but I could watch the ultrasound monitor. I also brought in my iPod and had one ear piece in on a low volume so I could zone out if needed. I went back and forth between listening to the doctors and watching the screen to zoning out to my Jesus-loving music. I was shaking all over, and my body seemed to only calm down when I zoned out and got to a very relaxed state of mind. So, I zoned out, listened to my music and prayed during most of the procedure. When I would watch and listen, I would automatically kind of tense up and start shaking, teeth chattering, etc.

The Procedure

They stuck a needle through my belly and into our baby’s thigh to administer the drugs she would need (one to take care of her pain and another to basically paralyze her so she wouldn’t move during the surgery). Once she was not moving, they made about a one-inch incision just in my skin on my belly (they did not make any incision in my uterus-they only stuck the needle through my uterus). They put the needle (similar in size to a needle they use for an amniocentesis, pretty thin) through the incision and then went through my uterus. They went through her chest/ribs and into her heart. They poked a hole out with the needle, then pushed a balloon through the needle into the new hole and inflated it three times to stretch the new hole. Then they brought the needle out. This was all guided by watching the ultrasound monitor. My understanding is they weren’t sure if they really got a good hole or not that time, so since the baby and I were doing fantastic, they decided to do it again.

I believe at this point they had to give another dose of meds to the baby because her meds were wearing off. Of course, our baby girl was ready to roll around and play and didn’t want to succumb to the meds, so they ended up having to do it a couple times to get her to stop moving! Not surprising because she is very active in my belly. Once they accomplished that task, they went in again. This time they thought they made a better hole. They inflated the balloon another three times, then they removed the needle and stitched me up. They watched the baby for 15-20 minutes in the OR once they were done. Then, I went to recovery.

The baby and I did great. The baby had one time where her heart rate dropped, but it came right back up. They did mention there was some extra fluid around her lungs, but they didn’t seem too worried about it. I didn’t need any extra drugs to sedate me during the procedure-I was able to hold it together. It was amazing how quiet and calm it was in the OR, even with a medical team of 15-20 people in there. My hubby had a cell phone they gave him, and they updated him a couple times during the procedure. I think I was in the OR for about 2.5 hours total.

Once I was back in the recovery room, they hooked me up to monitor contractions (there were some), and I waited until the feeling in my body came back. I was able to order lunch (this pregnant momma was hungry!), and I finally made it over the last hurdle before being able to be discharged-going potty. They came up and did an echo to take a look at the hole and see how big they were able to get it and what the blood flow looked like. Before the procedure, they couldn’t see a hole or any blood flow through the atrial septum. During this echo, the cardiologist measured the new hole in her atrial septum to be 1.7mm, and she could see some blood flowing through. The procedure was a success, but they were disappointed to some extent. They were hoping to get the hole bigger than what they did. The balloon inflates to 3.0mm, so that was their hope. But, as our cardiologist at our home hospital said after she talked to the docs that day, going from no hole and no blood flow to a hole with blood flow is great!

After the procedure, I was a little sore. Mainly the area on my back where they poked and prodded to get the epidural in was the most painful part of my body. It hurt to sit against a chair, but it is better today. I have two stitches in my belly-not painful unless I accidentally bump them against something. I have probably about 7 other needle pricks from the IV and the needles used to administer the meds to our baby, but those do not bother me.

It’s funny because my head thinks I should be in more pain than I am, like I just had a c-section or something. Hello, they just performed a cardiac fetal intervention on my baby, I surely should be in excrutiating pain, right? You would think, but that’s not the case. I am sore, yes. The site where they did my epidural was a bit painful, yes. I have to be careful not to bump my stitches, yes. In my mind though, these are so minimal when you think that our baby just had her first heart surgery in the womb. Amazing. I am not on any pain meds. I had to take medicine for the first 24 hours to keep me from contracting but that was it.

I was dismissed in the afternoon. It was weird to leave so soon after the procedure knowing the magnitude of what just happened. But, we went back to our hotel and hung out with our friends. After some hang out time, they all headed back home. We went to dinner, rented a movie and went to sleep. We flew out late this afternoon and are now home sweet home with our other two babies.

We go back to our normal doctors here in Kansas City on Monday to take a look at how the new hole is doing.

We are so thankful. Thankful we didn’t give up on fetal intervention out of fear because that would have been easy to do and totally understandable. Thankful we had success and are celebrating this new hope for our baby. Thankful God chose to bless our decision to do everything medically available for our daughter to have the best chance at life. Thankful we are still pregnant with our little miracle. Thankful for our family who took care of our girls for nearly a week. Thankful for our friends who brought meals every night for our girls while we were gone and even brought freezer meals for us to eat now that we are home. Thankful for all you who are praying for us. Thankful for two great sets of friends who came up to be with us during this procedure. Thankful we are still on this journey. Thankful for Mott Children’s Hospital for giving our little girl a chance with fetal intervention when the other top two hospitals said no due to her Turner Syndrome. Thankful for a great team of doctors we were able to work with at Motts. There is so so much to be thankful for tonight. We have done all we can on our human end for our child. We are now going to try and slow down, relax and enjoy these last eight weeks with our two little girls before our world changes forever with the birth of our little one.

Our little girl still has a long road ahead of her. This procedure, though a success and something to be excited about, did not make her heart all better-it wasn’t a cure by any means. It doesn’t take away the fact that she is still going to be a sick baby when she is born, and she will probably be fighting for her life still. She may still need immediate intervention at birth. Her lungs have probably already been damaged in-utero. There are still so many unknowns. This hole they just made could close right back up, and we could be in the same spot that we were already in. We just have to wait and see. If this new hole stays open, her chances of surviving her first surgeries are sitting at a 50/50 chance. Those aren’t great odds, but we’ll take them! They are better than the 10-20% chance before the fetal intervention.

Some things we know for sure- (i) our God has a plan; (ii) God will prepare us for whatever lies ahead-whether it be what we’ve been praying for or our worst fear; (iii) God is with us through this journey; and (iv) our little girl is a fighter.

Ways to pray:

1. The hole in her atrial septum stays open and even gets bigger with the new blood flowing through it.
2. Her lungs to develop properly and that she will have minimal lung damage.
3. I do not go into preterm labor. I have to make it to 36 weeks for the doctors to be able to do anything for her heart. And, the bigger she is at birth, the better.