Doctor's Appointments and a Hospital Stay

It's been a couple of weeks since my last update and there is a lot to catch up on.

I went to see my OBGYN for a regular prenatal appointment just after the New Year. We talked about the new diagnosis and about my experience at Maternal Fetal medicine. We talked again about how she wouldn't be able to deliver me at the hospital adjacent to the Children's hospital where the baby will have surgery. With the new diagnosis, she and I both were wondering about the possibility of having her deliver me at Norton Suburban, where she is contracted to deliver, and then to transport baby after delivery. She said if that didn't work out, she had a doctor in mind that she wanted to transfer my care to. I had an appointment already to see the Pediatric Cardiologist and I was to talk to her about the possibility of delivering at Suburban, and Dr. Nett would do her research, too.

I had the appointment for a fetal echo cardiogram and with Dr. Lucinda Wright, one of the Pediatric Cardiologists at Kosair Children's Hospital on January 11. The appointment went well and Dr. Wright confirmed the diagnosis of Coarctation of the Aorta. She was very personable and answered all of our questions. She did say that I should not deliver at Suburban. She felt that the safest place to be would be at Norton Hospital Downtown where the baby would be able to be quickly treated if any extra problems arose. Even though I wish Dr. Nett could deliver me, I completely understand, and of course want to be at the best place for our little boy. We made another appointment for an echo for when I am 36 weeks pregnant, just to see if anything has changed as he grows.

January 14 was my Grandma's 85th birthday! My sister picked me up and Tanner up, and we carpooled to the restaurant in Crestwood to have lunch and surprise my Grandma with my Mom and several of Grandma's friends. We stayed for about an hour and a half and had a great time. As we were gathering our things to go, I told Tanner we should go to the bathroom one last time before heading home. After I helped him, I had to go. I was shocked and shaking as I discovered I was bleeding. I wasn't sure what was happening. It was like the beginning of the pregnancy when I had the Subchorionic Hemorrhage, except that had been resolved. I wiped twice, and it wasn't stopping. I pulled myself together and went back out to the restaurant. I didn't want to alarm my mom and Grandma, so I didn't tell them. When I got in Amy's car, I told her what was happening and called the doctor's office. They told me to go straight to the hospital, Labor & Delivery department to have them check me out. In hindsight, I should've gone downtown, just in case the baby had to be delivered, but I was a bit emotional and the triage nurse didn't know to tell me any different.

Amy dropped me off and took Tanner and Logan, I called Wes and he got to the hospital within about 10 minutes of my checking in. By the time I got to the hospital, I was bleeding even more. I was scared, to say the least. My baby already has a heart issue, it would not be good to add premature birth on top of that. I did not want him to be born yet! The nurse checked me to see if I was dilated at all, and fortunately, I was not. They hooked me up to the monitors to check baby's heart rate and to check for contractions. Baby's heart was in the 140's and I was not having contractions. An ultrasound tech came in to take a look at what was going on. They were looking to see if the placenta was pulling away from the uterine wall, or for any other reason for the bleeding.

Everything looked good. The placenta was fine, and there was no other signs of why I might be bleeding. The hospitalist OBGYN, came in to have a look. She examined me and said she didn't see any other active bleeding, but she wanted to admit me for the night as a precaution. I was disappointed, but understood. I didn't want to be discharged too soon and have something happen worse once leaving. So, I called my sister and told her I would need her to pick up my older kids from school and keep them for a few hours. Wes was supposed to go to school that night, but decided to not go and stay with me for a bit. He went home and got me a few things I wanted for the night, and stayed till time to put the kids in bed. There wasn't any reason for him to stay, and I wanted the kids to stay in their routine as much as possible, since they had school the next day.

The next morning, Wes took the day off of work so he could get the kids to school and stay with Tanner. We were hoping I'd go home that day, but that wasn't the case. Dr. Evans, Dr. Nett's associate rounded on me that morning. She said she wanted me to stay another 24 hours as a precaution. I wasn't having any active bleeding, but was still spotting and she wanted to make sure it wouldn't start up again. Again, I was really disappointed, but knew I had to stay. Fortunately, nothing eventful happened in the next 24 hours. They did order steroid shots, to be given 24 hours apart. They are to strengthen baby's lungs in case he were to be premature. So, I got one Friday morning. Wes and Tanner came to visit for a while, and my sister, Amy and her kids came to keep me company, too. It was nice to have the day broken up a little. They monitored the baby and me twice a day, and everything looked great. They had to move the sensors several times because he is so active and he kept kicking off the monitor!

Saturday morning came and I finally got to see Dr. Nett. She said I could be discharged! We talked about our next step of action in our plan. She said that if anything else were to happen, I was to go to Norton's downtown. She also told me that she had talked to Dr. Nick Carracato who is an OBGYN in an office that delivers downtown. She said she "hand picked" him and feels like he will be a good match for me. He will work closely with Maternal Fetal Medicine about my case, but he would be the one caring for me and eventually he (or someone in his practice) would be the one to deliver that baby. She did that so I wouldn't have the risk of having Dr. How deliver me, the one I had a negative experience with at Maternal Fetal Medicine.  As a side note, I don't want anyone to think I hate Dr. How. I just had a bad experience, and I don't feel that given her bedside manner and the way we started off that I want her to be a part of our experience, given the circumstances, especially. Plus, I'll be honest, although she may be a great doctor, and some may really like her, I find it hard to trust her after she gave us such a wrong diagnosis for our baby. Anyway...

So, I got my second steroid shot Saturday morning, and let Wes know I was ready to be picked up. He was at a birthday party with the kids at Chuck E. Cheese, and I didn't want them to have to leave early. So, my sister Amy kept an eye on them until after Wes picked me up, and then we went to pick them up at the party. It was nice to be out of the hospital and go home!

I am grateful for all of those who helped out and messaged me, and for friends who were quick to offer to bring dinner. It is wonderful to know we have such a great support system, and that so many are thinking of us and praying for us. Wes' coworkers even had some beautiful flowers sent to the house to wish a speedy recovery.

We are praying that the next 9 weeks go smoother and that baby boy stays put. It seems we really can't predict what is next for us in this pregnancy! I just keep thinking how much this little boy will be worth it! We love him so very much and can't wait to have him here. Even with all of the chaos, and all of the worry and nerves that go along with our situation, I know that we are being watched over. I went visiting teaching yesterday and shared a message about how the Lord wants us to be of good cheer. Even in the midst of trials, we can have joy and hope because of the gospel of Jesus Christ. I'm not going to lie, I wish our situation were different, that our boy had a perfect heart. But, that is not the case, so we just move on, knowing that his life and plan for him is in God's hands. No matter what happens, he is ours for eternity. The blessing of having our family sealed in the temple does not end in this life. We are together forever. I pray that all will go well and that we will raise a healthy little boy into adulthood! But, no matter what happens, how hard this road will be, I know that the Plan of Salvation is real. Our Savior came to earth to suffer not only for our sins, but also to suffer all of the pain that we would feel in this life. He has been through it all. He sends the Holy Ghost to guide our path and to comfort us in hard times.

I have another appointment this week to check on the growth of our baby, and then we meet Dr. Austin, the heart surgeon at Kosair on Monday. Hopefully, he is growing strong and making himself ready to make his appearance in a few weeks. Thank you again for your prayers and support. We feel it.

A New Diagnosis

Today starts a New Year--2016! Yesterday, Wes, myself, and my parents traveled to Cincinnati Children's Hospital in Cincinnati, Ohio. As I mentioned before, we have been wanting to see their facility and meet with a doctor there to be able to compare and decide the care of our baby to our local Children's Hospital, Kosair. We have appointments scheduled at Kosair in a few weeks, but Cincinnati was able to get us in very quickly, so we went there first. 

We were scheduled at 10:30 for a fetal echo cardiogram and then to consult with Doctor James Cnota. We got there a little early, but they were running right on time and got us in our room fairly quickly. The echo cardiogram took a long time, but prayers were answered in that the baby was rather still and they were able to get all of the images and information that they needed. Several ultrasounds in the past have been challenging because of the baby's position, or the fact that he was moving a lot. When the woman performing the echo was finished, she said she would go and consult with Dr. Cnota and that he might want to come and take more pictures. After about 10 or 15 minutes, they both came back and he did take another 15 minutes worth of pictures. He was very kind and personable. After he took all of the images he wanted, he sat and talked with us for at least 45 minutes or so, explaining all of their findings. We had a new diagnosis. 

Dr. Cnota told us that the baby definitely has heart abnormalities, but he didn't feel that is was actually HLHS. The left side of his heart is a bit smaller, but not significantly. The problem is actually his aorta. He has what is called, Severe Coarctation of the Aorta with aortic arch hypoplasia. So, his aorta is too narrow, which is a problem, because it is the main blood vessel carrying oxygen-rich blood from the left ventricle of the heart to all of the organs of the body. The doctor feels that once the aorta is fixed, the left side of his heart will be strengthened in time. There are also some other abnormalities. The mitral valve and aortic valve are mildly smaller than normal, but he can see that there is blood flowing through them that seems enough. There is also a small hole between the left ventricle and right ventricle in the lower ventricular septum of the heart. Dr. Cnota feels that the heart muscle will heal the hole on it's own. 

So, the main issue is repairing the aorta. There are a few ways to do this, and they will not know which technique they will use until after he is born and able to do an echo cardiogram on him without the barrier of being in the womb. Once it is determined exactly what they need to do, they will perform open heart surgery within 3-7 days of birth. There is still a chance that there could be more undetected issues that they find after birth, of course, but the doctor was confident in this new diagnosis. The news changes things. He should only need one surgery now, instead of three. The recovery time should be shorter, as long as there are not any complications. I am excited that I should be able to nurse him within a few short weeks. His long term prognosis is better. 

We are grateful that the doctor was able to see so much during the echo and really determine what our little guy will need. We have all the details to work out still. We loved it in Cincinnati, they were so kind and accommodating--they even squeezed in a tour of the facility for us, but we are still going to go to Kosair and compare. We have heard wonderful, amazing things about the surgeon here in Louisville, so if we tour and feel confident in the post-op care, we might just stay close to home. We did like the idea of having a Cardiac Intensive Care Unit (CICU) in Cincinnati, but we want to give Kosair a chance to show us what they can do in their NICU. One of the biggest things we have to talk about in our decision is the delivery. My delivery with our oldest child was a C-section. Both of the other kids were VBAC (vaginal birth after cesarean). I am told that I should still be able to have a VBAC, but I am not able to be induced, typically. With the scar on my uterus, I am at extra risk and am only supposed to go into labor on my own, as opposed to inducing with medication. So, if I was to deliver in Cincinnati, I would have to basically move up there a few weeks before delivery and wait to go into labor on my own, because of the distance. If I deliver in Louisville, I would just be able to wait and go on with my normal routine until labor comes. So, we just don't know what we will do yet. I still need to talk to other doctors and make these decisions. 

Wherever we deliver, we are positive about the new diagnosis. It is still terrifying to think of your brand new baby being cut open and having open heart surgery, but we have faith and hope that things can work out for our son. Thank you for your continued prayers and support! It has helped us through a rough couple of weeks! 

If anyone is curious and wants to check out more information, Cincinnati has some great explanations and videos at: http://www.cincinnatichildrens.org/patients/child/encyclopedia/defects/coarctation/