Appointment at Barnes Jewish

My first appt at Barnes with the high risk OB, Dr. K, is scheduled for Mar 16th. They will do an ultrasound first, and then Dan and I will meet our new doc! She came highly recommended by several other doctors according to Dr. Proffitt. The lady at scheduling did let me know that there may be times that I do not see Dr. K since all of the docs at this practice are high risk and very busy. I figured that would be the case. I just want to be sure that Lincoln is in the best hands and I have faith in Barnes to coordinate a smooth delivery.

On a side note, I have been using fetal earphones to let Lincoln listen to classical music at night. It's a kit that Dan and I bought that can be used to also hear the baby's heart beat in the third trimester. I've always heard that classical music can make a baby's brain grow, and make the kid smarter in life. Well, maybe it helps lungs grow too! It can't hurt!

MRI Interpretation

Dr. Proffitt called this evening with the interpretation of my MRI by the radiologist.  There were no percentages given in the letter, but the overall result is that there is a large right side hernia in the diaphragm.  Portions of the liver and bowel are pushed into Lincoln's chest cavity.  The left lung was not visible, due to being filled with fluid (which is normal) and there was evidence suggesting a small right lung at the top of the chest (good news, better than no lung at all).

Dr. Proffit and I discussed doctors at Barnes and by crossing both of our lists, I now have a doctor's name to request when I call for an appointment.  She is going to contact Barnes as well just to be sure everything transitions smoothly with my records and such.  She made sure that I have the documentation from the MRI available to me, as well as the images.  Dr. Proffitt offered services as my PCP and any future pregnancies I may have and expressed her interest/concern for our family's outcome.  She has really been great through all of this.

I will call Barnes tomorrow to try to set something up with the high risk OB, Dr. K, at the Fetal Care Center.  Dan and I are trying to remain strong and optimistic through all of this change.  Our family's support has been a great help also.

MRI results

The genetic couselor called from St. John's to tell me that the MRI confirms the right sided hernia with the liver pushed up into the chest. She did not mention lungs or who had reviewed the images or what this meant as far as severity. I still expect Dr. Proffit to call this afternoon sometime to tell me more...

What a Day!

Yesterday was my second follow up ultrasound appt at St. John’s perinatal center. Let me tell you, the day did not go as Dan and I thought it would…

The day began without Dr. B! We've have seen him the past two times at St. John’s and were expecting to see him again. Apparently, he had been on call all weekend, so he was not there for this appt. The substitute doctor was a joke. His bedside manner is harsh, to say the least. They did not end up taking any measurements of the baby(as far as I could tell), which is what I thought the follow up was for. The doctor only looked at Lincoln for a few minutes and basically told us that he had CDH and explained the condition in a half-assed way from the beginning. He also said the genitals looked like a boy, but that the urethra may not end at the tip of the penis!? We took everything this guy said with a grain of salt. He recommended referring us to the medical center in Cincinnati, since he “knows somebody there.” I have read about this center and one in San Francisco that have worked with many cases of CDH. The doc said that he would call the center for us to see what they recommend for our case.

I asked about having an MRI for confirmation before being referred to another center and he pretty much blew me off, saying that in his experience MRIs never gave much info! Dan brought up the surgeon at Cardinal Glennon, and this doctor actually rolled his eyes! The doc said, “Let me put it to you this way, would you take your Mercedes to a dealer that you know has a good reputation, or a mom and pop shop just because they are local?” I understand his point that the centers out of state have more experience, but what doctor talks like that! We are simply looking into our options!

This doc also thought that Lincoln’s heart looked good, but that he wanted a second opinion and said we should see a pediatric cardiologist at St. John’s that is upstairs from the perinatal center. Even though Dr. B had previously told us the baby’s heart looked good, we figured a cardiologist’s opinion couldn’t hurt. He called the cardiologist and was able to get us in that morning between the other patients.

So, Dan and I went up to the cardiologist to have an echocardiogram of Lincoln’s heart. An echocardiogram is basically a focused ultrasound. The cardiologist was very nice and explained that the baby’s heart looked perfect! He also went over some more details of CDH as far as what doctors we will need to perform what duties and where we can find those docs and that sort of thing. He also told us to not look into the stats of CDH too much because every baby is different. He has performed several echocardiograms for CDH fetuses and has been surprised by the outcome (in a good way) many times! He did advise us to be careful in our decision of prenatal surgery and where we deliver. Meeting with him may have been the most informative meeting with any doctor thus far! He recommended a follow up echocardiogram at wks 29-30 to be sure that the heart is not being restricted later on, which can cause heart complications for Lincoln, and would mean an early delivery to avoid those complications.

When we were waiting for the cardiologist, the receptionist told us that the doc at the perinatal center wanted us to come back down to talk to him again! We just couldn’t get away from this a-hole! So after meeting with the cardiologist, we traveled back to the perinatal center, hoping that there was news from Cincinnati (someone who knows what they are talking about at least!).

The doc sat us down and told us that he was able to contact the center in Cincinnati and that we do need an MRI. He gave me a write up for one and said that we should do it this week if we could. I asked about waiting until wk 28 so that we might see lung development too (as Dr. B had suggested). He said that being 25wks is far enough along to confirm that we are dealing with a right sided hernia. (I assume Cincinnati asked what the MRI results had shown) He told us that surgery in utero is not usually performed on right sided hernias, basically because they have such good outcomes! (Great news!) So in order to find out what center we should be in contact with, we need to nail this thing down.

He had the nurse call the MRI center at St. John’s and, to our surprise, they could fit me in at 3pm that day! Since we had not expected to have all this happen in one day, and without talking to Dr. Proffitt (my regular OB), Dan and I talked briefly and decided that we should go ahead and have the MRI. If we need to repeat it later for lung development determination, or clarity of the hernia, we are only talking money. It doesn’t hurt the baby, so we agreed to take the 3pm appt.

We had to wait at the MRI center too. (It was a long day!) The actual procedure was easy and took about 45 minutes. I just had to lie still in this claustrophobic tube. They gave me headphones to listen to the radio. The machine makes load noises every so often, when the images are being taken. After each series I could feel Lincoln moving like crazy! I’m sure he didn’t enjoy being disrupted. Unfortunately, Dan was not able come back with me after he had waited with me all day!  I asked for a CD with the images since I am 99% sure we are going to transfer to Barnes, plus Dan and I wanted to be able to view them as well.

I spoke with Dr. Proffitt today and she has gotten he images already, but is waiting on the interpretation from a specialist. She is also going to contact Dr. B for me at the perinatal center to ask him to review the ultrasound from yesterday (since we were stuck with a quack!). She said that if there was any way that she would have known we were going to see that particular doctor at the perinatal center, she would have had us reschedule for another day when he wasn’t there. Apparently, I am not the first to comment on his behavior and she is well aware of his reputation. She also said she would try to get the name of a high risk OB at Barnes’ fetal care center for us as a referral. She is so amazing and I love her! I am so sad that Dr. Proffitt cannot deliver Lincoln, but grateful that she is supportive and able to help guide us in the best direction for him! She expects to have some info for me tomorrow.

Update from Dr. P

Dr. P called today after getting in touch with the surgeon at St. Mary’s/Cardinal Glennon. He has performed 4 surgeries in utero for severe cases of CDH were the baby had less than 25% lung volume. Of the four, all had a right sided hernia with the liver moved up into the chest. Three of the babies survived. 75% sounds pretty good for babies that are in a situation with little hope. It gives some piece of mind to know that, if Lincoln needs surgery before he is born, there are qualified people at Cardinal Glennon that can help.

We will have to wait at least 3 more weeks for the MRI, which will indicate how severe of a case of CDH we are dealing with. For now, I will remain under the care of Dr. P until we get results from the MRI. At that point, she will refer us to either the doctor at Cardinal Glennon, Dr. V, or someone at Barnes if Lincoln’s case is not desperate. Barnes is also able to care for babies with CDH after they are born but do not have the reputation for in utero surgery like CG. Monday, we go back to St. John’s for another follow-up ultrasound. We will get Dr. B recommendations and hopefully they find something between the legs this time!

Amnio Results - 2nd Part

The genetic counselor called today with the second portion of the results from the amnio test. All 46 chromosomes look normal! They did not find any abnormalities, and he's still a boy! We are so happy to have this good news and one less thing to worry about now.