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.

24wk Appt

Dan and I went to visit Dr. P today for my 24wk appt. My weight and blood pressure are good and I measure 25wks.

We discussed Lincoln's condition and what that meant for us seeing Dr. P in the future. She does not handle high risk pregnancies, and if the CDH condition persists, she would recommend we see a specialist. She also said that we are more than welcome to see her in conjunction with the new doc, but that could make things more complicated for us. It is really up to us what we want to do. She recommended I wait to schedule my 28 wk with her until after we have the next ultrasound with Dr. B on the 21st to assess the situation and make a decision on who we want to see for future appts.

Dr. P knows a fetal surgeon at St. Mary's that she is going to contact about our situation to see if it is something he could help with. We may want to switch to him for general care throughout the pregnancy if he is able to help Lincoln. She was unsure whether he performed the prenatal tracheal occlusion surgery. She also mentioned, as did Dr. B, our place of delivery is very important and we will want to deliver as close to Children's Hospital as possible. She didn't give us a date for getting back to us after contacting the surgeon, but I will call her Friday if I haven't heard from her.

Dr. P agreed with the suggestion of an MRI between wks 28-30 and she offered to make the appt for us, but I wanted to wait until after the next ultrasound. No need to get ahead of ourselves. With everything going on, Dr. P decided to keep my due date based on my LMP, so we are back to June 4th EDD, putting me at 24wks 1day.

So, now we are just waiting to hear from the genetic counselor about the final genetic testing sometime late this week, and then waiting to meet with Dr. B at the perinatal center at St. John's for the next ultrasound and to hear his recommendations.

Feeling Optimistic - Amnio Results part 1

The genetic counselor called today with the first results of the amnio test. The baby does NOT have any extra chromosomes, which is great news! No Down Syndrome, Trisomy 18, or Trisomy 13 (the three most common abnormalities). The second part of the test takes about ten days and checks to be sure that all of the chromosomes are complete and have no extra genes within each chromosome. Good news so far, but we are not out of the woods yet. Regarless, Dan and I can't help but feel optimistic.

The test also shows gender, and it turns out she is a HE. We are having a boy after all! Dan and I also had previously picked a boy's name, Lincoln Daniel.

We have about a week until the rest of the amnio results come back. Hopefully, everything will be normal. Of course, we still have the unusual anatomy to deal with and see what pans out from that. Dan and I are trying to stay positive and are enjoying every day we have with our child.

Lincoln's Begining

A home pregnancy test gave a positive result on Sept 27th, 2010. After trying for only two months, Dan and I were so excited to learn we were going to be parents. Since I didn't have a regular OB that I saw, I made an appt for an initial OB visit with Dr. M, who had delivered by sister’s children.

Dan went with me on Oct 29th to St. John's Medical offices to meet Dr. M and there we had our first ultrasound. It was so amazing to see our baby on the monitor! We saw the heart fluttering at only 8 weeks along! The baby's measurements according to the ultrasound were putting the baby at 7 weeks gestation, one week behind according to my last menstrual period. Dr. M said that this discrepancy could be due to the measurements being off (we had an external ultrasound, instead of internal which can be more accurate) or that my due date could be off, meaning that I ovulated late when the baby was conceived. I had the standard OB blood work done at this visit as well.

After meeting with Dr. M at St. John's, I was less than pleased about her practice and enthusiasm in general with our pregnancy. I had been thinking of trying a natural birth, with no medication and little medical intervention. In my search for alternative birthplaces, I found the Birth and Wellness Center in St. Charles, MO. Although the center was not open yet, I was able to get a referral for a Family doc who was open to natural births.

After a consult with Dr. P at her family practice a few weeks later, I knew that I had found the doctor for me. She was totally on board for me going natural and put my mind at ease. I had my 12-week appt with Dr. P on Nov 23rd, and Dan came along, too. Dr. P did another ultrasound to assess the baby's growth. Baby was still measuring around one week behind overall, but Dr. P was not worried. Every baby grows differently and they come when they are ready! We declined to have the 12-week screening done to for Down Syndrome etc. (Oh, and my blood work came back normal.)

At my 16wk check up on 17th of Dec, my blood pressure and weight were both good. Dr. P ordered an anatomy ultrasound at the perinatal center at St. John's Hospital to check growth and find out the baby's sex!

At 19 weeks, Dan, Kathi, Layla, my mom and I went for the ultrasound at the perinatal center on Jan 10th. We were all so excited to see how big the baby had grown and to find out the gender! The technician performed the test, which took about 40 minutes. Sometime in the middle of the session, the technician announced that we were having a little girl! Although Dan and I had been hoping for a boy, we were overjoyed non-the-less. Dan and I had talked about names before the appointment and had decided on Scarlett Hazel for a girl.

After the technician had finished, she said that she was having difficulty seeing some of the structures due to the baby’s position. Dr. B came in to talk to us about the placental cord placement. It is called “eccentric” when the cord enters the placenta on the outer edge, instead of the middle. This may cause restricted fetal growth that is usually seen later in pregnancy. Dr. B suggested we return in 4 weeks to look at the structures they were unable to see that day and to monitor baby’s growth due to the eccentric cord placement.

The following week, I had my 20wk check up with a resident at Dr. P’s office. While I didn’t care for the resident, everything seemed fine with baby and me. My fundal measurement was 19cm, concurrent with the ultrasound findings. Dr. P decided that we could just push back my due date a week to accommodate for the difference, since baby had been measuring about 1 wk behind since day 1. This meant I was back to 19wks gestation. Dr. P was not concerned that the eccentric cord placement would change our birth plan as long as baby grows consistently.

On Feb 7^th, Dan and I returned to the perinatal center at St. John’s for our follow-up ultrasound with Dr. B. They were able to see the heart this time and said that everything looked good with the function and structure, but that the placement of the heart in the baby's chest was extreme to the LEFT. Dr. B explained this probably meant that there was a mass in the chest pushing the heart to the side; most likely the liver was herniated into the baby's chest.

Congenital Diaphragmatic Hernia (CDH) is a condition where the diaphragm doesn't form completely (the large muscle separating the upper and lower cavities of the abdomen), leaving a hole that allows other organs to spill into the top. This can interfere with the growth of other structures, such as the lungs and heart. CDH is a life threatening condition that has a wide range of outcomes, depending on the severity of the condition. In the most severe cases where little hope is given, surgery can be performed on the baby in utero to try to help the lungs to develop. Dr. B did mention two other possible conditions that would cause the hear to be misplaced, but he thought CDH was the most likely. Further tests will need to be performed to be more certain.

Dr. B was not able to assess lung development at that time due to the baby's small size. Dr. B also noted that the long bones (upper leg and upper arm) were short for the gestational age, which can be a marker for Down Syndrome. We had an amniocenteses performed to check for abnormalities with the chromosomes that may explain the baby's anatomy. This test involves taking a small amount of amniotic fluid through a needle to retrieve genetic material from the baby. It didn’t hurt as much as it scared me to be going through this so suddenly. The results will take up to a week.

Dr. B asked us to return for another ultrasound in two weeks to check on the baby's growth. He also mentioned that a fetal MRI could be in the future to help him see the diaphragm more clearly, but that can only be done in the third trimester, which is 4-5 weeks away.

Needless to say, Dan and I are devistated by all of this unexpected news. All that we know for now is that our little one has a heart that is pushed to the extreme left due to unknown reasons.

No condition has been formally diagnosed. I have my 24 wk check up with Dr. P next week and will have my gestational diabetes test done. Since Dr. P is a family doc and doesn't specialize in high risk pregnancies, I fear that I may not be able to finish out this pregnancy under her care if the baby is diagnosed with CDH. We will have to wait and see. So many uncertainties.....