UCSF Appointment

UCSF emailed me my agenda for today's appointment. I have a fetal echo at 10am, an ultrasound at 1pm and then meet with the doctors at the Fetal Treatment Center when complete.

The fetal echo was similar to the one I had at Stanford. It took a while for the tech to get all the views she needed for the doctor. Finally the cardiologist came in and briefly said "Baby's heart looks good, just squished" and left. Remember I still haven't had a doctor sit and have a one on one conversation with me about this defect and what all these things mean. I figured since I was going to meet doctors today that I would get that chance so I took what he said and ran off to my next appointment. The ultrasound went as normal. The tech had to do all the measurements again that had already been done at the high risk office and Stanford and I was patient. I was glad that they weren't making me do another MRI today because these appointments were taking a long time and I was feeling tired by now. After the ultrasound I went to the Fetal Treatment Center and was sent back to the ultrasound because the doctors wanted to see something. This time the doctors were present in the ultrasound. They were looking at the space between the baby and the placenta to see if there would be room to safely to perform fetal surgery. The space was very narrow. After we all went to a conference room (me, my mom, the ob/gyn, and one of the pediatric surgeons). The ob/gyn took the time to draw a diagram on the board to show me what is taking place inside my baby. FINALLY someone is talking to me in detail. I knew most of the info he was telling me but it was nice to have a professional tell me rather than reading stuff off the internet. What I didn't know were MY baby's stats. I was told that baby has an LHR of .74 and that baby's with LHR 1.0 and above have a 50% chance of survival, and baby's with LHR of .6 or below never survive. So my baby is somewhere in between. This news and the fact that baby has no sign yet of a left lung and barely any right lung wasn't good, however, I still see hope for survival!

The pediatric surgeon spoke up about my options. I had made it clear that I didn't want to terminate so we didn't even discuss that as an option. She had mentioned comfort care. Basically they would do whatever to keep the baby comfortable and not put him on machines, etc. to fight for his life. She mentioned that sometimes we go through everything we can to keep these babies alive and it still doesn't work. And even if the baby survives, it may not have a good quality of life. I took in everything she said but knew in my heart that I just wouldn't be able to live with myself if I didn't keep fighting! Since it was the day before Christmas Eve, there weren't any other team members there to speak with so the conversation fell short and I drove home in deep thought. I kept wondering...."Why is this happening to me?" "Why must I make a decision for another beings life?"

Amniocentesis

Today I went in for my Amniocentesis. This is something I've never experienced before and wasn't sure what to expect. I was very scared. The nurse thought I was scared of the needle but that wasn't it at all. I was more afraid the procedure would cause me to go into premature labor and making chances of survival even worse for my little man.

The needle went in and felt as I would have imagined. What I wasn't expecting was the thump and pressure of the fluid coming out into the tube. It was a strange feeling and I jumped a bit. I started to cry, again not because of the pain but because of the fear of going into labor. I was also very emotional because I was there going through this alone.

Good thing it didn't take long and their weren't any complications...whew!!! Now I am home resting for the rest of the day while I await my appointment at UCSF tomorrow.

Initial contact with UCSF

After crying it all out, I decided to fight! I researched for hours online about this defect and gathered as much information as possible. I read a story of a baby "Abram Friend" who was born in Cincinnati who also had LCDH and what steps the surgeons took to save him. I was impressed. I also researched fetal surgery and decided to make an appointment at UCSF to pursue it. I called UCSF and spoke to the nurse about my situation. She took my information and said that I was too far along to have the fetal surgery since I was going to be 28 weeks during Christmas week and the surgeon was out for the holidays until Jan. 4th. Also, to have the fetal surgery, you had to have an Amniocentesis w/results prior to surgery which I hadn't had. I was very sad and again feeling all hope is against me.

Then I remembered that my due date from Stanford was quite a bit earlier than the other doctors' had for me. So I called UCSF again and this time got another nurse. This nurse was AWESOME! She had me get all my records from this pregnancy faxed over and appeared to be looking into my case further to see if there is anything they can do. In the meantime, I decided to go ahead with an Amnio just in case this nurse was able to work something out for me. The nurse also set me up to meet with the surgical team at UCSF the following week (day before Christmas Eve). I was impressed how quickly she was able to get things done. It was nice to feel like someone is working for you and not against you. So now I have an appointment for an amnio Dec 22nd and an appointment at UCSF Dec 23rd. No time to think about Christmas!

2nd Visit with High Risk OB office (MRI results day)

As I was getting ready for my appointment to meet with the high risk doctor who referred me to Stanford and did my first level II ultrasound, the phone rang. It was the Pediatric Radiologist from Stanford. He told me that he received my fetal MRI results and it's worse than they thought. Most of the baby's liver is up in the chest as well as the stomach and intestines. Since the liver is a dense organ, it doesn't allow any room for the lungs to develop. He mentioned I could terminate the pregnancy if I chose to but the only place that will do terminations this far along is in L.A. Just by him saying that, I lost it. I felt like there was no hope. I was crying so hard that I couldn't hear anymore nor talk. I quickly got off the phone and cried until my appointment which was a couple hours away.

By the time I arrived to my appointment, I was numb. The doctor who saw me was not the same doctor I saw last time and didn't seem to have his information correct. For example, he said heart was squished to left and thought maybe the hernia was a right sided hernia, etc. etc. I told him that Stanford called with the results and confirmed heart squished to right and hernia was left sided. I was now confused and didn't know where to go next.

Stanford Appointment

Had my appointments at Stanford today. First an ultra sound with the tech and then three high risk ob/gyns joined to take a look. Doctors could see the stomach up in the chest and see that the heart was squished all the way to the right side of the chest, however, they couldn't see any other organs up there. One doctor said for the heart to be squished so much that there must be more up there and that the MRI would show us.

After that I had my fetal MRI. This was scary. I had never had an MRI so I wasn't sure what to expect. They put me into this huge machine and I had to lie completely still for an hour. They kept having me take deep breaths in and hold it for short and sometimes long periods of time. I handled it well but it's not something I'd want to do again.

Next I had a fetal echo-cardiogram. By this time I was irritated. I felt I had been poked and prodded at so much already and I was hungry and tired. First a trainee looked at the baby's heart, then after an hour or so he got his supervisor, then the doctor, then the director of the department came in. They seemed to struggle getting a view of the pulmonary artery, however, all other components of the heart were working fine so they assume that one is as well. I will have to have another echo-cardiogram though to confirm. I was impressed how they didn't give up and tried their best to get all the data possible.

I was at Stanford Hospital from 9am - 4:30pm. I was hoping to meet a pediatric surgeon and see the NICU but it was too late and I just wanted to eat and get home. At this point, I still haven't had a doctor sit down with me and explain this defect in detail. I think each doctor probably thought the other doctor had done so. However, I had already read so much online that I didn't necessarily "need" that talk but still felt it should be done. I go back to the other high risk doctor who is closer to home from me next week. Hopefully he'll have the MRI results by then and I can get some more information on "my" baby's condition.

Level II Ultrasound

 AJ kissing the placenta

Today was my appointment with a high risk pregnancy doctor for my level II ultra sound. I am 23 weeks. It was confirmed baby has a Congenital Diaphragmatic Hernia. Ultra sound showed stomach up in the chest area. Dr. is referring me to Stanford for follow up testing so that does tell me this is a big deal.

I'm still learning about this "never heard of" defect and have so many questions. I'm not sure if I should be worried or not. From what I've read online, some cases are okay and some or deadly.

When I found out my baby was sick

Today I had my ultra sound to find out the baby's sex. IT'S A BOY! Which is what I wanted and already felt I knew since I had a dream I was having a boy.

A few hours after my ultra sound, my ob/gyn called me. It was a Friday afternoon (Friday the 13th at that!) and she wanted me to come see her Monday. I just knew something was wrong and demanded she tell me over the phone. She then told me that it looks as though baby has a hernia but we'll need to have a level II ultra sound to confirm....and not to worry. Well of course I WORRIED and researched fetal hernias online. I saw some references to Congential Diaphragmatic Hernia but thought, "No, that can't be the same type of hernia she's referring too?" I was thinking more along the lines of a testicle hernia or something like that. But I was still anticipating my appointment for the level II ultra sound to confirm.

What is Congenital Diaphragmatic Hernia (CDH)?

Congenital means "born with" and a hernia is a problem where something goes through a hole it is not supposed to. The hole is in baby's diaphragm. The diaphragm is a muscle that helps us to breathe and keeps the organs in the abdomen from going into the chest cavity.

This link provides a good description of CDH:

http://www.childrenshospital.org/az/Site476/mainpageS476P0.html