Friday, May 21, 2010

This will be a long post, but the Cliff Notes version is that today's appointment could not have gone better!

We got to the Pediatric Cardiology Department at U of M about 7:45 am. We got checked in and were started with the ultrasound/echocardiography before our scheduled 8:00 appointment. The ultrasound lasted nearly two hours. They looked at the heart in great detail to determine exactly what was wrong and what was right. The baby was very active and spent some time not cooperating. When they were finished, we went into a conference room with the Pediatric Cardiologist, the nearly finished with school Pediatric Cardiologist and the Nurse Practioner.

The problems with the heart are as follows:
- The tricuspid valve (the valve between the right atrium and right ventricle if you are trying to remember your heart diagrams from health class) did not form and is basically missing (Medical Term - Tricuspid Atresia). There is a little flap of tissue, but it is not a valve and does not work.
- The right ventricle is undersized.
- There is a hole between the left and right ventricles (Medical Term - Ventricular Septal Defect or VSD)
- The Aorta and Pulmonary Artery both exit the right ventricle (Medical Term - Double Output Right Ventricle or DORV). The Aorta is supposed to output from the left ventricle.

As I have posted earlier, problems with the right side of the heart are much less common than problems with the left side. Today we found out that problems with the right side of the heart are easier to fix and are actually better. The Pediatric Cardiologist said that she would choose right heart problems over left heart problems any day! Health class reminder - The right side of the heart sends blood to the lungs and the left side sends blood out to the body. The right side doesn't pump with as much pressure. So, the strongest part of the baby's heart is fine.

Right now, the baby's system is plumbed all wrong. There are three surgeries required to fix the problem:

Surgery 1 - Performed 1 to 7 days after birth
This surgery gets some blood to the lungs at the proper pressure. Our baby will need a reduction in pressure to protect the blood vessels. This will be acheived by narrowing the existing Pulmonary Artery or by putting in a tube to bypass the Pulmonary Artery. Recovery time in hospital is 10 days to 4 weeks.

Surgery 2 - Performed 4 to 6 months after birth
This surgery sends the blood from the top part of the body directly to the lungs, bypassing the right side of the heart. This blood is now going to the lungs with the normal pressure from the pumping of the left ventricle. Recovery time in hospital is about a week.

Surgery 3 - Performed 18 months to 3 years after birth
This surgery will now send all of the blood directly to the lungs, completely bypassing the right side of the heart.

We were able to ask all of the questions we have been wondering about for the past 8 weeks:

Q: Will the baby be born in Ann Arbor?
A: That is the plan. Then we will both be in the same place. If things go too fast and the baby is born in Grand Rapids, he will be sent to Ann Arbor, but it would not be a huge issue threatening his life.

Q: Will he be taken by C-Section?
A: It does not sound like he would unless there are other problems.

Q: Will I be induced early?
A: If so, not by much unless there are other problems. Because this affects his lungs and his heart, the better formed and more mature his lungs, the better.

Q: What is the success rate with this process of surgeries?
A: Around 75% successful.

Q: Will we get to hold him after he is born?
A: Most likely. He will get checked out right away, but the way he is plumbed, he will have enough oxygen when he is born. The problem will be that the blood going to his lungs will be under too much pressure and will cause damage if left untreated.

Q: What are his chances of having a heart attack before birth?
A: No more than a normal baby.

Q: Can I breast feed him?
A: Yes. He will not get regular milk or formula until after the surgery sometime. I can pump and they will feed him with that when he is ready for milk and when he is well enough to start eating, he can be breast fed.

Q: What is his future prognosis?
A: If he survives the surgeries, he will probably look and act completely normal (ignoring the scars and weird family related quirks of course). He will be able to play recreational sports, but may tire more easily. He probably won't be an Olympic athlete, but seeing as we don't have any in either of our families - this is not a big concern.

We met with the U of M Congenital Heart Center social worker as well. She told us about what lodging options were available and gave us some other useful information.

I will still go to my doctor in Grand Rapids and check in with Ann Arbor as needed. My next Grand Rapids appointment is June 8th and the next Ann Arbor appointment is July 1st.

The next Ann Arbor appointment will include the following:
- Meet with genetic counseling
- Meet with U of M obstetrics people
- Have ultrasound with obstetrics people
- Have echocardiography with Pediatrics Cardiologist
- Meet with surgeon
- Meet with social worker

The cool part is that they scheduled all of this Ann Arbor stuff on the same day so we can get all of this done in one trip. The people at U of M seem to be very caring and willing to work extra hard to make it as easy on us as possible. Phil and I were VERY impressed. This baby will have some maize and blue outfits even if we are Spartans!

We thank God for the wonderful news and our wonderful support. Thank you for all of your prayers! We are so blessed to have so many wonderful people supporting us. When my Mom had cancer, she always said that there was one benefit. Knowing that people love you and care for you and your family is the best medicine there is!

If you want to learn more about all of the heart stuff with pictures and without my commentary, go to the following website:

http://www.med.umich.edu/mott/chc/patient_con_tri.html

Monday, May 17, 2010

Today I had my last "Before Ann Arbor" checkup. Everything is still good. I passed my gestational diabetes test and I am not anemic. I was so excited to pass a test! The baby's heartrate is still good and there is no new fluid around his heart. He is still moving and getting stronger and I am measuring right at 26 weeks like I am supposed to be.

I got to see a 4D ultrasound of the baby today. My eyes teared up to see a front-on facial view of our baby. The 4D ultrasound allows you to see a "real" picture of the baby - face, lips, nose, hands with more than bones, etc. I have a great picture of his hand up over his eye and the umbilical cord running next to his hand. It was absolutely amazing. The ultrasound is in real time (the 4th dimension) and I got to see him open and close his mouth.

As the kids would say, I am "nervcited" about going to Ann Arbor. I am looking forward to getting some real answers and hoping there is some positive news. We will keep you posted.

Tuesday, May 11, 2010

Last Friday, we got the news that we are scheduled for an appointment in Ann Arbor on Friday, May 21st. They will be sending us our itinerary. The appointment is at 8:00 am and we were told that we should plan on the entire day. At least we should learn something if we are there all day long!

I had another doctor's appointment yesterday. The baby is still growing just fine and the heart is the same. His heart rate was fine and he is still moving like he is training for some kind of fetus olympics. Phil and Ella have both felt him move now!

Hopefully, we will have some real news after our Ann Arbor appointment. I have another quick ultrasound appointment at my regular obstetrician next Monday to make sure things are still good before we head to Ann Arbor. So far, so good!

Tuesday, April 27, 2010

Today was another good appointment. The baby is right on track for growth. The ultrasound measured him at 23 weeks and he is 23 weeks, 1 day. There are no new issues with his heart. There is no additional fluid and it is functioning the same as it has been. As far as can be seen, all of the parts of the heart and necessary vessels are there, just in the wrong place or too small and not functioning properly. At least we aren't missing pieces!

My doctor is now going to refer us to Ann Arbor so we can meet with the pediatric cardiologist. It will be interesting to see how long it takes to get an appointment. Hopefully, then we will be able to get some information on what surgeries would be possible, possible outcomes, what to expect and all of those other unknowns we have only been guessing at.

I am feeling great. The baby is moving a lot and his movements are getting noticeably stronger. After our previous losses, movement is a very wonderful thing!

Neither Phil nor I have thought far enough into the future to consider bringing this baby home, but we are hopeful and know that we will be able to handle whatever happens. We are heading to Ann Arbor and we really didn't think we would make it this far, so who knows!

Thanks again for all of your thoughts and prayers. We couldn't make it through this without them.

Friday, April 9, 2010

We had our doctor's appointment today. We had an ultrasound and the baby looks fine with the exception of his heart. His heart rate was 158, which is right where it is supposed to be. There is no additional fluid around his heart, which is one of the things that I was very worried about. Everything was as good as we could have hoped!

Our next appointment is April 27th to check on the heart again and assess his growth. He will be 23 weeks at this time. If everything looks good at this appointment, the doctor will get us connected with the pediatric cardiologists at the University of Michigan.

I have been doing some research on the pediatric cardiology program at U of M. It is amazing and we are very lucky to be so close. The surgeon at U of M has pioneered a lot of the work that surgeons all over the world are performing for Hypoplastic Left Heart Syndrome. In the early 1980's, this condition was nearly always fatal. Now the surgeon has a success rate of 80% to 85%.

Our baby has Hypoplastic Right Heart Syndrome, which is much less common and therefore does not have the track record with successful procedures. At least we are in the right place and will not have to travel halfway across the country to get to a qualified hospital.

Thank you for all of your prayers and I will keep you posted on any new information!

Tuesday, April 6, 2010

If you would like me to send you an email notice when I create a new blog post, please send me an email at doughertyjennifer@att.net.

I am sure that there is a better way to do this, but my skills in this area are VERY limited. Thanks!

Monday, April 5, 2010

We got the news on the complete amniocentesis results and everything looks good. That makes two pieces of good news in a row.

The baby is moving around a lot now. I don't have to sit still and concentrate to feel him. You would think this was my first pregnancy by how exciting it is!