Update

It has been a while since I last posted. I hope that everyone had a wonderful holiday! Jason and I went back to Mississippi for Christmas. While we were home, a few family friends gave us a baby shower. It was so wonderful to celebrate little Addison without thinking about CDH. Everyone at home is so supportive.

I went to the doctor yesterday and today. Yesterday, they checked Addison's growth. She is about 3lbs 2 ozs and has no fluid build up in in chest or abdomen. We actually saw quite a bit of lung tissue on the right side and she is practice breathing. The only negative is that my amniotic fluid level is starting to creep up. They are going to continue to watch it and if it continues to creep up, they are going to put me on bed rest for the remainder of the pregnancy.

Today, they found sugar in my urine and my blood sugar was on the high side of normal. The doctor told me to cut out all refined sugar and limit my carb intake over the next two weeks and they will test it again.

Doctor's Visit

I went to the doctor for my glucose test and the weekly check up on the baby. My glucose test came back negative and Addison is growing and has no fluid build up in her chest or abdomen. Currently, her estimated weight is 2 lbs 9 oz. They said that she is very active and doing well.

Jason and I have decided to go to UCSF for the delivery and after care for Addison. I will have to go to San Francisco in my 36th week and stay until the induction.

UCSF Update

We went to San Francisco on Monday night to meet with the UCSF team on Tuesday. After all the tests, it was determined that the LHR that was given to us in Cincinnati was lower than the one calculated at UCSF. At UCSF, the LHR was in the range .9 to 1.4. After a lot if thought and prayer, Jason and I decided that with her LHR being higher; it was not worth the risk of the surgery. We are praying that GOD will continue to bless us and give her the strength to grow and develop.

I thank everyone for your thoughts and prayers. It really helps having a group behind you that understands and can really support you!

I go to the doctor today for my glucose test and then on Friday for her weekly check up and stress test. Keep us in your prayers!

Off to San Francisco

During our visit at Cincinnati, the doctors recommended that we talk with UCSF about the Tracheal Occlusion surgery. We were contacted by the nurse at UCSF yesterday about the procedure and were asked to come out for a consultation. Jason and I decided to go for the consultation and determine if we wanted to proceed with the procedure. The only catch is that we have the consultation on December 16th and will have to make a decision immediately. The last day that they can do the procedure is December 18th since I will be 28 weeks on Friday, December 19th.

It is really hard to plan for this since we are not sure what we want to do about the procedure and will be traveling across the country. If we decide not to have the procedure, we will come back on December 17th; if we decide to have the procedure, I will not be coming back to Atlanta until late January.

26 weeks

We went to Children's of Cincinnati yesterday for our initial consultation. During the day, I had an echo, ultrasound, and MRI performed. We also met with the family support group, a geneticist, and all doctors that are assigned to the CDH team.

At the conclusion of the day, we attended a team meeting with the head of the CDH team, the geneticist, and the CDH neonatal surgeon. During the meeting we reviewed the images and test results from the day and were told that these tests indicated that Addison had LHR of .83 which puts her in the high risk category. They suggested that we talk to USF about the Tracheal Occlusion surgery and referred us to USF for a consultation.

We are currently trying to decide whether to have the surgery which has to be done between 26 -28 weeks or to manage her care after birth. It seems like there is no right answer or evidence to direct you to one way or the other.

I also went to my fetal doctor today for the biweekly checkup and ultrasound. They were able to perform a 3d/4d ultrasound and got amazing pictures of our little princess. She looks exactly like her daddy.

Amniocentesis

We heard yesterday back from the doctor on the amniocentesis results. Everything is normal. When I heard those words, I just wanted to jump through the phone and hug the doctor and pray to GOD all at the same time.

I guess that God is hearing the numerous prayers for my little princess.

I will be going to Cincinnati next week for my first appointment. I am hoping that I will finally have some answers and a plan. The not knowing is driving me nuts. It is like being on a roller coaster. I have the days where I just know that it will all work out and she will be OK, and then there are other days when I wonder what if it is not.

24 Weeks

On Tuesday November 25th, we went to the pediatric cardiologist for a check up. During the visit, we were told that her pulmonary vein on the left side was developed and functioning normally, and the right side was functioning but at a reduced capacity. He also told us that her heart is strong, functioning normally, and growing appropriately, and he did not see any reason for us to see him again until she was born.

We have not heard the results from the amniocentesis, so I am a little stressed out. I found out that we have been referred to Children's Hospital in Cincinnati for the remainder of her prenatal care and delivery. We will have to go for a visit in a week or two.

23 weeks

We went for the amniocentesis and a check up today. My little girl was extremely active and growing on schedule. Today, the sonogram showed that her liver and stomach were both in her chest. We still have not gotten the results from the MRI; the doctor told us that the doctor here in Atlanta did not feel that her results were acurate, so she sent the MRI pictures to a doctor in Cincinnati for further review. The doctor told us that he hopes to have the results from the Amnio fish and the LHR numbers before the Thanksgiving holiday.

He told us that since the AFP test that was done at 16 weeks was negative that there is a high likelihood that the Amnio would be fine as well. Finally, a peice of good news!!!

22 weeks

Jason and I decided on a name for our little princess. We decided on Virginia Addison. The Virginia is for her two great grandmothers, her grandmother, and her mom, and the Addison means "awesome" which this little one is already. We figured that she deserved the namesake of 3 generations of strong women to fight the battle that is laid out before her. As far as the doctors, we are in a holding pattern; i feel like we do not much more than we did two weeks ago. We still do not have the results from the MRI.

I feel like we are on a roller coaster that will never end. All I can do is pray and hope for the best. The doctor called and told us that he needed to perform amniocentesis to rule out any congenital defects. The appointment is scheduled for November 21st.

21 weeks

On November 6th, we had an MRI to check her organ and lung development. During the entire procedure, she was very active. I guess the noise bothered her. We were told that we would hear something back in a week or so regarding the results.

20 Weeks

I had an appointment with the Fetal Diagnostic Center for a high resolution sonogram on October 27, 2008. During the sonogram, it was confirmed that we were having a little girl and that she had CDH. It was explained to Jason and I that she had a hole in her diaphragm which was allowing her stomach and potentially other abdominal organs to move into her chest. Due to the presence of the organs, her lungs were cramped and may not develop. We left this appointment with another appointment in a month for a check up and an appointment with the pediatric cardiologist. It seemed that we had so many more questions but no answers.

On October 29th, we went to the pediatric cardiologist to have an echo performed on the baby. During the entire procedure, she kept playing hide and seek with the doctor. I guess it is a good sign that she is so active. During this appointment, we were told that her heart is structurally normal and seems to be growing well, but he did not see what he had hoped for in the pulmonary artery. He said it could be either that it was not developing correctly or it was just too early to see. He scheduled a follow up appointment in 4 weeks to check her progress.

19 weeks

On October 23, 2008, Jason and I went to have a routine sonogram. We were so excited to see our little one and find out whether it was a boy or girl. During the sonogram, the tech grab my arm and told me that something was wrong. I could not breathe and almost fainted. After meeting with the doctor, we were told that they suspected a congenital diaphragmatic hernia (CDH). The doctor referred us to another doctor for further testing. At the time, I was in shock, and Ihad no idea what CDH was or what it meant for our little one.