We have an appointment this Friday at the Children's Hospital of Philadelphia. We are flying out on Thursday. At their suggestion, we booked one way tickets. They want me to be prepared to stay if they decide they want to monitor me and the baby. But, hopefully they will be able to send me home after the testing.
We start our day on Friday morning at 8:30 with a fetal MRI, then they will do a fetal echo cardiogram, then a high level ultrasound. At 4:00 pm we meet with the team of doctors to go over all the test results and discuss our options.
We both still feel positive and strong, and hope that we will walk away from CHOP with peace of mind. Please continue to pray for our little one!
Tuesday, April 28, 2009
Monday, April 27, 2009
Weekly Update
Our little one is still holding strong, however we did see a small amount of fluid on one side of the heart. The amount is not real concerning at this time, but of course needs to be monitored.Dr. Hill suggested that we take a trip to the Children's Hospital of Philadelphia (CHOP) to get a second opinion (and hopefully peace of mind). CHOP is the expert on this and they have much more advanced testing available, so we made the call to CHOP. Our doctor is faxing over our file, and I am waiting for them to call me back so we can schedule an appointment.
Despite this recommendation, we still feel strong that everything is going to be okay.
I swear the baby gets cuter every week! The umbilical cord is a bit in front of the baby's face in the 3D picture, but it's still amazing how you can see the facial features. We saw the baby move its mouth and swallow amniotic fluid. It was awesome!
I'll publish another post tomorrow as soon as I hear from CHOP.
Sunday, April 26, 2009
6 months!
Here are are a few pictures from this weekend. I never thought I would see the inside of my belly button! Bill says it looks like my belly has a nose. :)
We have our next ultrasound appointment tomorrow at 3:00 p.m. I'll post an update tomorrow.
Monday, April 20, 2009
Continued good news!
We had our "weekly" ultrasound appointment this morning. There is no change, which means good news. The mass seems to be the same size, and is still pushing the heart over, but the baby shows no sign of stress, and no sign of hydrops! It was obviously a great relief for both of us, and it keeps us going until our next appointment on Monday the 27th.
Thank you for all your continued support and prayers!
This past weekend, I actually saw my belly move as the baby was moving and kicking around. It was awesome! I still get so excited over every movement the baby makes. Friday I will be 6 months pregnant! Check back this weekend for updated baby bump pics.
Thank you for all your continued support and prayers!
This past weekend, I actually saw my belly move as the baby was moving and kicking around. It was awesome! I still get so excited over every movement the baby makes. Friday I will be 6 months pregnant! Check back this weekend for updated baby bump pics.
Friday, April 10, 2009
Pictures
Here are pictures that were taken yesterday. In the top photo, Bill thinks the baby was picking its nose.
I just love the picture of the bottom of the foot for some reason. Look Grandpa Roy, the baby has my big feet!! :) 
Thursday, April 9, 2009
Good News!
Our ultrasound appointment went well! Although the mass did not shrink, it also did not get any bigger. Most importantly, there is no sign of hydrops forming and no sign of stress on the baby or its organs. Sooooo, we continue to pray and be positive. Our next ultrasound is scheduled for Monday, April 20 at 8:00 a.m. (just over a week from now) and they will check the status once again.
We want to thank everyone for all your thoughts and prayers. It means more to us than you can even know! We feel very blessed and confident that with continued prayers and positive thoughts our baby is going to overcome the challenges this condition can bring.
Have a wonderful Easter weekend!
All our love,
Bill, Stacey, and Baby
. . . and no, we didn't find out the sex :)
We want to thank everyone for all your thoughts and prayers. It means more to us than you can even know! We feel very blessed and confident that with continued prayers and positive thoughts our baby is going to overcome the challenges this condition can bring.
Have a wonderful Easter weekend!
All our love,
Bill, Stacey, and Baby
. . . and no, we didn't find out the sex :)
Friday, April 3, 2009
We need your prayers!
We went for our normal, scheduled ultrasound yesterday and received some devastating news. They detected a problem with the baby’s lung and we had to go to a specialist for a Level II ultrasound this morning.
Our baby has Congenital Cystic Adenomatoid Malformation or CCAM for short. The condition is categorized into four types. Our baby has Type 2. There is a mass on the baby’s left lung, in the lower probe. It is quite large, and because of its size it is pushing the heart to the right side of the body. As of right now, the heart and all other major organs look great and are not in any immediate danger. The heartbeat is great, and the baby’s measurements are right on track. The baby weighs about 1 pound. With all that being said, at this point the condition can go one of two ways:
Best case scenario:
Since this was the first discovery of the mass, there is no way to know if it is growing or shrinking. We go back at 3:30 pm next Thursday to evaluate the progress/status of the mass. If the mass shrinks and no other complications arise throughout the remainder of the pregnancy, we will deliver the baby in Tampa and the baby will have lung surgery to remove the mass. It will either be done immediately after birth or within 1 – 2 weeks. This will depend on the baby’s condition at the time of birth, and how well the baby is breathing. The majority of babies that have the surgery end up being very normal, healthy, and active children.
Worst case scenario:
The baby could develop hydrops, (massive fluid retention), which results in fetal heart failure. There is an 80% chance of developing hydrops when the size of the mass is 1.6 or larger. Unfortunately, our baby’s mass is currently 1.6. If this occurs, we will then fly to Philadelphia to consult with the Children’s Hospital that specializes in this condition. It will then be determined if we will undergo fetal surgery to remove the lung mass in utero. If the baby develops hydrops prior to birth, the only chance of survival would be to undergo fetal surgery.
The mass typically plateaus at about 27 – 28 weeks. We are 21 weeks today, so we just need to pray that the mass shrinks in the next 6 weeks, and the baby does not develop hydrops.
This condition is not real common. In our surrounding 4 counties they only see about 3 – 4 cases per year. It is not genetic nor hereditary. It was not caused by anything we did. There is nothing I can do to improve the condition (bed rest, etc).
We are both trying to stay positive and strong. Please keep us in your prayers. We need to be surrounded by positive thoughts! Here are a few 3D pictures of the baby. It’s amazing how detailed it is and you can see the leg, foot, arm, and hand. The baby is soooo cute! Who do you think it looks like?
If you are interested in learning more about the condition, I recommend watching the series of videos on the website link below. There’s a link on the front page titled, “Watch our breathing easier video”
http://www.chop.edu/consumer/jsp/division/generic.jsp
Our baby has Congenital Cystic Adenomatoid Malformation or CCAM for short. The condition is categorized into four types. Our baby has Type 2. There is a mass on the baby’s left lung, in the lower probe. It is quite large, and because of its size it is pushing the heart to the right side of the body. As of right now, the heart and all other major organs look great and are not in any immediate danger. The heartbeat is great, and the baby’s measurements are right on track. The baby weighs about 1 pound. With all that being said, at this point the condition can go one of two ways:
Best case scenario:
Since this was the first discovery of the mass, there is no way to know if it is growing or shrinking. We go back at 3:30 pm next Thursday to evaluate the progress/status of the mass. If the mass shrinks and no other complications arise throughout the remainder of the pregnancy, we will deliver the baby in Tampa and the baby will have lung surgery to remove the mass. It will either be done immediately after birth or within 1 – 2 weeks. This will depend on the baby’s condition at the time of birth, and how well the baby is breathing. The majority of babies that have the surgery end up being very normal, healthy, and active children.
Worst case scenario:
The baby could develop hydrops, (massive fluid retention), which results in fetal heart failure. There is an 80% chance of developing hydrops when the size of the mass is 1.6 or larger. Unfortunately, our baby’s mass is currently 1.6. If this occurs, we will then fly to Philadelphia to consult with the Children’s Hospital that specializes in this condition. It will then be determined if we will undergo fetal surgery to remove the lung mass in utero. If the baby develops hydrops prior to birth, the only chance of survival would be to undergo fetal surgery.
The mass typically plateaus at about 27 – 28 weeks. We are 21 weeks today, so we just need to pray that the mass shrinks in the next 6 weeks, and the baby does not develop hydrops.
This condition is not real common. In our surrounding 4 counties they only see about 3 – 4 cases per year. It is not genetic nor hereditary. It was not caused by anything we did. There is nothing I can do to improve the condition (bed rest, etc).
We are both trying to stay positive and strong. Please keep us in your prayers. We need to be surrounded by positive thoughts! Here are a few 3D pictures of the baby. It’s amazing how detailed it is and you can see the leg, foot, arm, and hand. The baby is soooo cute! Who do you think it looks like?
If you are interested in learning more about the condition, I recommend watching the series of videos on the website link below. There’s a link on the front page titled, “Watch our breathing easier video”
http://www.chop.edu/consumer/jsp/division/generic.jsp
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