We saw the pediactric cardiologist the following day for our first echo. I was thinking a short appointment as they were only looking at the heart. Again, wrong! During the echo, video is taken of each chamber of the heart and measured to look at size, then they go back and look at blood flow through each chamber. Sounds relatively easy....as long as the baby stays still and is in a good position. It took the ultrasound tech about an hour to get all the pictures, then the cardiologist comes to review and possibly take a couple more.
Afterward we sat down with the cariologist and he explained the diagnosis and talked about the procedures that would need to happen for the baby to survive. It is three staged surgery called the Fontane Sequence. We'll get back to that later....
I think I was a little in shock after sitting down with the doctor. We didn't have many questions at the time, but we had a follow-up echo at Loyola in a month. The echo looked the same and when we sat down with the doctor he told us he was referring us to Advocate Christ Children's Hospital in Oak Lawn. They had the best children's cardiac surgery ward in the area. So our next step was to set up an appoinment with the pediactric cardiologist there.
As we started talking to people about the diagnosis we found out that a couple at our church had been through this process and one of our parent's friends knows the surgeon. What a small world! We were able to sit down with the couple from church and just talk through some questions. With all the uncertainty, I think our mind was eased seeing their boy running around with tons of energy.
The third echo was done at Advocate Christ hospital. There were more videos of the heart and blood flow. After, we talked a little bit about our options, the first surgery and transferring all care to the Advocate.
We found out that the doctors prefer natural birth to limit complications, the first surgery will take place between day 2 and day 5 and we'd be transferring full care around 36 weeks. After our next appointment we'll be taking a tour of the facility and meeting the surgeon. Stayed tuned!
Saturday, December 28, 2013
Friday, December 13, 2013
The new diagnosis
Where were we? Oh right, AFP. After the results from the amnio came back normal, I was retested to see if the first test was just a fluke. Not the case. My levels were still high and this could mean possibility of cancer in the ovaries or liver. Pile it on....we can take it!!!!! From all the previous ultrasounds, they had ruled out the ovaries. Next step would be blood test for liver enzymes and a liver ultrasound.
But first, we were back at Loyola for our second ultrasound to check on the growth of the heart. What we had been told up to this point was that doctors don't start looking at the heart until about twenty three weeks. I was twenty two weeks and we were hoping that the previous ultrasound was just too early to tell. Foolish...just foolish thinking. I'm lucky to have Mike because he always keeps me grounded. The night before our appointment, he just said to me, "I just want you to be prepared for worst case scenario, no changes in the heart". And although I was still hopeful, I was prepared for what we would find out. The left side of the heart was very underdeveloped. Medical term for this condition is Hypoplastic Left Heart Syndrome. After we were finished, our OB referred us to the pediatric cardiology department for an echocardiogram to verify their finding.
For those that don't know, an echocardiogram (also called at echo) is a type of ultrasound that uses high pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off different parts of the heart. These echoes are turned into moving pictures of the heart that can be seen on a video screen. It looks at blood flow through all chambers of the heart. Trust me....I'm learning a lot of new words too through this process.
P.S. Liver enzymes and ultrasound came back normal. Another win, although we really have no idea why my AFP levels are so high. But a win none the less.
But first, we were back at Loyola for our second ultrasound to check on the growth of the heart. What we had been told up to this point was that doctors don't start looking at the heart until about twenty three weeks. I was twenty two weeks and we were hoping that the previous ultrasound was just too early to tell. Foolish...just foolish thinking. I'm lucky to have Mike because he always keeps me grounded. The night before our appointment, he just said to me, "I just want you to be prepared for worst case scenario, no changes in the heart". And although I was still hopeful, I was prepared for what we would find out. The left side of the heart was very underdeveloped. Medical term for this condition is Hypoplastic Left Heart Syndrome. After we were finished, our OB referred us to the pediatric cardiology department for an echocardiogram to verify their finding.
For those that don't know, an echocardiogram (also called at echo) is a type of ultrasound that uses high pitched sound waves that are sent through a device called a transducer. The device picks up echoes of the sound waves as they bounce off different parts of the heart. These echoes are turned into moving pictures of the heart that can be seen on a video screen. It looks at blood flow through all chambers of the heart. Trust me....I'm learning a lot of new words too through this process.
P.S. Liver enzymes and ultrasound came back normal. Another win, although we really have no idea why my AFP levels are so high. But a win none the less.
Wednesday, December 4, 2013
Alpha-fetoprotein (aka AFP)
So, we made through our first trimester...the hardest part in our journey so far. And I think both Mike and I breathed a sigh of relief. It should be smooth sailing from here, right?
At the end of September we started some of the screening tests. Mike and I had decided we would do the normal tests but skip the amniocentesis as there was a risk of miscarriage. The first handful of tests came back normal and all seemed good. Then I received the call from the doctor about my level of Alpha-fetoprotein being higher than normal. He stated this could be an indicator of neural tube defect or brain defect and wanted me to get an ultrasound at the maternal fetal outpatient center at Loyola. I was told it was probably nothing but to be safe we should check it out.
About two weeks later, we had the ultrasound done and we found no indication of neural tube or brain defect. What we did find was a number of other 'markers' that were not very good for the baby.
The 'markers' were humurous and femur bones were measuring shorter than growth charts show for 18 weeks, the left side of the heart was very underdeveloped and even though there was no sign of neural tube or brain defect, my AFP level was nine times higher than normal levels. To say the least, I was a mess. Hardest part over?, yeah right.
We sat down with a genetic counselor and went over what everything meant. Best case scenerio was Downs Syndrome. Worst case scenario was we would not carry to term. While speaking with the genetic counselor, she mentioned the AFP level could indicate there was still something wrong with the baby or something wrong with me and that amniocentsis would be able to rule out a large number of issues. We decided to go ahead with the test. Within 3 weeks we had results: preliminary and full chromosome results were normal, the amnio fluid tested at a normal level for AFP and the micro-array indicated no gene defects. Praise the Lord!!!! We were scheduled to come back in a month to check on the progress of the heart development. All we could do at this point was prayer for growth!
At the end of September we started some of the screening tests. Mike and I had decided we would do the normal tests but skip the amniocentesis as there was a risk of miscarriage. The first handful of tests came back normal and all seemed good. Then I received the call from the doctor about my level of Alpha-fetoprotein being higher than normal. He stated this could be an indicator of neural tube defect or brain defect and wanted me to get an ultrasound at the maternal fetal outpatient center at Loyola. I was told it was probably nothing but to be safe we should check it out.
About two weeks later, we had the ultrasound done and we found no indication of neural tube or brain defect. What we did find was a number of other 'markers' that were not very good for the baby.
The 'markers' were humurous and femur bones were measuring shorter than growth charts show for 18 weeks, the left side of the heart was very underdeveloped and even though there was no sign of neural tube or brain defect, my AFP level was nine times higher than normal levels. To say the least, I was a mess. Hardest part over?, yeah right.
We sat down with a genetic counselor and went over what everything meant. Best case scenerio was Downs Syndrome. Worst case scenario was we would not carry to term. While speaking with the genetic counselor, she mentioned the AFP level could indicate there was still something wrong with the baby or something wrong with me and that amniocentsis would be able to rule out a large number of issues. We decided to go ahead with the test. Within 3 weeks we had results: preliminary and full chromosome results were normal, the amnio fluid tested at a normal level for AFP and the micro-array indicated no gene defects. Praise the Lord!!!! We were scheduled to come back in a month to check on the progress of the heart development. All we could do at this point was prayer for growth!
Sunday, December 1, 2013
It's positive
To me, humor really is the best medicine for the soul. Without being able to laugh with Mike through all the hardships, I'm not sure either of us would be in the state of mind we are now. With that being said, please know that some of the jokes/comments I make are our way of dealing with tough times.
If I learned anything through this process, it's don't take a pregnancy test at night. When it's positive you can't finish that bottle of wine you just opened. So on the night of July 4th, I can only assume I really believed the test would be negative when I decided to take one. To my surprise, it wasn't. I walked into the other room to show Mike and I said, "Don't get to excited, it's probably a dud (aka Dudley). I give it about 3 weeks and we'll be back to normal". And with the news, we decided to take a slightly different, more relaxed approach. We waited a week to call the doctor and two weeks before going in for our first ultrasound. With each appointment, I prepared myself for the inevitable.....there's been no growth, no heartbeat. But with each ultrasound we saw growth and for the first time I heard a healthy heartbeat. By the third ultrasound we were approaching 10 weeks, I almost couldn't believe it. We were two weeks from safely making it through the first trimester. As we started to get a little excited, we still waited until almost 15 weeks to start telling people. Up until this point everything was going well. I was feeling good, still working out and just going about our daily activities. Little did we know what was ahead of us.
If I learned anything through this process, it's don't take a pregnancy test at night. When it's positive you can't finish that bottle of wine you just opened. So on the night of July 4th, I can only assume I really believed the test would be negative when I decided to take one. To my surprise, it wasn't. I walked into the other room to show Mike and I said, "Don't get to excited, it's probably a dud (aka Dudley). I give it about 3 weeks and we'll be back to normal". And with the news, we decided to take a slightly different, more relaxed approach. We waited a week to call the doctor and two weeks before going in for our first ultrasound. With each appointment, I prepared myself for the inevitable.....there's been no growth, no heartbeat. But with each ultrasound we saw growth and for the first time I heard a healthy heartbeat. By the third ultrasound we were approaching 10 weeks, I almost couldn't believe it. We were two weeks from safely making it through the first trimester. As we started to get a little excited, we still waited until almost 15 weeks to start telling people. Up until this point everything was going well. I was feeling good, still working out and just going about our daily activities. Little did we know what was ahead of us.
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