Our Journey so far

8/19/2011 (~19 weeks along)

We had our 1^st ultrasound and were very excited. They gave us the news that everything wasn’t normal. Our baby appeared to have too much fluid on the brain and an abnormal looking umbilical cord. The baby was a normal size with a normal heartbeat. They would be sending us to Spectrum Maternal Fetal Medicine because they have an ultrasound that is much more powerful to determine what is going on with our baby. We were very upset by this news but still hopeful.

8/31/2011 (~21 weeks along)

Once the technician completed the ultrasound, Dr. Susan Fee came in and told us that there was a lot more wrong with our baby than the 1^st ultrasound showed. The things she saw wrong at that time were:

· Abnormal umbilical cord

· Fluid on the brain

· Spine that is developing abnormally and looked like what they would see in babies that have Spina Bifida (meaning ‘split spine’).

· Hole in the heart and abnormal valves

· Abnormally large bladder and it wasn’t the shape that she would expect but it was filling and emptying properly.

· Rocker Feet

They felt that with all of these things wrong, our baby most likely had Trisomy 18 which is a chromosomal defect. If they survive birth, Trisomy 18 babies live hours or sometimes days. They performed an amniocentesis to confirm this diagnosis. The results for the 3 most common chromosome defects (Trisomy #13, Trisomy #18, & Down Syndrome #21) come back within 48 hours and scheduled us to come back in for a consultation 2 days later. We were devastated by this news and had very little hope that we would ever bring our little miracle home with us.

We received a call the next day that it was not Trisomy 18 as they had thought and it was not Trisomy 13 or Down Syndrome either. We would have to wait 10-14 days for the full results of the amniocentesis where they test all 23 of the chromosomes. We were glad to hear it wasn’t Trisomy 18 as they thought but still had very little hope because our baby has so many major problems.

9/14/10 (~23 weeks along)

After a long 2 weeks of waiting, they day of our appointment was finally here. They first did a growth ultrasound and the baby has a normal heartbeat and is 1lb. 4 oz. which is also normal. Dr. Fee came in and told us that she had good and bad news. The good news is that our baby has no chromosomal defect, the abnormal umbilical cord does not appear to be causing any problems, the feet do not appear to be rocker, and the bladder looks of more normal size and shape. The bad news is our baby still does have other serious health problems that need to be addressed and they don’t know yet what caused them. The problems are; excess fluid on the brain, curved spine (like Scoliosis), and hole in the heart with abnormal valves. They need to get a better look at the heart, brain, and spine to make a diagnosis and a plan. Dr. Schneider, a Pediatric Cardiologist, will do an ECHO on the baby’s heart on September 29th. An MRI has been ordered for the brain and spine but the appointment has not been set yet . Once those tests are preformed, all the doctors involved will meet to make a diagnosis and a plan. We will update this blog with new information as it becomes available.

We now have hope that we will bring our little miracle home someday! Your thoughts and prayers are greatly appreciated!

With Love,
Steve and Michele