Opps, Misunderstanding

On Monday, October 31, we do not have an appointment with the Pediatric Neurologist.  We both misunderstood when they said Neonatologist not Neurologist.  On Monday we do have a growth ultrasound at Spectrum Maternal Fetal Medicine and then an appointment with the Neonatologist at DeVos Children's Hospital to discuss what to expect after delivery.  On Tuesday, November 8, we have an appointment with the Pediatric Neurologist, Dr. Madeline Chadehumbe.  This is a link to her credentials: http://www.helendevoschildrens.org/body.cfm?id=717&action=detail&ref=4431 .

And, as always, please keep praying!  Thank you to everyone for your thoughts, prayers, and support.

With Love,

Steve and Michele

Wrong Yet Again!

The doctor called last night with the results of the Fetal MRI.  Our baby does NOT have Schizencephaly.  They believe it is Dandy-Walker Syndrome (DWS).  DWS is not as severe as Schizencephaly so the prognosis is better.  HALLELUIAH!  They still will not know to what degree he/she will be affected until after the birth.  Once he/she is born, they will perform testing (most likely a MRI and/or CAT scan) necessary to give them more information.

The following is taken from the National Institute of Neurological Disorders and Stroke website: http://www.ninds.nih.gov/disorders/dandywalker/dandywalker.htm

What is Dandy-Walker Syndrome?

Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid-filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the area of the brain between the two cerebellar hemispheres (cerebellar vermis), and cyst formation near the lowest part of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present.

The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability and vomiting, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur. Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns.

Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system, including absence of the area made up of nerve fibers connecting the two cerebral hemispheres (corpus callosum) and malformations of the heart, face, limbs, fingers and toes.

More Links:

Here are a few more links about DWS:

http://dandywalker.org/dandy-walker-syndrome/

http://www.dandy-walker.org/

What’s Next?

On October 31st, we have a growth ultrasound (normal every 4 weeks at this point) and an appointment with the Pediatric Neurologist.  We are anxious to meet with the Pediatric Neurologist to learn more about DWS and what we might expect when our little miracle arrives!   Until then we will do our best to be patient and accept that everything happens for a reason.  My BFF, Amy (aka Auntie Amy) said it best, “Everything surrounding this pregnancy has made us all look at God and His plan.  Modern medicine is awesome but God is the ultimate one in control.”

Please keep our little miracle in your prayers!

With Love,

Steve and Michele

Maternity Pictures

On Sunday, we had a wonderful maternity session with the fabulously talented photographer, Amy Carroll (who also happens to be my bestie).  Here is a link to her blog for a preview of some of the beautiful images she captured of our growing family:
http://www.acarrollphotography.net/2011/10/michelesteve-maternity-session/

Fetal MRI

Yesterday I had a fetal MRI and let me say, it was not fun or something you want to do on your birthday. But, I am glad it is over with and pray that it will give the doctors more information on what is going on with our little miracles brain and spine. The pediatric radiologist will review the images and send them off to the pediatric neurologist who will review them and then send the results to Dr. Fee (our high risk OB). So, it will take about 5 days for us to receive any news.

Keep Praying!

The Good and The Bad

Good news and bad news yesterday. The baby does not have a hole in the heart. Now that he or she is 1 lb 14oz (10 oz up from 2 weeks ago and normal weight) they can see there is no hole. The pulmonary valve is very slightly enlarged but it is of no concern. They will do an ECHO after the baby is born to be sure but Dr. Schneider (the pediatric cardiologist) feels there will be no issues or maybe just a slight heart murmur.

The bad news is the baby most likely has Schizencephaly which is a very rare developmental birth defect in the brain. We will not know what degree of Schizencephaly the baby has until after the birth.
Here is a link with more information on Schizencephaly:
http://www.ninds.nih.gov/disorders/schizencephaly/schizencephaly.htm

Please pray that they are wrong about this too!
With Love,
Steve and Michele

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

8/28/11 ~20 weeks

Our Little Miracle!

Little One on the way!

What better time to start blogging again than when we have our first little miracle on the way?

The American Cancer Society - 2010 Relay For Life of Byron Center MI:

Please support my efforts to create a world with less cancer and more birthdays. No donations is too small, every little bit helps. Thank You!

The American Cancer Society - 2010 Relay For Life of Byron Center MI: