Tuesday, April 27, 2010

31 week Ultrasound

Doug and I went to our 31 week Ultrasound yesterday. We were pleased to hear that Joshua still has not developed any hydrocephalus. Docs say his ventricles look excellent and are well within the normal limits. His feet are definitely clubbed, and to give an idea just imagine that his toes are inches away from his shin bone. In the US they sort of look like a hook. Doug and I know that the clubbed feet are the least of our problems. Everything else is going well. I've been a little sick lately and have had little energy, but this is probably to be expected at 7 1/2 months pregnant. Only 7 more weeks to go and we get to meet our little guy.

Friday, April 9, 2010

Easter Sunday!

We had a fun Easter this year! Church, lunch, easter baskets and a thrilling egg hunt. Abby was actually old enough to participate in the fun festivities and she loooooved looking for eggs. It's amazing how quickly an almost-two yr old picks up on the concept of putting an egg in the basket. Doug and I were sneaky by taking eggs out of her basket when she wasn't looking and re-hiding them for continued fun. She didn't seem to notice or care.

At the end of the day she had about 14 eggs, a basket of goodies and probably a sore tummy from too many jelly beans. I'm sure it was worth it!

Wednesday, April 7, 2010

Our first post and an update on our babies!!

Doug and I have decided to start this blog in an attempt to keep our family and friends as updated as possible on the progress of our two little love bugs. Our first post is going to focus on our newest little one, Joshua Douglas Niemann, due to be born on June 14th, 2010.

For those who don't know, Doug and I found out at our 20 week ultrasound appointment (February 11th) that our son has a birth defect called Spina Bifida. During the first few weeks following conception, his spinal column did not close completely and his spinal membrane and spinal cord nerves pushed outward and formed a large cyst on his back. At this time, doctors do not know the cause of Spina Bifida, only that is occurs in approximately 1 out of 1000 births and is more rare in males. Just our luck!

This was by far the worst day of our lives. Doctors told us he had this defect but couldn't really give us specific details as to how severe his condition was.

To get more information and in an attempt to do as much as possible to lessen the severity of his condition, we elected to participate in a Spina Bifida study called MOMS (management of myelomeningocele study) to see if in-utero surgery and repair of his birth defect would be possible. The study is a randomized trial and 50% of moms have the in-utero surgery while the other 50% have post natal surgery. From March 1-4 we were in San Francisco at the Fetal Treatment Center having detailed diagnostic exams performed including MRI's, fetal echos and ultrasounds. After 16 doctors appointments and tests in two day, it was confirmed that Joshua's lesion is located at the L2-L5 vertebraes in his spina and that he has a moderate Chiari II Malformation of the brain. We don't know exactly how this will impact him yet but we are hopeful that the malformation's impact will be minimal.

After all of the testing, we elected to randomize in the study and by God's will we were placed into the post natal surgery group. We returned home on March 4th (where we are now) and will return to San Francisco on June 13th for a scheduled C-section June 14th and back repair on June 15th.

We have been told that babies with this Lesion level (L2-L3) often develop hydrocephalus in utero or following surgical repair. So far, he does not have any elevated fluid levels in his brain and doctor's say this is great news. We are hoping it continues this way but we know that things can change during the last trimester and following birth. If hydrocephalus does develop he will most likely need shunt surgery within the first few months of life.

Lastly, at our most recent ultrasound at 27 weeks pregnant, we were told that Joshua has clubbed feet. This condition is very common in children with Spina Bifida and we have been told that it's a fairly easy thing to correct. Usually it involves serial casting over two or so months. We shall see.

As with most things in life, we realize that we need to take things day by day. We will keep updating this blog with news of Joshua's condition and updates on our big girl Abby!