I don't have a lot of new information, but we have had a very encouraging weekend. WE ARE FEELING YOUR THOUGHTS AND PRAYERS! We have also been able to do quite a bit of research on what a diagnosis of spina bifida means. I have given up on searching all the medical websites until we have more information after seeing Dr. Moriarty (pediatric neurosurgeon) next Wednesday, March 24. We have found much comfort and encouragement from finding blogs of other families who have been "dealt our card." It is very humbling to know that others have gotten through this and most that we have read have surpassed what their doctors thought they could do. I was also given the name of a book written by a lady in Louisville who has a son with Spina Bifida. He saw all the same doctors we will be seeing, which is very wonderful. His diagnosis was very grim, but he has surpassed what they all thought, and is truly a MIRACLE. Her words are providing much comfort for us (mom and I both have a copy of the book). Although we won't know the extent of our little guy's case until he arrives, we are very hopeful with what information we have.
The nurse practitioner with Dr. Dunn's office (Cindy McGlothlen) was so kind to call me Friday evening. She had just gotten the report from Dr. Pietrantoni (my perinatologist, high risk OB). For reasons I now know, I have not yet gotten to see Dr. Dunn so far in my pregnancy. All but 2 times, and many times that I was seen while pregnant with Paisley, I have seen the nurse practitioner. For some this may be discouraging, but Cindy is such a wonderful woman and doctor, and I have fully trusted her expertise. Because we have been able to develop this relationship over many visits, she felt it necessary to call as soon as she heard the news and received the report from Dr. P. Her phone call could not have come at a better time. She was able to go over the report with me and give me some new information that I was desperately craving. What Dr. P had to say... the meningocoele (spina bifida defect that is NOT open and usually NOT containing nerve endings to be damaged) is "very small" and located at S1-S2 vertebrates (very low on the spine, below leg muscle weakness/damage). This is the rarest form of spina bifida, but not the most severe. Surgery with a meningocoele is usually not as urgent (possible not immediately like we were thinking) and not as complicated because the vertebrate and nerves are where they should be. This should be more like a cyst that just needs to be removed without all the nerves to repair. The most severe form of spina bifida is called a myelomeningocoele, if you want to do any research on the difference between the two. He also classified the hysdrocephalus as "mild-moderate." We want any word MILD we can have!!!! This again can also fluctuate so we are PRAYING that the fluid has decreased when I go back to see Dr. P in April.
Church yesterday was also a very comforting experience. We can feel the prayers, so KEEP THEM COMING FOR A LONG TIME!!! We are receiving many emails, cards, and letters as well, and they are very much appreciated. I have already started a binder/scrapbook of sorts to keep everything in. When he is old enough to understand, I cannot wait to share with him what a wonderful support of family and friends he had praying for him while he was still in his mommy's belly and quite some time after.
Keep the encouraging messages and thoughts coming...they are helping so much!
My email address... email@example.com OR firstname.lastname@example.org
Rodney's email address... email@example.com
Our home address... 4955 Hwy 64 NW Depauw, IN 47115
We hope to decide on a name very soon, so you can have a NAME to pray for specifically. We are working on it!
I cannot say THANK YOU enough for your prayers. Several people have shared that they are "saying a prayer, and then another one, and a little while later, another one"...so KEEP PRAYING for all of us!!!
Please forward on to anyone you think may want to know...we want as many people as possible to know the correct information of our situation so they can PRAY!
~Meghan, Rodney, and Paisley~