It started about 3 weeks ago.....We had an ultrasound at St Vincents Womens hospital in Indianapolis. Why? Because I am over 35 yrs of age & having twins. So, during our first visit the tech was able to tell us we were expecting 2 boys & they were fraternal. She also noticed that Baby A (known as Carson) had one kidney holding more liquid than the other. The doctor wanted to watch it and had us schedule a return visit in 2 weeks. At this point, we are thinking the baby will outgrow the problem & it doesn't appear to be anything serious.
At our return appt in mid-November, the doctor again noticed the problem with the kidney & bowel. They also noticed a slight under development in the cerebral vermis (located at the base of the cerebellum). It appears to be a form of Dandy Walker Syndrome. Luckily, our Carson does not show other characteristics such as a cyst on the vermis or additional fluid in the brain. However, we do not know the range of complications that we may experience after birth. The doctors do believe it to be at the mild end of the spectrum which may mean developmental delays. After some discussion & recommendations, we decided to schedule a visit with a fetal cardiologist. It is common that children with Dandy Walker Syndrome have heart defects, but they are not related in any way.
Today we met with the fetal cardiologist and upon review she found a moderate to large hole between the right & left ventricle. It may close some before delivery, but will not close completely. Therefore, open heart surgery will be required at 4-6 months. This discovery sparked some additional conversations and the doctor recommended we do an amniocentesis. Luckily, we were able to go to lunch & return to the office for the procedure. It was slightly uncomfortable, but the little guy cooperated and it only took about 15 minutes from start to finish. We will have some preliminary results on Friday afternoon & all the details from the test in about 2 weeks.
Plans have changed drastically.....I will now deliver in Indianapolis with a scheduled C-section. I am 31 weeks and the doctors want me to get to 38 weeks. We are looking at mid January for delivery. Of course, I will also be switching my care from my current doctor in Richmond to Indianapolis too.
What a whirlwind of information. We have tried to keep the kids informed and keep ourselves from over analyzing the information, but it is difficult at times. We are truly grateful for these little ones, and can only hope & pray for a healthy outcome. Your thoughts & prayers are greatly appreciated. Our family is very blessed to have such wonderful friends and family to support us. Thank you and we love you!
2 comments:
Hey Rae - great job on your blog page! Wow - how do you ever find the time to do everything you do? We will be praying for your family. I'm sure that is unsettling news to hear, but God is an awesome God and He CAN fix these problems!! If it isn't in His plan to fix 'em, He will be sure to give you and John strength and wisdom to handle them!! Thanks for the update, good to know so we can pray!!
Diana
Rae, we are so praying for you all durning this exciting but uncertain time. We sure think a lot of you guys and so look forward to meeting these little guys. You have such a great family and I know that the Lord has placed this with you two because you are some of the strongest people out there. God works in great ways and He knows far more then we do. We love you all!!!
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