Although I never intended to write every day, I thought I would provide a short update to share some exciting news.
Brad spoke with the director of the cord blood transfusion program at Duke, and she suggested it would be great if we could deliver at the hospital. She said the doctor who does the cord blood transfusions likes to do the first transfusion as soon after birth as possible, so there is a real benefit to delivering there.
After the conversation, Brad and I were sold on the idea of delivering at Duke! While I am sad about leaving my OB and our pediatric neurosurgeon, I definitely think that delivering at Duke will be the right thing for Claire. Since I almost certainly will need to deliver by c-section (due to the projected size of Claire's head), we will have a little more flexibility with scheduling.
Now that the decision has been made, all we have to do is coordinate the logistics. It's sure to be a lot of work, but I feel like we are moving in the right direction. I also believe that this is yet another answer to all of the prayers that have been going up for Claire. Please keep them coming!
Hi! I wanted to come introduce myself to you all. Your story sounds so much like ours was. Our son, Elijah, was born in December 2007 with congenital hydrocephalus due to aqueductal stenosis. At delivery we found that he also had an encephalocele. Prior to delivery his ventricles had reached a combined measurement over 85mm. We also drove down to Duke for the delivery so that Elijah could have the cord blood transfusion. We had a scheduled C-section at Duke. We had as good an experience as you can have in that situation. We loved the doctors who attended to me and my c-section. The chief resident stitched me up(something I was a bit nervous about), but almost 3 years later and you can barely even see the scar. The people in the Intensive Care Nursery were fantastic. And we still make the 3 hour drive to Duke when Elijah has his neuro check-ups because we absolutely love Dr. Grant. Dr. Fuchs did a surgery on Elijah in January 2008 and we love him, too! We are so glad we made the decisions we did to deliver at Duke and have the cord blood transfusion. Elijah will be 3 in December and no one can even tell he has a shunt or ever had anything wrong with him, aside from some scars on the back of his head from the encephalocele. He's a happy, healthy, walking, talking toddler and we're so thankful every day for our "miracle baby". If you'd like to read the blog I kept during our pregnancy, you can read it at enduringthetest.blogspot.com and our family blog for everything after Elijah's first year is at lollipopkids5.blogspot.com. I know how much of a rollercoaster this whole journey is. Just know that you all are in the best of hands at Duke. You should also check out the website fetalhydrocephalus.com. It was started by the mom whose son, Owen, had the first cord blood transfusion for hydrocephalus at Duke.
ReplyDeleteHi Amy! I am so glad that you started this blog. On one hand I wanted to keep asking you for updates, but on the other hand, this is a personal experience and don't want to intrude too much by asking. I am so glad that you finally have some answers and can start preparing for the birth at Duke. I am still praying for you, Brad and Claire.
ReplyDeleteI didn't deliver at Duke but we did make the long drive from the very top of Ohio to Duke for our little Cayman's stem cell infusion. She was a month and a half old. It felt great to have those stem cells circulating her body and doing something that we believed would help her. We're expecting again and I am looking into storing baby #2's cord blood in Cayman's favor. Money will be the factor on whether we will carry out that decision or not. We'll see.
ReplyDeleteJennifer & Kristen,
ReplyDeleteAmy and I have read both of your blogs and both of them give us a lot of hope. Your kids are amazing. Thanks for sharing your stories. I hope this blog ends up with a lot of good news regarding Claire.
Thanks,
Brad
Hi there...I got your blog address from Jen today and thought I drop by and say hello. My son is Owen from the website FetalHydrocephalus.com. If there are ever any questions I can answer, or if you ever just need a sympathetic ear - please feel free to hit the "Contact Us" page on the website to send me an email.
ReplyDeleteWe too, went to Duke to get Matthew's cord blood transfusion. We, however, flew from Nebraska to do it. We are currently looking into transfusion #2 for Matthew. These kids are tough!! Matthew is a delight to our family. Best wishes and excited to find your blog!
ReplyDeleteJill
I just was looking at the fetal hydrocephalus site and saw that you at your blog. Welcome to the world of hydrocephalus. My daughter Norah also has hydrocephalus and has been to Duke twice. I wish I would have started my blog while I was still pregnant, I have found sharing to be very helpful and healing. It looks like you have also found some excellent blogs to follow and give you encouragement and hope. I look forward to following your blog.
ReplyDeleteJen, Norah is so cute. I just watched the video of her crawling! Do you remember what her ventricle sizes were while you were pregnant?
ReplyDeleteNorah's vents were 11 @ 19 weeks, 14mm @ 23 weeks, 27mm @ 31 weeks, and 31mm @36 weeks (the day I delivered). Her head size always measure at least two weeks ahead, by 36 weeks it was measuring 42 weeks. Here's the link to the page where I talk about Norah's hydro,
ReplyDeletehttp://werealljustseeds.blogspot.com/p/norahs-hydrocephalus.html
We'll send some prayer for Claire.
Hello! Jennifer (up there at the top of the comment section) pointed me in the direction of your blog :)
ReplyDeleteMy daughter, Elisabeth, was born with congenital hydrocephalus in Sept of 2007....her 3rd birthday is next week!
We live in Washington state, but when she was 6 weeks old we traveled to Duke so that she could get a stem cell transfusion. In fact, they still have a reserve of her cells and we are highly considering taking her back this fall or winter to get the rest of them.
I can remember quite clearly being where you are now. It is a scary time because you can't know just what to expect.
If you have any questions about anything please feel free to email me greenstan@charter.net.
Take care and we will be praying for your sweet Claire Elizabeth :)