After an ultrasound showing that Everlee has a birth defect called Spina Bifida Myelomeningocele, we got started on a journey. Multiple doctor appointments, ultrasounds, blood tests, amnio and a MRI.
After learning of Everlee's diagnoses we went thru the steps to discover that her lesion is at S2-3 location. This is good because it hopefully means she has less nerve damage than if it were higher on the spine. We then put our name in for a clinical trial called the Mom (Management of Myelomeningocele) Study, by being part of this study there was a chance that we may be able to have prenatal surgery (surgery while she is still in the womb) that could help reduce the need for a brain shunt. We were excluded from the study when they confirmed how low the lesion was because the risk of preterm labor is high, it may do more harm than good for her.
Being excluded from the study was a quite a disappointment because I felt like it was the only thing we could do to be proactive. I felt like it was the only thing I could do to- to gain some control. This is probably what I struggle with most- I have no control and can do nothing to help my baby right now.
So far the best day so far was the day of our MRI. Our neurosurgeon, Dr. Loudon, is awesome. He really made feel like we were on the same page, he wants what we want- not just the outcome but the experience. He agreed with the importance of keeping Everlee and I together. I was so nervous that they were going to transport her to CHOC but Dr. Loudon said that he would come to us and perform her surgeries at HOAG so we could stay together. Yeah for Dr. Loudon! :) He also ruled out her having clubfeet, another yea!!!! It was also discovered that her hydrocephalus (the swelling of the ventricles in her brain) increased a bit to 12.7mm, still mild but will have to be monitored. Because of this he said that he plans on me delivering between 33-35 weeks. Yikes!!!!
A week or so later we met with our amazing Perinatologist, Dr. Asrat. His dry sense of humor and no fluff personality makes me feel at ease. He tells you like it is and I appreciate that SO much. He did let me know that because she is looking so good (okay besides the whole SB & Hydro thing) that he thinks we can wait to deliver around 36 weeks. Much better!!!!:)
Our team of doctors are the best- I feel confident that we have met the team that is going to keep our little girl safe. But we have a lot more to do and we will have to wait & see on a lot of things- that is what I am learning. Everything is a wait and see.
Aubree is already in love with her little sister, she asks to see her pictures and still thinks if she looks in my belly button she can see her. A couple of nights ago she slapped my stomach and said she was giving her sister a "High 5"! These are the moments I cherish. When we first found out the news of Everlee I wanted to know why we were being punished, why God chose my family- my daughter. I have learned that he is not punishing us but blessing us, because of her I feel that I will be a better mother & wife- a better person. These teachings of Everlee will continue and for that I am SO grateful.
For now our journey will continue and the adventure goes on......
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2 comments:
Karlee,
I think you might be happy to know that a young woman and her husband came to me two years ago for classes in birth hypnosis, since she herself has spina bifida, and wasn't able to have an epidural for her baby's birth. I am guessing her spina bifida was in the same location as your Everlee's. She didn't have any visible paralysis, but she did have minor bladder issues (what pregnant woman doesn't?!). However, even with all of that, she is now the mother of a healthy baby girl, that she gave birth to naturally/vaginally, and if she hadn't mentioned her spina bifida, I would never have guessed there was anything 'different' about her physically.
I also recently worked with a couple who was seeing Dr. Asrat for their high-risk pregnancy, and they too loved him. He was definitely the voice of reason for them as well, and prevented other caregivers from being too hasty in inducing their baby.
All my very, very best to you and Scott and your sweet Everlee as she grows and develops in the best way possible for her.
Love,
Carole Thorpe
Dear Karlee,
I know for sure that you have what it will take to meet this challenge. And with the help of great doctors and your really wonderful family and friends, I know you will not only survive, but you, Scott, Aubree, and Everlee (wonderful name, by the way) will be truly enriched by the experiences and challenges that you are no doubt going to face.
I hope you know that we all love you and are praying for the best possible outcome. I have no doubt that Everlee will be a little star, and will be blessed with very special abilities and talents (as all the Dicksons seem to have!) Those things, not her physical challenges, will be the things that will gain the world's attention.
I am looking forward to your continuing with the blog, Karlee. What a great way to keep everyone in touch as you go through this journey.
We love you and are thinking about you often,
Debi & Tom
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