Tuesday, October 28, 2008

Our Journey So Far.....

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......

Wednesday, October 1, 2008

What the world looks like upside down.....

A few weeks ago I never really understood the meaning of having your world turned upside down. Then I received a call from my OB with the dreaded news. News that made me feel sick, without hope and very lonely.... my world upside down.

We only had a weekend to enjoy the thought of our 2nd baby girl joining our family, as Scott said... We're screwed! Double the dresses, shoes, makeup and girliness- and the thought of when they start dating!!!! How quickly you wish for the those worries back when you find out your daughter will be born with Spina Bifida.

Have you ever "googled" spina bifida? I really don't recommend it. The thought of my daughter with her spine sticking out of her back, causing damage to her brain and knowing that the damage is permanent was not what I wanted to hear. I truly felt like this was a death sentence for our daughter and I really didn't feel like I was one of those "Warrior Type" women who was ready to take on this challenge. Luckily, I quickly came across a group on babycenter.com made up of moms of children with spina bifida. Thru them I have learned so much about the different variations & degree of the this birth defect and what it will be like to have this little girl.

I have researched all that I can and read every possible sight but the the best thing I could have done was getting in touch with these amazing moms. Everlee will be born with Spina Bifida, she will have challenges that typical kids don't have to deal with but there are so many things that we can do for her to help her live a happy life. This is the beginning of a big adventure, one that we will be joining Everlee on. She is already a strong little girl that I can tell is going to "wow" us all. I no longer feel helpless but empowered and blessed to have this little girl in our lives.

Please check in with us and I will do my best to keep you all updated on our baby girls "Big Adventure".