Thursday, December 11, 2008

Everlee is Growing!!!

So we had another appointment today. Fun, Fun! Everlee's ventricules have increased a bit, they are measuring at a little more than where we were but still below the 15 mm that keeps us in the MILD stage. Dr. Asrat says the good thing is that there is still no swelling in her 3rd & 4th ventricules. Yea! Our big girl is measuring at aprox. 3lbs & 7oz, so she is right on where she needs to be. I am hoping we can still get her to 6 lbs before she is delivered. Having a little baby makes me kind of nervous, when Aubree was born it seemed like she was already a month old. The tech today was nice enough to gives us some 4d images so Aubree & I got a show from our little one. Aubree loved seeing her, I think it helped her understand that there is an actually living baby in my ever growing belly. Everlee looks to have Aubree's nose & lips with adorable chubby cheeks. She is SO cute!!!!:) I also took some time this week to have some "Belly" shots done by my extremely talented sister, Kristi. I posted a couple less revealing ones, hope none of you are offended by woman with large bellies!:)

Saturday, December 6, 2008

Happy Holidays!

Can you believe it is December??? Crazy how the time flies. Things seem to be keeping quiet here, I pray that this continues. We have had a few more appointments since my last update and things seem to have stayed the same. Yea! My Dr. says we should get to the New Year before delivering, although I am hoping to get way passed that. She said when we get to that point we will ask for more time, I am hoping at least to Jan 20th, that just makes me feel a lot more comfortable, 36 weeks doesn't sound too early. Although, Everlee is growing like crazy- I think she knows she is coming early!:)

Coordinations for her surgeries are still getting in order, still crossing our fingers that the surgery can happen at Hoag- just waiting to hear on a pediatric anesthesiologist that has privledges at Hoag.

Scott has been working like crazy and hasn't been able to come home that often, hopefully we can get him home for more than a weekend when Everlee is born..hint, hint, Shane!:) Just this morning Aubree told me she wanted her Daddy for Christmas- how sad.... but so cute! Aubree had a big week, she started preschool. She loves it and I am so happy- I was worried she was going to have lot of trouble but she is in heaven. She gets to go twice a week for 3 hours at a time. I figured it would be best to get her started before Everlee is born, I didn't want her to feel like I was getting rid of her. It also allows time for all the doctor appointments.

Well, not too much to update. I hope everyone is enjoying this time of year and not getting too caught up in the craziness. We love you all and hope to get to see those coming in town for the Holidays.

Love you ALL!!!! :)

Monday, November 17, 2008

The latest news....

In the last couple of weeks we have had a couple of appointments which were both pretty uneventful...we like uneventful!!! So far Everlee's hydrocephelas has been stable, maybe even decreased a bit. It was measuring up to 12.7 mm and now is just at 11mm. This is good- we want it to stay under 15mm. The perinatologist is back to saying that she does have a clubfoot, but he said it is very minor and can be corrected with a splint. If things stay the way they are we can expect to deliver her at 36 weeks, so we have an estimated due date of Jan 20th. Our neurosurgeon is still coordinating to have Everlee's surgery done at Hoag, I am crossing my fingers this happens. It would make it SO much easier to be in the same hospital.

In the meantime, I am just enjoying being pregnant with this highly active little girl. She is getting bigger and stronger and soon enough she will be playing and fighting with Aubree. Please keep our little girl in your prayers, by the looks of it they seem to be working!:)

I hope you are all well and can't wait to introduce this little angel/troublemaker to you all.

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 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".