Tuesday, August 30, 2011

No news is...

We got the amnio results today. It isn't good.

She has trisomy 9. Full trisomy 9 which is worse than partial or mosaic. I don't know much about it. We are meeting with the doctor on Thursday to discuss it.

The thing about it is, neither the doctor nor the genetic counselor have ever seen a Trisomy 9 baby make it past 8 weeks in the pregnancy. I'm 20 weeks. Everyone is puzzled as to what to expect.

The chances of her surviving the pregnancy are slim, the outcome of life if she is born is probably slimmer. Needless to say we are heartbroken and we find ourselves in yet another situation where we just have to wait and see.

We are okay. Really we are. We are just having to process the news and well... wait. If anything becomes clearer after meeting with the doctors who have no experience with a case like ours I will keep everyone posted.

Thanks for the prayers.

Friday, August 26, 2011

I Heart Gracie

Just wanting to jot down real quick. We saw the heart doctor this afternoon and things looked the same... which is good. Though her heart has a ventricle problem it is still growing proportionately and if it keeps doing that, the heart surgery would be minimally invasive (they would go through her thigh and use a balloon to stretch a part of the heart or something as opposed to open heart surgery...)

I am probably describing all of these things so wrong and medical aficionados all over the world are cringing but oh well.

Anyway so doctor's appointment today=good news so far. ;)

Specialists in Torture

I called the doctor today for the amnio results and they said the nurse had checked a wrong box and so the results wouldn't be in until Tuesday. I feel like I should get my money back or something.

I mean I know I'm not the only person anxiously waiting for news and results but SERIOUSLY. Waiting has to be the worst part of this.

On a more positive side we met with a developmental doctor yesterday and it was such a good experience. He was just very optimistic for Gracie and really helped us to see what life could be like and how GOOD life could still be. I truly appreciated that after all the doom and gloom diagnoses we've been getting.

The Children's hospital is also AMAZING. I mean we walked in and there was this guy dressed up popping popcorn and there was this huge flying contraption with all kinds of animated characters on it and balloons and crazy murals and it was just super cool. It's too bad children go there because they are sick because otherwise it is a pretty awesome place for kids.

Anyway sorry to keep everyone on pins and needles. Let you know more when I know more.

Tuesday, August 23, 2011

Unreal Experiences

So I had the amniocentesis today. It was a little trippy.

I couldn't think about the whole needle aspect of the ordeal so I just watched the ultrasound screen on the wall and it was crazy to see little Gracie just floating along and all of a sudden this pointy thing pokes on in.

I wonder if she wondered 'what in the HECK is that?'

It went really well and was something of a miracle because she is normally CRAZY in there. I think she is practicing for some sort of circus acrobat trick but when we did the amnio she stayed incredibly still.

I just watched her little heart beating and kept saying in my mind 'Just hold still Belles'. And she did. I guess she knows that one of my requirements as a parent is perfect obedience. I'm glad we have this established early on.

We won't know the results of the amnio for a couple of days so I will keep you posted.

Friday, August 19, 2011

Waiters, Needles, and Priceless Legos

Last night I had a dream wherein Gracie's heart had stopped... the seriousness of the dream seemed to be offset by the fact that I was at a restaurant called shooters where you could either order food or have the waiter deliver your baby.

We went to two doc appointments yesterday and her heart was beating away just fine. It was mainly more of the same except they talked about doing an amniocentesis (a procedure where they use a long needle to extract some amniotic fluid... sounds fun.) The point of the procedure would be to determine if there are any chromosomal abnormalities like down syndrome, or trisomy 13, things of that nature.

I think we will have it done to see where everything stands. A lot of times with a baby with multiple problems there can be a chromosome problem. With down syndrome she would be fine. With something like trisomy 13, she would be expected to live a few hours to a few months.

Basically no matter what they tell us they always tell us it's just not certain. So we wait.

The perinatal doctor is a little... dry sometimes. I asked him if the amniocentesis would hurt.. really long needle remember? He just smiled and said oh no it won't hurt. I said, 'really? because it sounds like it would hurt'. He said, 'well only a little-- just a prick'.

I will let you know.

In other news:

Want to see the most expensive Lego in the world?

Why? You ask? It's not plated in gold or diamonds is it? No. This baby is worth $400 dollars when covered in snot and up your four year old's nose.

Yep. It just keeps getting better and better. ;)

Tuesday, August 16, 2011

Donation Follow Up

Just wanted to say that we set up the official account. You can go into any Wells Fargo Bank in the US and say I would like to make a deposit in the Gracie Belle Ray Donation Account in Flower Mound Texas and they will be able to look it up and deposit it directly.

Of course if you would prefer mail, just email me and I will email you my mailing address.

We are so humbled and grateful to those who are so willing to donate for our Gracie girl. And I will also say that over the past few days I have felt a very strong feeling of peace and comfort. I know without a doubt that it is a direct result of all of your prayers.

Thank you for everything. Our hearts are full.

Emma and Fam

Monday, August 15, 2011

MRI scan

So here she is. If you look at the bottom of her back where her rump is you can see the spine looking like a u. It shouldn't be curved and sticking out like that.

But can't you tell she's already a doll?

Friends of Gracie

In response to the numerous offers of support and monetary aid, we have opened a savings account for Gracie Belle to be used solely for her medical expenses.
Please do not feel pressure to contribute. We just want it to be there and proper so that the donations go exactly where they are supposed to.

Please also know that if the time comes when little Gracie no longer has need of these funds, then the unused monies will be distributed to all the contributors, or if they prefer, donated to spina bifida research.

We can't express how deep our gratitude is for your support. We love you.

Just email me at emmajaneray@gmail.com and we can work out how to transfer funds. Thank you!

Dear Friends and Family,

Let me first say that we are overwhelmed by the outpouring of love and prayers and concern from all of you. It is amazing to know how much support we and out little Gracie Belle have.

This post serves two purposes: one being, I want everyone to know the specifics of the situation and two being, I am fairly unpredictable right now and seeing as I can burst into tears while ordering pizza over the phone, it is best to just communicate in typed words. (And yes, the pizza guy was very polite and said he was sorry which I appreciated.)

So. We found out on Thursday that we are FINALLY having a girl. Salvation was mine for just a moment. Then we found out she has spina bifida (a condition where the spine is growing outside of the body), hydrocephalous (water on the brain associated with the spina bifida), and a heart condition.

My visions of my pink little girl began slipping through my fingers.

But a few days, a few doctor's appointments, and several hundred dollars later, it's beginning to process and we are starting to rally.

We had a heart echo wherein we learned that Gracie's aortic valve in her heart is malformed. It is causing the left ventricle to swell and causing a back splash of blood. I mean, there is more to it but I don't know the words and let's just say it is not good.

At least that is what the doctor's always seem to say- like it is scripted or something:

It is not good.

I have to go in for a heart echo every two weeks right now to monitor the heart for heart failure. The next eight weeks are critical. If she makes it through, she should make it to birth. The Doctor said she is hopeful that she will. Once Gracie is born it could go one of two ways. Either the heart will have grown just enough that they can repair the valve and it will hopefully get back to business as usual or the left side of her heart will begin to atrophy and they will have to somehow divert the flow and just use the right side of her heart.

That sounds bad. I know. But apparently the right side alone can be used and live a fairly normal life with running and skipping- probably not sports- but a normal kid life.

However, the spina bifida will probably keep her from running and skipping. The lesion is pretty high on her spine and the odds of her being able to walk or have bowel control are pretty low.

The water on her brain is also not good. The outcome will probably be that she will have learning disabilities. The MRI doctor said she will have a personality and be able to speak and learn and possibly go to school- she just might have problems like dyslexia or in some cases her right brain may not be able to communicate with her left brain.

The biggest problem right now is everything is unknown. her prognosis is good for surviving the pregnancy so we are holding to that. We just don't know what the condition of the heart will be or how severe her spine problems will be.

The minute she is born she is going to be whisked away to have heart surgery. Normally she would be whisked away to have spine surgery but they have to fix her heart first or else she wouldn't survive the spine surgery. Soon after she recovers from heart surgery, then she will have the spine surgery and once she recovers from that. . . then, hopefully little Gracie Belle will be able to come home.

There are difficult days ahead and the outcome is far from certain but we have hope and we truly believe that miracles can happen so please don't stop praying.

The boys are taking it in stride. They pray for Gracie in every prayer. One of James' best friends at school was a little girl in a wheelchair. Though it breaks our hearts to think of the possibility of a wheelchair, James has tender memories of his friend and I know he will be such a loving, protective brother. James will start first grade next week and we have enrolled Harrison in a five day preschool program so hopefully that will give them routine and keep them busy. Bennett is of course blissfully unaware, but he has started sleeping through the night- magically- and I am not so sure if it isn't his way of supporting me.

It is strange because I literally go from being a stay at home mom who rarely leaves the house to someone with seventeen appointments in one month. I even bought a calendar.

We are hopeful and prayerful and know that God is very aware of us and our trials at this time. We have the utmost faith in Gracie and know that she is strong and will make it through. You should see the hard times she gives the MRI and heart echo techs with how wiggly she is.

Kendall calls her his little fighter. Thanks to all of you for being in her side of the ring.