The Long Overdo Update

I would like to formally introduce you all to our daughter

Hazel Lynette Reed.

This is a MRI picture taken at our last appointment at Boston Childrens Hospital. I love this picture because she is wrestling her umbilical cord and it looks like she's smiling. Unfortuntaely you can also see some of her deformities. They have diagnosed her with a variation of holoprosencephaly which basically means there is so much water on the brain (all of the white) that a brain did not develop. In addition she does not have a nose. I know, it appears as if she has one, but that is her upper lip. Her nostrils, or what should have been her nostrils, are located over her eyes. If you can see the protrusion on her forehead you have located one of her nostrils. Lastly, she has a kinked brain stem. The brain stem controls many of our innate reactions such as breathing and swallowing so you can imagine how important it is.

It's difficult to believe that we just started our 3rd trimester. Some days are really good and we are able to keep a very clear perspective and be grateful for the perfect daughter we have been given. Other days are really bad and I struggle to even get out of bed. It's hard to know that every day is one day less with her physically. Some days I think I have so much to look forward to and then others I am bitter that I am spending my pregnancy looking at caskets and headstones.

From here on out the Doctors can make the decision to take her at anytime based on her wellness and mine. I'm very afraid because I don't feel ready to part with her. I don't know if I ever will. However I do have faith that when it happens Heavenly Father's peace and comfort will not fail us. It hasn't failed us yet.

The Doctors have recommended that we use this time to parent Hazel and do things with her that we would have normally done with her throughout her life. So I would like to introduce you to the newest member of our family...

This is Gidget Brie Reed aka our new puppy.

(I always promised Brie I would name our first born after her so here you go.) We would have given Hazel a puppy at some point because every child should have a dog so we adopted Gidget. We have had her for 6 weeks and she is 4 months old. She is a bassett/doxen mix or a bashound. Actually she's just naughty. If you have seen the movie Marley & Me you have met our dog. There is nothing she will not chew and swallow, no furniture she will not throw up on, and strongly believes that potty training does not apply to her. This is not a great picture, but I can only take one when she's sleeping because otherwise she doesn't stop moving. I have to say she is a lot fo fun and has been a huge blessing in our lives right now. She keeps us busy and get's us out of the house on days when we don't want to confront the world. She's also a great cuddler at night and a good playmate to Brockie.

Lastly, congratulations to the newest graduates in our family. My Mom recently finished her Bachelor's degree and and Travis finished his Master's. They will both be walking in May. I am so proud of them. Travis will most likely begin his second Master's program this summer to become certified in Administration. Good for that guy. My brother Anders will also be graduating from Coast Guard boot camp at the end of this month and will be stationed in Portsmouth, New Hampshire soon. Yea! Another place to vacation near the beach and outlets.

I know I should be better about updating, but I make no promises. I will however post some pictures of me and Hazel aka my belly. I will not post pictures of my cankles so don't even ask.

Again, I just wanted to thank everyone for their prayers and support at this time. We feel very loved and blessed to have such great family and friends watching out for us.

Unknown Diagnosis

After many attempts at diagnosing our baby's symptoms the results are officially in and she has an unknown diagnosis. All they can really tell us is that it is not genetic or chromosomal and they have ruled out all trisomy's and tubal defects. Unfortunately the testing raised more questions than answers and we are at a dead end.

The plan is to continue to do ultrasounds every 3 weeks to monitor the progression of her hydrocephalus and single umbilical artery. If she makes it to the third trimester, they may attempt to do shunting while she is still in utero to give her more of a chance at life. The prognosis is still very poor, but they can't give us much to go on.

So with the very few details I have let me tell you what I do know. We have our daughter right now and for now we are happy. It doesn't mean we are are ignoring the future, we are just content with what we have now. We will deal with whatever comes our way when it is time. And at that time, Travis has promised me a puppy so I know it will be ok.

We will keep everyone updated and thank you for your prayers. Also, if anyone has any great suggestions for names we need one asap!

Edward's Syndrome

Well we finally have something concrete to share, good news and bad news. Good news is:

IT'S A GIRL!

Bad news is our baby most likely has

Trisomy 18 or Edward's Syndrome.

We will know preliminary results from the amniocentesis by Tuesday and final results by Saturday. What we do know is our baby has increased hydrocephalus (fluid on the brain), a missing vessel cord, a deformed right wrist (which she may or may not have her hand or fingers), a clubbed right foot, suspected rocker-bottom left foot, and her nose is still on or near her forehead. That's actually just silly, that's not where your nose belongs. She does however have a strong heart beat and a healthy body weight- just like her parents.

Edward's syndrome has a very high fetal fatality rate. If she does make it to term it's most likely that she will be stillborn. And lastly if she does survive the birth, her life expectancy is a year or less, usually 15 days or less.

We are in the midst of testing, genetic counseling, and processing what all of this means. We have big decisions to make within the next few weeks. If we can ask you to continue to pray for our baby we would really appreciate it. Also, if you wouldn't mind praying for us we would be eternally grateful. We feel very confident that Heavenly Father will answer our prayers in regards to what we need to do.

We are of course devastated and yet we are still proud parents. We choose to believe that our daughter is so righteous that she just needed to come for her body. She's made it 17 weeks so our goal is just to be able to hold our daughter, preferablly in this life, but we can settle for the next. We somewhat feel like dead beat parents knowing that our Grandparents will be babysitting our child in the next life for a while until we get there, but all of our Grandparents are great people so we know she will be well cared for and loved.

Again, thank you for your prayers and concern. We are just going to lay low for a while until we get our feet under us. We'll blog again when we have a complete diagnosis. Until then please know we have absolute faith in our Heavenly Father's plan and feel peaceful knowing that we have been entrusted with such a special girl.

We Need a Miracle

I have quite literally had years to think about how we would announce this to all of our friends and family, but it never occurred to me it would be this way. So...you guessed it.

WE'RE PREGNANT!

We were ready to begin fertility treatments in the fall and it turned out that our "vacation insemination" aka trip to Europe worked. You can only imagine how thrilled we were after trying for so long. We thought our only hurdle would be hearing a heartbeat due to miscarrying in the past. We never even considered there might be other things to worry about.

As it turns out our baby has some abnormalities that are very concerning to the Doctors and us. It has too much fluid on the brain which isn't draining. Right now the specialist has said it is too early to know anything conclusively. In 3 weeks the baby's brain and skull will have developed enough to have a better picture of exactly what's going on. However if the fluid does not drain, this could be very detrimental to the development of the baby's brain and spinal cord.

We are very hopeful with the Doctors reassurance that this may still rectify itself and the fluid may drain. This is probably really bad but if not, our house came with a great wheel chair ramp. Sorry, we really have to keep a sense of humor about some of this.We are just asking people to pray on behalf of our baby, that the fluid will drain and that the baby can have the best quality of life possible. On the 10th of October we will be fasting for our baby's health and would really appreciate it if you could join us.

Thank you again. We are so blessed to have friends and family we can count on when we need them.

Our House!!!

We have a home!!!

We just began the process of house hunting last week and we quickly learned that Travis and I have different expectations and needs. But after some weeping, wailing, and gnashing of teeth... we walked into this house and knew it was OUR home. Apparently so did three other couples. So we did the dance. We engaged in a bidding war and just found out WE WON!

http://www.zingding.com/6227170

So we are getting our inspections done this week and should hopefully close by September 22nd! Pray for us.

Erin Go Bragh!

I have avoided wading through our vacation pictures long enough. I am going to try and post pictures that everyone can find interesting or that I look good in, let's be honest.

We began what we have fondly named the "You're Welcome Europe" tour (more explanation on the name later) in Dingle, Ireland. Dingle is the western most point of Europe and is fairly rural and very authentic. As witnessed by what we saw out of window from our B&B.

We rented a car because it's the best way to get around. TINY streets. Not wide.

Odd feeling driving on the wrong side of the road. It definitely takes conscious thought to stay there. Luckily, the rental car was nice enough to post this sign in the driver's side window. Obviously this must be an issue for others also.

I would definitely move to Dingle. It had an adorable harbor and was near the beach. It also has an albino dolphin named Fungii. Just a fun fact.

We drove the Slea Head Loop which has some amazing views. This picture was taken at 11:00 pm at night. The sun finally set about 20 minutes later. That was crazy to me.

Token animal picture: Just in case you were wondering how you would tell your sheep from your neighbors the answer is paint. You color code your livestock. Fabulous idea. We should do that with children.

If I could have remained on this cliff the rest of my life, I would have been happy. It was absolutely gorgeous. Ireland has the best grass I have ever! I could have made a small bed of grass and dried twigs and been very satisfied.

After Dingle we headed to....

Al-lo!

We're two weeks in and I don't have pictures to post, but it feels like it going fast. I have found my true calling in life. I was meant to be Euro trash. I am so good at being a vagabond. Kinda scary.

We loved Ireland, London, Rome, Florence was ok, the Cinque Terre is amazing, Nice is a lot of fun if they didn speak that dirty pig latin aka french, and Barcelona is turning out to be great. We're going to watch the Tour de France tomorrow and check out some flamenco dancing and tapas.

Will post pictures when I can. Feeling just a little to old to be staying in a hostel, even if it for the night. I'll explain later.

Chao!