Friday, December 18, 2009

Welcome to Holland....

Someone posted this on the forum I belong to and it really touched me and I thought I would share it with everyone else.


Welcome to Holland" By Emily Perl Kingsley, 1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, December 1, 2009

My UltraSound/Doc App.

So yesterday was another ultrasound and doctor's appointment that had actually went good for once! I was extremely shocked at the measurements because it was quite a bit of difference from two weeks ago. So her arms,legs, and stomach measured at 29 weeks which is the original due date of Feb 18. and her head is still measuring small at about 27 weeks so they take all the measurements and average them out which put her at my due date Feb 26 which the doctor decided to change and stick with. Her weight is also above 27 weeks she is at 2 lbs 9oz so that is a big change from two weeks ago.

I went ahead and got the H1N1 vaccine today since it passes on to the baby and would vaccinate her 6 months after birth since I am worried about taking a week old baby on a air plan in the middle of winter and flu season.

Our next ultrasound is December 14 and not to much more then that going on.

Wednesday, November 25, 2009

Please Pray!

This isn't actually for Emma but I feel like there are so many that read this and pray for her that we could send some of those prayer else where too. A lady named Aggie that is on the Spina Bifida forum that I belong to just had a little girl Catherine who had to go into surgery for a revision on the shunt they just placed in and she did not make it. If everyone could please just say a prayer for her and their family.

It would mean allot to me! Thanks everyone for reading.

Tuesday, November 17, 2009

Very neat wanted to share: SPINA BIFIDA AWARENESS

I was excited when I found this because I really wanted to find something to participate in helping spread awareness and raising money to understand this disease better so here it is...

So we just missed the WALK-N-ROLL for Spina Bifida and it was the first time for them to do it here in Arizona. So I just wanted to say next year we will for sure participate in this to help raise money and spread awareness. I thought it was important to let everyone else out there know about this even though it's a year away for next year.

Welcome to the Spina Bifida Association of Arizona, a nonprofit 501(c)3 organization working to enhance the quality of life for those living with Spina Bifida as well as promoting the prevention.

2009 Walk-n-Roll for Spina Bifida
Dear Participants, Donors, & Sponsors:

Thank you all for the time, money and support you gave on October 31st and before to help make our first annual Walk-N-Roll for Spina Bifida successful! Because of your dedication and work we were able to collect over $31,000 and counting! We are excited to add this new event to the current line of events that we provide here in Arizona.

The Spina Bifida Association of Arizona is dedicated in promoting the awareness of Spina Bifida as well as helping make life a little easier for all those affected. Now because of all your hard work we will be able to improve the programs and services provided.

We are grateful for the generosity of all our sponsors that helped make this event possible. With the help of our presenting sponsor, SBGenetics along with all other sponsors we were able to end Spina Bifida Awareness month with a bang. Thank you Hard Rock Café AZ, Trader Joes, Dunkin Donuts, TropicalSno as well as all other sponsors who made this event possible.

We are also grateful for the support of all the volunteers that helped with the setup and logistics of the event, including all board of directors with their tireless efforts.

Ben Scanlan
Chair, SBAAZ Board of Directors

Doctor's appointment

So yesterday we had our doctor's appointment, which really started off asking me question about medical history and if I have had any problems so far. Then we started talking about my lovely due date again and I told her when I actually sat down and thought about ovulation date, then we started talking about the ultra sound and measurement's so if we went by the due date of Feb 16 she would be 16 days behind which make her 6 more days behind then she was at the MOM's study when we had ultra sound done there (which has been a month now). BUT....if we use the MOM's study due date of March 1 that put's her I think 4 days behind which isn't so concerning. So what this means is that the want to monitor her closely and make sure she doesn't keep getting farther behind which could cause concern that something else could be wrong.

So I will be going in ever two weeks for an ultra sound to check where she is at, I will be going back in on Nov 30 for ultra sound and then again on Dec 16 for the MOM's study. So we need to pray that she doesn't get any further behind then what she is and if she stays on track of just falling behind the same amount of days all the way through then we are ok.

She did say usually what happens the abdomen will show the smallest measurement which actually her head did which usually is opposite. Her abdomen is showing at about 24 weeks and her other body parts are a little over 24 weeks and her head at 23 weeks. So she said it could just be the case with the wrong due date at this point but as long as she doesn't keep going further back. Her ventricles have increased since the MOM's study as well they where a 12 and now it's at 14 so lets hope that doesn't get to much worse. Side note: that is to be expected with the head growing from what the doctor had said and still not concerning.

Well other then that everything else looks

Saturday, November 14, 2009


Now this picture will have to do until I go over to my Mom's house to use her scanner but I couldn't wait to share this picture because it is SOOO cute! It totally looks like she is smiling at us.

So the Ultra sound went good, but I have learned something very important about Emma that I have come to the conclusion of and that is she will be 50x more stubborn then her brother and I will tell you why...So far every ultra sound we have when they go to look at her face she will put an arm, a hand and yesterday she decided to curl up into a little ball a put her feet in front of her face. The tech had already gotten all the pictures she needed but was trying to get us some good pictures to print out for us and Emma didn't want to cooperate so the tech gave up. Now that has happened three time already, which goes to show that she isn't even born yet and she is already getting her way. I am in for some trouble!!

So a doctor had to come in to verify the techs work and said the main thing they are looking at was the heart and it looks GREAT! She also said that her measurement are looking Great too and she is growing very well she weights 1 LBS 8 oz but she is averaging at 24 weeks and 6 day so the tech said she is about 2 weeks behind the due date of 2/16/10 so I guess that goes to say it's a good thing we are sticking with the mom's study due date then. Oh well...

I will put more pictures up soon.

Wednesday, November 11, 2009

Just a small note : )

I just want to say already there are so many people who love our little girl and she hasn't even come into our world. Nick and I are so lucky to surround our selves by all these loving people.

I know Emma will feel the same way too!

Oh and Nick has this Friday off so I rescheduled my ultra sound so now he will for sure be going to that, and my step mother I guess you could call her because that's basically who is : )(and I mean that in a very loving way <3)is throughing Emma a shower with her side of the family and my mom wont be able to make the diaper party on the 12th so she is throughing one in January with the lovely gals from her work so that is very exciting to know all these people care and want to help out.

Monday, November 9, 2009

Baby Shower/ Diaper Party!!

So Nick and I thought it would be fun to do a Diaper Party so everyone can come and enjoy the fun. So we decided on December 12 (which is the weekend after my birthday ;D)and will be doing it at noon so will can do barbecue and cake of course. I will be sending out Evites instead of through mail.

Payton and I will be going to Target this morning to do our registry and then since Nick has Friday off we will be doing Walmart's registry together then. This is the fun part I don't know what it is but lol it's fun.

Oh and I will be sending the Evites the end of this week so I can finish the registry before I send them out.

Friday, November 6, 2009

Whirl wind week!

So it's Friday and we have gotten through this week. For what ever reason the things that have come up this week was extremely hard for me. I was able to speak to the doctor about why we can't do the amino since I will be there already just to see where we are at, AND his answer is because she could still have mature lungs but be at gestation of 35 weeks which would give us other problems basically she needs to say in and bake longer and longer the better. So I understand and know that it's the best thing for her which that's what I want but I think why I got so frustrated is because there was a lack of communication between me and the MOM's study and of course I made that know to them. So for my orginal due date that puts me at 37 weeks Jan 26 (a Tuesday) and I told them since my mom already booked her plan ticket that I would like to come on Jan 30 which is Saturday and I would only have to hang out an extra week. Now of course if I start showing any sign's of labor I will have to come earlier.

So orginally I had an Ultra Sound and appointment on Novemember 16 and wasn't able to schedule late enough so I can make sure Nick will be able to come. So I split the appointment into two scheduled the ultra sound the week before and kept the doctor appointment at the same time. I hope that helps so he can make it work with his schedule at work. I do have to say though I am looking forward to the Ultra sound my doctor I see and the best ultra sound I have ever seen. They have a flat pannel TV on the wall that you can watch and it's amazing because you can actually tell what they're looking at.

Last happy note: Emma is still moving and kicking like crazy

Tuesday, November 3, 2009

SOOO Frustrated!!!!!!!!!!

Ehhh! I feel so frustrated right now, so I talked to the doctor from the MOM's study and basically he said that the entire team of perinatologist reviewed my due date and they couldn't come to an agreement so there solution is to fly me out on the 37 weeks of my original due date which is the January 26 and have me wait until original date for amino and C-section which is Feb 8 because they if they are wrong and I do go into labor at least I would be there instead of here. Which ok I get it but why can't they do the amino when I get there to see where she is just in case she is ready and I was right instead of waiting. I mean of course I don't want them doing anything if she isn't but wouldn't hurt to see...Right? I guess I am so irritated it because that's more time I have to be away from home, more time away from Payton and it breaks my heart to be away from him. I know he will be fine but it's going to be so hard being gone so long and then coming home with a baby. Which of course wouldn't be any different then staying and getting the surgery which let me say the thought of all that too was hard for me to even think about having to deal with.

So I guess I will have to see where it goes and what happens. This is so little but feels so big and makes me so upset I guess that is all apart of being pregnant and having extra emotion.

Tuesday, October 27, 2009

Sorry I am so behind!

Alright I am a little behind to say the very least. So Monday went really well and everything looked just the same before we left which is good because there are no new surprises, well expect my MRI which was quite the experience. I got there and told Nick to wait out in the waiting room and I would be fine and he said he would take a walk and get some coffee. So I go and I lay down and he starts putting me in and I get inside and just "FREAKED OUT"! Had to have him pull me out I seriously think I started having a panic attack so he asked me if I wanted to come in and hold my hand, so I said yea lets try it. Then I said well can you call my husband and ask him to come instead. He said it takes some time because he has to fill out the same paper work I did and change his clothes so I had to get in there anyways without him. So another tech comes in to start to hold my hand so I can start the MRI. Well they get me inside and I started to clam down when all the sudden I am being pulled back out again. The tech who is doing the MRI is yelling at the other tech who was holding my hand to get me out of the machine NOW and get me out of there. I have no idea whats going on I get up and we start to walk out of the room when 2" inch of water start flooding in all the way down from a huge hallway. I was in complete shock and they put me in the changing room and said they would be right back. Well this other lady comes in and we start talking about what had just happened when all the sudden that room started flooding too. Someone comes in to tell me Nick is out in the waiting room and I can go out there and wait with him until they figure out whats going on. Mean while this was going on for me Nick was taking a walk when it had started raining. He stoped got a coffee when he got the phone call from the tech saying I was scared and I asked if he could come and hold my hand. So Nick starts running back when the tracheal down poor started happening and he was soaked from head to toe. He got back and no one around and all the sudden people started running in with walkie talkies and finally he was able to ask someone about me and where I was. I come out and told him about what had just happened.

So needless to say we went going to finish the MRI so Tuesday was suppose to be our big day and talk to all the doctor and randomize which was going to be along day all ready. So what end up happening is we saw all our doctors got done at 2:30 and then went to the MRI which our appointment wasnt until 5:00. So they were able to get us in at 4:45 and we didn't get out until 7:45. Our little princess decided she wasn't going to corporate and was doing flips and kicking and just moving as much as she possibly could. Now granted it was extremely loud but the tech said she had never seen a baby move so much before!

So obviously we didn't randomize on Tuesday and had to come in on Wednesday morning sign the paper work and then randomize. So the way it works is she goes to her computer presses enter and we got "Postnatal". She comes back in before she says anything you could just tell from her expression that's what we got and we all knew it. We all where a little disappointed and decided to come home that day. Seriously though I truly believe even from the beginning when we found out about her spina bifida that everything happens for a reason, and there is a reason we didn't get that surgery. So we will be flying back to deliver her on February 8 and I couldn't be more excited to see her.

One other thing Nick and I decided we will officially be moving and start getting our house ready to sell. Yesterday a for sale sign went up on the Sparkletts building and there has been a debate with the land lords and talk about them moving to the Phoenix branch so it looks like that is going to happen. So we will be moving to New River to be closer to Nicks parents (Mark and Sherry) and allot closer to his sister (Ang). We are both excited because we will need all the support we can get and his family has been there every step of the way.

Thursday, October 15, 2009

Our Journey so far.....

Hi Everyone,
So I thought what a cool way to let everyone know what's going on and how things are going. So today is Thursday and Nick, Mark (Nick's Dad), and I are leaving on Sunday to San Francisco and will be flying out at 10:45 am on Southwest and should arrive at 12:50 pm. We will go check in to our Hotel and then we have the rest of the day to our selves. Monday on the other hand will be quite busy we need to be at:

~UCSF at 8:00 am to meet the coordinator to talk about evaluation and financial information
~Then 8:30 we will be meeting Fetal Surgeon
~9:30 we will go to a different part of the hospital for an Ultra sound and that will be about an hour
~So no lunch for me since I get a MRI
~11:00 we do a fetal ECHO w/Pediatric Cardiologist to look at the heart
~12:30 we get to meet with the second doctor Pediatric/Fetal surgeon
~1:30 Spina Bifida clinic coordinator
~2:30 arrive to get setup for MRI which starts at 3:00 and could very likely be there until 5:00 and thank Goddness we are done!

So Hopefully I will update on Monday to say how it went and then let you know what's in store for us on Tuesday. Thanks for reading : D