Blessings Candles

A few months ago, my cousin Cami's good friend, Deby Sebastian, gave Cami a late Christmas gift - a candle named Bella. Deby owns a candle company (Blessings Candles) yet knew nothing about Bella until she gave Cami this candle. From this coincidence, another fundraising idea started coming together.

Deby has generously offered a very simple but profitable fundraiser to the ACD Association. Deby's candle company, Blessings Candles, will make a donation to the ACD Restricted Research Fund at NORD for every "Bella" or other candle bought by ACDA members, their family and friends between now and the end of December.

She will donate $9.00 for every 22 oz. candle and $4.00 for every 11 oz. candle bought by ACDA members, their friends and family. There are many scents to choose from in addition to the "Bella" candle.

Information about the Bella Candle

Size: 22 oz./11 oz.

Scent: Bella - citrus floral

Color: Bella - pink

Specs: Double Wicked, Zinc and Lead-Free

Burn Time: 100 hours or more for the 22 oz.

Price: $19.95/$11.95 plus shipping ($9.00/$4.00 of this goes to ACD Research)

Payment: Paypal

There are lots of different scents to choose from so check out the site!

Several holidays coming up and candles make wonderful gifts.



Its so easy to order online...just go to http://blessingscandles.com/

So, please consider purchasing a few candles for yourself, family or friends. You can order directly on Deby's website any time and pay via Paypal.

IMPORTANT - So that Deby knows that you are part of this fundraiser, please type "ACD Fundraiser" in the Add Special Instructions to the Seller field in the Review Your Payment screen. That will ensure that Deby makes a donation to NORD for that sale.

International families please contact Deby at sales@blessingscandles.com for international shipping information.

If you need to make payment using another method, contact Deby at sales@blessingscandles.com. Be sure to mention that you are an ACDA member.

When you give the candle as a gift, you might consider adding a note similar to the one below to add a personal touch:

A portion of the proceeds from the sale of this candle will be donated by Blessings Candles to the National Organization for Rare Diseases (NORD) for research on Alveolar Capillary Dysplasia (ACD). This is being done in memory of Bella, and the other babies that have lost their lives to ACD.


Thank you Deby for offering to do this wonderful fundraiser for ACD research! Such a wonderful blessing.

Maryann

"The Answer"

There are so many wonderful people involved in the the much anticipated Stretch Productions album "The Answer" that is now available for purchase!

A BIG THANK YOU goes out to my cousins Cami and Randy McCraw for putting so many hours into producing this benefit CD!



A portion of the proceeds from the CD sales will be donated to the ACD restricted research account at NORD. In addition, on the back cover of the CD there is a link to the ACDA website that explains how people can make a donation to NORD.

For ordering information, please visit http://stretchproductions.com/TheAnswer.html

The following was provided by Stretch Productions and is part of the press release about the CD.

Finding answers is not always an easy path. Finding answers together, however, can make the path brighter and easier to travel. In search for a cure for Alveolar Capillary Dysplasia, and in memory of "Baby Bella", singers and songwriters from Keller, Texas to Nashville, Tennessee came together to form 'The Answer', a 12-track compilation album with proceeds benefiting ACD research. Artists such as Rebekah Jordan, Ryan Wood, Jordan Justice, Bailey Lawrence, Brittany Strother and Stephen Bolduc are all college students who have had extensive vocal and stage training and were chosen by Stretch Productions for this project during their time in the Keller School District. The album also includes a duet by Paula Jordan and Brad Lundy of the Keller area, a song from the band "Red White and Blues", and a full choir of Keller students performing a remake of 'Peace on Earth.” Written by internationally renowned music artist ("Mandalaband") and television presenter/archaeologist from the UK David Rohl,this 1985 EducAid Christmas single was a charity follow-up to BandAid, recorded by British students. David Rohl's willingness to share his fundraising song really set the tone for the beginning stages of this ACD CD.

Other songwriters we wish to thank include Tammy Branscom, Nashville, Tennessee; Heather Duncan,Indian River, Michigan; from "The Duggars: 19 Kids & Counting" wedding episode - songwriter Robert Greenlaw, Oklahoma City, Oklahoma; & ABC-TV's "General Hospital" actor/songwriter Christian Taylor.

Also from Nashville, Stretch Productions is proud to feature Jordyn Shellhart-up-and-coming country music starlet signed by Columbia Nashville, among the likes of Carrie Underwood, Brad Paisley and Miranda Lambert. Jordyn's song, 'You Don't Get To Get To Me', is from her debut album "In a Room".



Thank you so much to EVERYONE involved in putting this wondeful CD together. You are all amazing people.

& To everyone else....order your copy today! Help us raise money for ACD Research...{thank you}

Maryann

All over the place

Lately, well for a while now actually ive been waking up several times during the night, wide awake, just thinking of Bella. After a trip to the bathroom of course...oh the joys of pregnancy :)

Usually its just random days that we had with her or even her funeral that ill play back in my head and end up falling back asleep at some point.

This morning however I was thinking about the last time I kissed her. I kissed her hands, her cute little feetsies and her soft cold cheek and walked away. I always make up a different ending. I wish I had picked her up and went back to the room to spend just a little time with her alone. I wanted to rock her by myself and sing to her. I just want a few more minutes...a few more kisses.


Then my thoughts went to one of the worst nights (besides the night we let her fly). It was of course the night she was with our least favorite nurse. The night before she was coughing everywhere and not sanitizing and just seemed loopy...rubbed me the wrong way. Well Ryon had come back down from WV and we went to see her after shift change. Again she just seemed tired and not all there. Bella turned bright red and scrunched her little face, was squirming and looked as if she was crying. If she could have made noise she would have woken up all the babies with that loud cry she had. Of course her alarms were going off and her numbers were going crazy...and all the nurse did was put her hand on her head and "shhhhh"ed her. This made me and Ryon furious! We felt helpless. I wanted to comfort her, not some nurse I didn't care for. I just stood there, my skin crawling. Oh how I wish I could go back to that moment. I  feel guilty for not speaking up...and for not being her mom in that moment and comforting her. We left her that night and God only knows how much pain she was in. This really upset me this morning and I cried a good cry...something I haven't done in a while. Some day ill let go but thinking of this night always makes me so angry.

My feelings are all over the place these days. I think of Bella constantly but its different now. I miss her so much but she seems farther and farther away everyday. She will always be my little girl but she just doesn't seem as close anymore. I never thought id feel like this. I thought id always have the heaviness and my arms could feel her weight. This isn't the case. I don't quite know when this happened. Is it because I'm pregnant and all my energy is drained?  I want this baby...but I want my Bella and would give anything to have her healthy. I want to feel her weight in my arms.

I don't know when ill start to think of this baby in the future and start to bond with him/her. Currently I'm not feeling like I'm pregnant yet even with my sickness and growing belly. I talk about doing the nursery and such but I just cant picture bringing a baby home. Its more of the change that I'm looking for. Ive built a little wall I think. Some days I feel like its still "Bella's year" we need to get through her first birthday and angelversary...and then I can really bond and prepare for the new baby. This baby deserves his/her own pregnancy memories so hopefully this feeling will change soon.

Another moment I really think will help is finding out the sex. Its not the anxious "I cant wait to find out!" feeling like usual. For me its more of once I know the sex, maybe ill start to think of this baby in concrete terms. It will be more real. I just want to call this baby by name and individualize this baby which is so important to me! As much as I try to convince myself the sex doesn't matter, deep down I reeeaaally want a girl. As anxious as I am to find out the sex I'm so nervous. What if we find out its a boy? Am I prepared for the overwhelming grief and denial I know will come with that? I know if its a boy he will be SO loved without a doubt in his mind. But I don't want to feel like I could never girl birth to a healthy girl....a girl Ive always wanted. 

I will keep you all posted on the findings.

So Hawaii is quickly approaching. I'm SOO excited. I'm also sad because Bella was supposed to go with us on this trip. Well she is still going with us because I'm going to bring her heartbeat bear and Ryon and I also have a few little things we are going to do for her there. I just cant wait. For a while I was thinking we were going to be there on October 15th(pregnancy and infant loss awareness day) and had the vision of us on the beach with our candle, which Bella would have made sure it stayed lit. lol Buuuut I don't know what I was thinking...ill be home still. Bummed about that. Oh well...

The everyday reminder that im still childless. I didnt want to take it down because one day i'll get to bring home a healthy baby that can use it.


14 weeks


showing the belly

Nursery Ideas

If baby turns out to be Austin Ryon...this will be his room. Walls and all(except I want to TEXTURE! nooowww) :) I absolutely love this for a boy. Not to mention its a 15pc Kathy Ireland set on sale for just a little over $100! Cant beat that!




Now if we have another little girl (name TBD) then we havent decided on the bedding but these are the options so far...


LOVE BIRD...shall we call her birdie? I think its cute. But thats just it...its cute



Now I like this, but a maybe name is Paisley Harper...and that'd be just a little much to have her room be paisley, right? lol



This is girly, and subtle...its nice. The walls look similar to what I want to do. Actually, I would probably copy the walls for this set.



I really like the colors of this set. Im not a huge fan of super baby rooms. Id like for the room to grow with the baby...afterall, who has the money to buy new stuff all the time? Not us!



This just looks relaxing...hence the name, SPA BABY :) yaaa



I havent always been a fan of black and pink baby rooms. I love the colors but I dont know if its good for a babys room. I get sick of things pretty quick and this might be one of them. However, I think I could make it work and not look too cheesy. The walls just make this look bad. Ive got a few ideas for this...




Well thats all folks. I would love some feedback...leave a comment and tell me what you think and which is your favorite! :)

Change of heart

So as you may know Ive started going to a new ob/gyn. Heres my (long) story about the loooong 10 weeks so far.

To recap:  I set up 2 consults before I got pregnant(from 2 of the 3 practices in Winchester). The first consult was with Dr.Reese, Ryon and I both loved her. I found out I was pregnant that morning so I thought it was a sign thats where I should be. She had a plan for the next several weeks so I thought she was willing to have me as a patient, however I would still have to go to another practice to see Dr.McCoy for my ultrasounds(the only specialist in the area). I ended up cancelling the other consult appointment. The next few days I had to drive back and forth to Winchester to the lab to have my blood drawn until the quant was high enough for an ultrasound...or until it was a "viable pregnancy". So I went back to Dr.Reese's office for my ultrasound at 6wks 2days to confirm there was a baaaby.

Of course the bean was alive and well and growing growing growing. YAY, things were moving along just as they should...I set up my appointment with the nurse and an appointment for the end of September to see Dr.Reese. The nurse was going to call me later that day to tell me when to go to Dr.McCoy(which would of course be before my next appointment w/Dr.Reese).

Later that day I got a call from the nurse to confirm that I didnt want to go to UVA, which they said would be the smartest idea. LOL I had to laugh because they just dont know anything about ACD. Nothing during the pregnancy would be considered high risk so why would I travel 3.5hrs to get the same info? No thanks. Plus I dont need anymore stress! So then she called back again and said they were transfering all care to Dr.McCoy. I was at work so I didnt want to ask questions, she just said someone from her office would be be calling to set up an appointment. As hard as I tried not to cry the tears wouldnt stop rolling. I was sooo upset the one thing I thought I could control I couldnt! Everything I wanted in a doctor I felt like I wasnt going to get at the new practice. I thought I'd most likely see Dr.McCoy a few times and just be thrown around all the other doctors(theres like 8 or 9) and I wouldnt get that personal experience that I really wanted from my new doctor. I didnt want to be just another number.

I got a call the next day to set up orientation and a meeting with the nurse. What in the world would you need to go to orientation for?? Especially since I JUST had a baby...I know what the deal is. I called to try and explain that I didnt need to go but they thought otherwise. I was already bitter and this just made it worse. I had such a bad taste in my mouth when I went to the orientation. (Keep in mind the doctor is 45 minutes away and I have no sick time) Basically we just sat in the back part of the lobby with other new prenatal patients and went over the packet(whats ok to take and all the other duh's). Missing work for this? Not ok. Then I had to go back the next day to meet with the nurse. Well the next day was lots of confusion. I was super emotional that morning...and still bitter. We got to talking with the nurse's nurse about our situation(they didnt have all the paperwork n such so she was trying to get at why Dr. Reese sent me there) and everyone was confused. Of course we talked about Bella and how its stupid they transferred me. I was just crying saying I only wanted to come there for my ultrasounds but Dr. Reese thought I needed to be there for all appointments. So they said "its up to you who you go see...so were not going to go over family history n do all the tests if you want to see her". So they took me upstairs to set up a consult with Dr.McCoy for the following week. Her secretary told me to call Dr Reese and get everything figured out and if she didnt want to see me then call her back and theyd change it to a prenatal work up(draw blood, pap smear, family history...all the fun stuff)

Well after leaving there..another wasted trip, I was so anxious, I knew what they were going to say so I didnt want to call and sound like a crying fool. After stressing I finally called and talked to the nurse..."it says here if you conceive, you need to go to a perinatologist...but she said you can come back to her for your gyn care after if you want". Thanks but no thanks. So its done....there is no back and forth anymore, it is what it is!

The appointment this week went way better than I anticipated. I had been having lots of anxiety but I think ill be ok now.

First we watched the CVS/amnio video from 1950..and the nurse informed me that after I have an ultrasound id meet with Dr.McCoy and then come back another day for my checkup...oooooh no, not again!! We informed her that the secretary said theyd do it all in the same appointment. So she said shed see what she could do and took us in a bigger, nicer room to have and ultrasound to make sure baby is still ok and check the heartbeat. It was so amazing to see the little bean. I teared up a little :) He/She even jumped a bit and made us chuckle. The tech said "isnt it crazy how much they move and you cant even feel it" and of course I replied by telling her I felt some flutters already! Now sure, in a normal situation you probably wouldnt be able to feel anything that early, but ive got a special angel who knows I need reassurance! Of course I didnt say that I just let her think I was crazy. LoL

So after a little while Dr.McCoy came in and we talked for quite a while. I must say I was soo wrong about her. Note: dont judge based on other peoples experiences! They didnt say she was terrible, just stern and not what I was looking for. I really like her a lot based on our meeting tho. Shes dealt with death a lot and she knows her stuff...but was also sympathetic. Shes not the robot I imagined. :) lol She also informed me that I wouldnt have to go to the other doctors and when I get to 39 weeks we could talk about inducing if I really wanted her to deliver. Whew! Also, she was real and finally someone who got it. She said she couldnt do anything anyone else couldnt do except for high tech ultrasound but she understood where Dr. Reese was coming from not knowing anything about it. Of course she didnt either but she wasnt afraid about it and sounded interested. She wanted all the info we had..I of course brought a folder with lots of info and we got to talking about genetics and such and the study at Baylor.

When we were finished she had her nurse call Dr. Sen at Baylor to find out exactly what we needed to do/send. She sent me downstairs to go over history and all the fun tests. Then back upstairs to the lab where myself annnd Ryon had our blood drawn. They sent the blood samples for us and the consent forms. So its finally done!

We were there for 3 hours! Wowza.

Got an email from Dr. Sen saying they got our blood samples the following day and now theyre just waiting on Bella's DNA from UVA(which theyll be sending most likely on Tuesday) He said once they get that theyll start sequencing the FoxF1 gene. We should have results within a few weeks so ill be sure to post an update about that!

So relieved to finally have everything sent(or ready to be sent) to Baylor...and to finally have a doctor for this pregnancy!

Feeling good :)

(weeeelll not physically, but mentally things are in order)

Looking back I know I made a moutain out of an ant hill...but im ok with that! Haha

On another positive note Hawaii is just 44 days away!!