Wednesday, August 12, 2009

*UPDATED LINK* Follow Our Story

Hey everyone! As you can see, this blog does not get updated very often. It was originally setup by a friends of mine to keep everyone updated on fundraisers in honor of Megan Grace.

Never fear though. If you want to continue following our story you can visit our personal blog here.

I'm not sure what I'm going to do with this blog. I may delete it since most of the same posts are on my blog or just leave it for now. Not sure but I'd love for you to come visit us over there.

Thanks for all your thoughts, prayers, etc. during this difficult time. It has been such an amazing source of support. That said I can only keep up with updating one blog so hopefully you understand :)

P.S. The link has been updated now. Sorry about that :)

Wednesday, July 8, 2009

Megan Grace Lavinder Memorial Scholarship Fund

We are pleased to announce the creation of the Megan Grace Lavinder Memorial Scholarship Fund.

Today I was able to talk to the President of the East Carolina Alumni Association. Everything is being setup right now for them to start receiving donations in memory of Megan Grace from anyone who wishes to contribute.

He said all anyone who wants to donate needs to do is send a check for any amount made out to:

East Carolina Alumni Association

Be sure to put on the memo line: Megan Grace Lavinder Memorial Scholarship

This way at the end of the year they can total the amount donated in honor of Megan Grace and the full amount will be pooled to fund a scholarship for that amount to one student during a ceremony each April.

The address is:

East Carolina University
East Carolina Alumni Association
901 East Fifth Street Greenville, NC 27858-4353

Steve and I do not expect anyone to do this but several people have asked what they can do to help and we felt this was the best way to honor her memory now and for years to come. Also, if anyone has questions please feel free to let us know.

Warm Regards, Steve and Amber

Tuesday, June 30, 2009

Our Beautiful Little Angel

June 29th, 2009
4:34 am
5 Pounds Even

Little Megan Grace, Our Daughter, Our Angel

As I said in my last weekly pregnancy survey (35 Weeks), it would probably be my last one. The problem was it was not until just a few short hours after it was written I would realize just how true those words would end up being when I felt my water break and we knew our time with Megan Grace was coming to a close.

It was not really a surprise. We knew that her condition was getting worse and my pregnancy complications were also beginning to put me at risk between the bleeding and the excess amniotic fluid I was carrying around due to her condition.

A little after 1 am on Sunday night (Monday morning) I woke up with what I felt were real labor contractions. They were definitely more painful that the Braxton Hicks contractions I'd been having for weeks. The problem was after enduring two late night trips to L&D I really did not want to wake my husband in the middle of the night again just to spend another night in the hospital just to be sent home the next day.

At 2:30ish I felt a huge gush that just kept gushing and I knew either I was losing a life threatening amount of blood or my water had broken. When I got to the bathroom I was able to determine it was my water so we gathered our things and headed out to the hospital knowing it would be only a very short time until we would be meeting our daughter, Megan Grace.

Once we arrived at the hospital, the on call doctor was actually well versed in regards to our case due to prior arrangements made by my doctor for her to serve as a backup in case of an emergency such as this. The stretcher was standing by along with the team of nurses ready to prep me for the OR. They drew my blood, inserted my IV, checked Megan's heart rate, and monitored my contractions.

Earlier in the evening, when I had been pretty sure I was having real labor pains I never did time them however I knew I was having a lot of them in a short period of time. As I was being prepped in triage, they informed me that my contractions were already only 2 minutes apart and man did they hurt.

It was only a few minutes later they were wheeling me down to the OR on the stretcher. Once we made it inside the doors of the OR area I lost it. I was scared along with many other emotions but the nurses were amazing! They helped me keep my cool throughout the whole procedure and I'm eternally grateful for them.

Once we got in to the actual OR they gave me the spinal and hooked me up the IV lines and we were off. It wasn't long before they pulled out our beautiful Megan Grace and brought her over for us to see before they went to clean her up.

She did not make it out of the OR alive however we are just grateful for the wonderful 10 minutes we were able to spend with her before she passed away.

After all this, I was taken to recovery where all of our families and friends came back to see us. I'm so glad they all came to see Little Megan Grace, hopefully it will be a moment they all treasure forever because I know we are glad they were all here to share that experience with us.

We kept her with us for a few hours before we said our goodbyes along with the rest of the family and then it was time to let her go. It does sound strange but although we are both sad in way we are both also so proud of her for fighting as long as she did. What a strong little girl!

Thanks to all of the friends, family, and strangers that have helped walked us through this journey. It would have been a lot more difficult without each of you stepping in to help no matter how big or small the gesture may have been.

Thank you and we love you all!

Friday, June 12, 2009

The Rollercoaster Just Keeps Twisting and Turning

On my rollercoaster the most benign tasks sometimes morph into some of the twists that keep us on our toes waiting for the next shoe to drop.

Wednesday night I was laying on the couch reading Handle with Care before deciding I was going to close up shop for the night and head to bed. Someone had other plans. As soon as I stood up, I felt a few gushes of something which did not feel normal. Had my water broken?

Once in the bathroom I discovered more blood than anyone should see at 32 weeks pregnant so we grabbed our hospital bags along with a few other items before heading out to the door to the hospital very quickly.

If you live near me, you also realize that Wednesday night was one filled with severe thunderstorms so this made for an interesting drive to the hospital. On the way there, we made the necessary phone calls letting people know what was going on with us and Megan Grace.

Also, while on the way to the hospital we realized we had left every form of payment we owned at home hence no cash for food at the hospital. Luckily, a wonderful friend of mine just happened to be at the hospital for the breastfeeding class we had signed up for months ago together and met us in the admissions lobby. Thanks dear I owe you (literally).

We ended up staying the night for observation but it was a night filled with emotions of every facet. Was this going to be Megan Grace's birthday? Was I going to have to have a C Section? Were we ready?

The bleeding ended up stopping so I'm home now on semi bedrest and I'm out of work for at least a week. We will reevaluate the situation next week. I'm calling my doctor today though to figure out where we go from here.

Overall, it the evening went pretty smoothly including a few firsts for me such as my first hospital stay and my very first IV. Wonder what is in store for the future?

Thursday, June 4, 2009

Getting Anxious

The days are coming to a close although we still have a few weeks left. Mentally things are getting harder. I'm more emotional, anxious, etc.

We will get through this together but the next few weeks are going to be tough. The aftermath will be even more difficult.

It really started on Monday (June 1st). Just knowing that next month our little girl will be gone is a tough pill to swallow.

The only way to process that knowledge is to continue to enjoy every moment we have left with her. We are doing that but it gets harder every day.

Please keep us in your thoughts and prayers over the next few weeks and months. We appreciate it more than anyone could ever know.

Friday, May 29, 2009

All done!

So glad the amnio is behind me. It was not the worst thing I've ever done but if I never have to do it again that will be fine by me.

All in all, it happened just like a friend of mine said it would. My nerves were way worse than the actual procedure and it did not take long at all.

That said, I'm really not into physical procedures or pain. It was less than 10 years ago (in college) where I had to be physically put in a headlock to give blood at a doctors office if that tells you anything.

I've come around quite a bit obviously. At last count since last Thursday I've had two shots, four blood draws, and the amnio itself for a grand total of 7 needle sticks :(

If you look a few posts back I've even got battle scars to show for it!

Friday, May 22, 2009

What is LFCA?

I saw in the comments on one of the previous posts that a lot of wonderfully sweet women came over from LFCA. I've been searching my brain but can't figure it out so my apologies for asking.

I'd love to check it out if someone could enlighten me?

Where We Stand

is a very confusing location right now. Yesterday, Steve and I spent from 7:45am until about 1pm with doctors only breaking quickly to grab a quick breakfast. This morning I returned to the office to have my glucose test done because for circus of reasons it did not happen yesterday. When I walked into my office to grab my chart they said to come back when I was done because my doctor wanted to see me sooo you can add another 2 hours to the time we spent with doctors yesterday for a grand total of about 7 hours!

The positive of all of this is we have a very muddy picture of where we are going as far as delivery etc.Haha, let me be truthful....we know nothing. This weekend I will be packing my bags for the hospital though just in case because there are few minor complications that could cause and earlier delivery than we anticipated although the chance is still minimal.

Let's see:

1) Based on the ultrasound from yesterday I still have a condition called Placenta Previa. It's not a complete Previa though and my placenta is reallyclose to getting out of the way but if it does not a c/s is our only option. I'm not sure if I have mentioned this before but that is not ideal at all for Megan's condition.

2) We are finally going to go through with the amniocentesis. This has been much debated and thrown around but next Thursday I'm having it done after all. The reason the doctors have made the decision to take on the risk is because at delivery we only have one shot at getting the genetic samples they need. If it does not work for some reason we will not have 100% definitive answers that Megan Grace has OI Type II. Steve and I would then be in a tough situation in the future. The amnio will allow them to have a second chance at getting an accurate diagnosis so we are not left empty handed.

That said, this procedure alone could throw me into labor hence the reason I'm packing this weekend.

3) Then there is the wrench of all monkey wrenches. :drum roll please: My doctor just consulted her calendar and realized that on July 19th she is boarding a plane for France and will not return until AFTER my due date. Wow. This makes me sad in so many ways because she has been more than instrumental in keeping the pieces of this puzzle together along with myself and I'd be very sad not to have her there for Megan's birthday.

There is a small chance we could deliver before she leaves but we have to see if my body is favorable for an induction, if Megan Grace is head down, and if my placenta moves. All of this before July 18th. The only thing we can do is pray and hope the stars align even if it is in the 11th hour. If not, then on to Plan B.

She has a backup who I have not met although we have talked via phone once. She is aware of the situation and willing to step in if needed so that is good news.

Yesterday, we also met with the pediatrician who will be at the hospital to care for Megan Grace and keep her out of pain once she arrives. He was a very compassionate doctor who has been practicing for many years so I feel confident in his abilities. Many of the living children he handles have special needs in some way, shape, or form so he understands our perspective and is willing to do everything he can to make it easier on all of us.

Based on all of this we likely have between 1 week and 10 weeks left with Megan Grace. Hopefully, it is more like 5-6 weeks but only time will tell.......

Monday, April 27, 2009

Thank You!!

The most memorable moment of this week was all of the wonderful ladies, gentlemen, and dogs who came out to support us at the walk in honor of Megan Grace.
It was a beautiful day for a wonderful cause and Steve, Tonka, Megan Grace, and I would like to thank all of your for your support both in person and through the donations you have made to her memorials.
All of it really does mean a lot and is much appreciated. At last count we had already surpassed the amount needed to purchase the Junior League paver in honor of Megan Grace. Any additional money is in her account and will go towards the scholarship fund we are setting up at ECU.
Hopefully, through all of this we can keep her memory alive even once she is gone but it is not without the help of many others that all of this is being done.
Thank you so much for everything from the cards, phone calls, emails, donations, showing up at events, gifts, food, etc. it really has been overwhelming. I've tried to keep track and make sure I thanked everyone personally in some way, shape, or form. If I have not please know we greatly appreciate everything down to the smallest gesture. It means a lot to us and Megan Grace. Have a great week!

Thursday, April 16, 2009

As Megan Grows

20 Weeks. This was about 48 hours after we found out. The clouds in the sky pretty much sum up the mood of the weekend.

21 Weeks

23 Weeks

Easter Sunday. The morning after we got home from Baltimore where she was diagnosed with OI Type 2. It was a beautiful Easter Sunday and we cherish every day we get to spend with her.

Friday, April 10, 2009

The Outcome

I've been pondering a title for this blog post however the above is really the best I could come up with at this time.The good news is the we do have a very definitive diagnosis. The bad news is the outcome will be exactly the same.

Megan Grace has been diagnosed with Osteogenesis Imperfecta Type II. The entire team of doctors which included a genetic counselor, a neonatologist, the ultrasound technician, and another two specialists in skeletal dysplasias were all in agreement. In fact, they met on Wednesday before we arrived as a group and were able to diagnose it from the CD of prior ultrasound images that was sent here prior to our arrival.

We are very at peace with this outcome other than the obvious fact that we are still going to be giving our little girl back to God.

The entire morning went very well as far as getting the clarity we needed.They spent over an hour doing all of the ultrasound scans again just to be very sure of what they were going to tell us. All total they were looking for five very specific markers and were able to find not one but all of them.

We have images of many of them and sat down with the group and went over each and every one. It is so clear that I could explain it to anyone who wanted to see if for themselves.As of right now, Megan has many, many fractures in her little bones. Some of her bones are measuring very small because they are literally piles of crumpled up bones. It does make me sad to think she could be in pain however we have elected to continue the pregnancy despite this concern.

My blog post today is not being written as I sit here and cry. We said we wanted to come here to get answers even if the outcome was the same and the doctors here were able to not only answer every.single.question we had they we able to show us their basis for the answer. It was simply amazing.

Another reason I seem to be better today is because as I watched the ultrasound at first I was a little upset but never cried but then a peace took over. As I watched the screen I could see things were still very wrong and that it just isn't in God's plan to heal Megan Grace here on Earth. At one point they gave us a break and asked me to walk around to see if she would change positions. During that time I just prayed a lot and told myself and God that we are fine if this is his plan and we would do the best we could to take care of Megan Grace while she is here.

All in all, we are fine right now. There will be days ahead where we are not fine but we will make it through.

Thanks for all the support from all of you and we love you all!

Amber, Steve, and Megan Grace

Wednesday, April 8, 2009

48 Hours

In 48 hours we will be at JH for our appointment. The appointment is at 8:30 and it should last quite a few hours. I'll try to update as soon as I'm able to do so.

Please keep us in your thoughts and prayers as we prepare for what is ahead. We have no idea what God's plan is but we just pray for the strength we need to get through whatever He has in store for us.

This week I've done pretty well but this morning things have fallen apart. I'm broken today and simply am unable to do anything more than what I have to do to get through this week. It is hard.

Others need us to be there for them too but it just is not possible right now. I'm holding myself up and hopefully everyone else can find the strength to do the same until we can get to a better place.

This is not to say I am not doing exceptionally well most days because I am. It is just the days I feel pushed beyond what I am able to provide that day when things begin to unravel.

Tuesday, April 7, 2009

PayPal is Up!

We are working on getting a link directly from the blog to the PayPal account Amber set up for donations. Until we get this figured out here is how you can donate using paypal.

go to
log in
select send money
make your donation

If your donation is for the paver please make a note in the comments area. This way we can keep up with how much we have collected.

Don't forget the paver deadline is MAY 25th!

Thank you all so very much.

PS If anyone knows how to get a link from here directly to PayPal could you please let me know so I can link it. Thanks again.

Friday, April 3, 2009

The story behind the paver

Amber joined the Junior League of Greensboro in September 2007. Since then she has been a very active member of the organization. The organization recently restored a historical home called The Albright House for their new headquarters.

As part of the completion of the project the league has offered pavers for sale to members which can be engraved however they would like. These pavers will from a path leading up to the headquarters.

By raising this money we will allow Amber and Steve to purchase a paver in honor of Megan Grace.

The link below outlines some of the information regarding this wonderful project:

Also, if you would like to learn more about Junior League you can visit the website of the Greensboro chapter at

Paver Deadline

Hello Everyone,
I wanted to let everyone know the deadline to get your money in for the paver is May 25th.

I am hoping Amber will have the PayPal acct. set up soon and we can put the info. on here. If not we will have to think of another way to get the $$ collected.

Again it's $250. So far we have $64. Anything we collect above the $250 will go to Amber and Steve for the scholarship or whatever they need it for.

Have a great day. Let us know if you have any questions.

Annabugg and Mikey

Saturday, March 28, 2009

Triad/Triangle Paver For Megan Grace Info.

Hello Ladies,
I just wanted to give you guys an update on the Triad/Triangle fundraising front.

We have decided to donate a paver at the new Junior League Headquarters. If you do not know Amber is a memeber and this year is our big fundraising year.

She was going to do this herself so we thought this would be a great idea for us to do for them. We will hold off on the inscription for now. Since we don't know the fianl word on her diagnosis, etc.

The cost is $250. We will need to move on this soon as the deadline is approaching. I will let you know a definate date as soon as I have one.

Here is the website for the League:

It is part of the Legacy Campaign.

More info. to come shortly.

Friday, March 27, 2009

Johns Hopkins

This is where we are getting our second opinion. The top hospital in the country which just so happens to have a center that specializes in just our diagnosis. It's called the Greenberg Center for Skeletal Dysplasia.

We will be heading up there on April 9th and the appointment is actually April 10th which is Good Friday.

Please let our luck turn around. We received our diagnosis on Friday the 13th. Maybe we will receive the miracle we have been praying for on Good Friday.

Wednesday, March 25, 2009

Megan Grace's April Schedule

Busy. Very busy.

April 7th~ Second opinion at UNC
April 14th~ Fetal Echocardiogram and a regular OB appointment
April 21st~ Daddy's birthday, U/S at the MFM doctor in Greensboro, and a meeting with the genetic counselor
April 25th~ Family Wedding
April 26th~ Walk/Run in Charlotte in Megan Grace's honor

All of this and we are considering dropping the second opinion at UNC and going to Johns Hopkins in Baltimore. I've been in contact with them and am in the process of getting some questions answered to be sure it is a good decision. I'll keep you all posted.

Monday, March 23, 2009

Charlotte Run/Walk Info.

Mark your calendars!!!

Megan's Walk
Date: April 26th
Time: 10:00 a.m.
Place: Mallard Creek Greenway (see link below) Meet in Mallard Creek Elementary School's Parking Lot
Donation: As much as you'd like to give

Wear Purple or Gold to show your support (in honor of ECU's school colors).

Speed and Toads

Thursday, March 19, 2009

A turning point

Yesterday was a definite turning point in my overall mood and attitude towards this situation.

It was the first time I had really been able to move past the news we had been given on move on to exploring other possibilities. The people who know me really well know that I'm one of the first people usually to question a doctor and even find another one to question. Due to the news we had received I hadn't gotten there yet until yesterday.

When I woke up my mood was considerably better and I started to explore the internet for other options which was when I stumbled upon the link below. Another lady I had been talking to also sent me a story just like it that was about someone she knew so the wheels started churning.

All of this was going through my head yesterday on the way to the doctor. We sat down with her and she informed us that our case is now part of a group of cases that go to committee each month. They had met since Friday and had discussed are case and guess what? They are totally at a loss as to what is actually wrong with her.

DISCLAIMER: The prognosis has not changed because it is still based on what they saw from Friday.

As part of the conversation I pointed out that the possible choices for diagnosis are very broad which in turn leaves a large chance of error in the diagnosis and she agreed.

We left the appointment essentially on the note that this is in God's hands and he could touch her over the next month and the echocardiogram and u/s could show significant improvement. It could also go the other way. Only time will tell what God has in store but I ask that you all keep praying as we will that little Megan is a fighter and that this game isn't over yet.

So right now we are just staying positive, hoping, and praying for a miracle.


Steve, Amber, and Megan Grace

Wednesday, March 18, 2009

Nothing is impossible....

Hello everyone. Amber sent me a link to this blog earlier today. I wanted to share it with you. Amber and I talked about it and we aren't trying to fill everyone with false hope. But, this is just one miracle and we all know God can also create a miracle for Megan Grace too.

Please keep the prayers coming.

"For with God NOTHING shall be impossible" (Luke 1:37)

There are no words....

To be able to express how thankful Steve and I are for all of the continued support and prayers during this difficult time.

We are hanging in there. Today we are meeting with one of our doctors to go over our care going forward and to try and get answers to the many questions that we have about what we are facing.

The support we have received both IRL and from the fabulous Nest/Bump community has been amazing. Honestly, we have survived some portions of the last week by the strength God has provided and from all of the posts, emails, phone calls, etc. that we have received.

It's a long road and we are just at the beginning but I know we will make it through this and be stronger for it one day. We are so in love with our little Megan Grace and we can't wait to meet her even if it is for only a short time.
Thank you for continuing to think of us ladies. It really does mean a lot and I hate that we can't thank each and every single person individually but just know we appreciate it.

Tuesday, March 17, 2009

I just received an note from a friend on another message board I am on. She wanted to know if this was my friend on this blog...

Amber and I joked the other night that this was bigger than either of us more ways than one.....

I am still amazed that is just happened 6 days ago.....and how far and fast the word has spread. And the love, support, prayers and well wishes...

Amber was so worried she was going to be "alone" in all of it...Girl, you are ANYTHING but alone.

Amber we love you so much. And little Megan Grace too.
Welcome Nesties to our blog for Amber, Steve, and Megan. Please feel free to leave your comments, well wishes, hugs, prayers, thoughts...

We will be updating it with messages from Amber, the fundraisers, and everything else...

So, let's get it going...