Quick Update!

I just wanted to update and let you know (if you don't have it already) that we have started a new blog just for Rebekah and information about her Truncus Arteriosus.  You can read about her cardiology appointment at her blog www.rebekahgraceellis.blogspot.com.  As of about 6:30 this morning, we already had almost 1500 hits on the blog, and we have only given out the address for two days! This little girl has prayer support from all over the country! :)

Nancy

Drew's Perspective

Drew and I have discussed many times in the past few days how blessed we are to be given such a special little girl to take care of.  Yesterday, Drew pretty much summed up our feelings in this post on his Facebook page, and I asked him if I could also put it on the blog (with a few....ahem....minor grammatical corrections).  :-)

"I want to thank all of the church family and our friends for the encouraging words and phone calls this week as we found out that we are embarking on a new adventure. Something that struck me as I read many of your posts on Nancy's page is that many of you expressed that you are sorry about Rebekah's heart defect. I understand that everyone is expressing their feelings and support, and I appreciate that.  Your support and encouragement will continue to mean even more in the days ahead. But, we are choosing to see things in a different way.  Rebekah's heart defect is not something to be sorry about; it is the Lord's will.  Whatever His reason, He has been preparing us for this and would not have allowed it to happen if we were not able to meet the challenge.

The Lord has been very gracious and has been preparing Nancy and myself with various challenges in the past few months to draw us closer together and cause us to rely more on Him. He has taken a lot of "securities" away to bring us to a better place of totally trusting in Him for everything in our lives. I know without a doubt that He has my little girl, who He gave to us, in His hands, and He can heal her if that is His will. It may be a long road, but we will be okay with the Lord leading and guiding in our lives.  There will be many trials and needs, but I pray that we will faithfully rely on the Lord to meet each of those needs. One of our biggest goals in this trial is to touch someone else's life along the way. Rebekah's heart defect is very rare, and we would like to be a testimony and encouragement to anyone else who walks this road behind us.  I am very grateful for all the kind words and encouragement.  I felt that we should share how we are looking at this new challenge and intending to walk forward - with the Lord leading us and your prayers and support behind us."

Drew

Rebekah

Here she is!! Introducing Rebekah Grace.....in pictures! :-)  I had a Level 2 ultrasound today at my high risk OB, and they can put the pictures on CD, so here we go!

During the ultrasound, the technician seemed to have some trouble finding the two vessels leading out of the heart - one that loops blood through the lungs and back to the heart (to oxygenate the blood), and the other that supplies blood to the body.  A little while later, another tech came in to see if she could get a clear picture of the vessels, and she couldn't see them clearly either.  So, Dr. Greig came in to look and concluded that Rebekah has a heart defect called Truncus Arteriosus.  Basically, when her heart formed, the two vessels did not separate, leaving her one large vessel.  So, while Bekah is in utero, everything is fine because her blood supply and oxygen are coming through the placenta.  Once she is born, she will be facing open heart surgery within the first 8 weeks of her life.

She almost had her thumb in her mouth here!!  We will be meeting with a Pediatric Cardiologist sometime in the next two to three weeks for him to look at an ultrasound of Rebekah's heart and determine how severe he thinks her defect is.  Most likely, a final determination of her heart defect will not come until after birth when the doctors can determine how critical or stable she is on her own.

So, for right now, the tentative plan is for her to grow, grow, grow!!  Based on what Dr. Greig suspects the cardiologists will recommend, we were told to prepare for a delivery in Charleston, SC, where the Pediatric Cardiology unit is and where Rebekah will ultimately have her surgery.  We will be meeting with the NICU doctors, the PCICU (pediatric cardiology intensive care unit) doctors and nurses, the pediatric cardiologist, the pediatric cardiothoracic surgical team and the high-risk OB doctors in Charleston sometime in the next 2 or 3 months to meet them and familiarize ourselves with where things are and how things are going to progress once Rebekah is born.

Dr. Greig's biggest concern is for Rebekah to grow as much as possible in utero, and based on my past history of NOT going into labor on my own, he said they will wait until 38 or possibly 39 weeks to schedule my induction at MUSC in Charleston.  Once Rebekah is born, we will be looking at one of three scenarios:

1) Rebekah is very critical at birth and will have surgery within hours or a day or two of birth to repair the vessels.

2) Rebekah is somewhat stable at birth or can be stabilized with medication and/or medical equipment in order to allow her to stay in the PCICU for a week or two to grow before surgery.

3) Rebekah is much more stable at birth than the doctors are suspecting and she is allowed to come home for a few weeks to grow prior to her surgery.

Because each person is different and reacts differently, the doctors will not be entirely certain of which scenario we will be facing until Rebekah is born.  The one thing we know for sure is that she will need at least one open heart surgery to correct the vessels, and possibly two or three more as she grows depending on the extent of the birth defect and how it is repaired during the first surgery.  She will visit a cardiologist at least once a year for the rest of her life in order to monitor her heart and stay ahead of any potential problems.  However, the long-term prognosis is very good.  Rebekah should have no restrictions or limitations due to her heart defect.  She should be able to grow, develop and play like any other baby.  She should even be able to participate in sports programs if she wants at some point.  And, some really encouraging news is that there should be no reason that she can't have children of her own some day, although it will require a little more monitoring of her heart than an otherwise healthy pregnant mom would have.

I'm sure I'm forgetting something or not answering everyone's questions! If you have a question, leave me a post, and I will try to answer it (or find the answer!!).  The links below should also provide more information:

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/cardiac/truncus.html

http://www.pted.org/?id=truncusarteriosus1

We would certainly appreciate all of your prayers as we approach Rebekah's delivery in July and the surgeries that follow.

Nancy