Quick Update

Just a quick update on my last OB appointment. I am doing well; Rebekah is doing well - that's the good news! :)  The relatively bad news is that I am not as big as I should be at this point in the pregnancy. At 24 weeks, I should be measuring 24 centimeters, and I was barely 22 centimeters. Now, some reasons for this in my past pregnancies have been low amniotic fluid and IUGR (the baby not growing due to a placenta defect), BUT Rebekah was just measured and checked two weeks ago by the cardiologist and ultrasound technician, and her measurements were completely on target for her gestational age. Also, I had abundant fluid, so for now we are not going to worry about me being smaller than "normal" (what is normal, anyway??).  :)  At my next appointment with the maternal-fetal specialist on April 14, they will recheck all of her measurements and my fluid levels, and if there is an issue, we will cross that bridge then.  For now, Rebekah is growing, kicking, stretching and flipping in her cozy little world.

A couple of other updates...Andrew's surgery (see last post) is set for April 9. The doctors have said that it will probably be an 8-10 hour surgery, so please pray for Andrew and his family through this time. 

And, for those of you who don't already keep up with MckMama, baby Stellan is not doing well at all. His heart is losing function and is not able to consistantly pump blood to his outer extremities. The doctors have mentioned some fairly drastic measures (including open heart surgery) in the last week, so please pray for his family and medical team as they try to come up with a best case scenario to repair his little heart.

Nancy

Heart Buddies

**Update** I just "met" another mom whose son, Logan, will be undergoing open heart surgery next week for HLHS. It is a different defect than what Rebekah has, but every bit as serious. Please pray for Logan, his mom and dad, and the doctors as they try to repair his heart.

Original Post:

The really neat thing about the internet and blogging is that we can "meet" so many people from all over the world who are or have been experiencing some of the same things we are.  Tonight, there are two little boys (and their families) who could use our prayer support.

Baby Stellan is five months old and in the hospital fighting to live. His heart has been fluctuating between several very rapid patterns of beating, and the doctors have tried a variety of medications with little success. You can read more of his story and frequent updates here.

Andrew is facing his second Truncus Arteriosus surgery in the next couple of weeks as he has outgrown his original conduit. I know his parents would appreciate prayers for the surgery to go well and for the family as the surgery will take place about an hour from their home. 

Today we received confirmation of our next cardiology appointment on April 14, which will be here in Greenville.  It is at that appointment that we will be referred to the doctors in Charleston and our care will be turned over to them.  Sometime in May we (Drew and I) will be traveling to Charleston for our meetings with the various doctors and hopefully have an induction date by the time we leave.

Tomorrow is a regularly scheduled OB visit with my doctor. We aren't anticipating any surprises, but we are learning to expect the unexpected!! :)

Nancy

Update Part 2

Hello all! We are so grateful and humbled by the amazing way the Lord has used Rebekah's story and her blog. We have had so many comments and emails already from you telling us how the Lord worked in your children's lives during a similar journey. We are also very thankful for all of you who have written to let us know that you will be keeping us in your prayers. Please be patient with us - we are trying very hard to respond to each of your comments and emails! If you don't hear from one of us, it is probably because we could not find a blog and/or email address to respond to, but we are still very thankful for your support!

In the last update, I tried to give you an overview of Truncus Arteriosus as it was explained to us by Rebekah's cardiologist. Dr. Lucas walked us through a fairly detailed description of what Rebekah's first open heart surgery will be like. Once she is assessed at birth, her surgery date will be determined (usually one week after birth, but could be sooner or longer depending on circumstances and how stable she is).  Barring any serious complications, her surgery will be scheduled first thing in the morning and she will be taken to the OR around 6:30 to be prepped. Dr. Lucas said it is a fairly lengthy surgery, and she will probably not return to the recovery room until 1 or 2 in the afternoon if all goes well. She will be put on life support during the actual 60 to 90 minutes that her heart is operated on. She will also be on a ventilator during surgery and afterward until she is able to tolerate breathing on her own again. During the operation, the doctors will insert a man-made conduit into the right ventricle of her heart leading into the lungs. They will also close a large hole between the left and right ventricles of the heart. Dr. Lucas said that the surgeons will determine in the OR how large of a conduit they will place - too large will flood the lungs with blood, making them work much harder; too small and it will have to be replaced much sooner than otherwise necessary. After the conduit is placed and the hole is closed (again, assuming they find no other defects or complications that need to be addressed), Rebekah's chest will be left open to allow the heart and lungs to swell after surgery. A saran-wrap like bandage will be placed over the open incision and she will be returned to recovery. In two to three days after surgery, the doctors will tie her sternum back together and close her incision if the swelling has gone down and things look good. This procedure will be done in the PCICU and not in the OR.

Dr. Lucas also gave us quite a bit of information about what her life will look like as she grows. Following Rebekah's discharge from the hospital, she will be seen at least weekly by her cardiologists, and if things continue to go well, the length of time between visits will gradually increase until she is seen on a yearly basis. At some point usually around 3 or 4 years old (sometimes as early as 1 or 2 and could be as long as 5 or 6 years), she will outgrow the conduit that was inserted at her initial surgery. Dr. Lucas did not give a lot of details (we will get them in the coming months), but he did say that some signs will be shortness of breath, fatigue, sweating and not being able to keep up with her peers physically. At that time, Rebekah will need to have a second surgery to replace the initial conduit with a larger one. Usually in the pre-teen years (11 or 12) and again when she is grown (17 or 18) the conduit will be replaced again. In rare occasions, especially if she does not grow quickly or get very big, she may only need 2 of the 3 replacements. Rebekah will always have at least yearly testing on her heart and an exam with her cardiologist to make sure that her heart is working well and things are still in good shape. 

We are so thankful that we have the ability to prepare for what Rebekah will be facing at birth. I have heard from many moms who found out at birth, or even weeks later that their son or daughter had a serious (or even life-threatening) heart defect. We are blessed to have superb medical care, and most of all to know that the Lord holds Rebekah in His hand each step of the way.

Nancy

Update

I am sure you are all anxious to hear the results of today's visit with Rebekah's cardiologist.  However, before I fill you in, may I just say that Drew and I have been blown away by the number of prayer warriors that Rebekah has right now?!  Do you realize that just today Rebekah's blog has had over 1200 hits?!!!!!!! We are so grateful and humbled by the support and encouragement that you have shown us. It seems so inadequate to say, but thank you.  Truly, thank you. We know that only the Lord could have worked in such a way.

We have seen the Lord's leading and working already in so many ways in our lives and in Rebekah's little life.  I hadn't posted this before, but just the diagnosis of her heart defect was the Lord's timing. My OB doctor had no specific reason to send me to a maternal-fetal specialist for our 20 week anatomy (ultrasound). He just felt led (of the Lord!) to have me checked due to low amniotic fluid in prior pregnancies.  Today, we felt very confident in meeting with Dr. Lucas, Rebekah's cardiologist. He answered all of our questions and more, and I will attempt to share that information accurately....

But, first, don't you just love baby feet?? This is the sweetest little foot I've seen all day! :)

Dr. Lucas confirmed Rebekah's diagnosis of Truncus Arteriosus, and his best guess is that it is Type 1 and 1/2.  Sound strange? I thought it did! Basically he said the difference between Type 1 and 2 is the lenth of the little areterial "stem" that branches into the left and right lungs. He said to imagine this little stem as a pair of pants. The "waist" of the pants begins in the heart and the "legs" of the pants branch to the left and right lobes of the lungs.  Truncus Type 1 has a waist and legs; Truncus Type 2 is missing the waist altogether, but has the two legs. His version of Truncus Type 1-1/2 is that she has a very short little "waist" and normal "legs." Basically, the differentiation is textbook only. It will not affect her diagnosis, treatment, surgery or final outcome.

I will preface the following with the fact that Dr. Lucas stressed (over and over and over and over.....) that ultrasounds and echos do not show every possible detail of the heart, so he cannot gaurantee that he can give us concrete answers until she is actually delivered, and not completely until she is in surgery and the doctors see her heart will they be able to tell exactly what is going on.  That being said, Dr. Lucas said that right now her heart defect looks very straightforward with no other visible complications. When Rebekah is born (and definitely that will be in Charleston at MUSC), she will almost immediately be taken to the Pediatric Cardiothoracic ICU. She will be stabilized and checked for any other problems or defects and assessed by the cardiology team. At that time, the surgeons will set a tentative date for her corrective open heart surgery, typically within the first week after birth. A "best case scenario" timeline is a hospital stay between 3 and 4 weeks from the time of birth to discharge.

After today's appointment, we have three very specific prayer requests to share with you. The first is that Rebekah will be fully developed at birth and that she will not come early. Dr. Lucas said the worst case scenario is if she is born before her lungs are fully developed because it would significantly delay her surgery and potentially cause permanent damage to her lungs and/or heart.  The second request is to guard Rebekah from any kind of sickness or infection between her birth and the time of her surgery. For obvious reasons, her surgery will be delayed if she has an infection, so it is critical that she remain well until her surgery and during her recovery time. Along those lines, please pray that Drew and I remain healthy so we will be able to visit with her in the PCICU. And third, Dr. Lucas said that the biggest hurdle for most babies is learning how to eat after surgery. He said that very often this is the only thing that stands in the way of being discharged after recovery. We are praying that Rebekah will transition to eating by mouth very smoothly with little or no trouble.  Also, we have begun to pray for Rebekah's surgeons, Dr. Bradley and Dr. Hsia, that the Lord would grant them wisdom in correcting Rebekah's heart.

There is much more to share about Rebekah's prognosis and long-term care, but it is late.  Four little boys will be up much to early for my liking, so I will save the rest for another post.  Thank you again for your prayers and support. It means more than you could ever know!

Nancy

Bekah's Room Part One!

First came the taping and prep work.......

Then the trimming (and trimming and trimming and........).

Then the rolling - strictly Drew's job.  I just tape and trim.  :)

And the finished walls! :)  If you look closely, especially toward the bottom of the picture, you can see the difference in color in the two walls.  The wall with the window is a shade darker than the wall on the left.

I am LOVING little girl dresses hanging in the closet!!!!!!

After several hours of work (more on Drew's part than mine!!), Rebekah's walls are all painted! We have a little bit of touch-up work to do, and then I want to paint the baseboards and door casings just to freshen it up.  But the biggest part of the job is done. The boys all thoroughly approve, and we like it too! :)  Now, we  just wait to see if Bekah likes it.

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 Grace

Here she is!! Introducing Rebekah Grace.....in pictures! :-) 

During our ultrasound at 20 weeks, 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 on Tuesday, March 17, 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. Apparently, a common concern with Truncus babies is that they tend to be low birth weight.  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 few days 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 or remain in the NICU 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 very early in life, and 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.

Drew and Nancy