Prayer Request

I just spent a few minutes with Brian, Jude's dad, and they received some disappointing news this morning.  Jude had been doing well, and there was a possibility that he would come off the bypass today.  Instead, he needs to have more invasive procedures, all with their own set of risks and potential complications.  If you are interested in more details, you can read Brian's explanation here.

I know Brian and Rose would certainly appreciate your prayers, both for Jude and for them.  There is nothing in the world like the emotional roller coaster of watching your child fight for his/her life.  Please uphold our friends in prayer today.

Nancy


P.S.  Bekah is doing well this morning!  We are waiting on the doctors to round and just maybe, we will get a discharge date!! :)

How You Can Help

Rebekah's surgeon, Dr. B., called at the end of last week to discuss his thoughts on the surgery that has been proposed for Rebekah.  It was a long, intense conversation, and the bottom line is that Rebekah needs some type of intervention.  Her heart is beginning to enlarge, and that puts her on a course that none of us want to see. As far as the doctors involved can tell, there is only one option available:  the surgery to attempt connecting the large collateral artery branching off her right subclavian artery to her pulmonary artery to create some pulmonary blood flow to her right lung.  There are pros and cons to this surgery, and it is bordering on experimental.  No one has ever had Rebekah's anatomy, so this is an "educated-guess" type surgery to hopefully give Rebekah's heart some relief.  If it does not work, we are basically out of options.

We are still waiting for the surgeon's office to finalize a date, but it looks like the surgery will be taking place about a week before Christmas.  Many of you have asked for specific ways that you can help, so I thought I would try to list some things that would be helpful to our family.

First, and most importantly, please hold us up in prayer!  This surgery will be long and intense, and we are told the recovery will be harder than any of Rebekah's previous surgeries.  Please begin to pray for Dr. B and the cardiology team as they prepare for Rebekah's surgery.  We are praying specifically for wisdom for Dr. B as he will be setting a course for proceeding as he is in surgery.  There are no surgical notes from a previous procedure that he can consult to give him an idea of how to proceed.

Also, please pray for our family's health.  The next few weeks are so, so important for keeping Rebekah healthy.  Any sickness or decline in Rebekah's health has the potential for creating more complications and a longer recovery period.  Please pray for Drew and I and the boys to remain healthy, as well, so we don't pass anything to Rebekah.

As you can imagine, this surgery and recovery time in Charleston will not be without expense.  If you feel led, there are several ways to help that would be a huge encouragement to us.

1) Ride for Mike 2011: Jonathan will be riding from Greenville to Charleston in honor of Rebekah Grace in just two!! weeks!  We are so excited to see how God is blessing Jonathan's project and using it to provide funds for Rebekah's needs.  Ride for Mike is partnering with Helping Hands Ministries to distribute all funds received for specific needs.  These funds will be used for the "big" things such as a hotel and/or bills that will need to be paid.
2) Restaurant Gift Cards: As you might imagine, cafeteria food can get very old, very quickly!!  There is very little opportunity to make or keep our own purchased food anywhere at the hospital, so we have to purchase almost every meal.  Some of the restaurants in the hospital or nearby are Subway (lunches!!), Olive Garden, On the Border, Longhorn, O'Charley's, Moe's, Applebee's and McDonald's.
3) Gift Cards: Generic gift cards (such as Visa gift cards) or Wal-mart or Target gift cards are also very helpful for smaller expenses such as gas and things that Rebekah needs.  We have found in the past that no matter how many things we try to pack and think of before we leave, there is always something that we learn in the hospital that would make things easier/more comfortable for Rebekah.  It is nice to be able to run to the store to get those little things that are a comfort for her.

Another blog friend of mine recently posted about some wonderful ways to help those who have a medically fragile child.  If you have a few minutes to spare, read through Kate's post here.  She very neatly sums up the answers to our most frequently asked questions.  :)

Thank you all for praying for us.  I will be posting more details about what Rebekah's surgery will involve when I can think more coherently.  Right now I'm going to do a little reading and hopefully get some sleep.  Rebekah has been restless the last couple of nights, so I'm hoping to get a little more sleep in tonight!

Nancy

More questions than answers

 Well, we finally heard from MUSC today.....and it was not at all what we expected!  Please forgive me if this post seems disjointed and doesn't make a lot of sense.  Drew and I are still trying to sort through information right now.  If you have a lot of questions after reading this post, it's okay; we have a lot of questions, too!  :)

Rebekah (2), Caleb (3), Aaron (5), Justin (8), Zachary (9)

So, before I get into all the details, I'll give a quick update on yesterday's cardiology and GI visits.  Rebekah was a very good girl this month and actually gained almost a pound!!!! Can I say we are thrilled and excited to see so much weight gain after months of barely gaining ounces?!  I think we can directly attribute the weight gain to the additional amount of overnight feeds Rebekah has received in the last four weeks.  Whatever the cause, we are grateful for it!

The cardiology visit was pretty uneventful.  Rebekah rested beautifully during her echo and was an absolute angel.  I am so thankful that she is such a sweet girl (most of the time!).  I can't imagine having to take an uncooperative toddler into doctor's appointments, echos, x-rays and labs.  I know some of you moms do it, and I have the utmost respect for you!  The only slight change is that Rebekah's left ventricle is enlarged from the previous echo.  This is an indication that her heart is working much harder than it should be, and is consistent with the theory that she is shunting blood through her right lung that is just basically looping from her heart to lung back to heart without ever getting out to her body.  That makes her heart pump twice as much to get the correct amount of blood flow to the rest of her body.  It makes me tired thinking about it!

These are some of my favorite pictures of Rebekah.

 I especially love the black and white, in spite of the fact that 

Rebekah dumped a pail of water on her shirt.  :)

While we were in the cardiology office yesterday, Dr. L sent Rebekah's surgeon an email and copied the cath doctor asking why we haven't heard from MUSC about a surgery date yet.  Dr. L called me (early!) this morning, and this is where the story gets interesting.....

Dr. L received two emails this morning regarding Rebekah's surgery.  The first, from the cath doctor said that they had presented Rebekah's case at conference (in early September, which we knew about), and they had sent a request to the surgeon for a surgery date.  The second email was from Rebekah's surgeon, Dr. B.  He said the reason we have not yet received a surgery date is that he is unsure that this particular surgery is the best option for Rebekah. What??!!  So the last two months that we have been waiting under the assumption that Rebekah would be having surgery to disconnect a collateral artery from her right subclavian and reattach it to her pulmonary artery, and I find out in about 5 seconds that our surgeon is not on board with this plan!  I could definitely hear the displeasure in Dr. L's voice (believe me, he is a very soft-spoken, mild-mannered man), and I know he was not happy.  He, also, had been given information indicating that we were proceeding with surgery and were simply waiting to be put on the surgery schedule.

Dr. B (surgeon) asked Dr. L to let us know that he would be calling sometime this week in order to discuss his thoughts on this surgery and share his concerns.  And, I hope, answer some of our questions!  I know one of the reasons that Dr. B has some concerns is that it appears this collateral is not as straightforward as we had been led to believe.  Apparently, this collateral makes some unique twists and turns through Rebekah's body before it actually winds up in Rebekah's lung in what Dr. B calls "a confusing nest of collaterals."  One of the possibilities that Dr. L is pretty certain Dr. B will suggest is a second opinion with another group of heart specialists for a "fresh set of eyes and opinions."

Really we need to speak to Dr. B and get some more information and direction from him before we proceed with any kind of treatments or procedures.  There are some medications that Rebekah could take to improve her heart function, and there are some very tiny collaterals (that will never be able to be attached to her right lung) that could be coiled off in the cath lab.  All of those treatments, however, would be skirting around the elephant in the room - that collateral branching off the subclavian.

So, where do we go from here?  I have no idea! :)  It's hard to discuss your daughter with such very intelligent doctors and hear them say "we really don't have any answers."  But, I am thankful that we know the One who does know the answers.  God himself created our little girl, and her unique anatomy is no surprise to Him!

Thank you all for the comments, prayers and hugs today.  We really needed them!  Please continue to earnestly pray for wisdom for all those involved in Rebekah's care.  Also, if you feel led, please consider donating to Ride for Mike 2011.  All proceeds are tax-deductible and will be used for Rebekah's care and expenses.  And please remember to join us in Traveler's Rest on Saturday, October 22 for the Ride for Mike Family Ride and picnic.  We would love to see you there!

Nancy

Heart Cath. August 16th

The summer is coming to a close around here, and we are preparing to start home schooling next week with Rebekah's brothers. We are also heading to Charleston next week for Rebekah's scheduled heart catheterization on Tuesday at MUSC. Rebekah is scheduled for first case on Tuesday, so we have to check in at the hospital at 6:15 in the morning. She should be going back to begin the catheterization around 7:00. If all goes well, it should be a three to four hour procedure. We are anticipating that Rebekah will be spending one night at MUSC for observation, and we should be coming home on Wednesday.

Please pray for us as we travel to MUSC, about a 3 to 4 hour trip, on Monday. Also pray that the doctors would be able to find a cause for Rebekah's fatigue and come up with a plan to help her. We are also praying that the pressures in Rebekah's heart and lungs will have come down from the dangerous levels they were at in the spring.

We praise the Lord for his providing and care of our family. We trust and know that the Lord will carry us thru all of our trials.

Thanks for supporting our family in prayer and love,

Drew

Hospital Bound

The last week or so the boys have had a virus cold or something like the flu with high fevers and congestion.

Well Miss Bekah has come down with it now. She has a mild ear infection also. So we were to the doctor's today and were going home on meds to recover. All was normal thru most of the day. This evening and into bed time Miss Bekah seemed to head down hill and then crashed at bed time. Her O2 sats have dropped below her allowed norms and she is having a hard time breathing. Along with this the also has pretty good fever.

So after call her cardiologists they are admitting her to the hospital to get her some help.

Please pray she will get over this quick. Also pray for Nancy as she is staying in the hospital with Bekah. Pray the boys to continue to get over their colds.

I want to say thank you to some dear friends who are helping out with the boys, so that I don't have to take anytime off from school. We appreciate all their help.

We will update you when we have more information on what is happening with Bekah.

D

Disappointed

Well, this has been quite a week! Monday morning Rebekah's EI (early interventionist) called and said her daughter was sick with a stomach bug. So, Rebekah had a day off from therapy! :) This week Tuesday should have been our Ladies' Bible Study at church (it's roughly every other week), but our teacher was sick, so that was cancelled as well. Then came Wednesday and cardiology. I'll get to that in a minute. This morning I got a phone call from Rebekah's OT (occupational therapist) who was running a fever and wasn't coming over today. What a mixed-up, inside-out, upside-down week! :) I'm glad we don't have anything scheduled for tomorrow!

Rebekah is "feeding" her babies.

I snapped these pictures post-cannula-incident,

so that's why she doesn't have her oxygen on. :)

Wednesday, dear Wednesday, where do I begin? Rebekah and I headed out to her cardiology appointment first thing in the morning. It was a routine visit, yet we were anxious to see if the weeks of oxygen therapy had lowered Rebekah's pulmonary pressures any. Once we arrived at the appointment, we went through all the preliminary stuff (height, weight, blood pressure, o2 sats - 100%!!, etc.), then we waited our turn to go to the echo lab. I was excited to have one of our favorite echo techs. Rebekah cooperated fairly well, and only got a little fussy at the very end. Then Dr. Lucas walked in. I knew when his first words were, "I'm not pleased with the results of Rebekah's echo," that it was all downhill from there.

Time for Baby #2 to have a drink.

We really need to come up with names for these babies!

Drew and I were very disappointed to learn that the oxygen therapy Rebekah has been on has not lowered her pulmonary pressures at all. As a matter of fact, Rebekah's pulmonary pressures are significantly higher than they were at our last appointment in December. Whether the oxygen helped and kept the pressures from going even higher, or whether it did nothing at all, we aren't sure at this point. But, just in case it is helping keep the pressures from getting any higher, Rebekah will continue to stay on oxygen until a decision has been made about where to go from here.

Oh, this little girl is so cute and sooo sweet!

Nope, I'm not biased at all! :)

So, the elephant in the room.....where do we go from here? That's a good question, and one we are waiting to have answered. Dr. Lucas was concerned enough to make a call to Charleston, and we are currently waiting to hear back from them. Rebekah already has a heart catheterization scheduled for March 7. It is likely that we will keep that appointment. However, Dr. Lucas does not want to be the one making that decision. He wanted to let Dr. Bradley and the surgical team in Charleston evaluate Rebekah's pressures and decide whether or not they are going to bump her cath date sooner. The only reason that we are not currently in Charleston at this moment is that Rebekah's heart, despite the ridiculously high pressures, is "happy." As long as Rebekah's heart is tolerating the increased pressure, then she is not in imminent danger of heart failure. If we begin seeing signs of heart failure (hopefully not!!), her case will begin to take precedence over other, more healthy children. There is a definite pecking order among heart patients. This is one pecking order that you would rather be on the bottom of! Those at the top are the most serious, critical cases, and that's never a good spot to be in!

Look at those curls!!

Okay, so once we get to Charleston (sometime between now and March 7), there are a few options for Rebekah. The first, and by far the best, is that the cath will reveal that the pressures are not as high as the echo is estimating them to be. The echo is a great tool, but it is not an exact measurement. Basically, it reads sound waves bouncing off blood flowing through the heart and gives a reading which is then translated into a formula to give a close estimation of the pressures in Rebekah's heart. During the cath procedure, there is a catheter that is inserted into the conduit in Rebekah's heart which gathers an exact measurement of the pressure. Even if the echo is estimating the pressures higher than what they really are, they would still be too high.

Just a side note here, Rebekah's blood pressure on Wednesday was 88/67. The 88 (top number) is the systolic. The 67 (bottom number) is the diastolic. Rebekah's pulmonary pressure should be somewhere between 1/3 (normal) and 1/2 (acceptable) of her systolic number. So, that would put her pulmonary pressure somewhere in the range of 29-44. Rebekah's estimated pressures on Wednesday were in the 90-100 range. So, even if the estimate was, say, 20 or even 30 points high, that would still be too high to be safe.

We are really beginning to suspect that Rebekah will be left-handed!

Since Rebekah's pulmonary pressures have been almost equal to (or sometimes greater than) her systolic pressure (also called systemic) since she came out of her last surgery, it is doubtful that there is anything that the doctors will be able to do in the cath lab to relieve that pressure. Do you remember almost exactly three months ago, I wrote this post detailing our conversation with Dr. Bradley about Rebekah's high pressure and the possibility of some narrowing around her conduit? Well, the result of that conversation was a trip to have a CT angiogram which showed no signs of narrowing anywhere around the conduit. That was good news. The bad news was that there was nothing to balloon or stent in the cath lab to open up the conduit more. It was wide open and still Rebekah's pressures were high. In that post, I wrote that Dr. Bradley told us his goal was to get Rebekah stable enough to come home and recover from surgery, and in about three months come back and re-open, or partially re-open, her VSD if her pressures were still high. That's where we're at, folks.

On the (all too infrequent) days that I scrub my kitchen floor,

the kids get to enjoy a tent in the living room.

Rebekah thought it was great fun!

One of the other concerns that Dr. Lucas and I talked about is Rebekah's restless sleeping patterns. She is no longer the great sleeper that we had before her last heart surgery. Now she tosses and turns, moans and groans all through the night. She is "asleep" during all of this, but it is obvious by the dark circles under her eyes that she is not getting quality sleep at night. One potential reason is that the pressures in Rebekah's heart keep her in a constant state of adrenaline. If you or I had a few cups of coffee every night before bed, it is likely that we would be very restless sleepers, as well!

The other possibility that we discussed for Rebekah's restless sleeping is that she may have sleep apnea. She does not have the classic "freight train" snoring of typical sleep apnea sufferers, but that alone does not rule out the possibility. Because of the atypical formation of Rebekah's palate and pharyngeal arch (basically the back of Rebekah's mouth and throat), it is quite possible that she does have a degree of sleep apnea. In fact, I just read an article this week, in the VCFS newsletter that documented the higher incidence of sleep apnea in children with DiGeorge and velocardiofacial syndromes. I won't bore you with all of the medical details, but in a nutshell, the physical formation of the mouth and throat, combined with low tone in the soft tissues of many kids with DiGeorge and VCFS, is a prime combination for sleep apnea. Once Rebekah's current heart issues are resolved, we will be referred for a sleep study if we do not see a dramatic increase in the quality of her sleep.

Such a sweet girl!

Drew and I are understandably disappointed by this week's findings. But we are so thankful to know that none of this took God by surprise. He knows Rebekah's heart. He made Rebekah's heart, and we can rest in Him, knowing that He loves Rebekah even more than we do. We are so blessed that God trusted us to care for our sweet baby girl. She is such a joy, even on days that she is not feeling well.

Our biggest request for now is wisdom. Please pray for wisdom for Dr. Bradley and each of the doctors that will be discussing Rebekah's care. Pray for Drew and I to have wisdom and discernment in Rebekah's care. It would be so easy to jump at every little sniffle or "off" day, thinking that Rebekah is showing signs of heart failure. Pray that we will know when Rebekah is just being a normal toddler and when we need to call the doctors.

In closing, Isaiah 25:1 has been on my heart this week. It so perfectly states what I have been reminding myself of all week.

O LORD, you are my God;

I will exalt you; I will praise your name,

for you have done wonderful things,

plans formed of old, faithful and sure.

~ Isaiah 25:1

Nancy

P. S. I just learned of a new little (unborn) baby who was recently diagnosed with Truncus. His name is Lukas, and his button is now on the left sidebar of Rebekah's blog. I know his family would appreciate your prayers as well. And, our sweet buddy, Owen, will be leaving Feb. 8 for a significant surgery that will determine whether he is a candidate for the next surgery he needs, or if he will need a heart transplant shortly. Please pray for Andrea and Owen as they fly, and especially for the surgery to go well. I sure hope you get to "meet Buzz Woody," too, Owen!!

Prayers needed!

Rebekah had a pretty good day today, and we are thankful for that! She is still coughing quite a bit, but she enjoyed playing with her brothers and having the freedom to move around and play as she wanted to. It's always best to be home! :)

Two of our little heart buddies are struggling tonight and need prayer. I mentioned both of them last week as they both had surgery in early December. Brandt was able to come home on Sunday, but we just learned that he has been rushed back to MUSC with some type of infection. The latest that we heard is that antibiotics and pain medications were started, and Dr. Bradley is considering surgery tomorrow. Please pray for sweet Brandt, his parents and brothers, as this is a very scary time for them.

Baby Mason is still at MUSC and the last I heard was that he was moving to the step-down unit today. He seems to be in a great deal of pain still, and no one has been able to figure out why. Please pray that he will be able to rest tonight and that the doctors will be able to find the source of his pain.

Thank you for praying for Rebekah and her little heart friends. It is so easy to be lulled into a false sense of security that all will be well because we are now home, but things can change rapidly for a heart baby. Thank you for upholding us in prayer!

Nancy

December 2010

It has been a few weeks since our last prayer request post, so I thought I would update the list! We are so appreciative for all of you who check on us and faithfully pray for our family.

Rebekah is doing so well, and we are thrilled to see her almost back to where she was prior to her surgery! She has been walking with one of us supporting her, even though she tires easily. We are still hoping to see Rebekah's endurance level bounce back some, but we are aware that with her current heart configuration and high pressures, that may be some time in the future.

As you know from reading previous posts, Rebekah is now scheduled for a heart catheterization on March 7 to check the pressures in her heart. Our prayer between now and then is that the pressures in the right side of her heart will go down on their own and not require any surgical intervention. Also, please pray that the doctors will have wisdom in making decisions regarding how high is "too high" for Rebekah's heart pressure.

In regards to the catheterization itself, please pray that it will go smoothly and Dr. Baker will be able to get the IV access he needs. After Rebekah's last cath, we found out that Dr. Baker was not able to get all of the information he had hoped for because he could not thread the catheter everywhere that he needed to. Rebekah will be almost a year older this time around, so I'm hoping that will have given her (very tiny) veins some time to grow a little more.

Please also pray for wisdom for Drew and I. Before surgery, we knew Rebekah's limitations and were comfortable working within them. Now we are having to learn a new set of parameters to work with. We are still trying to get a feel for when to push Rebekah harder and when to back off and let her rest. Over time she will show us how she can handle things, but right now we are still a little unsure of what her limits will be.

Rebekah's eating will be another area we need to address in the next few weeks. Again, if surgery had been a complete success, we would have been given the green light to push Rebekah to eat more orally. Rebekah has an appointment with her cardiologist on Dec. 8 and her GI doctor on Dec. 13. We will be discussing how far we can push Rebekah to eat orally and how much we will still rely on the feeding tube until at least March. It is amazing when you stop to think about how intricately our bodies are made. Everything depends on everything else! I am continually reminded of Psalm 139:14 "I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well."

Thank you all for the prayers and support you have given our family. So many of you we have never even met, some of you have taken care of our sweet girl in the hospital or doctor's office, and others of you are close friends. We love and appreciate each and every one of you!

Nancy

Not out of the woods yet....

So overnight Rebekah was stable, albeit with high pressures. Today, not so much. She has been having frequent breakthrough periods of startling awake, which causes the pressures in her heart to jump dramatically. The LAP and RAP pressures that I talked about in the previous post (normal is high single digits, post-op normal is low teens, Rebekah has been running close to 20) are jumping up into the 50's during these startle periods that Rebekah is having. Yeah, that's super high and not really great on her heart.

The doctors have also been doing echocardiograms every six hours (at the bedside). Overnight, they noted moderate dysfunction in the right side of her heart. The good news is that it had not gotten any worse this morning. The bad news is that it has not gotten any better, either. You can be sure this is something that the doctors are keeping a very close watch on. They also confirmed that the conduit has narrowed, and they are watching it closely to see if it is narrowing any further.

Believe it or not, Rebekah's heart pressures and function are not the main concern of the doctors right now. The biggest concern is that Rebekah is not peeing. I mean, like almost not at all. Like only 9cc's over two hours. And that was her "big" amount of the morning. The previous hour was only 3cc's. Rebekah has been getting two "big gun" diuretics since midnight, and she is still way overbalanced in her fluid intake/outtake. That fluid is also contributing to the already high pressures in Rebekah's heart. She is also much more swollen today than when we saw her yesterday due to all of the fluid retention. There is another diuretic that the doctors are probably going to try later this afternoon if the noon doses of the other diuretics don't produce the results we need.

So, the two biggest concerns of the day are for Rebekah to start urinating (in large amounts) and for her to keep calm and still so the pressures in her heart don't skyrocket. As always, we will update with other news as things progress.

Making History!

Ahhh. That's my sigh of relief at finally being back in the land of electronic communication! :) Although, I am borrowing Drew's laptop at the moment, as he is trying to resurrect mine. Something about not reading the hard drive.... We do not have an internet connection at the CrossBridge house, so this is the first time we have been able to connect and send an update, other than texts from our phones.

So, we made it to Charleston late Wednesday afternoon and got settled in at the CrossBridge house. It is so comfortable, and we are so thankful that it was available to us. Rebekah did well during her pre-op procedures yesterday (Thursday) and even suffered through a second blood draw after part of the first blood draw clotted.

Dr. Bradley, Rebekah's surgeon, came to talk with us yesterday afternoon and really surprised us! We had been prepared to discuss the removal of Rebekah's right lung, and that was not his plan at all! Because Rebekah has not had any issues with infections or pneumonia in her lung(s), Dr. Bradley is content to just leave her lung intact and watch it. If in the future Rebekah's collateral arteries grow, or if technology develops to allow the use of that lung, he would be in favor of attempting to connect it to her pulmonary artery. If Rebekah begins to develop chronic lung infections or other lung problems, Dr. Bradley would reconsider removing her lung at that time.

Drew and I are very satisfied with this approach. Of course, we want whatever is best for Rebekah, but we were disappointed with all the talk of removing the lung. That would have left Rebekah with no chance at all to ever use that lung. While Rebekah may never use the lung, at least she will have some kind of a chance if the lung is not removed.

Now for the long explanation of Rebekah's heart. This information was all brand new to us, so we were a little overwhelmed with the complete turn around after our meeting with Dr. Bradley. The short story is that Rebekah is completely and totally unique. There is not (or has not been) another documented person with Rebekah's unique anatomy combination of Truncus and a missing pulmonary artery. Even a visiting professor from London, who only studies the anatomy of children with heart defects has never seen or heard of this type of combination. SO....all of that leads to a lot of uncertainty as to what might or might not happen when Rebekah's heart is repaired and whether or not her body will tolerate the repair.

So let me tell you what we know for sure that Dr. Bradley will be doing. At this time, Rebekah should be intubated and prepped and surgery should be starting at any time. Dr. Bradley said that it will take him about an hour to work his way through the scar tissue left from Rebekah's first surgery. After that, Rebekah will be placed on ECMO (the heart/lung bypass machine) while Dr. Bradley works on creating a pulmonary artery from the right side of Rebekah's heart to her left lung. He will be using a tube-graft, which is made from a Gore-tex material and a human donor valve. This conduit will allow the blood from the right side of Rebekah's heart (unoxygenated) to flow into her working lung, receive oxygen, and then will return to the left side of her heart to be pumped out through what will become her aorta (the "trunk" that originally supplied both her body and her lung with blood).

Now comes the tricky part. See, in a straightforward Truncus repair, the next step would be to close the large VSD (ventricular septal defect), which is the hole Rebekah has between the right and left sides of her heart. BUT, because Rebekah's conduit will only be supplying blood to her left lung, the concern is that too much pressure will build on the right side of her heart. Imagine a balloon in a small box with a straw in one side. The straw represents the pulmonary artery that is only going to Rebekah's left lung (instead of splitting into both lungs). Now as you begin to inflate the balloon (pumping blood into the right side of her heart), about half of it (or more) will flow through the straw, but after a while the balloon will begin to expand and have nowhere to go. Over time, it would create too much pressure for the balloon and eventually it would burst. Now, imagine that a hole was in the side of the box. There is now an escape vent for that extra pressure to flow into and relieve the stress on the balloon. That, in a nutshell, is a good picture of the concerns Dr. Bradley has about Rebekah's heart.

So, Dr. Bradley will create the conduit and then run a Flow Test to check the pressure inside the right half of Rebekah's heart. If the pressures are high, he will be leaving the VSD open, or at least partially open, in order to allow blood to flow into the left side of Rebekah's heart and relieve some of the pressure. The last thing anyone wants to do is create high pressures (essentially high blood pressure) in her heart. Over time, that would certainly lead to heart failure. On the other hand, leaving the VSD open will result in Rebekah's oxygen saturations remaining low and will increase the likelihood of her remaining on oxygen after surgery.

Now, you may be thinking of the biggest question that we had after Dr. Bradley explained all of this: What will happen with Rebekah long-term? Well, the answer is that no one knows. :) As Rebekah grows, so will her lung (obviously), and as her lung grows larger, it will have the capacity to hold a greater volume of blood. If (when) that happens, Dr. Bradley would be able to close the VSD, possibly even in the cath lab and not during open heart surgery, because her left lung would be able to hold the full volume of blood from the right side of her heart. Of course, if at any time there were collateral arteries that formed to the right lung, they would be used to form a pulmonary artery and would give Rebekah the use of both lungs.

In the short-term, the main concerns are for Rebekah's recovery after surgery and what kind of stress this surgery will put on her heart and lung. No one has wanted to make any kind of speculations about the recovery time, although we are all hoping that it will go smoothly and quickly! Dr. Bradley called in his best team for this surgery - seriously! We were told by several people this morning that the team Dr. Bradley put together for Rebekah is the best there is. Apparently he has different people that he calls depending on the complexity of the surgery, and we got the "A-list."

Just a few minutes ago, we were paged with our first update. The surgery began on time, and Rebekah was stable. Everything is going as planned. The earliest we can hope for this surgery to be completed is around 1:30 this afternoon, but could be as late as 3:30, depending on how things go.

Our biggest prayer today is for wisdom. There is no cut-and-dried technique for Dr. Bradley to follow in Rebekah's heart surgery. A lot of his work today will be trial-and-error, and just plain "gut feeling." He has been working miracles for a long time, and we have been told he just has a sense of how things are going to work when he is in the OR. Please pray for wisdom and divine guidance as he determines the best course of repair for Rebekah's heart. Also, pray for Dr. Bradley's assistants, Cathy and Zeh (pronounced like "hay" with a z), the anesthesia team, the nurses, and the rest of the OR staff as they monitor Rebekah.

Thank you so much for caring and praying for our little girl. You have no idea what an encouragement it was to check facebook today and see all of the posts and requests for prayer that have gone out for Rebekah. Also, thank you for the prayer vigils that are going on today. I know of at least two churches whose members have signed up for around the clock prayer times during today. Thank you all so much for your prayers!

Nancy

Blessings!

We have had an amazing week this week, although you may think us a bit crazy when I fill in the details! :) Drew went to work on Monday morning, and in case you haven't heard, he came home an hour later. His employer has decided that he no longer needs Drew's position, so that was it; no warning, no notice, no job.

Of course, the lack of income is a bit disturbing, but other than that, we are choosing to see the blessings in the timing of Drew's lay-off. Drew has been home to watch the boys during some of Rebekah's appointment, and we have been able to keep Rebekah at home more while I have to take care of other chores and errands. This is especially important since we are doing everything we can to keep Rebekah from getting another cold or illness right before surgery!

Yep, I'm cute!

Drew has some job possibilities that he is looking into, so we would appreciate your prayers for the right job and the right timing. It will be a huge relief to both Drew and I that he will not have to be torn between Rebekah and his job next week while we are in Charleston. We know that God has a plan for everything, and we are trusting in His plan. In the meantime, the kids are very much enjoying seeing their Daddy more!

Zac and Rebekah at the park.

A couple of weeks ago, we met some new friends from Zac and Justin's school at the park. The kids had a great time playing together, and I enjoyed visiting with a new friend! The weather was super nice, and it was fun to watch Rebekah interact with her brothers and their friends.

Picnic in the living room!

For a few years now, we have enjoyed "family nights" with the boys on Friday nights. Usually we will play games or watch a movie together. On rare occasions, we fix "munchie" plates of fruits, veggies, crackers, cheese, and whatever else sounds good, and the kids are allowed to eat in the living room while we watch a movie. This was Rebekah's first experience with movie night, and she had fun. She was sampling red grapes, cucumbers and bananas, all diced in small pieces. We have been working on self-feeding with a fork and spoon in occupational therapy, and Rebekah would stab a piece of fruit or veggie (or I would help her get a piece on her fork), and then she would lift her fork to her mouth, take the fruit off with her other hand, and then eat from her hand. It was so cute and so funny!

Yogurt and cheerios....mmm, good!

Rebekah has been working really hard in her stander and walker, and we can see the results! She is much more confident in standing, and occasionally pulling herself up on a piece of furniture. Rebekah still cannot stand without the support of something, but she is much, much stronger than she was a few months ago. In pool therapy last week, Rebekah took three steps from the therapist to me, without holding on to us. It was the first time we have seen her walk without support! We know that Rebekah will not be walking by the time she has surgery next week, but she has gained so much confidence in the last few weeks that we are hoping she will bounce back to standing, and hopefully walking, soon after surgery.

See, I can stand up!

We have been told that Rebekah's stroller will be delivered this week for us to pick up on Wednesday at therapy. I am so hoping that it comes before surgery! MUSC is a very large medical campus, and it would be a huge help to have a stroller that can have on-board oxygen, rather than us having to lug a tank behind the stroller. We are certainly praying that it comes this week! It will also be much more comfortable for Rebekah to get in and out of after surgery.

Yes, I made this mess. I'm a little stinker some days! :)

If you read our last post in which we included specific prayer requests for Rebekah's upcoming surgery, you will understand what an answer to prayer we have seen this week. On Wednesday and again on Sunday, we received an anonymous note with some money tucked inside to help with our gas expenses. Thank you, Anonymous! We appreciate your prayers and encouragement! Also this week, we received a package with gift cards for several restaurants that will take care of our meals for quite a few days. Thank you!! That was a huge blessing! Then on Sunday, we received a very sweet note from some of our friends and they included another gift card and some money to help with expenses. You know who you are, and we thank you very much!! We love you guys as well!! The biggest surprise came on Sunday afternoon by way of a phone call from someone whom we had never met face-to-face. She asked if she could come by to meet us, and we enjoyed visiting for a while. She handed me an envelope when she left, and it contained money that will cover a good deal of our expenses. Thank you so very much!! The Lord has been providing this week in ways that we never would have dreamed possible, and we have been very humbled by it. The love and prayers that we have received is just amazing.

Not even my brothers could get me to smile!

This was the best smile we could get...after dozens of attempts. :)

There is a story behind this little gray outfit. When I was pregnant with Zachary, about this time nine years ago, Drew's mom and I saw this little outfit on clearance at the mall. We didn't yet know if Zachary was a boy or girl, but for some reason, we were all thinking "girl." The outfit was so cute, and Drew's mom decided to get it thinking that we would have a girl at some point who could wear it. Fast forward four boys later, and we finally have our little girl. I had completely forgotten about the outfit, but I'm glad Grammy remembered! It is so cute!

Rebekah loves playing with her tongue!

Front: Justin, Rebekah, and Aaron

Back: Zachary and Caleb

After many attempts over the last few months, this is the best picture we have ever gotten of all of the kids together. Our boys just adore their baby sister, and I know they are going to miss her while we are in Charleston. Please continue to keep us all in your prayers over the next few weeks.

Nancy

Prayer Requests for Surgery

As Rebekah's surgery date approaches, we have been asked numerous times for ideas of how others can help. By far, the most important thing we ask of you all is that you pray for us. We have listed several specific ways that you can pray for Rebekah and our family below.

First, we praise the Lord for meeting our needs for housing and transportation while we are in Charleston. If you have never heard of CrossBridge ministries, please take a minute to look at their website. They have an amazing ministry, and I know they would also ask for your prayers as they continue meeting the needs of patients and families.

Pray that Rebekah stays healthy so her surgery will not be postponed. These next two weeks are critical for her, and she is currently recovering from a cold. Please pray for her quick recovery and for no more illnesses. Also, please be understanding when you may or may not see us out and about as we are trying to keep ourselves well so that we can care for Rebekah.

Pray that the surgery will go smoothly, that it will be successful, and that there will be no complications. Included in that, please pray earnestly for the surgical team, led by Dr. Scott Bradley, and all of the PCICU doctors and nurses who will be involved in Rebekah's care. I know we have said it before, but this is a major surgery. It will not be a walk in the park for any of us.

Pray that Rebekah will recover well with no post-operative infections or complications. We know from past experience that anesthesia and paralytic drugs are not very nice to Rebekah. She has a difficult time waking up after sedation. Pray that her recovery time will be as easy as possible for her.

Pray for the Lord's provision for our financial needs for surgery and the weeks of recovery afterwards. While we do have our transportation and housing needs met, there are other things like gas, meals/groceries and parking fees that will be needed. We have been blessed already with many offers of help in these areas!

Pray for safety as we travel between Greenville and Charleston. It is about a four hour trip one-way, and that is not an easy trip for a 15-month-old. Especially one who is recovering from major open heart surgery!

Pray for the boys as life at home will not be normal with Mom and Rebekah away. The boys all know (in age-appropriate terms) that Rebekah and Mommy will be going to Charleston for another surgery. While they do not know the seriousness of the surgery, they do know that they will miss their baby sister and mommy. Please give the boys extra hugs and be understanding if they seem to be more emotional than usual!

Pray for family and friends as they step in and help with the boys at home. We have been blessed by so many wonderful friends and family who help out at (literally!) a moment's notice. Thank you all so much for the many ways that you have helped out since we first found out about Rebekah's special heart. Thank you, also, to all of you who faithfully follow Rebekah's story via the blog. Many of you we have never met, but you have a special place in our lives. We could not do this without the support of so many people who are praying for us.

And, lastly, please pray for us. Having seen Rebekah go through one open heart surgery before, we fully know what to expect. And that is not a pretty sight. Please pray that we can be strong for Rebekah and that our testimony would be evident to all those around us. We meet many people while in the hospital with Rebekah. Please pray specifically that we would have an opportunity to share our faith with others through Rebekah's story.

Drew and Nancy

Baby Ewan

I have just learned tonight that a little heart buddy is in very critical condition. Baby Ewan (pronounced you-un) is just two weeks old today, and has already undergone multiple invasive procedures as a result of a congenital heart defect called Tetralogy of Fallot. In Ewan's case, the tetralogy is so severe the doctors were unsure they would be able to attempt repairing his heart. Two days ago, Ewan was taken off ECMO (heart and lung bypass machine) and was doing well. After several hours, it was obvious that his heart was working too hard and he was put back on life support. As of today, Ewan's parents (and doctors) are facing the tough decision of whether to try another life-saving procedure or let him go. Please pray for the Peterson family tonight - for peace, comfort and wisdom. And if you'd like to see some adorable pictures of Ewan and read more of his story, you can find him by clicking here.

It is always heart-wrenching when parents watch their children suffer, whatever the reason. But I think we share an unbreakable bond with parents of heart babies, no matter their race, beliefs, location or background. It is only by God's grace that we have not had to face a similar situation with Rebekah, and I cannot say with certainty that we won't. But I know that whatever we face in the future, whether the coming surgery, or years later, that God will give us the peace, grace and strength we need to trust Him.

It is on days like today that I am reminded that the therapies, doctor's visits, oxygen, feeding tube and everything else that we have with Rebekah are really nothing in light of the decisions and pain that others are facing. Those whose children are no longer here, or whose children are clinging to life in a hospital would give anything to have their children home, no matter what little inconveniences come with that. I am reminded of how blessed we have been and continue to be.

My heart is very heavy for James and Kirsten tonight. Please, please, uphold them in prayer, and feel free to add them to your prayer list in church tomorrow.

Nancy

We are Gone again!

We hate to have to tell you this, but we are heading back to the hospital here in Greenville. We discovered today that Rebekah's left leg is cooler to the touch then her right leg. Also she has had a hard time with her sat monitor not picking up while the lead is on her left leg. This is something we were told to watch for after her heart cath. The left leg is the site where they put the cath in. There is a possibility that she may have developed a clot in her leg. At least this is what we were told could happen, so we have talked to MUSC and they wanted us to take her to the ER to have an sonogram done on her leg. They will be checking to see if there is a blood clot or not.

Hopefully they will figure out what is happening and be able to treat it with medication. I will update you further when I hear from Nancy.

For now the best we can do is up hold Nancy and Rebekah in prayer. The Lord knows all and will watch over them.

D

Next week off to MUSC again.

Just a quick update. We are thankful that Mom and Rebekah have been home for a little more then a week from the hospital. Just as we are settling in, we are off this coming week on another adventure.

We are heading to MUSC for our long awaited heart cath. procedure. We are scheduled for second case in on Tuesday morning. We have been told that this can be a 4 or 5 hour procedure. We hope to get lots of good information to be able to make solid decisions on when and how best to move forward with Rebekah's heart repair.

They also are going to be scoping Rebekah's lungs and bronchial tubes for a possible additional side effect from the DiGeorge. Rebekah's pulmonologist thinks that Rebekah's trachea and/or bronchial passages are "soft," meaning they have not become firmed up like they should have in a baby Rebekah's age. If they find what they think is happening it will explain some of Rebekah's wheezing and heavy breathing. She seems to not always respond to the breathing treatments and medications. That could be because it is a physical problem and not one that can be treated with medications. In time this is something that she should grow out of.

While the heart problem is something we know about and have been dealing with for sometime now, we are still finding all the little quirks about DiGeorge and how it shows up in our little lady.

We will be traveling Monday to Charleston and hopefully back home by mid-week. We will keep everyone up to date as we progress through these tests.

Thank you everyone who follows along with Rebekah for your prayer support and thank you to all of who have graciously contributed to Rebekah's fund to help with our expenses. We appreciate it greatly and are so thankfully that the Lord has allowed you to help us in this way.

D

Sunday update-12/20

Nancy has her hands full with Bekah so I will attempt to fill you in. The last couple of days have been up and down with Bekah. She is still in the hospital and not really improving a lot. As of this morning she is having trouble keeping her oxygen sats in her normal range while being on oxygen. If they remove the oxygen then her sats drop to the low 70's. They are attempting to give her some more oxygen to see if they can stableize her oxygen sats.

The nurse this morning made comment that Bekah's right lung sounds more congested and labored then yesterday. This is the lung we have been trying to protect as it is functioning on its own, but not connected to her heart. They are thinking Bekah my have fluid building up in her right lung. She had trouble passing enough fluid thru the night and this may explain why.

Her heart rate is also hanging out in the low 200's which is way up from her normal 150's.

We know she is in the Lord's hands and he will carry us and her thru all of this. We want to again say thank Lord for all the blessings of our little ones.

Also thank you to all the family, church family, and friends for the support, time, and effort you have graciously given to help us.

D & N

September Prayer Requests

We thought we would share some updated requests and needs. We have two big ones around here. One being I still do not have a permanent job. While the Lord has been gracious to provide for our needs with my heart felt gifts and some hours here and there on odd jobs we are still praying for some thing more stable.

Our other big request as always is Rebekah and her care. We are specifically praying for wisdom on making the best choices for her care. As you know if you have been following along Rebekah is looking to have a G-tube installed very shortly. We are praying that this surgery will go smoothly and that there will not be a lot of recovery time. We are praying for funds to come in so that we will be able to make at least 2 trips to MUSC to have this procedure done. We will mostly likely have a 2 day trip for a clinical visit and then a 2nd trip up to a week long stay to actually have the surgery.

We are praying for 2 things to come out of this surgery. One that Rebekah's reflux will be stopped so she is more comfortable and able to eat right. Two to help her to move forward with the right growth and weight gain.

Also like last time with the open heart surgery we are praying for all the details of child care and strength for the rest of the family.

Of course along with prayer requests I will mention some praises too. I am thankfully for all the hours and help Grammy and Grampy have given to taking care of the boys. I am also thankful that the boys are so flexible and go where ever we need them too. Most of all we Praise the Lord for caring for our family and guiding us each step of the way.

D

Plan C, D, or maybe....Q!

What a difference a week makes! Last week we were excited about Rebekah's eating and saw a definite improvement in the amount she was taking at each feeding. Since this weekend, we have seen a significant difference as well.....just not in the right direction! Rebekah has been eating less at each feeding and has been very agitated during most of her feedings - a sign that appears to indicate that her reflux medications are not controlling her reflux adequately.

Yep! That's our sister! Justin and Aaron love to help take care of Rebekah.

Rebekah has also been more lethargic this week and has been sleeping more than she was last week. We decided to blame that on the less frequent doses of Lasix that Rebekah has been getting since last week's cardiologist visit. Rebekah's doctors today decided to go back to the original dose and frequency to see if that can get us back to where we were last week before we made the changes. Of course, it doesn't help at all when Rebekah spits up immediately following her medications!

Sleeping in spite of my brothers!

The official weight check numbers for this week were consistent....consistently low! In the previous week, Rebekah had only gained three ounces, and this week she decided to make a repeat performance. Rebekah gained three ounces this week to bring her up to seven pounds and three ounces. We didn't measure length today, but one or two of her little outfits are getting snug in the length, so she may be adding a little growth in that direction.

Silly monkeys!

In developmental news, Rebekah has started to smile just a little bit in response to Drew or I. It is fast and fleeting, so I haven't really been able to capture it on camera yet. I'm still trying, though! Rebekah is also getting better at holding her head up for a few seconds at a time. Because of her reflux, we haven't had much tummy time at all, but she does lift her head when Drew or I put her up to our shoulders.

Almost everyone! Caleb bailed out at the last minute. :)

We will have another weight check next Wednesday at our pediatrician's office. In the meantime, we are being referred to a gastroenterologist (GI doctor) to figure out what the next plan for feeding Rebekah will be. Some days it feels like we are swinging on a pendulum between good days and bad, plan A and plan Z, but it is comforting to know that God has a plan for Rebekah. He has had that plan since before she was born, before we even knew she existed. And we are so thankful for the doctors that He included in that plan to help us care for Rebekah. We have been blessed by a truly amazing team of doctors and medical personnel, and we are grateful for them!

Zachary bought this outfit for Rebekah. She looks so cute in it!

Please continue to keep Rebekah in your prayers in the next few weeks. The feeding tube is definitely on the table as an option again, and we are willing to pursue that option if it will be best for Rebekah. Please pray for wisdom for all of the doctors involved, for Drew and I as we care for Rebekah, and for Rebekah. Pray specifically for Rebekah that her tummy issues will be resolved and she will be able to grow as she needs to.

Thank you to everyone who continues to pray for our family and especially for Rebekah. We appreciate you all more than you know!

Nancy

P.S. Click on over to our family blog here for new pictures of the boys!

Wednesday check up

Pray for Rebekah; she has a weight check today, and she has had a couple of down days this week. She has been extra sleepy and having trouble eating. Hopefully Dr. DeMoss will have some helpful answers today. Will post when she gets home later.

D

Daddy's thoughts today

Just some thoughts today. While the big excitement is over for now and we seem to be settling in at home, thankfully altogether again, it has been dawning on me that we have just begun this great adventure. One phone call already to the cardiologist about Bekah's incision to make sure all is ok. Now watching her every move to make sure things are normal and debating when things are not normal. Wondering what warrants a call to the cardiologist and what doesn't. This is very different for us, and we are learning along the way that is for sure.

We so appreciate the prayers and support for our family. I thought I would mention a few more prayer requests that are on my mind as we settle into our new lives with this Little Lady. We certainly hope you will come along with us on this adventure and continue to pray and give your support to our family as we walk this road with Rebekah Grace.

1)Pray that Rebekah will continue to grow at the rate the doctors are targeting (about an ounce each day).

2)Pray that we can control her reflux so that it won't be a stumbling block to her growth

3)Pray that her heart will continue to be strong as it works double time right now.

4)Pray for preparations for her next surgery (funds to stay at MUSC, doctors, child care for the boys at home)

5)Pray that we can get both of the older boys in the same school to make the schedule easier.

6)Pray that the Lord will provide employment for me soon. I am still unemployed and the needs here are many.

7)Pray for strength for Nancy as she will be taking on more of the house and Rebekah's care when I return to work. (We are both short on sleep....)

8)Pray for the boys as Mom and Dad's time is stretched at the moment with taking care of Rebekah.

9)Again, as we have prayed from the beginning, pray that the Lord would be seen through our family, that we may be able to help someone else. I think most of all we want to be used by the Lord for His glory.

While we are so thankful for the prayers and support, and our wonderful doctors and nurses, we must give all praise to the Lord for He has brought us this far. No amount of skill or knowledge replaces the gracious hand of our Lord and Savior.

I guess that sums up what was on my mind today.

D