For the Boys

Of course, the rest of you can watch the videos also, but I promised to put videos from our time at the South Carolina Aquarium on the blog for the boys.  :)

This first video is when I fed the sting rays.  There were pieces of shrimp to put on the end of the long pole-thingy and when I put it in the water the rays would come grab the food.  Literally.  I thought the one ray was going to jump out of the water to get to me.  They have pretty decent-sized teeth, too, so I'm sure they could really bite hard if you got your finger in the wrong place!

Again, this video clip is mostly for the boys' benefit.  This is the big ocean tank where we watched all the fish swimming around.  It was so much fun, and Rebekah loved it!  There were two divers in the tank while we were there (I didn't get them in the video), and one of the divers came to the side of the glass and gave Rebekah a "high-five."  She was so excited about that!  She even told the anesthesiologist this morning about "high-fiving" the diver that was in the tank!

Hope you enjoy the videos, boys!  Have a great day in school today, and we will Skype later.  I love you!!!

Mommy

We Made It!

Very short post to let you all know that Rebekah and I made it safely to Charleston around 10:30 tonight.  We are settled into our room and I am (still!!) waiting for that little stinker to fall asleep.  She had just enough sleep in the car to not want to fall asleep again now.  :)

We will be up bright and early for Rebekah's 9:00 pre-op schedule tomorrow.  It will be a long day, and I will not have my computer with me.  So the next chance I get to update will probably be tomorrow evening.  Please pray everything goes smoothly tomorrow!

Nancy

Bumped

Well, we all know it can happen, and sure enough it did!  Drew answered the phone call from MUSC around 8:00 this morning, and we were given two options:  give up Rebekah's surgery date on Wednesday (and get put back into the schedule for another 60 or so days from now), or scramble and be in Charleston this evening for pre-op tomorrow and surgery on Monday.  We were left with the distinct impression that we had a choice to make, but they were really hoping we would make it down there tonight.

So after scrambling through 20 minutes of phone calls, we called MUSC back and told them to put Rebekah on Monday's schedule (December 12).  This involves no small effort as plans for the boys, packing, school (both for the boys and for Drew), and last minute details all have to be rearranged in a matter of a few hours.  Things that we had four or five days to finish up now have to be done in four or five hours.  In all honesty, I can't believe I'm as calm as I am right now.  Either the panic hasn't set in yet, or I'm in complete denial! :)

We have a lot of things that need to happen today just to make this work, so I'm going to list a few specific prayer requests for today.  First, pray for Drew's parents.  They, too, are rearranging their schedules since they keeping the boys for us and we are using their car to go to Charleston.  Drew's mom is on her way here, and soon after she gets here, Rebekah and I will leave.  That brings me to my next point.  I really don't like driving at night, and it looks like a good portion of my trip this time will be at night.  Please pray for safety for Rebekah and I as we travel.  Also, Drew had already rescheduled some of his exams for today (technically his exam week begins on Monday 12/12), but he was planning on taking the remaining two exams on Monday morning, so those will also need to be rescheduled for tomorrow or Saturday.  As soon as those exams are done and he gets things wrapped up at home, he will join us in Charleston.  Please also be in prayer for our boys.  For weeks they have known that Rebekah will have surgery, and we had gone over the plan with them.  We had also planned to do a few special things this weekend that are obviously not going to happen now.  They are in a bit of shock that I will be leaving in just a few hours.

Once Rebekah and I get to Charleston, things will slow down.  She needs to be at the hospital at 9:00 tomorrow morning for pre-op, and we will probably be there till 4 or 5 in the afternoon.  Rebekah will have x-rays, bloodwork, an echo, possibly a sedated echo, possibly a CT scan or angiogram, and I can't remember what else.  Pray that all goes well tomorrow.  Saturday and Sunday we are just going to hang out in Charleston and rest.  I should find out tomorrow what time we have to be at the hospital on Monday, but I'm sure it will be early.

That's all I can think of for now.  I will try to update later tonight when Rebekah and I get to Charleston.  Thank you for praying for Rebekah and our family!

Nancy

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

Rebekah Factor

We are in Charleston! After a very uneventful trip down, we arrived around 7:00 this evening. After getting supper and filling the truck, we checked into our hotel. When we got Rebekah out of her car seat, I realized that she was running a fever. Of course, we didn't have a thermometer with us, so we gave her some generic tylenol and Drew went to the nearest drugstore to get a thermometer. About an hour after we gave her the tylenol her fever was down to 99.5. I have no idea what this will do to the cath plan, but we will find out tomorrow.

We will be checking in to MUSC at 6:15 in the morning. If the cath goes ahead as scheduled, Rebekah will be first case at 7:30. I'm not sure what the plan will be if her fever goes up during the night. Right now she is very fussy and tired.

We will keep you all updated on the blog and facebook. Please pray for Rebekah; she really needs this cath to figure out a plan for lowering the pressures in her heart.

Nancy

Quick Update

Just to quickly let all of you know that the colds continue. :( All of us have in one way or another been sick with this round of colds. The current status is: Zachary and Justin appear to be over, or mostly over, the colds; Aaron and Caleb are somewhere in the middle with runny noses and occasional coughs; Rebekah still has some runny nose, and has developed more of a cough. I also detected some wheezing in both lungs tonight when I listened to her breathing. So far she is managing well with only a slight drop in her oxygen saturations. Normally she sats in the mid-90's on room air, and at 100% on oxygen. Tonight she was 91-92% on room air and about 97% on oxygen. We will continue to watch her, but unless she takes a drastic turn for the worse, we are much better off at home than at a doctor's office or hospital!!

Mom and Dad are feeling pretty rough tonight. I have been fighting cold/allergies/sinus symptoms for a few weeks now, and I think this last round was enough to knock me out. I'm planning on getting to the doctor tomorrow if I can get an appointment. Drew is also not feeling well, and we would both appreciate your prayers.

Thankfully, even though many of our friends and church family have been battling the flu, our sickness appears to just be a bad head cold. No one has had fevers, headaches, or body aches that are associated with the flu.

Also, please be praying that Rebekah recovers sufficiently from this cold before we head to Charleston in two weeks (2 weeks!!) for her heart catheterization. Given the seriousness of her pulmonary hypertension, this heart cath is not something that we want to delay if at all possible. I'm not sure what the threshold of "sick" versus "too sick" for a heart cath is, but we don't want to be anywhere near that!

And to throw out a little teaser, I have an exciting video to post of Rebekah...tomorrow! I haven't gotten it downloaded from the camera yet, but I will get it done tomorrow. :)

Thanks for praying!

Nancy

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!!

Let's Roll!

We're (almost) ready! Lists have been made, notes have been written, instructions given, and packing is in progress. We are still on target to leave by mid-morning and hopefully arrive in Charleston by mid-afternoon. Please pray for safety as we travel as most of South Carolina is forecast to have rainy, stormy weather for the next two days. Drew and I will be driving separately so that he has the flexibility to return to Greenville to be with the boys as needed.

As far as we know, we will not have internet service at the house we are staying in. So, our updates will be limited to our time in the hospital or Facebook updates. We are not planning to be at the hospital on Wednesday, so our next blog update should be sometime on Thursday.

Thank you for all of your continued prayers and encouragement. To our friends at Beacon Baptist, your love and generosity has overwhelmed us. Thank you seems so inadequate, but we want you to know that we love and appreciate each of you.

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

We're Back!

What a long trip we had yesterday to Charleston and back! It was a little after eleven last night when we got home, and we were tired! Drew and I and the boys all have colds, so that made the trip a little less pleasant than it otherwise might have been, but overall it was a good trip.

The longest part of the entire procedure was trying to gain IV access so the radiologist could inject the dye needed for the contrast during the CT scan. It took a little over an hour and five sticks before the surgeon's assistant finally was able to access a vein in Rebekah's wrist. What an ordeal! The nurse had given Rebekah a little Versed to calm her before we started, and by the time we finished it had long since worn off. She was also given sedation through her IV before the CT scan was started so that she would be still, so she slept right through the scan and the ultrasound a little later.

The good news is that the radiologist was able to get all of the information that the surgeon needed to make a decision about Rebekah's next heart surgery. The bad news is that the information was exactly what we had been told to expect - no usable collaterals. Rebekah does have some collateral arteries, but they are very, very tiny and not something the surgeon would be able to do anything with. We haven't heard the official word from the surgeon, but based on what our cardiologist shared at Rebekah's last visit, we are pretty sure that the surgeon will be postponing Rebekah's heart repair indefinitely. The two deciding factors for heart surgery will be 1) Rebekah begins to outgrow (in size) the band on her left pulmonary artery and her oxygen sats get progressively lower, or 2) Rebekah begins to show signs of heart failure at which point surgery will become necessary. Until either of those scenarios occurs, we are pretty sure that Rebekah's surgeon will not schedule surgery. At this point, it could be many months before she would need surgery.

The ultrasound of Rebekah's leg/groin area was as we expected. The doctors wanted a good look at the fistula in Rebekah's left leg as well as information about accessibility in both legs for another potential catheterization in the future. The technician performing the ultrasound did not say much, but I did see the fistula still there (although it no longer affects her circulation in that leg). I have no idea what kind of narrowing she saw in the arteries that may or may not affect further catheterizations. I imagine we'll hear from Rebekah's cardiologist later if they found anything significant.

That's about the extent of our trip to Charleston. We are very thankful that it went well and grateful for all of your prayers. We are not planning on church tomorrow as all of us are still sniffing, coughing and have sore throats. No need to spread that around! Please pray that we can get over these colds and that Rebekah does not come down with it!

Nancy

Why do something when you can wait?

While it sounds a bit unconventional in everyday life, I am pleased that this is the philosophy that Rebekah's surgeon and doctors have decided to use in regards to her heart surgery.

Drew and I (and Rebekah) met with Dr. Lucas yesterday (Wednesday) to discuss the results of the catheterization that Rebekah had two weeks ago. While we knew that the doctor did not get all of the results that he wanted, we did not realize how little he got. I think I mentioned on here at the time of the cath that the doctor was not able to gain access into Rebekah's artery in her right leg/groin area. We didn't realize that was such a big deal until yesterday. Basically, the doctors only got half of the information they were looking for since they could only go through one artery.

I like to play in my exersaucer!

From what information they did get at the cath, it does not appear that Rebekah has any usable collateral arteries to create a right pulmonary artery with. Dr. Baker, who did the heart cath, had told us that Rebekah would likely go into her heart surgery without a sure plan of whether or not those collaterals would be usable. When the surgery was completed, the surgeon would be able to tell us that he either was able to use the collaterals or he wasn't. That simple. Or not.

My first bite of ice cream....yummy!! (Please excuse the bedhead!)

Apparently Dr. Bradley (surgeon) wants a more definite game plan before going into surgery with Rebekah, so we are traveling back to Charleston tomorrow (Friday) for a CT angiogram and an ultrasound of Rebekah's groin. The CT scan will hopefully give the doctors and surgeon a better idea of the growth (or non-growth) of Rebekah's collateral arteries. From there, the surgeon can proceed with plans for Rebekah's heart surgery. The ultrasound we are a bit unclear about. All of the people "in the know" were apparently already gone for the day before we were called and informed of the ultrasound this afternoon. We are guessing that it is to check on the healing of the fistula that was made during the last catheterization, but we will have to wait until tomorrow to find out for sure.

I'm practicing sitting up more and more!

Based on the results of tomorrow's CT scan, the surgeon will decide on one of two plans. The first would be that Rebekah's collateral arteries have grown amazingly (reality: no one in the medical field believes this to be the case) and Dr. Bradley would proceed with a full repair of Rebekah's heart and lung in the next few weeks.

Finally meeting Uncle Carl and Aunt Wilma. We loved having them visit!

The second, and much more likely, outcome of tomorrow's CT scan is that the doctor finds no usable collateral arteries and the plan will be to wait as long as Rebekah's heart shows no signs of failure to do her heart repair. This option would commit her to having a single-lung physiology for the rest of her life (barring a miracle and the collaterals actually growing). The reason for waiting is basically the title of my post. If Rebekah doesn't actually need to have surgery right now, and she is no worse off for waiting, why rush into surgery just to have it done?

I'm working on clapping my hands now.

The way Drew and I are choosing to look at waiting is that it is all the more benefit to Rebekah. First and foremost, we have time to continue praying for those collaterals to grow. The doctors have only said that it is unlikely for them to start growing at this point, but it's not impossible. So, we continue to pray. Secondly, waiting to have surgery will allow Rebekah to continue growing, getting stronger and getting bigger. All of those things will be to her advantage going into the surgery. Thirdly, the longer we wait to have this surgery, the longer we can wait to have the next surgery. Repeat surgeries before adulthood are caused by growth, not the wearing out of parts. So, the bigger Rebekah is when she has her initial heart repair, the bigger the parts the surgeon can use and the longer we can postpone Rebekah's next surgery. Sounds good to me!

Helping Mommy make Zachary's birthday cake. Mommy let me try some frosting, but don't tell!!

So, tomorrow morning we are leaving for Charleston in order to be there for Rebekah's 1:00 CT scan. Please pray that the scan goes well and that the radiologist can get clear, accurate pictures of Rebekah's anatomy. If the CT scan is not successful, Rebekah will be having another catheterization in the near future, and this time it would be a little more invasive in order for the doctors to find the information they need.

Looking cute in my girly overalls!

In other, very good news, Rebekah's diarrhea has been gone for a little over a week!! The reason? We started feeding her food! I know, seems like such a simple thing, but with Rebekah, we have learned that nothing is simple! :) Rebekah has had pears, squash and sweet potatoes in the last two and a half weeks. She is loving food and other than being a little uncoordinated in getting the food off the spoon, she is doing a great job at eating!

I love eating food!

Please remember us in prayer tomorrow as we will have a very long day. We are making this a one-day trip in order to avoid the cost of staying over tomorrow night. So we will have 8+ hours of driving plus time in the hospital tomorrow. All of that and neither Drew nor I are feeling well right now. We are still fighting allergy and cold symptoms. Above all, please pray that the tests go well and pray, pray, pray that those collaterals start growing!

Nancy

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

Belated Update!

I will preface this post with a disclaimer: Mommies do not get sick days! :) Yes, I have been fighting a bad head cold for a couple of days now and feel absolutely miserable. Daddy has done a great job this morning so I could have a few hours to rest. Now for the update!

Rebekah was released from the hospital late Wednesday afternoon. She showed quite a bit of improvement in both her fever and disposition after being on the antibiotic for her ear infection. She will be on the antibiotic for another week or so.

Rebekah has also had an increase in the amount of Zantac she takes to control her GERD (reflux). One thought is that the reflux has been contributing to the retching and gagging we have seen for the last week or so. So far today we have not seen any episodes of gagging, so we are hoping that the increase in Zantac is actually working. It would be nice if that is all it takes to solve that problem! :)

On the respiratory front, Rebekah seems to be good somewhere between a half liter and a liter of oxygen. All of the doctors involved agree that she will probably be on some amount of oxygen until her heart repair. We have a follow-up visit with the pulmonologist on Tuesday.

Now for the GI issues. We have seen some decrease in the amount and frequency of diarrhea that Rebekah has been having. The pancreatic enzyme test that she had was normal, so that ruled out several things, including Crohn's disease. Yeah! We were excited to cross that off the list! We are repeating some other tests this week to try to determine whether or not the dairy protein allergy is the culprit that we are dealing with. It is possible that Tuesday or Wednesday we will get clearance to begin feeding Rebekah breast milk again (the dairy-free variety! :). Then the tests will be repeated on Thursday and Friday to see if she is tolerating the new dairy-free diet. If so, we will be able to keep on with the dairy-free breastmilk. If her symptoms get worse or other symptoms develop, Rebekah will probably have an endoscopy next week while we are in Charleston for her heart catheterization.

The boys are thrilled to have Mommy and Rebekah at home. They love to play with Rebekah and try to get her to smile for them. Zachary is becoming very safety conscious with Rebekah. He makes sure to keep the rails up on her crib, watches that Rebekah is not chewing or choking on her tubing and enjoys taking care of Rebekah in general.

Sorry for the lack of pictures. I have some, just don't have the energy to get them posted today. Hopefully I will be back to feeling better soon! Thanks for all of your prayers!

Nancy

Hold the train!

The verdict is in and we are not going to Charleston this week. After two days of discussion between our Greenville cardiologists, our pediatricians, and the cardiology group in Charleston, it has been decided that we need to wait and let Rebekah's lungs get back to normal before attempting the heart catheterization. We will know more this week, but the current plan is to try to reschedule in about two weeks.

So sweet!

Rebekah has had a busy two days! Yesterday, she woke me up around 5:00 in the morning with her oxygen sat monitor beeping. She had dropped into the mid 70's and was not able to come back up on her own. So her nurse gradually increased her O2 until Rebekah was at a full liter of oxygen. Then Rebekah had another incident early in the afternoon yesterday when her sats went down again, so we are currently on a liter and a half of oxygen just to maintain sats in the low to mid 80's. Our night nurse was going to try to wean Rebekah down some during the night, but her sats were never stable enough and high enough to wean. That left us with a big question - what is going on to make Rebekah's sats so low and unstable??

I love you!

This morning, Dr. Butler came by (Zac and Justin both had his wife as their K-4 teacher.). He looked at the chest x-rays that Rebekah had done yesterday and said that the lower part of Rebekah's left lung has collapsed most likely due to whatever respiratory bug she has right now. If she is not expanding her lungs fully, they are more likely to collapse. Thankfully, her right lung looks fine. We also ruled out RSV yesterday, so that is encouraging! Dr. Butler ordered some chest PT for Rebekah (remember how much she liked that last time she was in the hospital?) and some nebulizer treatments with Xopenex every 6 hours. Xopenex is a fairly new drug that is supposed to have the result of opening the airways just as well as Albuterol, but is not supposed to elevate the heart rate and blood pressure quite as much as Albuterol does. We'll see how Rebekah does with it.

I like to smile!

Rebekah also had an echocardiogram this morning, just to rule out any possible heart complications. Dr. Raunniker came by to see us this morning, and he was going to read the echo and let us know if there were any problems. We aren't expecting any. This looks like the work of a respiratory illness, not a cardiac problem.

So, that leaves us in the hospital a few more days until we can get Rebekah's lungs back to normal. We have officially been in the hospital for half of 2010 now, and are looking forward to being able to go home. We are so thankful that Rebekah made it without having to be hospitalized until almost Christmas and then again in January. Many other kids and parents are not able to say that. If you think of it, please keep our little friend, Josiah, in your prayers. He had been home for a few days after Christmas, but had to be taken back to MUSC with unexplained high fevers. Now the doctors believe he has an ulcer in his stomach and have put him on some new medications. I'm sure their family would appreciate your prayers.

Cardiology Update

Yesterday was Rebekah's cardiology appointment, and while there, we also popped in to see the dietitian for a weight check. First, the cardiology appointment....

Rebekah's echocardiogram went well, as usual. As much as they can see on the echo, Rebekah's heart function looks good and she does not seem to be in heart failure. However, Dr. Lucas told us that because Rebekah's heart is essentially functioning as a single ventricle (because the blood mixes back and forth on both sides of her heart it is as if she only has one side working), it is almost impossible for them to measure the amount of heart failure, if any, that Rebekah is experiencing by echocardiogram. The only true way to determine if Rebekah's heart is failing is by heart catheterization, which is coming up at the end of January. Dr. Lucas said the cath lab doctor, Dr. Baker, will measure something called QPQS, which is basically the amount of blood flowing to the lungs and the amount of blood flowing to the body. That will give the doctors the information to know how hard Rebekah's heart is working to keep her lungs and body supplied with oxygen. In turn, that information will tell us how close she is to needing her heart repair.

Dr. Lucas has also had some conversations with Dr. Bradley (the head cardio-thoracic surgeon who will be doing Rebekah's next surgery), and Dr. Bradley feels that the collateral arteries that we had hoped were growing are probably not growing. Based on pictures and notes from Bekah's original surgery and information that Dr. Lucas has been able to send to Dr. Bradley, he feels that she really has not shown any signs that those collaterals have grown. We are praying that Dr. Baker will find out differently in the cath lab, but we are preparing ourselves for the difficult decisions that will come if Rebekah does not have large enough collaterals to work with. Basically, in Dr. Lucas' words, we will come to "a fork-in-the-road decision" about what to do. We can possibly do another "temporary" fix if her heart allows, to try to give the collaterals more time to grow, but everyone is pretty much agreed that if they haven't shown signs of growth by now that they probably won't. Or, we can proceed with the heart repair, and Rebekah will only have one working lung. Ever. From what Dr. Lucas said, there really isn't any middle-of-the-road on this one. I'm not really sure what kinds of options are available, but we have been told there are several options for the heart repair if the collaterals have not grown. I think the idea is to keep from stressing her working lung too much in the process of repairing her heart. Of course, the big day for the cath lab is January 26, and those results will answer many of the questions we have right now. We probably will not know much, if anything, when we leave Charleston, but we are having a meeting with Dr. Lucas on February 3 to discuss the results of the cath lab and weigh in on the opinions of all of the cardiology team from Charleston. We won't actually be meeting with the team, but they will send the results and opinions from their big meeting to Dr. Lucas for him to share with us. We will, of course, be meeting with them all before Rebekah's heart repair in Charleston.

Dr. Lucas is a little concerned (understandably) about Rebekah's ongoing congestion and her on-again-off-again fevers. He mentioned that if we come down with something more serious that what she was hospitalized with a couple of weeks ago, or if this turns out to be another lingering illness similar to the last one that required hospitalization, he will be likely to send us to Charleston. Ugh. We, of course, want to do what is best for Rebekah, but Charleston is a logistical nightmare right now! There are two reasons why Dr. Lucas feels that Charleston would be a better choice in those events. First, if Rebekah continues to have lingering, on-going illnesses, there is a good chance that her heart is playing more of a role in her health than we think it is. By being in Charleston in the cardiac unit, they will be able to monitor and test things much more closely and accurately than here in Greenville. Second, Rebekah cannot go into the cath lab while she is fighting a respiratory illness. The results would be too inaccurate to be of any help. So, if Rebekah is in Charleston, they could work to get her over the respiratory illness and then choose the optimum time to go to the cath lab for the best possible results. Please pray with us that Rebekah will fight off any little colds and stay healthy. And please pray that if we do go to Charleston, the logistics will be worked out (care for the boys, transportation, finances, lodging, etc.).

There was a bright spot in our visit yesterday.....Rebekah is gaining weight!! It seems that the continuous feeding through the night is really working, which makes getting up in the night much easier! :) Rebekah now weighs 10 pounds and 1 ounce and is 23.25 inches long! In the last month or so, she has gained a little over a pound (because she had lost some weight she was less than nine pounds) and she grew about 3/4 of an inch! We are so excited!!!

We are off to a rather lengthy pediatrician's visit this morning. Rebekah has her six month well-check and immunizations, and there will be a lot of ground to cover regarding Rebekah's care. We will fill you in on all of the details and try to get some new pictures posted soon!

Nancy

Six Months!!

Miss Rebekah is now six months old! In some ways it seems like so much longer; in other ways, it's hard to believe that we have had her for that long. Rebekah was able to come home from the hospital on Thursday, Christmas Eve, and we were all happy to have her home for Christmas! We have seen a great improvement in Rebekah's breathing; she no longer has a raspy sound to her breathing and is more alert and energetic than she was last week.

Rebekah didn't really have much to do with Christmas and presents, but she did look cute!

Just for fun, we included Rebekah in our Christmas dinner. She had her first taste of applesauce and seemed to like it. We had a few strange looks, but each time the spoon came close to her mouth, she opened up for more! We aren't pushing food right now and will probably hold off on solid foods mostly until after her heart surgery. It just takes more energy for Rebekah to eat and digest solid foods, and energy is something Rebekah doesn't have a lot of! Once her heart surgery is behind her, she will be using a lot less energy to breathe and will have more left for the fun things.

What is this stuff???

Rebekah continues to have therapy twice a week to work on her development. She is doing much better at holding up her head and rarely needs head support anymore. We are working on sitting up with pelvis support, rolling over both ways, playing with toys while sitting up and eventually drinking with a sippy cup.

In the area of weight gain (or lack thereof), we are back to nightly g-tube feedings. Rebekah is getting about 8 ounces (almost half) of her daily intake by g-tube. We are slowly working on increasing that to 10 ounces at night.

All wrapped up with a big red bow!

And, we have a date.....for the cath lab, that is! Rebekah will be going back to MUSC on January 26 for her heart catheterization. They will thread a catheter from her groin up to her heart in order to measure pressures in her heart and lungs. The doctors will also be able to get measurements of both her heart and the possible collateral arteries that might be used for a right pulmonary artery. There are basically three possible outcomes from this procedure. One, Dr. Baker finds a collateral artery (or more than one) large enough to make a pulmonary artery to supply blood to Rebekah's right lung. Surgery would then be scheduled to make the pulmonary artery and repair Rebekah's heart. This outcome is what we are praying for! It is the best possible scenario for Rebekah.

Two, a collateral artery is somewhat larger than the rest, but not large enough to use for a pulmonary artery, so a stent or balloon procedure would be used on the collateral artery to try to enlarge it. The heart repair and pulmonary artery surgery would be scheduled based on the probable growth and use of the collateral artery. While not ideal, at least this outcome would mean an eventual full repair of Rebekah's heart and lung.

Three, none of the collateral arteries have grown enough to be used as a pulmonary artery and Rebekah will never gain the use of her right lung. Obviously, we would be very disappointed at this outcome. We would love for Rebekah to be able to have some use of her right lung, even though we are aware that she will probably never have full function of it in any scenario. If no collateral artery can be used, we would then have to reassess how to proceed with Rebekah's heart repair without causing undo stress on her working left lung. We are praying that we don't have to face those decisions.

Sweet girl

Wishing all of you a Happy New Year!!

Drew, Nancy, Zachary, Justin, Aaron, Caleb and Rebekah Grace

Charleston

What a day! It was a long day, but Rebekah has her Mic-key button now. It was not without a little trouble, though. Her old tube seemed to be perfectly happy right where it was and had no desire to come out, so it was a little painful for Rebekah. The new button is in now, and it will be much nicer for Rebekah. After a couple of doses of Tylenol and some sleep on the way home, Rebekah seems to be feeling a little better.

Rebekah has occupational therapy in the morning, so we're off for hopefully a good night's sleep!

Nancy

Update at last!

I am very sad to have to say that I will be updating with no pictures. We are having some technical issues with our external hard drive, and I have tried four different days without success to upload pictures. I need to get my computer experts (a.k.a. Drew and my brother David!) to take a look at it and see what the problem is.

Our biggest news of all this week is that Drew has a job!!!!!!!!!!!!!!! We are so very excited and grateful that he now has a permanent, full-time job after almost 18 months of temporary work or no work at all. The Lord has moved him into a solid, growing company with plenty of room for Drew to grow into the job. He started on Tuesday and worked through the week and is very much enjoying his new job. His is working for Addison Homes, LLC, and we have enjoyed getting to meet Todd, Michelle and Caroline this week. Take a minute to check out the Addison Homes website.

After several weeks of struggling with the decision about a g-tube for Rebekah, we have finally decided that we are going to do it. Even after my last post, we were still very doubtful about the procedure and whether or not Rebekah truly needed a g-tube. However, in watching Rebekah closely in the last two weeks, we have noticed a definite 1-2 good days/2-3 bad days trend. While the good days are great, they are not making up enough ground to outweigh the bad days and Rebekah is not growing much at all. At thirteen weeks (tomorrow), Rebekah weighs only 8 pounds and 5 ounces - the birth weight of her brother Caleb! Her doctors would have liked to have seen her close to the ten pound mark by this time. All of that combined with an affirmation from Rebekah's heart surgeon, Dr. Hsia, and we feel much more at peace about having the g-tube placed. In addition to having the g-tube, the doctors will also be doing the Nissen procedure to try to limit the amount of reflux Rebekah has. The concern is that Rebekah has the potential for aspirating liquids into her lungs every time she has a reflux episode and spits up. That in itself would not be a good situation, but because Rebekah only has one working lung right now, it would be even worse in her case.

So we will be heading back to Charleston this week Tuesday evening for an early morning pre-op visit on Wednesday. Then we will be back home Wednesday evening and back to Charleston next week for Rebekah's surgery. Right now our surgery is scheduled for Monday, September 28, unless for some reason Rebekah would get bumped to Tuesday. We should know that for sure before we leave her pre-op visit on Wednesday. So, all of you favorite nurses and other friends, be sure to find us next week! I am praying that we will be in PCICU or 7C where Rebekah was following her heart surgery. There is a chance that we could get put on the regular floor, but I am super paranoid about Rebekah "catching" something such as an infection or virus, so I'm hoping we go back to the heart floor with our heart friends.

We have a few very definite prayer requests for Rebekah's g-tube surgery. First, please pray that Rebekah will not get sick or come down with an infection before, during or after her surgery. Second, please pray for wisdom for the doctors as they complete the g-tube and Nissen procedures. Third, please pray for quick healing and recovery time for Rebekah. Lastly, please pray for our family as we are apart while Rebekah has her surgery, and for Grammy while she is here with the boys. Thankfully, the doctors are projecting no more than a week if everything goes well.

We also have a little friend whom we have mentioned before that is not doing well right now. Please keep Josiah and his family in your prayers. You can read all the details on his blog, but the short story is that he is battling a couple of infections right now and is having a rough time of it. I'm sure Erin and Milo would appreciate your prayers.

Nancy

Progress!!!!!!!!!!!!!

After having fairly steady contractions for the last two days, I checked in today to find that I am still at 2 cm, but I am 50% effaced!! I am excited!! Since being hooked up to the fetal heart monitor, I have been having contractions every 2 minutes. It would be so cool to have Rebekah all on my own without pitocin, but we will wait and see what happens. IF I stop progressing, the plan is to start with pitocin in the morning around 8:00 or so.

By the way, the doctors are allowing me to eat supper, so I am happy!! :)

Updates to follow as soon as something happens!

Nancy

Last Day to Guess!

Today is the last day to guess Rebekah's birth weight and height! We've been having lots of fun seeing how much each of you think Rebekah will weigh. Click here to add your guess!

As you can imagine, we are very excited to meet her. We were even wide awake this morning at 6:00 even when we had the opportunity to sleep in! We'll be hanging out at the hotel for the morning and then some sight seeing before checking in this afternoon.

Contractions have been pretty steady through the night, so maybe things will progress quickly tomorrow! :)