Three weeks!

I hope all of you had a wonderful Thanksgiving holiday! We definitely enjoyed ours! It has been nice to have the boys have a few days off school, but it is time for them to go back. Too many days off makes for restless little boys! We did get most of the Christmas decorations up, so that kept us busy for several hours.

Rebekah is doing very well, and for that we are so thankful. She is slowly starting to come back to the little girl that we had before surgery, which means that she is moving around and getting into mischief! :) We are pleased that she is feeling well enough to get into things, so we're not complaining!

I love my Oreo cookies!!

You can see from these cookie pictures how well Rebekah's scar is healing. It is definitely more red than it was prior to surgery, but unless you compared before and after pictures, you probably would not have guessed that Rebekah had surgery three weeks ago. The two sites where Rebekah's chest tubes were are still pretty big scabs, but we are very thankful that they did not get infected. For a few days after we got home they were quite raw and open. We very diligently slathered them with antibiotic ointment and changed the dressings frequently. While she will definitely have some scarring, I'm glad that the areas are healing finally.

Hmmm....where did my cookie go?

On the outside of Rebekah's heart scar, the skin was literally glued back together with Dermabond. It will make for a much smaller, smoother scar than if there had been stitches on the outside. Underneath her skin, there is a running zig-zag stitch starting at the top and working down to the bottom. Dr. Bradley used a material that is dissolvable, so over time the stitches will disappear.

Mmmmm....that was good! May I have seconds??

Rebekah had a good check-up with our Greenville cardiologist. He said that echocardiograms are a very subjective measure of heart function, so he can't really tell us how the function of the right side of Rebekah's heart is doing compared to how it was in Charleston. He did feel, however, that the function of the right side was at least in the low-normal range. We are all hoping that the function will improve over time.

As far as Rebekah's pressure, it has come down some according to the echo. Again, the echo is not a perfect measure, but it at least would give us an idea if it was getting drastically higher. We certainly hope that the pressures are coming down as the echo has indicated. Dr. Lucas will continue to watch the pressure here, and we will get a true reading during Rebekah's heart catheterization in March.

Daddy and his little pumpkin!

One exciting piece of information that Dr. Lucas gave us is that he intends to wean Rebekah's lasix dose over the next few months. Rebekah has been on Lasix since birth, but Dr. Lucas feels that if she continues to keep the fluid off her heart and lungs, then he sees no reason to continue the medication. On Rebekah's next visit she will have another echo and a chest x-ray. If it all looks good, we will be dropping one of her two daily doses. We will continue giving Rebekah one dose of Lasix per day for a few months till we see how her body tolerates the missed doses. If all goes well, Rebekah could be off Lasix by spring!

I love my new music toy from Aunt Aimee!

Rebekah is making steady progress back to the physical activities she was doing prior to surgery. One of the best things has been this little music toy. Rebekah loves to be a big girl and sit on the bench by herself. She has been able to maintain fairly good balance for twenty or thirty minutes at a time. There are shapes that light up and play music when Rebekah pushes them. Rebekah loves music, so this is the perfect toy for her! Dr. Lucas felt that Rebekah's stander could put too much pressure on her chest, so we are holding off on that for now. Rebekah has been in her walker several times, though, and she is taking 5 or 6 steps with someone holding on to her waist for balance.

My dimples are finally back!

For now Dr. Lucas is holding off on resuming Rebekah's therapies. He wants to give her chest a little more time to heal so that therapy will not stress or hurt her. When Rebekah has her next appointment in December, he will re-evaluate therapy based on how well she is doing.

Rebekah's piano concerto!

I finally have my computer up and running now! I downloaded over 400 pictures for the month, and I am working on editing them. When I get them done, I am planning to post pictures from Rebekah's hospital stay in their chronological order. I will be sure to link to those pictures so that you can view them if you wish. We looked back at the pictures last night and were amazed at how far Rebekah has come in three weeks. Sometimes it seems like she is slow to make progress, or that she lost some skills during her hospitalization and has not yet gained them back, but the progress she has made is astounding. We have much to be thankful for this year!!

Nancy

Pictures!!

Just a quick update with a few pictures of Rebekah and her brothers. We have been busy this weekend catching up on things that needed attention and just having fun together. We spent a couple of hours last night playing Wii together, and the boys are still talking about it today. I think the over all favorite game was fencing, but we also had fun with the wakeboarding and canoeing.

Caleb had hugs for his baby sister when we got home.

Yesterday Rebekah went to see her pediatrician, and he said she looks great! The only comment he made was that she had quite the heart sounds now - much more than he can distinguish! I guess she has several loud murmurs from the conduit and trunk. He did mention that her heart rate is quite high, which we knew before leaving the hospital. It goes along with the high pressure that she now has.

Rebekah's brothers were SO excited to have her back home!

This week is going to be a busy one with family all coming to see Rebekah. Oh, and coming for Thanksgiving, too! :) I think that's the excuse, but we all know the real reason is to see Rebekah and the boys.

Zac and Aaron with Rebekah

Before we know it Christmas will be here! The holidays will be especially fun this year with Rebekah. We are certainly going to enjoy this holiday season, not knowing what the new year may bring with a heart cath and possible surgery.

Pigtails!!

While I went grocery shopping this morning, Daddy got creative with Rebekah's hair! We have talked about Rebekah's hair being long enough for little pigtails or ponytails, but this was the first time for pigtails. I thought it looked cute!

Hope you all enjoy the rest of your weekend. I know we will!

Nancy

Home at last.

Home at last.

Home Home Home

The 24 hour clock has run out and the verdict is we are going HOME. Mom and Rebekah are all packed and unplugged from the monitors. They just need to see one last Dr. on rounds then they will be free to head home.

We will have quite a surprise for the boys when they get home from school today.

Praise the Lord that Rebekah has done so well and that she is able to come home. Thank you to all of you who faithfully pray for her and our family. We can see God working and guiding us along this journey with Rebekah.

D

10:00 and still going

So much for earlier plans of getting Rebekah to sleep. It's now after 10pm and she is going strong. She isn't being bad, or even fussing. She's just awake. And bored. And ready to be out of this bed and out of this room! :)

When our nurse checked Rebekah's temperature around 9:00 tonight, it was 99.8. Grrrr..... That is still considered low-grade, but if we string a couple of temps like that back to back, I have a feeling we're going to be starting our 24 hour countdown all over again. I'm really, really hoping to be able to get home soon!

I'm getting ready to go to bed myself, so hopefully Rebekah will get the hint and also go to sleep. Here's hoping! :)

Nancy

Maybe, Possibly.....

We might just be hearing whispers and rumors of home!! Rebekah has not had any fever at all today, so we are cautiously excited that she will continue that trend through the night and tomorrow. Overall, Rebekah is doing really well. She is more active, playing and in general ready to be out of the hospital! I, for one, will be elated to get out of the hospital and into a regular sleeping schedule! Hospitals are great when you need them, but they are an awful place to be when you aren't sick! :)

Rebekah was able to go to the Atrium today (the playroom). We had fun making a tie-died shirt with some volunteers that came today. Also, we played with some Little People and a wooden doll house. Rebekah had great fun dropping the toy doctor down the stairs. (Note: I don't think she had any clue that it was supposed to be a doctor, but I found it to be quite humorous!) After all of the excitement and playing, Rebekah has come back to the room and crashed. Maybe she will sleep well tonight!

This afternoon we went down to the radiology floor to have an ultrasound of the lump on the back of Rebekah's neck. Basically, the ultrasound tech and the radiologist have no idea what it is! The radiologist said that if Rebekah was two or three months old, she would have diagnosed it as a hemangioma, but Rebekah is beyond the typical age when hemagniomas develop. The ultrasound did define that it is not a tumor, or hard mass, as would be typical with a cancer. So, the plan is for us to keep an eye on it and when we come back in 3-4 months for Rebekah's heart catheterization, they will do another ultrasound if it has not gone away before then. Of course, if it begins to grow, becomes red, inflamed or any other changes, we will have it imaged again sooner.

Miss Boo is awake and ready for her dinner. I'm hoping to get her in bed fairly early so she can have a good night of sleep. We'll see how that goes! :)

Nancy

My best frowny-I'm-not-going-to-smile face. Oh, and Rebekah is enjoying a real bath in a real bathtub today!

Busy Day!

This morning's wake-up call was a trip to have an echocardiogram done. We were not warned about having one last night, so it really was a surprise this morning. Apparently, one or more of the doctors wanted some very specific 3-D pictures of Rebekah's trunk and conduit to see if there was any infection growing inside her heart. We still haven't heard what the results are, but I'm going to assume that no news is good news. If there was a problem, we would have heard by now.

We had no sooner gotten back to our room after the echo then they told us we were headed to x-ray! I barely had enough time to get Rebekah the milk she was asking for! :) The x-rays were to check Rebekah's heart and lungs. Again, we haven't heard anything, so I'm assuming nothing was out of the ordinary. I will be requesting that we discontinue the chest physical therapy if her x-ray looked good. It is one more interruption in our day that we can do without if everything looks as good as the therapists say she sounds.

When we got back from x-ray, I had a few minutes to feed Rebekah some breakfast, then it was time for the doctors to come in for rounds. Not much new information there. A few days ago, the doctors had thought that we might be dealing with a virus of some sort, but the fevers have gone on long enough that there isn't much chance of this being viral. Dr. Hlavacek said that it's about a 50/50 chance of ever determining what these fevers are caused by. He said a lot of the time, post-surgical fevers just come and go with no explanation. One day she could wake up and be fever-free and that will be the end of it. Or, it could be a sign of something else going on, and that is what the doctors are trying to figure out. Dr. Hlavacek said that when a fever gets higher, it is a result of a surge of bacteria (in this case) being let out into the body, and the fever is the body's signal that white blood cells are going off to fight the infection. So, ideally, he would like to get blood samples and cultures when Rebekah's fever is higher than 101 so they will have the best chance of figuring out what's going on. I'm not sure of all of the tests he is thinking of, but one is going to be a urinalysis to see if Rebekah has a UTI. She has never had one before, and doesn't really act like she has one now, but he's going to rule it out. Other than that, he said they were going to do some blood tests that were "a little outside of the box" to see if they can pinpoint this fever thing.

So, while I am very grateful that we are not dealing with something much, much worse, it is very frustrating to be here with no end in sight. Especially with an increasingly bored little girl! Rebekah is not able to go to the playroom, or interact with other patients because we don't know the cause of her fever, and we certainly don't want to spread something to another patient. We're just taking things one day at a time!

The good news is that one of the physical therapists brought a play mat and a bench so that Rebekah can be out of her crib and playing on the floor. We played on the mat for a couple of hours this afternoon. Rebekah is sitting very well without support, and she did a bit of crawling Rebekah-style today. We had wondered if supporting her arms to crawl would be too much pressure on her chest and incision, but apparently it did not bother her at all. She didn't even hesitate, so we are excited about that!

That's pretty much the latest from 781! Looks like we'll be hanging around a while longer!

Nancy

See, I can smile when I want to! :)

Playtime!

I'm talented! I can play the piano with my feet, play with blocks and wave all at the same time!

What a difference.....

.......24 hours can make! Yesterday, Rebekah's white blood count was still climbing, her fevers were high, and she was just miserable. The doctors were talking about scans, more blood work and possibly an infected incision.

Today, Rebekah is looking much better! Her fevers are not gone, but they are lower and now classified as "low-grade." As of this morning's blood work, her white blood count has dropped, which is great news! Dr. Bradley came in before 7:00 this morning to check Rebekah's incision for himself, and he is very pleased with how it looks; he is not at all worried that it is infected. He said it looks great! So, the plan is for Rebekah to make it for 24 hours fever-free with no other symptoms. If we make it to that mark, we may get to start talking about that magical place called "home!"

Drew made it home safely yesterday afternoon, and the boys were beyond excited to see him! We had not mentioned anything to them about Drew going home, just in case for some reason plans changed at the last minute. Drew said Aaron told him over and over "Thank you for coming home, Daddy!" And Caleb apparently has been Drew's shadow since he got home. Zac and Justin were also thrilled to see Daddy and tell him all about their adventures with Grammy.

Rebekah has had a busy morning so far! We have had breakfast, bath time, bed change, vitals, the daily weight check, hair styled, a lotion massage, respiratory therapy and if we can keep people out of our room for longer than ten minutes at a time, hopefully nap time! This busy schedule can wear a girl out!

So, we're still taking it one day at a time here, but hopefully we won't have to count too many more days before we can head home also!

Nancy

Good morning everyone! :)

Rebekah has become an early bird here in the hospital. She used to sleep in till 8:00 or so at home, and now she is waking up between 6 and 6:30. Rise and shine, Sunshine! :)

We are back to a frustrating "square one" here in Room 781. For the last three days, Rebekah's white blood cell counts have been rising, indicating an infection. She has also had a fever for the last three days, ranging from 99 to over 101. The resident that has been on call this weekend has been most concerned about a possible wound infection, or something else going on with that swollen area behind Rebekah's left ear than just a blood clot. At this point, the doctors are working on ruling out possible sources of infection - she does not have an ear infection, and the blood cultures came back negative for a blood infection (yay!!). There will be another doctor on call starting tomorrow (one we really like!), and there is the possibility of having some kind of imaging done on that swollen area. One thing the resident brought up is the possibility of that area being a swollen lymph node. He doesn't really think that is the case, but he cannot rule out the possibility, either. The other thing he said is that sometimes wound infections can brew deeper in the chest and not come to the surface for a few days.

So, all of that means that we are staying put for the foreseeable future. Rebekah is also confined to her room until the source of infection can be found and treated. We're going to have an interesting time keeping this little girl occupied in this small space! :)

Under the possibility of going home soon, I had not pushed for PT and OT in the last couple of days. I will definitely be more aggressive on getting that set up this week. Rebekah is making huge strides on her own, but a little therapy certainly won't hurt. :) Rebekah is sitting up on her own and she even used Drew's arms to pull herself up to a standing position briefly. She loves playing with Mega blocks in her crib, and she has a little piano toy that she has enjoyed. She also has a board book that a local charity gave her (Why, oh why, did I not think to bring any of her board books???) that she absolutely loves. Of course, she also has lots of her stuffed animals to play with, too.

In light of today's news, we have decided that Drew is going home today. There are things that he needs to get done at home, and the boys could use some Daddy time. So, we are going to have a few days of just girly things. I think we'll have a pedicure party and paint our toenails this afternoon or tomorrow. :) And we'll be able to listen to Christmas music as much as we want!

While we are disappointed that we will be here for at least a few more days, if not longer, we would much rather Rebekah stay here and get these issues resolved before we head home. We are in the best place possible for our little Boo!

Nancy

Saturday

We have had quite a boring Saturday here in Rebekah's room. I guess that's the best kind to have when you're in the hospital! :) Rebekah has still had a fever for most of today, so the doctors are pretty sure she has something going on. This morning during rounds, the resident told us that they were going to watch Rebekah to see if she continued to have a fever today (she did) and that tomorrow they would repeat the blood work. Yesterday's blood work showed elevated white blood cell counts, which would indicate some kind of infection. However, the WBC count was not high enough to indicate that an antibiotic needed to be started. With Rebekah's continued fever today, we are guessing that tomorrow's blood work will show an even higher WBC count.

Because of Rebekah's fever, she was not allowed to leave her room or go to the playroom today. We have spent a lot of today rocking in the rocking chair, watching Baby Einstein DVD's and baby sign language DVD's. Those are Rebekah's favorites! We were also able to bring some toys back to the room from the playroom, so we've been playing with Mega blocks in our room.

Overall Rebekah has had a good day despite the fevers. She has periods of fussiness and times when she very obviously does not feel good, but she has also had brief times of playing and being cute! After days of observing doctors and nurses and Mommy and Daddy washing their hands, Rebekah has now learned the sign for handwashing. It is really cute to see her laying in bed asking to wash her hands! :) We also "bent" the rules a little today and called the boys from Rebekah's room. Technically we should leave the patient area to make calls, but the boys really enjoyed talking to Rebekah. She held the phone a long time listening to them talk, and she kept waving every time we told her to tell the boys "hi." I think she misses those boys - I know Drew and I do!

I don't think I've mentioned it on the blog before, but a day or so after surgery, I noticed a large (maybe 2-inch) area behind Rebekah's left ear at her hairline. It is quite red and swollen. When I first brought it to Dr. Graham's attention, he felt that Rebekah may have been laying on something during the 8+ hours she was in the OR that caused a reaction with her skin. However, the area has not improved any in over a week. When I asked the resident about it this yesterday, he didn't really know what to think of it. After doing some thinking and researching, this morning he told me that he feels maybe Rebekah had some blood pool there during surgery and formed a clot that will take weeks to dissipate. He gave me a few signs to watch for (growing larger, becoming redder, fluid-filled) and said that if any of those things occurred, that they would want to know immediately. Otherwise, he said we pretty much just wait for her body to break it down over time. Has anyone else heard of this? I can't upload a picture right now to show you what it looks like (I couldn't get a clear/not blurry picture of it with my cell phone.). If we get home and it still looks like this, I will upload a picture so you all can see it. I know for sure that it was not there prior to surgery, and I know for sure I noticed it at least the Saturday evening after surgery.

So the plan is to stay put until this fever gets figured out. I am happy to say that Rebekah's lungs are much better-sounding today. We can hear (or not hear!) the lack of "junk" rattling around in her chest when she breathes. Oh, and if you missed the earlier picture, Rebekah is no longer on oxygen!!! Our night nurse was able to wean Rebekah down during the night, and we have not had to turn it back on today. There have been a few times when Rebekah's sats dip into the 70's, but she is always able to bring it right back up within a minute or two. The only concern would be is if it took her a long time to get her sats back up into the 90's. We are thrilled at the thought of going home without oxygen!!

Nancy

Rebekah "talking" to her brothers on the phone. She was listening to Zachary talk. :)

What is missing in this picture?

What is missing in this picture?

One Week Post-op

Today marks just one week since Bekah had her open heart surgery. What an amazing difference a week can make! As I type this (well after Rebekah's normal bedtime), she is sitting up in her crib and playing with everything in reach. She is "talking" about whatever it is she finds. This is the best she has looked since before she had her surgery. It is absolutely amazing how just a few hours make a huge difference. Literally five hours ago, Rebekah had a 101.1 fever, had to go up on her oxygen a little bit, and was very miserable. Now, the fever is gone (she has had Tylenol), she is down to 0.2 liter of oxygen, and she is having a blast playing in her crib. Thank you all so much for praying for our little Bekah-boo this afternoon. Obviously, prayers were answered!

So many people have asked us when we are coming home, and the short answer is: we just don't know until we are walking out of the hospital! As with today, any little thing can change at any minute, and the best plans can go awry. The best answer I can give is that the doctors would like Rebekah to totally be off oxygen, her lung to reopen all the way, and she has to be fever-free for 24 hours. Rebekah had another echocardiogram today to check the function of her right ventricle. We have not yet heard what that looked like. At the very least, it will need to remain unchanged, or preferably better than the last echo, in order for us to go home. If the echo shows the heart function is declining, the doctors will have to decide what they are going to do to stabilize her heart function.

Rebekah is on a blood pressure medication now to lower her overall blood pressure. Most likely she will be on it for at least a few months, or unless her heart function improves dramatically. So, she will be going home on an increased dosage of Lasix and a blood pressure medication called Enalapril. She has had two days of the Enalapril so far in the hospital and seems to be doing well on it.

I think that's about the extent of today's news. By the time I reached the end of this post, Rebekah is now fussy, tired, and feels like she is starting to get warm again. The nurse should be back with some pain meds soon. Here's hoping we can both get some sleep tonight!!

Nancy

Good Morning to all!

Amazing!!

Wow! Rebekah just decided to sit up on her own! :) She was a little wobbly, but I am amazed she has the strength in her arms to push herself up.

Dr. Bradley came up while we were at supper and removed Rebekah's last remaining chest tube, so we are officially tubeless!! Rebekah does have one last IV in her foot so the doctors can give her diuretic still. The doctors are probably going to transition her to oral Lasix tomorrow and take her off the IV Bumex.

Rebekah is still on a liter of oxygen to keep her sats above 90%. Prior to surgery, Rebekah was on 1/2 to 1 liter of oxygen to keep her sats above 75%, so this is a huge difference!! The goal is to have Rebekah completely off oxygen before we go home, and still have her sats above 90%. We'll see what Rebekah thinks of that plan.

We are hoping to have a quiet, restful day tomorrow and maybe wrap up the last few goals so we can get home. Maybe by early next week???!

Nancy

P. S. The x-ray technician just came by to do another chest x-ray per Dr. Bradley's orders. Right before the x-ray, the respiratory therapist came for chest PT. She said Rebekah's lungs still have a bunch of "junk" in them, so we'll see what the x-ray looks like. Hopefully this stuff will clear up soon.

Daddy and Boo-bear. :)

Rebekah likes her new room! She even played a little bit with some of her Little People animals. :)

We made it to step down!

Bekah is now on the floor at 7C. This is our first step towards going home in a few days.

Post-op Day 6

We are waiting for news on a bed upstairs for Rebekah! :) This means she will be going to the step-down unit, which is one step closer to going home. We are currently waiting on a bed to be available upstairs, and then we should be moving. Hopefully by lunch time! The only little catch in the plan is that Rebekah's temperature keeps climbing, and that could keep her in the PCICU if it gets higher. She had Tylenol around 9:45 this morning, so hopefully it will come down some.

Rebekah is still getting chest PT to try to open her left lung back up. This morning's x-ray showed the left lung about the same and a little more haziness (junk) in her right lung than was there yesterday. We are hoping that once we get upstairs and she feels like moving around a little more that she will be able to cough some of that up. We will continue the chest PT upstairs on the floor.

Daddy has been able to hold his little girl a few times now. He was able to hold her last night for quite a while and again this morning. Rebekah has been so relaxed when she is in her daddy's lap. It's good therapy for both of them! :)

Hopefully our next post will be from upstairs..... We'll see how the day progresses!

Nancy

Daddy got his baby girl! :)

What's a trip to Charleston....

......without a fire alarm or two?? We are currently in the PCICU with the fire alarm light flashing. Thankfully, they do not have the actually alarm sound in here or the nice little voice saying "Code red, third floor" over and over and over. :)

We had an interesting trip downstairs for lunch yesterday. Apparently, someone on the maternity floor (above us) got too close to an exit with a baby and locked the entire floor down, as well as the elevators for the entire hospital. At lunch time, no less. So a very friendly nurse was able to lead us through the maze to a stairway that we could walk down to the first floor. Let me tell you, I would not want an actual fire evacuation in this hospital! I can't imagine the mayhem that would occur if several thousand people were rushing down those stairs! In all seriousness, they do have a very good security team here, and an excellent fire plan. All of the hallway doors on each floor close during a fire alarm as a matter of precaution. Each unit gets closed off and security and fire personnel go to whatever floor the "fire" is on. I think only once out of a dozen or more times that we have seen the alarms has there been a real incident. And that was only a boiler overheating.

The other thing that wouldn't make this trip complete is the construction! Last summer the cafeteria was under construction, so the "cafeteria" was a big white tent outside. Thankfully the cafeteria is completed now, but the floor that the PCICU is on is now being renovated. There is temporary plastic ductwork hanging from the ceilings throughout the floor (not in the unit, though), and you literally have to duck around and behind the ductwork in order to get into the PCICU waiting room. It's quite funny.

Miss Bekah-boo is doing quite well right now. She was so fussy and nothing was seeming to help. She had been given pain medicine and tylenol and just wouldn't settle down. Finally, Drew cuddled her (we can't hold her until her arterial lines are removed), and she went right to sleep. Our little Boo-bear just wanted some cuddles. She is absolutely peaceful now. Hope Drew doesn't have to go anywhere in the next three hours or so! :)

Nancy

Post-op Day 5

Today is a big day for Miss Rebekah! She is on the schedule to have her arterial lines removed! This means that she will only have a chest tube and a couple of other IV's left. The doctors continue to be baffled by her up-and-down pressures, but overall Rebekah is tolerating it well. So, they are going to leave well enough alone and maybe bring Rebekah back in a few months for a heart catheterization to see how the pressures look over time. Of course, Rebekah will have frequent check-ups and echocardiograms at her cardiologist's office at home, too.

So from what Dr. Graham said this morning, Rebekah will hang out here in the PCICU for the rest of today and tonight. They plan on making the "big move" upstairs to 7C sometime tomorrow, if everything still looks good.

Rebekah still has a lot of junk in her lungs that needs to be coughed up. Her respiratory therapists have been great about working on it, but she's still not over it yet. There is still a collapsed area in her left lung as well.

As far as when we will come home.....we're really not sure! Once Rebekah gets to 7C, she will need to have her chest tube removed. That won't be done until it has not had any drainage at all for at least 24 hours. Rebekah is still running a fever off and on, so that will have to go away before we can leave. And, of course, the lung congestion has to be cleared up, too. So, depending on how quickly Rebekah can get through those hurdles will determine how long we stay here.

The big prayer request for today is......sleep! Rebekah has been awake for almost 24 hours, with the exception of a few cat naps. What she needs is to really sleep for several hours, or overnight. Last night she wasn't fussy or crying, but she didn't sleep, either. Apparently, she and her nurse had a little party. We came in to find Rebekah and her bed all decked out with fuzzy blankets, hair bows and bracelets. There were also cheerios all over the floor. Even Dr. Graham commented this morning that they are not used to a crunchy floor during rounds. :) So far today Rebekah has been very restless and not sleeping more than 15 minutes or so at a time.

Hopefully we will have a very peaceful, uneventful and sleepy day!!

Nancy

P.S. In between writing this post and getting it published, Rebekah had a little "blue" spell. She woke up after a short (10 minute) nap and was very fussy. Her heartrate shot way up and her O2 sats dropped to the upper 70's. Dr. Graham was right there and turned her oxygen up and we get her calmed back down. The bottom line is that she has got to clear the junk out of her lung to get over this hump. Hopefully she will feel more like moving around later when her lines come out.

The nurses had fun playing dress-up with Rebekah last night! :)

Quick update

We just kissed Rebekah and tucked her in for the night. All things considered, she had a pretty good day. Rebekah was awake for a good portion of the day, although she seemed to be very restless and unable to settle into a deep sleep today. The nurses were good about staying on top of her pain medication, so we aren't sure if she was in more pain that we realize, or she liked the morphine drip a little too much, or if something else is brewing. Her lungs still sound pretty junky this evening, but she has been sitting up (with assistance) and has had a few good coughs today.

One of the big questions we had after Rebekah was extubated was how orally averse she would be. So far, she has not wanted her little taggie blanket or her fingers in her mouth. Prior to surgery, she would stuff a corner of her taggie in her mouth, along with two of her fingers and that's how she would fall asleep. For her not to want that in her mouth is a big deal. So, we were concerned about how well she would go back to feeding. Rebekah did take her sippy cup a few times today and drank a few swallows of milk. That was a great start! She refused any cheerios, and she gets very agitated when she sees anything coming toward her mouth - even my finger with some lip balm, which she loves! So, we may have to work on getting her used to things being in and around her mouth again.

Rebekah is also very weak now compared to where she was pre-surgery. At this point, she cannot sit up without assistance, or even hold her head up on her own. She is scooting around in her crib just a bit, mostly just moving her legs or arms around. We will definitely have some ground to make up once she is feeling up to moving. Today was unbelievably busy in the unit, but I am planning on talking to the doctors tomorrow about when we can start PT and OT in the unit.

Rebekah's pressures remained high pretty much all day. Her heartrate and blood pressure were also higher than they has been in the last few days. Right now the doctors are waiting for another day to see if her numbers go down any. There is a possibility that Rebekah may start on a blood pressure medication, but the doctors would like to give her one more day to get her lungs a little more clear and a little more fluid off before determining whether or not she needs the blood pressure medicine. Rebekah's temperature has also been climbing throughout the afternoon, and when we left it was around 100.6. It has been up and down since she came out of surgery, but we're hoping it starts staying down soon!

Thank you all for your prayers for Rebekah! It means so much to our family!

Nancy

Rebekah loves her hippo!

Post-op Day 4

If you saw the previous post, you know already that Rebekah is doing well this morning! She was able to sit up for a bit with the help of Daddy and the respiratory therapist, John. It didn't last long, maybe a minute or two, but at least she was up for a bit.

Rebekah had a good night and rested well. She had a few periods of being alert and looking around, but for the most part she slept all night.

This morning brought a few bumps in the road, although Rebekah seems to be handling them well. Each child in the PCICU has a chest x-ray in the early morning hours, and this morning's x-ray found that part of Rebekah's lower left lung has collapsed. This is not uncommon or alarming, but it does merit concern since this is Rebekah's only working lung. Rebekah's lungs also sound very "junky" and the doctors and respiratory therapists are working hard to get that junk cleared from her lungs before it becomes an infection. Right now the plan is to sit Rebekah up three times during each shift and maybe start a bit of chest PT if Rebekah can tolerate the pounding on her back. That part is still up in the air. Rebekah is on an antibiotic to try to prevent a bacterial infection, so that should help.

Dr. Graham did another echo on Rebekah this morning while we were there and said that the function in the left side of Rebekah's heart looks great. In fact, he said it looks better than they would have expected. The right side is still not squeezing like they would like to see, but he expects improved function over time. Rebekah's pressures are back up today, so we're kind of waiting to see what comes of that.

Also, Rebekah had started getting some pediasure in her g-tube last night, but the feeds were turned off this morning because she is holding food in her stomach and not digesting it. That's not a big deal, and certainly not uncommon post-surgery, but is something that they will watch. They will probably try feeds again later this afternoon.

Today's plan is mostly just focus on getting the lungs cleared up. Dr. Graham said there had been talk of pulling one of the chest tubes and maybe the pacing wires today, but since Rebekah's pressures are up again, they want to leave everything as is. They are planning to let Rebekah try some food as soon as she wakes up from her nap.

Oh, one other thing I have forgotten to mention the last couple of days is that Rebekah is struggling to keep her Potassium levels up. Most all post-surgery patients struggle, but Rebekah seems to be having a tougher time with it. Partly it is due to the diuretcis, which pulls potassium out of her system, and partly it is due to DiGeorge syndrome. The nurses are very on top of giving her replacement potassium around the clock. We are all hoping when she gets off of more of the diuretics and she starts eating again that the situation will take care of itself.

That's the news for now......will update later this afternoon or if something changes before then! :)

Nancy

Sitting up for the first time!

So far, so good!

As far as we know, Rebekah is continuing to do well off the ventilator. Her nurse would have called us if there were any significant changes, so we are assuming no news is good news! There have been two surgery cases back from the OR this afternoon and one little one that is struggling, so we have had to clear the unit for a few hours. Hopefully we will be allowed back in soon.

A couple of people have asked for Rebekah's address here so they can send cards. I will warn you that mail may or may not necessarily get to us, so don't send anything irreplaceable. :) You may send mail to the following address:

Rebekah Ellis
c/o PCICU
Medical University of South Carolina
171 Ashley Avenue
Charleston, SC 29403

Nancy

Ventless!

Ventless!

A New Week!

I know it's small, but here's another picture of our sweet girl. :) If you look really closely (or click on the picture and make it larger), you can see she's wearing her pink pearls today with a pink bow in her hair. Cuteness!

Oh, if you look really closely, you can see Rebekah's "Jaxon's blankie" underneath Rebekah. We love the blanket that Jaxon's mom, Lacey, made for Rebekah. Congratulations, Lacey, on the homecoming of sweet little Arina!

Pretty in Pink!

Rebekah sailed through her CT scan this morning. Actually, she had no clue where she was or that anything was happening! You have no idea the production that it was to get Rebekah moved! Literally, it took us 30 minutes to get Rebekah ready for transport, transported, and settled for the CT scan. The scan itself was about 10 seconds. Literally. There were two doctors, two nurses, a nurse's assistant and a respiratory therapist who had to go with us. We were moving Rebekah in her crib, two IV poles with 2 brains each (that's the system that runs the IV pumps) and each brain has 4 pumps on it. Then we had 2 monitors to keep track of all her numbers, plus the oxygen and the 2 emergency airway bags in case she stopped breathing. Oh, and the whole time we were gone, the respiratory therapist was bagging Rebekah because the vent isn't portable. We barely managed to fit all of us in the elevator, and we took the largest elevator in the hospital. I took some pictures of the procession and will try to upload them when I get home. It was a sight to see!

Anyway, the end result of all that effort is that Rebekah's conduit is fine. There is no narrowing anywhere in the conduit that could be resulting in higher pressures. We were thrilled to hear that!! Dr. Bradley came by (very) early this morning and messed around with some of the probes monitoring Rebekah's pressures. Right now, the pressures are measuring much lower than they were yesterday, so we are waiting for an echo to accurately read the pressures and let us know if they are truly that low. It would be great if they were!

Rebekah's morphine drip was turned off about an hour ago, so she will be gradually waking up over the next few hours. The plan is to extubate sometime this afternoon. We're very hopeful that Rebekah will do well off the vent and will be able to keep her oxygen levels up where they need to be. That will certainly be a good test of how the pressures are going to do in her heart when she is having to do more work on her own.

That's all the news for now. Please continue to keep Rebekah in your prayers!

Nancy

Dr. Bradley

First, I have to apologize for the blurriness of the picture. My laptop needs a new hard drive, so it's not working. Drew's computer does not have any working USB ports, so between the two, we can't upload any pictures from our camera. I was able to get this picture from my phone and text it to blogger. That's why it's not such a great picture. But, I figured it's at least a picture for everyone to see! :)

Daniel & Kelsey - your bear is being put to good use! She's holding down Rebekah's legs! :)

Anyway, we finally were able to talk with Dr. Bradley this afternoon. He checks on Rebekah frequently, but we never know when he might come in, and we have happened to miss him each time he has been here. He is concerned about the high pressures in Rebekah's heart, and said that if left for a long period of time, it would "definitely take a toll on her heart." That being said, he agrees with what the cardiologists are already doing in waiting to get more fluid off to see if the pressures improve. (Which, by the way, Rebekah has been doing a great job today getting rid of fluids!!)

One thing that we were sort of misinformed about is Rebekah's conduit. Yesterday we had been told that the conduit was narrowing, which seemed a little odd to us. Today Dr. Bradley told us that it is not the conduit that is narrowing. It is either the area where the left pulmonary artery attaches to the conduit, or the area on the left pulmonary artery where Rebekah's band was that had to be patched. Either of these two areas could potentially narrow, but not the conduit itself. To get a good look at any potential narrowing, Rebekah will be having a CT angiogram done tomorrow morning at (roughly) 9:00. This will give Dr. Bradley a clearer picture of exactly what, if anything, has narrowed. If there has been any narrowing, a trip to the cath lab to place a stent and/or balloon the narrowed area should fix that problem. Dr. Bradley's hope is that Rebekah's heart can tolerate any potential narrowing for a few months so that she does not have to have another invasive procedure so soon after surgery.

The other (bigger) concern is the pressure in the right side of Rebekah's heart. Dr. Bradley did not specifically say one way or the other, but from his comments Drew and I both get the feeling that he is anticipating having to open (or partially open) the patch on Rebekah's VSD. This would be a full blown open heart surgery again. Again, Dr. Bradley is hoping Rebekah can tolerate the pressures for a few months before we have to go that route. Dr. Bradley's end goal is for Rebekah to tolerate the pressures for now, go home and recover, and in 3 months or so come back for another heart surgery to open her VSD. Of course, the possibility is great that once Rebekah starts weaning off the sedatives, her pressures will become higher than her heart can tolerate, even for a few months or weeks, and she has to return to the OR sooner than expected. This is just something we will have to watch and see what happens over the next few days.

As a whole, Dr. Bradley is very pleased with how Rebekah looks. Her lungs are doing well, although still "junky" from surgery, she is starting to breathe over the vent, and her oxygen and heart rate are stable. Dr. Bradley said if you don't look at the pressure numbers, you would never know by looking at her that her heart isn't "fixed."

Rebekah is now on the lowest ventilator setting, and she will begin CPAP trials tonight. That is when they stop giving her breaths on the ventilator and she has to take each of the breaths on her own. She will still be breathing in concentrated oxygen, but she will have to do all of the breathing on her own. As long as her numbers look good, they will CPAP her for an hour and then draw a blood gas to see how well her body responded to breathing on its own. As long as she tolerates it well, they will probably CPAP her three or so times through the night. Rebekah does have to remain on the vent for her CT scan in the morning, but she could be extubated tomorrow afternoon if she does well during her CPAP trials.

Overall it has been a nice, quiet day today and we are hoping for a quiet night. Thank you to everyone who has been praying for Rebekah this week. We love you!

Nancy

Not to leave you hanging....

Rebekah was not the one who had a procedure done this morning. It was her little buddy in the bed next to us. He had to have a chest tube inserted to drain some fluid off his lungs.

Rebekah looks very cute today. She has a purple bow in her hair and purple socks on and all of her little friends (stuffed animals) are hanging out in her crib with her. She has gotten so many comments on the big pink hippo that she got from our church before surgery. It is a little eye-catching! :)

We were able to talk with Dr. Graham just a few minutes ago, and he is planning to let Rebekah have another day of rest today. Yesterday there was talk of extubating Rebekah today, but that has been placed on hold until Rebekah gets rid of more fluid. This morning the doctors increased the amount of Diurel that Rebekah is getting, and she is still on the Bumex every 6 hours as well as the Bumex drip. We're hoping to see lots of output today!

Dr. Graham did favor reducing the amount of Rebekah's morphine today to allow her body to take over more work on its own. Right now, Rebekah is on a Precedex drip, a morphine drip and bolus morphine and versed combinations every six hours. That's a lot of sedation! He wants to gradually reduce the amount of morphine that Rebekah is getting and increase the Precedex if necessary. So, the Precedex will allow Rebekah's body to wake up without Rebekah being consciously awake, and that is the goal. Dr. Graham still wants Rebekah to sleep, but he wants her to start breathing more on her own. So far this morning, Rebekah is making an effort to breathe over the ventilator, and that is good news!

Rebekah did have an echocardiogram and chest x-rays early this morning. The echo still showed dysfunction in the right side of her heart, but Dr. Graham thought it looked a slight bit better than yesterday. Rebekah's lungs are very wet, again due to excess fluid, but that is another reason to keep her on the vent for today. There is no sense in making her body work even harder than it already will when we transition her off the vent.

That's about it for the morning update. As I have been sitting here, the diuretics are beginning to work a little, so that's good news! So far this morning Rebekah has a negative fluid balance, which is exactly what they want to see at the end of the day. (Negative fluid balance means that she peed out more fluid than she took in. That's what will get rid of the excess fluid.) Oh, Dr. Graham also said they will begin feeding Rebekah small amounts (of what, I have no idea) to see how her stomach can handle the food. Probably they will start with Pedialyte or Pediasure and go from there.

Thanks for praying for our sweet Rebekah Grace!!

Nancy

Sunday Morning

Good morning to all! Rebekah had a very stable night, but made no improvements. She had done so well peeing off fluid for a couple of hours last night, but overnight slowed down considerably. The doctors have started a Bumex drip (constant IV drip) in addition to the Bumex and Diurel meds she was getting every six hours. The doctors don't want to make a lot of adjustments or try anything new to get Rebekah's pressures down until the fluid is resolved. So, right now we need lots and lots of fluid output!

In other news, the pressures that we thought had dropped some yesterday afternoon have not really dropped at all. Late last night (much later than my last post), Rebekah's nurse and I realized that the pressure probe inside Rebekah's conduit was not reading accurately. So, after flushing the line, we got a very accurate reading. Rebekah's PA pressure is almost equal to, and sometimes higher than, her systemic pressure. This is not the trend that the doctors wanted to see! They had really hoped to see those numbers growing farther apart. But, again, they are not ready to make a move toward intervention at this point until a lot of that fluid is resolved and we can see how her heart reacts under less stress.

We are at the hospital now, but have not been able to see Rebekah because the doctors are doing a procedure. Whether or not it is on Rebekah or another child we have no idea, but it will be a little longer before we are able to see Rebekah this morning.

Hope you all have a great Sunday!

Nancy

Update

The good news is......Rebekah has started to pee!!!!! It is with the help of some heavy-duty doses of diuretics, but at least she is getting some of the fluid out of her body. We are very excited that she is responding to the medications finally.

As far as the pressures go, Rebekah's LAP and RAP have come down considerably. She has been hanging out in the 15-17 range except when she moves or wakes up when the numbers shoot up to 30+. The PAP (measures the pressures in her new conduit) has still remained high, at times only 3 or 4 points above the systemic pressure. We are still in the post-operative waiting period, though, and the doctors want to wait and see how her heart is doing over the next couple of days before attempting any other interventions.

Rebekah's oxygen saturations have dipped a little lower today, but still much higher than we are used to seeing them. :) Mostly today they have been hanging in the 95-97 range. Rebekah's heart rate has been very steady all day, and her nurse told me that is a good indication that her heart is doing well and there is no bleeding inside her heart.

The goals for Rebekah overnight are to rest calmly, continue to get rid of more fluid and rest calmly. :) For the last few hours, Rebekah has been resting much better. We hope that trend continues overnight.

We enjoyed spending time with Danny and Kelsey Rowan today. They drove down from Greenville to see Rebekah and bring her an adorable teddy bear. It was nice to visit and have some adult talk that didn't completely revolve around medical terms. :) Thanks, Danny and Kelsey, for giving up your Saturday to come and see us!

Please continue to pray for Rebekah tonight. She is stable, but still has a lot of recovery ahead of her. Also, please keep two other families here in the PCICU in prayer. Their little ones are not doing as well, and I am sure that they would appreciate your prayers.

Due to the other issues going on in the PCICU, and a very sick baby in the PICU as well, the doctors have not officially rounded yet tonight. Drew and I were hoping to talk with Dr. Graham about Rebekah's heart function and the time line that he has in mind for monitoring the pressures. It could be quite late when he is available, so we'll see how long we can stay up. We may wait until tomorrow if it gets too late.

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.

Good Morning!

Thank you all so much for your prayers, emails, comments and texts! Drew and I were able to get some much-needed sleep last night. I fell into bed around 10:30, and I heard nothing until about 7:30 this morning. It was wonderful!!

Rebekah, on the other hand, did not sleep so soundly last night. Her nurse said she tossed and turned through the night. They have not been able to come up with an effective cocktail of drugs to keep her sedated. She is on a morphine drip, IV injections of Versed and morphine in between, and they also added in Precedex. All of that, and she still had a restless night! Our little girl is a fighter! The doctors would still like her to be sedated throughout most of today to let her heart and body heal from the surgery. Also, all of that moving and thrashing has the potential to rip out tubing, IV's, pacing wires and chest tubes, not to mention the ventilator. So, if you would like to pray specifically, please pray that Rebekah can rest peacefully. I'm sure her nurse would thank you for those prayers. :)

We were able to talk with Dr. Graham (one of our favorites!!) before we left the hospital last night. He said the pressures on the right side of Rebekah's heart were disappointing, but they are going to hold off a few days to see if her heart begins to lower the pressure on its own before doing any more interventions. Basically, Dr. Graham gave us three potential outcomes.

1) The pressures in Rebekah's heart come down on their own and no intervention is needed. (Best case scenario)
2) The pressures in Rebekah's heart remain high, but her heart tolerates the increased pressure for a few months (with or without medication), and in a few months we come back for a heart catheterization to measure the pressures and make adjustments as necessary. (Not the best, but certainly not a bad option)
3) The pressures in Rebekah's heart remain high, and her heart begins to tire and doesn't want to keep pumping against that much pressure.....also known as heart failure. In this scenario, we would have to intervene immediately. Hopefully a procedure could be done in the cath lab, but there is a possibility of another trip to the OR if the pressures cannot be lowered by a cath procedure. (Worst case scenario)

As of last night, Rebekah actually had three different pressures that were high. The most concerning is the PAP (pulmonary artery pressure). She has never had this measurement before, because she did not have a pulmonary artery before yesterday's surgery. This measurement is a measure of the pressure that is in the new conduit taking blood from the right side of her heart into her left lung. Normal PAP pressure is about 1/3 of systolic blood pressure (the top number on a normal blood pressure reading you might have at the doctor's office). Rebekah's systolic pressures yesterday were in the mid 70's to high 80's. Her PAP was in the high 60's to mid 70's. As you can see, it is significantly higher than normal, and too high even for Rebekah's anatomy. The doctors would like to see it at least as low as half of the systolic number. So we are looking for numbers that are somewhere in the upper 30's to mid 40's. Based on a bedside echocardiogram that Dr. Bradley did yesterday, he feels that for some reason this conduit is beginning to narrow. Not good! This conduit is the passage way for an amount of blood that is already too large for the space that it is flowing to. That in itself is enough to create higher pressures, which Dr. Bradley had warned us about on Tuesday. If that conduit narrows, it becomes an even smaller space for that blood to flow through. I think this is one of Dr. Graham's more pressing concerns. If that conduit continues to narrow, or the pressures continue to remain as high as they are, or higher, we got the impression that Rebekah would be headed to the cath lab in the next few days for them to try to balloon that conduit open.

The other two pressures that are high are the LAP (left atrial pressure) and RAP (right atrial pressure). These pressures are a measure of the pressure in the top two chambers of Rebekah's heart. You know, the chambers which now have a hole between them to try to equalize some of the pressure building on the right side of Rebekah's heart. I'm not really sure what the plan is for correcting, or lowering, that pressure, except that the doctors are going to give it a few days and see if that pressure drops as the heart heals. Normal readings for those pressures would be high single digits (8 or 9). Normal post-op readings would be as high as the low teens. We saw Rebekah's pressures as high as the low 20's last night before we left.

Other than those numbers, everything else looks great! Rebekah's oxygen saturations are reading between 97 and 99%; those are numbers we have never seen! When she came in for surgery, her sats were between 75 and 80% on half a liter of oxygen, so we are very excited to see "normal" saturations!

That's about all for right now. I'm sure we will have more information to share as the day progresses, but I just wanted to get a quick post to update you on where we are right now. Thanks for praying!!

Nancy

This day is history!

Well, our history-making little girl has come through again! We just met with Dr. Bradley, and he is pleased with the outcome of the surgery. Given Rebekah's unusual anatomy, there really was no perfect solution or repair to her heart that could have been done, but we feel that this is a best case scenario.

Rebekah is in ICU and will remain sedated probably through the night and into tomorrow. They will gradually start weaning down the ventilator and Dr. Bradley is hopeful that Rebekah will no longer need oxygen after she recovers from surgery. No promises, but he is very hopeful.

As we discussed with Dr. Bradley yesterday, the pressure in Rebekah's right ventricle was a large concern today during surgery. Dr. Bradley was able to completely close Rebekah's VSD, but Rebekah does have high pressure in her right ventricle now. However, Rebekah's heart does seem to be tolerating the high pressure well. To help relieve some of that pressure, Dr. Bradley made a small hole in the atrial septum (between the two upper chambers of her heart). There is less risk to Rebekah's heart to have a hole in the atrial septum rather than the ventricular septum, so this is the better of the two choices. Rebekah will need to continue to be monitored by frequent regular cardiology visits once we come home, but Dr. Bradley feels that her heart can tolerate this pressure over time. Eventually the plan is to let the left lung grow and keep watching the pressure in her heart to make sure she does not show signs of heart failure. Dr. Bradley did mention the likelihood of a return trip to the cath lab after a few months to recheck the pressures in her heart and maybe tweak things a little if the pressures go any higher. At this point, he does not see that Rebekah will need extra medication (for the high pressures) when we go home, but it is a possibility. Right now Rebekah is calling the shots, and the doctors are just adjusting to how her body responds to these changes.

Dr. Bradley did search for, and did not find, Rebekah's right pulmonary artery. We were all pretty certain that it wasn't there, but he wanted to look for himself, since he did not do Rebekah's first surgery. We asked if he looked at Rebekah's right lung to see if it looked healthy, but he said that there was a lot of scar tissue in that area that he didn't want to disturb today.

So, we are going to get a snack downstairs (mmm....frozen yogurt!) and then we should be able to see Rebekah around 4:30 if all is going well.

The bottom line is that Rebekah's Truncus is officially repaired, but at the cost of an atrial spetal defect and higher pressures in her right chambers. All in all, this is probably the best scenario for what could have happened today, and we are very pleased with the work Dr. Bradley did on Rebekah's heart.

Unless something else of significance happens tonight, this will probably be our last post of the day. We are going to spend some time with our little girl and try to get some rest tonight. Now the long days of recovery are ahead of us, so we will get some rest while we can.

Thank you to everyone who followed along with Rebekah's surgery today and kept us in your prayers. We appreciate each and every prayer, comment, post and email that we have gotten.


Drew and Nancy

It's Over!!!

Well, the surgery is anyway. :) Rebekah is on her way up to the PCICU to get settled in. Now comes the long road of recovery and watching to see how Rebekah responds to her new anatomy. Hopefully that will be the easy part. :)

All total, Rebekah was in the OR right at 9 hours. I don't know yet how much of that was actual surgical time. We are waiting on the surgeon to come up and give us the scoop. I will try to get a blog post after that so you all have an idea of how Rebekah is doing.

Thanks so much for your prayers!

Nancy

Update #4

The surgery is almost over!! Rebekah is having some bleeding that the surgeon needs to get under control. It is not terrible, and certainly not unusual, but they do need to get it stopped. Once they have the bleeding stopped, she should be back to the PCICU wihin an hour. Then we will be talking with Dr. Bradley to find out exactly what he did during the surgery. I'm hoping to be able to see Bekah by dinner time tonight! :)

Nancy

Update #3

We did get another update in between these last two, but we were at lunch, so I'll combine them. :)

Dr. Bradley is finished constructing the conduit that will become Rebekah's pulmonary artery. We have not received any updates regarding whether or not he could close the VSD, so we're still not sure about that part.

Right now over the next hour or so is one of the most critical times of the entire surgery. Dr. Bradley is working on restarting Rebekah's heart and removing the heart/lung bypass machine. This will be a true test of how Rebekah's heart is working with her new "plumbing."

If all goes well, the surgery should be wrapping up in the next hour and a half or so. We will post more updates as we get them.

Nancy

P.S. My computer hard drive is officially dead, and Drew's computer does not have any working USB ports. Right now we can post text updates from Drew's laptop or the hospital computers, but no pictures. :( Hoping we can get mine up and running soon!

Update #2

If you're looking for update #1, scroll to the bottom of the most recent (very long) post.

Rebekah is still stable and doing well. Dr. Bradley is working on the conduit now, and from what he can tell, it looks as if he will be able to completely close Rebekah's VSD with no problems. We will have a better idea of that when he completes the conduit and begins to work on the VSD.

In other news, we just found out that we have free parking (normally $6/day) for the duration of our stay here becasue of Rebekah's handicap parking tag. We're thankful for the little blessings! :)

I also want to say (again) that we are just overwhelmed with all of your prayers and encouragement today. You don't realize how special it is to open our facebook pages and see Rebekah's name and pictures along with prayer requests on so many of your pages. Thank you!!!

Nancy

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