Postponed

Unfortunately our trip to Charleston to have Rebekah's vocal cord scoped has been postponed due to one little girl being sick.  :(  Rebekah had a bit of a clear runny nose yesterday that quickly grew into a nasty runny nose and fever by last night.  She woke up with a fever this morning and a bad cough, so we thought it best to reschedule the Charleston plans.  Our new appointment is March 9, and we hope everyone is well by then!

Please pray for Rebekah.  This appears to be the same bug that two of her older brothers had over the last few weeks.  She is happy and playing now, but has periods of horrible coughing where she finds it hard to catch her breath.  We are watching her oxygen sats carefully and will be calling the doctor if they start trending downward and not coming back up.  For now, we are resting at home and starting the antibiotics that were effective in helping her brothers get over their bronchitis and pneumonia.  We're praying that it doesn't get that far with Rebekah!

Nancy

Sleep Study Results Part 2

Now where did I leave off?  :)  There were just a few other things from Rebekah's sleep study results that I wanted to share (mostly just so I can look back and reference the information one day if I need to).

One good observation that Dr. G made is that Rebekah's carbon dioxide (CO2) levels are on the low side of normal.  Actually, in some cases, they were below normal.  Part of the sleep study is measuring the amount of CO2 that the body expels each time we breathe out.  For a lot of kids (maybe adults too?) with central apnea, they retain too much CO2, so their levels are quite high.  This can lead to more "events."  Honestly, Dr. G told me at our initial consultation that he anticipated finding Rebekah's CO2 levels to be high, and he gave me a couple of treatment options for that.  He was quite surprised at how low the levels were, and showed me that the lower the CO2 levels were, the more events Rebekah had.  So, one of the goals Dr. G has is to actually increase the amount of CO2 that Rebekah retains, in the hope that it will decrease the number of events that she is having.  One of the ways Dr. G wants to increase the CO2 is by increasing the amount of oxygen Rebekah is on overnight.  Rebekah has been on 0.5 liters of oxygen for a long time now - well over a year, and that is a good therapeutic level for her pulmonary hypertension.  However, Dr. G wants to "pin her to the ceiling" (his words, not mine) with oxygen in the hopes that the more oxygen going in, the more her CO2 levels will rise and hopefully the less apnea we will see.  It sure is worth a try!  So during Rebekah's next sleep study they will be trying her out on 1.5 or 2.0 liters of oxygen to see if that makes any measurable difference in the number of apnea events that we see.

Baby in a Box!  :)

Even though it appears that the central apnea is entirely, or at least in part, related to the CO2 levels in Rebekah's body, Dr. G is still recommending an MRI to rule out the possibility of any possible cranial or spinal malformations.  One in particular is Chiari (pronounced key-ARE-ee) Malformation, in which a piece of the skull is abnormally shaped and presses into the base of the brain or the brain stem.  Among other things, this could cause the type of central sleep apnea that we see in Rebekah.  Dr. G really doesn't think that we are going to find anything abnormal in the MRI, but with Rebekah's complicated medical history, he doesn't want to assume that the apnea is related to something else, without ruling out some brain and/or spine abnormalities.

Rebekah was given a small 

Hello Kitty suitcase on Sunday.

She is in love!

It will likely be late spring or early summer before the MRI is scheduled.  Dr. G wants Rebekah to be comfortable with her CPAP machine for a while, so that she can use it when she comes out of the sedation.  Yes, this MRI will involve sedation and intubation.  We would love to be able to schedule it when she is in Charleston for a heart cath or vocal cord scope.  We'll just have to see how the next couple of months play out and which doctors want to see her when.  We were told June or July for her next cath date, so we could potentially make it work if everyone can coordinate together.  What a blessing it would be to only have Rebekah intubated once and do both the cath and MRI at the same time!

I think that's everything I can remember from the sleep study.  I hope it's everything that we covered!  Rebekah has her first speech therapy on Thursday, so we would appreciate prayers that it goes well.  She should have had her first session last week, but we had to cancel due to sick brothers.  Hopefully everyone stays well between now and Thursday!

Please continue to pray for our little buddies at MUSC.  As far as I have heard, there have not been any significant changes today.  Especially remember their parents and families in prayer.  The days are agonizingly long when you are waiting, hoping for some sign of improvement.

Nancy

Friday Morning Update

Rebekah had a great night last night resting and working on her overnight feeds. She was bright eyed and energetic when I came in this morning to see her. Shortly after I arrived, after hugs and saying hello. I found out that all had been cleared for Rebekah upstairs. So a little bit of packing and we were off for a morning trip.

We are now settled in on the floor of the step down unit. Home away from home. Rebekah has been pretty restless since we got up here. I think she was in a bit of pain so we asked for some pain meds and she is feeling better.

After sometime on Skype to say hi and play with her brothers and grandparents it is now time to settle in for long lazy afternoon nap.

We hope to have a quiet afternoon and evening. We will update again later this evening.

-D

Quick Surgery update

We heard from Dr. L today. The team at MUSC met yesterday and discussed Rebekah and her current test results. They have confirmed Dr. B's recommendations from heart Cath. Rebekah is going to have surgery to try and connect her non-working lung. We do not have a date yet. We should be talking with MUSC sometime next week about a surgery date.

D

Charleston again....

We arrived safely this evening in Charleston. I had a nice dinner with my ladies and a swim in the pool. Now to get some rest as we are up and down most of the night for feeds. Rebekah has a certain eating schedule to prep for cath. tomorrow. We will be checking in at MUSC at 6:15am tomorrow.

We will update as our adventure progresses.

Thanks for praying for us.

D

Heart Cath. August 16th

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

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

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

Thanks for supporting our family in prayer and love,

Drew

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

Prayer Requests for Surgery

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

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

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

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

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

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

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

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

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

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

Drew and Nancy

Counting Down!

The days are flying fast, and we are trying to prepare ourselves for Rebekah's surgery that is right around the corner. She is scheduled for open heart surgery on November 3. This will be a complete truncus repair, and the surgery itself is anticipated to take 6-8 hours.

Dr. Scott Bradley, the head pediatric cardiothoracic surgeon at MUSC will be Rebekah's surgeon from now on. If you remember from last summer, Dr. Ty Hsia was Rebekah's first surgeon, but he was offered a position at a prestigious hospital in London several months ago, so he is no longer at MUSC.

I found this information online that pretty accurately sums up the extent of Rebekah's truncus repair.

The surgical repair of truncus arteriosus requires the use of heart-lung bypass machine support. It involves three major components:

• Separating the pulmonary arteries from the main truncus (the truncus will remain as the first part of the aorta);
• closure of the ventricular septal defect using a patch
• creating a connection between the right ventricle and the pulmonary arteries using a valved conduit, usually a homograft pulmonary artery.

The one glaring difference between this description and Rebekah's surgery is that Dr. Bradley is likely to remove Rebekah's right lung during surgery. We have discussed the possibility with several of Rebekah's doctors, and the general consensus is that at some point Rebekah's lung will, not might, become infected, and when, not if, that lung becomes infected, it will be very dangerous for Rebekah. In fact, Rebekah's pulmonologist used words like life-threatening infection, and certain emergency resection when I asked if it would be possible for Rebekah to keep her lung. Given that information, combined with Rebekah's cardiologist's opinion, lead us to believe that Dr. Bradley will be removing Rebekah's right lung.

How do we feel about all that? Well, obviously, it was not our first choice! :) But we feel very informed about this decision, and know that ultimately, Dr. Bradley will recommend what is best for Rebekah. There are three criteria that Dr. Bradley will consider during surgery. If any one of the three is not met, then he will remove the lung. Dr. Bradley's criteria are:

1) The lung tissue itself - is it healthy? We know that the lung itself is a good size, but Dr. Lucas told us that often the tissue is dying or decaying when there is no blood flow through the lung.

2) Is there adequate arterial supply? This is the amount of blood flowing to the lung tissue itself. It has nothing to do with blood flowing to the lung to receive oxygen.

3) Is there good (or any!) perfusion? This is the amount of blood flowing into the lung to receive oxygen to carry out to the body. Right now from all of the tests, the doctors are pretty sure that Rebekah has less than 2% perfusion in her right lung.

So, what else has been going on besides surgery talk? Well, Rebekah should be getting some new wheels near the end of October! We have been using our old stroller and pushing/pulling her oxygen tank along with it. To say that it is cumbersome is an unbelievable understatement! Rebekah's new chair/stroller will have an oxygen tank holder mounted on the side so that I can have a hand free for other things. It also has room underneath for Rebekah's O2 monitor if we were out for a long period of time and needed it with us. The seat is completely customizable and will grow with Rebekah. It is also a tilt-in-space seat, which means that the seat rotates from 90 to 180 degrees and stops anywhere in between.

Rebekah's new chair (teddy bear not included)! :)

We have had some fun days just hanging out at home and playing. Aaron and Caleb are very patient with Rebekah and usually let her in on whatever they are playing with.

Aaron and Rebekah

Pretty girl!

Aaron specifically requested this outfit a few days ago because he loves the bracelet that matches it. Guess we'll have to find a fall/winter outfit in these colors so Rebekah can still wear the bracelet. :)

Sweet little peanuts!

Rebekah all dressed up for church!

Something (someone) is missing here..........

Found her!

Rebekah has become more and more mobile lately. It is very unusual to find Rebekah where I left her now. She has become adept at scooting around the house and exploring all kinds of things. I literally "lost" her in the house and followed her tubing to look for her. I found Rebekah in my laundry room with the door closed. She was taking my clean laundry out of the laundry basket. Now if I can just teach her to fold it...... :)

I'm cute.....tubes and all!

I love my swing!!

Now that the weather has been (a little) cooler, we have enjoyed some time outside. We had not been able to take Rebekah out much in the hot summer because it is easy for her to become overheated. She really enjoyed being able to swing and play outside this weekend!

My newest skill!

It took me (or Rebekah) several hours to actually capture this picture. Rebekah has been doing this hand/feet position for a few days. Although she isn't doing more than holding the position for a few seconds, at least she is working at it. I can't say enough about how much the stander has helped strengthen Rebekah's muscles. She really wants to walk and run with her brothers, but is not strong enough yet. She gets an "A" for effort, though! Rebekah is one determined little girl! Just this week in pool therapy, Rebekah stood for almost 5 seconds by herself with no support! That was huge!!!

Rebekah and Uncle David

Thank you all for your continued prayers! We ask that you continue to pray specifically for our upcoming trip to Charleston and Rebekah's surgery. The doctors are estimating a 2-3 week hospital stay if things go well, so it will be a stressful time for all of us. The boys are taking it in stride, though, and we are so thankful for that!

Nancy

It's Time!

Rebekah had her cardiology appointment this morning, and as we all expected, it is time for Rebekah's heart repair. I have very mixed feelings about it, but I now that we cannot put surgery off forever. There are a couple of reasons that Dr. Lucas felt were important in the decision to proceed with surgery now.

First is the obvious. Rebekah's oxygen saturations are dropping, and will continue to drop as the band gets tighter. With a lower baseline oxygen saturation, there is a higher risk for any little cold or airway distress to put her in the hospital in serious respiratory distress. I know it has been a while, but now is a great time for us to remind everyone - if you are sick, have been sick, or have been around someone who is sick, please love Rebekah from a distance!! We are trying to keep Rebekah healthy in the weeks leading up to her surgery.

Second, we are gearing up for the cold/flu/RSV season to start in another two months or so. The last thing Rebekah's doctors want to have happen is her surgery to fall in the middle of a season that is already going to be difficult for her.

The one surprise that caught Drew and I off guard is that Dr. Lucas mentioned that Dr. Bradley (the head of pediatric cardiothoracic surgery at MUSC) may recommend removing Rebekah's right lung. That was a bit of a shock for us, especially since other doctors had previously said that we should just leave it alone and let it function in a small capacity as it is right now. The potential removal would come if Dr. Bradley feels that there is so little blood flow to that lung that it would become highly susceptible to infections. Obviously, Rebekah has enough problems without having to worry about repeated, life-threatening pneumonia or infections in her weak lung. It is something that we will be praying about and talking with the doctors in Charleston about. Ideally, the surgeon will find that Rebekah's collateral arteries have grown and they will be able to restore function to her right lung, but medically speaking, that is not likely. As Dr. Lucas told us today, there are no limits on God, and we know that He is ultimately in control of Rebekah's surgery.

We should hear something from MUSC toward the end of this week or early next week about a surgery date. It looks as if it will be sometime in September, but we won't know for sure until we hear from MUSC. Until then, we continue to monitor Rebekah's oxygen levels and try to keep her germ-free! Please pray that all of the details come together for a two week (or longer!) stay in Charleston for Rebekah and I. We will continue to keep everyone updated when we have further information.

Nancy

Catheterization Update

Finally! I am now at a place that I can get my computer out and give an update! Sorry for the short and misspelled posts the last couple of times, but we have only been able to update from our cell phones until now. Let me recap our morning!

Rebekah had to be checked in at the hospital at 7:15 this morning. We were up and at the hospital in plenty of time. Rebekah could not have anything by mouth after 3:00 am, but she was happy when we checked in and didn't seem to be hungry. After checking in, we went up to the same-day surgery room to wait for our turn.

We knew before today that Rebekah would be second case in the cath lab. What we did not anticipate was having to wait for so long! The first case did not get taken into the lab until 8:00, and by this time, Rebekah was starting to get hungry. Our nurse gave us permission to feed Rebekah some Pedialyte, so we gave that to her between 8:30 and 9:00. I am so thankful we were able to let her have that! As it turned out, the case before us had some problems and the doctors took much longer than they had anticipated before they finished that case. Rebekah was not taken back to the cath lab until almost 2:30 this afternoon.

The first item on the agenda was the bronchoscopy. This is the procedure that Rebekah's pulmonologist wanted to have done to check Rebekah's trachea and bronchial airways for tracheomalacia (underdeveloped cartilage in the trachea and/or airways). The thought was that if Rebekah had tracheomalacia, it would explain some of her wheezing and respiratory problems and why she does not respond to the inhaled medications like the doctors think she should. The bronchoscopy was done rather quickly and the ENT came back to talk to us around 3:00. He could find no areas of tracheomalacia and said that from an anatomical perspective, everything looks fine. His recommendation is to have a swallow study done tomorrow to check for possible aspiration. If you remember, Rebekah had three swallow studies done during her first month at MUSC, so this is nothing new to us. The ENT did say that it would be unusual for her to begin aspirating again after having done well for several months, but he has seen it before. If there is a way to be unusual, Bekah probably will find it! :) We aren't sure yet what time tomorrow that will be, but it is going to be put on the schedule.

The second item on Rebekah's cath lab schedule was a sedated echocardiogram. She has echos done once a month or so at the cardiologist's office, but the chances of her laying perfectly still through the whole procedure are non-existant. So while she was already going to be sedated, the doctors wanted to get some really good pictures from the echo. We received a page just a few minutes after 4:00 that the echo was done and they were beginning the catheterization.

So, that brings us up to date on Rebekah's progress. It will likely be close to 6:00 before she is done with the catheterization and she most likely will be moved to the PCICU for recovery. She will definitely be staying overnight and will have a swallow study done some time tomorrow. We will post again when we have more information!

Thank you for all of your prayers, comments, Facebook posts and texts. We love you all!

Nancy

Heart cath day

We checked in about 7:00am. Bekah has had a EKG and a chest x-ray. She is sleeping away the time waiting on the doctors to come take her to the cath lab. Should be sometime before Noon.


Drew

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

Turning Around

Sorry, I don't have any more cute pictures today. It's hard to get cute, creative pictures when you are in the same place for two weeks!

Rebekah's oxygen was turned down to 0.2 liters for a while today, but turned back up to 0.25 this afternoon. When Rebekah is just resting or still, she does well, but as soon as she gets excited or active for a period of time, she seems to need more oxygen support. She was starting to breathe more rapidly and her breathing was a bit more labored, so we gave her a little more help in that department.

Although Rebekah has been coughing some today, it is noticeably less frequent than yesterday. It is still a "tight" cough that sounds like she's struggling to breathe during her coughing spells, but it's not the forceful, not breathing during the episode coughing that she was having yesterday. Dr. Darby is adding a new medication called Pulmicort to our nebulizer treatments today. It is going to be a long-term (probably 2-3 months) medication to help keep Rebekah's airways open. It should make Rebekah's colds a bit more manageable from home and not result in as many hospital trips - we hope!

Dr. Darby is also considering referring Rebekah to the pediatric pulmonologist here in Greenville. It is something that we have discussed with Dr. DeMoss (Rebekah's pediatrician) before but in the end we decided that her oxygen levels were caused by her cardiac function, not lung function. However, because Rebekah has had two fairly major respiratory illnesses in the last four weeks, Dr. Darby feels that she may be better monitored by a pulmonologist. We should know tomorrow what Dr. Darby's decision will be.

Yesterday Dr. Rauniker (cardiology) told us that he had spoken with the scheduling department at MUSC and had been given a tentative date of February 23 for Rebekah's heart catheterization. I say tentative for two reasons. First, we are concerned about Rebekah coming down with yet another respiratory illness in the next four weeks, similar to the scenario we have right now. Obviously, that would postpone the heart cath again. Second, that week and the week following would be the worst two possible weeks as far as Drew's work schedule. We are willing to do a lot of rearranging and rescheduling to accommodate Rebekah's appointments, but there are things happening those two weeks that just cannot be rescheduled. So, we are discussing either moving the heart cath one week earlier than it is currently scheduled, or two weeks later. We will be seeing Dr. Lucas for a routine visit on February 3 (providing we are not still in the hospital!!) and will discuss the date with him. I'm fine either way as long as we can keep Rebekah free from respiratory illness between now and then!

One of the medications Rebekah is on right now is Orapred, an oral steroid to help open up her airways. It is doing a great job of that, but has the miserable side effect of making Rebekah hyper to the point of jittery. At 5:30 in the morning, this is a very miserable side effect! Rebekah has been having a harder time falling asleep and staying asleep since she started the Orapred. We are hoping to see enough improvement in the next couple of days to take Rebekah off of this medication, but please pray for calmness in the meantime!

I'm off to get some supper before Rebekah wakes up. Thank you for all of your continued prayers and encouragement!

Nancy

A Plan!

Drew and I after the banquet we went to Saturday night. After we ran through the rain to get back into the hospital!

Several of you have asked about the banquet that Drew and I attended. We enjoyed the time we were able to get out on Saturday night. We went to the Greenville Home Builder's Association 50th Anniversary celebration. It was very relaxing and nice to visit with other adults! We were surprised and excited when the builder Drew works for was named the 2009 Builder of the Year in the Greenville/Upstate, SC area. Congratulations, Todd! You can check them out at Addison Homes!

Grammy and Rebekah

So let me recap yesterday and then I'll move on to today's plans. Yesterday was kind of just a waiting game and was much less dramatic than Sunday!! GI was waiting for the surgeons to come back to check Rebekah's g-tube. The pediatrician was waiting for the surgeons to come back to check Rebekah's g-tube. The residents were waiting for the surgeons to come back to check Rebekah's g-tube. I was waiting for the surgeons to come back to check Rebekah's g-tube. See a pattern here? :)

Early yesterday afternoon, Rebekah's IV blew. (You know, the one we spent four hours getting in and finally had to put into her head?? Yeah, that one.) It took two nurses and myself about half an hour to unglue all the tape used in an attempt to hold that IV down on top of Rebekah's hair. It's a wonder that she isn't bald now! In the middle of that process, Rebekah decided to desat, so she went back on oxygen. We finally got all the tape off and decided to let Rebekah rest for an hour or so before attempting to place another IV (Her heartrate had been in the low 200's and O2 sats in the 60's during that whole episode). While Rebekah was resting, her nurse called and (successfully) begged the doctor to not order a new IV, as long as we could get Rebekah's full feeds in overnight. We were determined to get those feeds in even if we had to pump them in with a syringe! :) Okay, not quite that bad, but we were close to desperate.

Monday afternoon Rebekah had another x-ray done to check the position of the NG tube to see if it was still in position or if it was twisted or kinked. Through Sunday night, the feeding pump kept alarming that the line was occluded (blocked). The x-ray showed that the NG tube was about 2cm short of where it needed to be - it was just barely into the tip of the stomach and they like it to be at least a couple of centimeters in. The alarming pump was determined to be faulty as well, but we still needed to readjust the position of the tube. Rebekah was not at all happy about that fact and started to turn blue on us just to prove her point. We turned her oxygen up a little more and she was fine. So, she is now on 1/2 liter of O2 and will hopefully start weaning off a little tonight and tomorrow.

After all the waiting, Dr. Abrams (one of the pediatric surgeons) finally came late this morning. After a week of insisting that something is wrong with the g-tube, Dr. Abrams said he thinks the tube is "in the tract". Basically, when the tube is inflated (or not) it is sitting in the opening of Rebekah's intestinal tract called the pyloric. That's the problem. The solution? Replacing the tube with a different size and/or style of tube.

This is what to do when life gets too hard!

The solution, however, is not as cut-and-dried as I had hoped. Dr. Abrams feels that it is necessary to place Rebekah's new tube visually, which means that they will run a scope down her throat into her stomach to make sure the tube is inserted correctly and is in the correct place and is not blocking the pyloric. In order to do the scope, Rebekah will have to be under anesthesia and on the ventilator. UGH! That was certainly not the answer I wanted to hear!

The next step, now, is to wait for our cardiologist to come by for a consult. As we have mentioned on the blog before, anesthesia for a heart baby is very tricky. There can be complications far beyond the normal complications for a "normal" baby. Greenville Memorial is not equipped for pediatric heart patients, so therefore, there is not a pediatric cardiology anesthesiologist here. The question now becomes: do we do the procedure here, or is it risky enough to move to MUSC in Charleston? That's the answer we are hoping to get from our cardiologist. If we need to go to Charleston, arrangements will have to be made and hopefully we can have the g-tube placement and the already scheduled heart cath (Jan. 26th) during the same trip. Unless the cardiologist thinks differently, we would be discharged from Greenville Memorial and then drive to MUSC whenever they schedule us to be there. At this point, hopefully that would be sooner than later! While this is certainly no emergency procedure, it is equally not an elective procedure. It is best described as a "priority" case because if the current non-functioning g-tube were to come out, it would immediately become an emergency situation. Oh, I forgot to say that the balloon on the g-tube currently in her stomach burst yesterday, so the tube is now taped in so we don't lose the opening. Fun, fun!

Always such a sweetie!

So, as frustrating as this is, at least I feel like we have a plan and are working towards getting this all fixed so we can get back home. Rebekah is tolerating all of this with the sweet spirit that she always has. I have never seen such a good baby - and I've had five of them now! She absolutely never cries unless something is hurting her or she is hungry. We are so blessed to have this sweet little munchkin!

Nancy

Weight gain??

Miss Rebekah is plugging along. She is very busy with lots of doctor appointments and therapies. She seems to be responding well. This week she was removed from some of her medications. This has caused her to be much more awake and alert. She follows her brothers everywhere with her eyes. She likes to cuddle and play with her brothers. She has begun to make lots of faces and started a little bit of noise or chatter. I put her in her chair so she could watch the boys eat their breakfast before school the other morning, and she ate it up with Justin. He kept talking and goofing for her and she cooed and tried to giggle at him.

Rebekah did have a GI check up this week. She is gaining a little weight, but still not enough. They have increased her intake to 95cc's a feed. We are trying to fatten her up. I think she is now over 9lbs. We are hoping to see some bigger progress this week or we may have to go back to continuous feeds at night on a pump. We will see.

Mom and Bekah are returning to MUSC to have her button replaced with one that is not so cumbersome on the 18th. Hopefully this will be our last trip for a couple months. The next trip should be the heart cath. to determine if Bekah is ready for surgery.

Looks like we should be able to have a somewhat quiet and relaxing Christmas all together. I think that is about it for updates for now.

Thanks for your prayers and continued support for our little Rebekah Grace.

D

Off to MUSC again

We are packing and getting tons of things settled today for Mom to be gone for a few weeks. We are heading back to MUSC to have the g-tube surgery tomorrow. We hope to get in this evening to try to get some rest. Then it's off to the hospital tomorrow at 6am for surgery. We will be updating everyone on the blog as the surgeons update us thru-out the day.

We appreicate all the prayers for our little Lady.

D

September Prayer Requests

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

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

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

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

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

D

100!!

A few weeks ago, we went to a local park with a friend of ours who is a professional photographer. She took some beautiful photos of our family and Rebekah. Hop on over to her blog to see some of her work and check our family blog for pictures of the boys. Thanks for such great pictures, Rachel!!

I realized just as I was about to start this post that it will be the one-hundredth post on Rebekah's blog! It has been a short, yet long, journey to this point, and we are just at the beginning. We are so thankful for all the Lord has brought us through to this point and for all He will do in Rebekah's life.

We made the difficult decision this week to go ahead with the surgery to have a G-tube placed for Rebekah. In some ways, this is even harder for me than her heart surgery. I know that Rebekah needs her heart surgeries in order to live, but the G-tube is somewhat different. It will be closing the door on nursing Rebekah - something that I have always had as a goal once we got past her big heart surgery. It will also mean the end of bottle feeding as well, and I am so very torn about this. For some reason, I am really struggling with giving up feeding Rebekah in conventional ways. I know she will still be getting breastmilk and that the method of delivery isn't really important, but it is disappointing just the same.

The details aren't in place yet, and we will let you know when we know the dates for sure. It looks like we will be heading to Charleston in the next couple of weeks for a one-day pre-op of sorts. Rebekah will probably have another upper GI done and we will meet with the surgeon (or one of his assistants) to go over procedures and anything else that needs to be done. Then at that point they will be giving us a firm surgery date. It is possible that the surgeon will be able to place the G-tube laparoscopically which will be a much faster surgery and recovery time. Please pray that he will be able to do the surgery this way. If he can, we will probably only be in Charleston 2 or 3 days and then back home.

Rebekah has an appointment on Wednesday with BabyNet (a division of the No Child Left Behind act which services 0-3 year olds). The purpose of the appointment is to evaluate and assess Rebekah's strengths and weaknesses and determine which services she needs at this time. She has been a little slower to meet some of her developmental milestones, but nothing out of normal ranges yet. She may possibly qualify for up to 16 different categories (not all of them apply - they are just available if needed).

Miss Bekah is now weighing in at 7 pounds and 13 ounces. She made a 4 ounce weight gain in her last week. She is 21 and 1/2 inches long and some of her newborn outfits are starting to get a little snug. Her newborn clothes are adorable, but I must say after almost 10 weeks of being in this size, Mommy is ready for some new clothing options! :) I'm anxious for a little more hair so we can start accessorizing with hairbows and barrettes! :)

Rebekah has started to suck her thumb just a little bit. Usually she misses her mouth and pokes herself in the eye or nose or something, but a couple of times recently I have caught her getting her thumb in her mouth. It is so cute!!

Please keep Josiah and his family in your prayers this week. The doctors have decided that it is time to take him back to the OR this week for a surgery similar to the one Rebekah had to band his pulmonary artery.

That's about all the news for now. Enjoy the holiday weekend everyone! :)

Nancy

Our new digs!

As promised, new pictures!!! We actually didn't end up getting to hold Rebekah yesterday because some of her IV lines did not get removed until last night. By this morning, though, Rebekah was down to just a "normal" IV in her right foot in case the doctors need to administer fluids or medications through it. Currently this IV is not in use, and the nurse told us if it comes out, the doctors would probably not put another one back in. Rebekah also has a feeding tube in her nose, and today we are getting milk for an hour and a half, then off for an hour and a half. The goal is to get Rebekah's alloted amount of milk in just half an hour. Tomorrow we will be working on the bottle again. :) The rest of the wires you will see in the pictures are just monitors (heart monitor, blood pressure, oxygen, respirations).

First picture off the ventilator after surgery.

First attempt with a bottle!!

Rebekah's occupational therapist (OT) surprised us yesterday and tried a bottle with Rebekah. She drank 5 cc's of milk in about 15 minutes. Now, considering that 5 cc's is only about 1/3 of an ounce, she didn't get a lot, but we thought it was a great first try! Rebekah seemed to love the milk and didn't have any sucking or swallowing problems. Her biggest problem was that she just tired out. We will give it another try tomorrow. She has been sucking on her pacifier quite a bit today, especially when she is getting her feedings through her Ng tube. Tomorrow's feeding tube plan is for 1 hour on and 2 hours off. I have noticed this afternoon that Rebekah is starting to get a little fussy about 15 minutes before we start her next feeding. That is a good sign! She is starting to feel hungry which will help her learn to eat better. :)

Rebekah cuddled up to Mommy

Rebekah and Mommy

It has been a big change to move from PCICU to 7C. On the ICU floor, we were not able to pick Rebekah up, change her or anything else without the nurses' help. Here, we are encouraged to do anything we want to attempt with her! It has been nice to have a "normal" baby and do normal baby things. In the first two hours we were on this floor, Rebekah tested me out. She had two messy diapers, a very wet diaper, an outfit change and a severe case of hiccups! This girl is going to keep me busy!! Since then, she has had another messy diaper and had the hiccups two more times.

Daddy and his little girl

Rebekah's first outfit!!

Oh, yes! Another fun benefit to this floor is that we can finally dress Rebekah!! I'm planning to keep it to onsies for now since there is a good chance something will get spilled on, dripped on, etc, but it was fun to finally dress Rebekah. The little plastic boot type thing on her right foot is just to protect the IV the doctors put in.

First smile

Apparently, Rebekah enjoyed the move to step-down, because she gave me a few of these cute smiles this afternoon. Now, I know they are not really social smiles, but it's fun to see them anyway! :)

Along with our new room, we also have a new address! If you would like to send something, please address it to:

Rebekah Ellis

MUSC Children's Hospital Room #786

169 Ashley Avenue

Charleston, SC 29425

(843) 876-4786

Due to the heart monitors and oxygen in use on the floor, I am not able to use my cell phone in Rebekah's room. However, her room does have a phone that anyone can call to get in touch with me. The number above should dial directly to Rebekah's room. I do have wireless in the room, so I can check email also.

Nancy

P.S. This floor also has my favorite kind of crunchy ice!!! :)