Six Months!!

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

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

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

What is this stuff???

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

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

All wrapped up with a big red bow!

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

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

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

Sweet girl

Wishing all of you a Happy New Year!!

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

Rumor

Rumor has it that Miss Rebekah will be going home tomorrow....just in time for Christmas! She has been showing steady improvement, and the doctors feel that she is well enough to go.

We will be feeding Rebekah through her g-tube during the night when we are home. It is an attempt to decrease the work her heart is currently doing while eating. So at least half of her daily intake will occur overnight. That will take a little getting used to for all of us as Rebekah had previously been sleeping through the night. Actually, she will probably still sleep through the night. I will be the one setting an alarm to add more formula to the pump. It will be good for Rebekah, though, to have the extra calories without working for them.

Rebekah also received her first Synagis shot last night. She will receive this series of shots monthly for the next several months. Synagis is used as a protection against the RSV virus, which could be fatal for Rebekah. RSV is a normal cold for most adults and children over the age of 2, but for premature babies, or those with other heart and lung problems, RSV would cause a severe risk from complications and even death.

After being discharged from the hospital, Rebekah will have several appointments in the next couple of weeks. She will be seeing her cardiologist for a follow-up visit to make sure her heart and lungs are still working well. We will be having an appointment with her gastroenterologist and possibly another night in the hospital for some additional tests if they feel that is necessary. Rebekah has been struggling with GI issues (diarrhea and lack of weight gain) off and on for the last couple of months, and we all feel that it is time to do some further testing to see what might be going on. We will be back to our dietitian for a weight check again, and we will be seeing the pediatric surgeon's office here to have a new type of g-tube placed. We have had several problems with the Mic-key button that Rebekah has and she is currently using her third one in about seven weeks. Mic-key buttons should last between three and four months, but Rebekah's are only lasting about two weeks before they develop a leak and deflate. I had a consult with a resident from the pediatric surgeon's office on Monday, and they recommended a different type of g-tube that does not have a balloon on the end. For some reason, they have exactly the same type of problem that Rebekah has had with most of the babies that have the Mic-key button.

Also in January, we have follow-up appointments with Rebekah's pediatrician, endocrinologist, infectious disease doctor and geneticist. Sometime in the next few months, Rebekah will be referred to an opthamologist and an ENT or audiologist to have her vision and hearing checked. I think January will be a busy month!

Please continue to pray that Rebekah rebounds from this illness and that she and her brothers (and parents!) will be able to stay well this winter. The three older boys all came down with strep throat while we were in the hospital, so thankfully Rebekah was not around them. They have been on antibiotics and are hopefully on the mend now.

We are looking forward to spending Rebekah's first Christmas at home!!

Nancy

Lots of Info!

There has been a lot going on for Miss Rebekah today, and I'm happy to say this was a good day for her! After getting the nasal cannula last night, Rebekah has been so much better. She has been relaxed, happy and playful. Her body is not working as hard to breathe, so she has more energy and can concentrate on getting better. Rebekah's oxygen sats have been close to normal today, and her heart rate is back in the normal range as well.

Today Rebekah has been a little dehydrated, so the nurses had to place an IV since the one Rebekah had on Thursday clotted. The fastest and easiest place that the nurses could use was in Rebekah's scalp. So, she looks a little worse than she really is. :) Since the fluids were started late this afternoon, Rebekah has had 3 wet diapers. We are very glad to see that!!

In keeping with the dehydration, Rebekah's lungs were sounding junky with thick mucous today. She has started chest therapy with the respiratory therapists. Every eight hours they come and tap firmly on her chest and back with a small round cup-type thing. I know, that's a very technical description! It is supposed to help loosen up the mucous in her lungs so she can start to cough it up. Between that and the increased fluids, we are hoping that she will start to move more air in her lungs soon!

If Rebekah can wean down from her oxygen levels, there has been talk of sending her home still on a small amount of oxygen. Basically, the doctors won't keep her in the hospital any longer if she only needs a little oxygen (like 0.1 or 0.2 liters per minute). It will take a while to come down to that level, but it is a goal to work for!

On the home front, please pray for the rest of our family tonight. When Drew got home from visiting with us at the hospital, three of the boys were sick and throwing up. Please pray that whatever they have will be over quickly before we bring Rebekah back home!

Nancy

Sunday Recap

We have had a rather up-and-down day today, but I'm happy to report that at the end of the day, we are ending on an up note!

This morning Rebekah was probably the worst she has been since Thursday. Her temperature was up, she had little to no urine output, her oxygen sats were hanging out in the mid 70's, and her lungs were sounding a little congested.

During the day, Rebekah seemed to rebound, her sats went up with the help of a little more oxygen, her temperature dropped and she started wetting her diapers a little.

My dolly helps me feel better.

The radiology technicians came back this afternoon and repeated Rebekah's chest x-ray again. Yesterday's x-rays looked good, but today's showed "a thickening in the bronchial vessels consistent with a viral illness." Basically, all signs still point to Rebekah having a virus of some sort that is causing her troubles.

Rebekah looking cute last week.

When I came back from supper, I undressed Rebekah for a bath and noticed a rash around the back of her neck. I was concerned that it may have been a reaction to one of her medications, so the on-call doctor came to take a look at it. By that time it had spread a little to her chest and tummy. The doctor feels that it is yet another symptom of the virus that Rebekah seems to be fighting off.

Aaron loves his baby sister!

Our nurse tonight was not satisfied with Rebekah's oxygen sats, so she called the respiratory therapist (RT) to get a second opinion. He wanted to see what Rebekah would do off oxygen altogether, so we did a trial run. Rebekah did a great job for about 20 minutes, but then she started struggling to keep her oxygen up where it needed to be. The RT put a nasal cannula on Rebekah on 0.5 liters of oxygen (a really, really small amount).

Rebekah was a little put out with the nasal cannula and had a hard time getting to sleep tonight. However, once she fell asleep, her heart rate and oxygen have been better than we have seen since her admission on Thursday. Her heart rate is in the 110's to 120's (excellent for Rebekah!) and her oxygen sats are back in the low 90's. Her last blood pressure tonight was 77/45 which shows that Rebekah is finally resting well. We are hoping that the extra help of oxygen will allow Rebekah's body to put more energy into fighting off this virus and less time worrying about breathing. We'll see what happens tomorrow!

A little smile for Mommy

Nancy

Sunday update-12/20

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

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

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

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

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

D & N

Admitted

After a couple of weeks of fighting an upper respiratory illness, Rebekah was admitted to Greenville Memorial last night. We were met in the Children's ER yesterday afternoon by Rebekah's cardiologist, Dr. Lucas, who ordered an EKG, echocardiogram and chest x-rays. The good news is that Rebekah's heart looks good! We were concerned that some of the symptoms she was exhibiting were cardiac related, so we were very pleased to hear the good report on her heart.

However, Rebekah's lungs looked hazy, so at this point the doctors are saying that she has viral pneumonia. We are still waiting on the results of some labs and cultures to come back to know for sure.

When we first arrived in the ER yesterday Rebekah's O2 sats (oxygen saturation - the amount of oxygenated blood going to the body) were around 80-84%. A normal person's O2 sats are 100% and Rebekah's are usually around 90%. Rebekah has been on blow-by oxygen since we came in yesterday, and her sats are hanging out around 87-88% now. We did have one episode yesterday and again this morning when they dipped back into the upper 70's/low 80's for about an hour, but they are back up now.

Rebekah has also had a couple of times when her breathing has been more labored since we checked in yesterday. Specifically today her breathing has been harder when she is drinking a bottle. Nothing too major, but given Rebekah's fragile medical condition already, the doctors want to be sure they have all their bases covered.

Now for today's doctor update....Dr. Darby came by around 11:30 and checked Rebekah out. She is still pretty congested, so Dr. Darby wants to use a nasal steroid to try to dry up some of the mucus and also a broad spectrum antibiotic just in case there is a lingering sinus or respiratory infection going on. Because of Rebekah's lower O2 sats and her labored breathing during her bottle this morning, Dr. Darby wants to alternate bottle feedings with g-tube feedings to give Rebekah a bit of a break in working so hard to eat. There is such a balance between keeping her used to working for her food (bottle) and allowing her to have a bit of a rest (g-tube). No one wants Rebekah to get "lazy" and decide that it is easier to refuse the bottle and have all of her feeds tubed. So, basically that is the plan for today. Tomorrow we will have another chest x-ray to compare with the one from yesterday and see if Rebekah has made any progress (hopefully!!) and we will go from there. On the one hand, Rebekah really isn't sick enough to warrant a hospital stay, but with her medical conditions, she isn't really well enough to send home. If she was a "normal" child, medically speaking, we would never have been admitted, but Rebekah likes to do things her way. :)

I've been enjoying the view of rain from my window and watching a few snow flurries fall with it. Zachary's and Justin's schools had early dismissal today because of the weather, so they are home already, and I am sure they are hoping for snow! The latest forecast doesn't give much hope for any accumulations, but that doesn't stop the excitement!

We have had great nurses and a great experience here so far. We have also had some great friends pitch in and help out with the boys and meals. A special thanks to Darren and Sarah for watching the boys yesterday and today. That has been a huge help!! I was also grateful for Rebekah's pediatrician, Dr. DeMoss coming to the ER last night to see us. He is Rebekah's primary care physician, so technically, he is her admitting doctor, but he could easily have done his paperwork over the phone or fax. He hung out with us for about an hour before we moved up to the floor. I just can't say enough about all the wonderful doctors and medical providers we have!

That's all the current news for now. I'll update with any new information or changes that happen. Thank you all for praying for Rebekah Grace!

Nancy

On the mend

Thank you all for praying for Miss Bekah! She is doing somewhat better after a few doses of antibiotics. As it turns out, Rebekah probably had an ear infection. I say probably because her doctor wasn't 100% sure that her ears were infected, but they did not look normal, either. Based on the appearance of her ears combined with her other symptoms, we are treating Rebekah for an ear infection. The big news, however, is that her lungs are clear. That was very exciting to hear!

Rebekah's weight check this week was okay. Just okay. She did not gain even a fraction of an ounce, but on the other hand, she did not lose any weight, either. So we went back to the drawing board! As some of you may know, our fourth son, Caleb, had multiple food allergies that he eventually outgrew around the age of 15 months. One of those allergies was a dairy protein allergy. It seems likely that Rebekah shares this allergy with her brother. So, I am back on a dairy-free diet to see if it makes any difference in Rebekah. With Caleb, we knew right away that he had eaten something (or I had eaten something while he was nursing) that he was allergic to because he would throw up shortly after eating it. Because of the Nissen procedure, Rebekah does not throw up (although she does gag), so we are learning that if she is exposed to an allergen, it all comes out in her diaper. We are also including a higher calorie formula in her diet to increase the calories that she receives from breast milk. Our next weight check is next Wednesday, so please pray that we see some progress then!

We were also able to visit the lab and try to have Rebekah's blood drawn again. This time, our favorite technician, Nancy, was working and she was able to get all of the blood needed for all five tests on the first try. Praise the Lord! She was very upset that Rebekah had to go through two days of attempts to get blood. I told Nancy that she wasn't allowed any more sick days! Seriously, we will not even schedule a blood draw if she is not there. It is worth a little scheduling inconvenience to get it done the first time.

The troops are all up, so I have to run. Thank you all again for your prayers for our family and for Rebekah!

Nancy

Prayers Needed!

Rebekah woke in the middle of the night very congested and not breathing well. She had a temperature around 100 at 3:00, so we gave her some Tylenol. She did nurse a little and then fell asleep again and slept through what was left of the night. I will be making a call to her doctor this morning to see if we need an appointment today. Since Friday night Rebekah has been tugging at and messing with her left ear, so it is quite possible that she has an ear infection. Right now I am most concerned about her breathing/congestion. Because Rebekah's right lung is not functioning, it is imperative that we keep it free from infections. Please pray that we will get this little cold cleared up quickly!

Also, we have another weight check this morning. Rebekah has really been eating well in the last 5-6 days, so I am hoping to see at least a little progress! Pray for wisdom for us all as we discuss Rebekah's feeding plan for the next week.

And last, we were never able to get Rebekah's lab work done last week. She ended up with nine attempts total (4 in the arms, 1 in the wrist, 2 in the hands, 1 in the foot and 1 in the scalp) and the technicians were only able to get 1/2cc of blood. It was enough to run one test (a CBC), but Dr. Johnson ordered five different tests. The CBC looked good, so we were pleased about that! Today we have to attempt drawing blood again to complete the rest of the lab work. There is a technician named Nancy that was successful in drawing Rebekah's blood a couple of months ago, and she was out sick last week. We are praying that she will be back today and that she will be successful!

Thank you for praying for our sweet girl!

Nancy

Immunology

Rebekah and I met with her Infectious Disease doctor this morning, and we had a really good appointment with him. Dr. Johnson was pleased that Rebekah has not been sick so far, and we are too! Rebekah's tonsils look good and are a good size for her. Apparently, it is not uncommon for kids with DiGeorge to have tonsils that are too large and need to be removed. Rebekah's ears also look good with no signs of any infections, either now or in the past.

We won't have any information about Rebekah's immune system until we have the results of her labwork. And, unfortunately, the lab technicians were not able to draw blood today because they couldn't get a vein that would cooperate. After several tries, the technicians decided to give Rebekah a break and try again tomorrow. When we finally do get the labwork done, it will be a couple of weeks before we get the results back. Assuming there are no major issues with the labwork, we will not have to return to see Dr. Johnson for two months. If there are some problems that require immediate attention, his office will reschedule us an earlier appointment.

Tomorrow we have another weight check and another attempt at labwork. Hopefully tomorrow's attempt goes better than today did!

Nancy

Happy Five Months!

Rebekah is officially five months old today! Time seems to be flying by - it really doesn't feel like we headed to Charleston to begin this adventure five months ago.

As you know if you have been following the blog, Rebekah is still struggling to gain weight. This has been her biggest challenge so far. We have been seeing Rebekah's dietitian weekly for weight checks and adjustments to Rebekah's feeding plan. The frustrating thing is that we haven't seemed to be able to find the "magic" combination of feeding times and amounts to allow Rebekah to gain weight. In the last few days, Rebekah seems to be showing an intolerance to the formula that we are using to fortify her milk, so we are back to the drawing board to figure that out.

Developmentally, Rebekah is really making some good progress! Of course she is still not where the boys were at five months old, but we are really pleased to see how far she has come in the last month or so. Rebekah is holding her head up on her own almost all of the time now. She does tire easily, so we don't push her for long periods of time, but she is getting stronger all the time. We are currently working on teaching Rebekah to roll over. She is getting to be a pro if we help her by rolling her onto her side first. Then she can get right to her tummy or her back on her own. Rebekah is also working hard at playing with her toys - grasping toys in both hands, bringing toys to her mouth, and turning her head both directions to follow a toy or some other object. Our therapists have been great in helping us learn how to work with Rebekah on her developmental skills.

Mommy loves Rebekah's dimples!

Other than therapy this week, Rebekah has her weight check and an appointment with the infectious disease doctor. I'm not sure exactly what they will be looking for or testing, but they will be checking her immune system. I think it will involve labwork, so please pray that it will go smoothly!

We will update later in the week after Rebekah's doctor's appointments and let everyone know how things are going.

Nancy

Charleston

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

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

Nancy

Disappointing

I have to say that Rebekah's weight check today was disappointing. For the first time in her struggle to grow, she actually lost weight this week. Not much - just an ounce and a half, but still it's not the way we want to go. So our dietitian is tweaking Rebekah's feeding plan again. We will have another weight check next Tuesday. We (Rebekah's doctors and Drew and I) are really working hard to find the right combination of feeding amounts/times/frequency that works for Rebekah. Too little and she doesn't grow; too much and she becomes overfed and refuses to eat at all. This is a very difficult and very frustrating hurdle for us to get over right now. Please pray with us that Rebekah will be able to gain some weight this week.

Rebekah "talking" to her brothers!

On a brighter note, Rebekah's endocrinologist had nothing but good things to say about Rebekah today. He was so pleased with how she was doing that he didn't see a need for labwork today. Rebekah will be seeing an infectious disease doctor in the next few weeks to follow her immune system, so we will be able to check her calcium and vitamin D levels during the labwork that the infectious disease doctor will require. Rebekah didn't know enough to be happy about getting out of the labwork, but it sure made my day! She is a hard stick and the last blood draw we had was rather rough.

Tomorrow we are heading to Charleston to change Rebekah's tube for a Mic-key button. It should be a quick in-office procedure, so hopefully we will be back tomorrow evening. We will try to update tomorrow night and let everyone know how things went.

Nancy

Updated prayer requests

We seem to have found a break in the chaos here. I thought I would take some time to update the prayer requests for Rebekah and the family. We appreciate all of you who have faithfully prayed and followed along with us as Rebekah has joined our lives and begun her long journey. Please check out the updated side bar to the right for our current praises and prayer request.


D

Feeding......

Bekah is not responding well to the increased feeding. We are trying a totally new approach for her feeds for a week. We will let you know how it goes. Hopefully we can get this little girl figured out. I some how misplaced the manual on her.....

D

What's Up, Doc?

Rebekah is feeling a little grumpy tonight since she had shots at her well visit this morning. She is letting us know that she isn't really appreciative of the effort we made on her behalf to vaccinate her! :) After a bottle and a few more complaints, she is now sleeping peacefully on Daddy's shoulder.

This has been a busy week of doctor's appointments for Rebekah in addition to her regular therapies. On Mondays, Rebekah's Early Interventionist comes to see her for an hour, followed by an hour of Physical Therapy. Rebekah's Speech Therapist comes on Wednesdays for a half hour, and we have Occupational Therapy on Thursdays for an hour. Of course, that schedule is all subject to change depending on the doctor's appointments that are scheduled for any given week.

All this therapy is hard work and makes Rebekah sleepy!

This week Rebekah saw Dr. Lucas on Tuesday. I mentioned to Dr. Lucas that we had seen a few things in the last couple of weeks that we have not noticed before. Several times Drew and I have noticed that Rebekah's heart rate is elevated significantly and her breathing becomes more rapid. Also, Rebekah has been sweating for no apparent reason. When Rebekah's O2 sats were measured on Tuesday, she was a little higher than her normal. A person with a normally functioning heart would have an oxygen saturation level at 100%. Because of her heart defect, a "normal" oxygen saturation level for Rebekah is in the 85-90% range. On Tuesday, Rebekah's sats were hanging out around 94%. All of that combined to give Dr. Lucas hope that the collaterals are finally starting to grow and that is causing extra work for her heart. The plan for now is to give Rebekah a little more Lasix to rid her heart of a little more fluid and plan for a catheterization sometime in January or February. We are praying that the collaterals are indeed growing and will be large enough for the surgeon to work with to make and artery to connect Rebekah's lung to her heart.

I love chewing on my fingers!

After visiting Dr. Lucas, we went downstairs to see our friends in the GI office. We were a little disappointed to find that Rebekah had only gained an ounce in the past week. So we are increasing her intake again (from 95cc's per feeding to 105cc's per feeding). The doctors are closely watching Rebekah's growth, but they are not necessarily looking for a specific amount of weight gain. What the doctors are looking for is that Rebekah grow following along her growth curve, and right now her curve is a little flat. We are working to give that flat line a little upward curve.

Rebekah has also been chewing on her hands and fingers a lot more in the last week or so. All of the boys cut their first tooth when they were five months old, and Rebekah is 4 and 1/2 months old this week. We'll see if she follows in her brothers footsteps!

Next week's agenda includes a trip back to GI to check Rebekah's weight gain and a trip to visit the endocrinologist. Rebekah will have labs done to check her calcium and vitamin D levels, among other things. On Wednesday we head back to Charleston to get Rebekah's g-tube changed to a Mic-key button. This one will sit flush with her skin and not have any tubing attached to it unless we hook the tubing up to use it. Hopefully, there will be much less of a chance of Rebekah pulling it out, and dressing her will be much easier! They will be able to change the button in the office during a regular office visit, so this trip will just be down and back in the same day. Please pray for traveling safety for Rebekah and I as we travel and for no problems getting the button changed when we are there.

Until next time,

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

Dedication Day!

Rebekah has had a busy week and a half! Although she still has a little bit of a runny nose, her cold seems to be pretty much gone. Now if we could get her brothers' colds cleared up, we may be back to normal! :)

Rebekah dressed up for her dedication.

Last week Sunday was Rebekah's dedication at church. She was a very good girl and slept through most of it. Pastor Chuck did a great job, as always, and Rebekah was very still and quiet as he prayed for her.

Listening to Pastor Chuck talk about Rebekah's special verses.

Rebekah also met with her geneticist, Dr. Rogers, last week. Most of what he said we had been told before, but he did explain one thing that we hadn't been told before. Rebekah has a short palate which could mean some speech problems in a few years when she starts talking. The good news is that any problems should be correctable either with speech therapy or surgery or both.

So cute!!

Rebekah has qualified for several therapies which she receives at home. We are working hard to catch her developmental milestones up to where they should be for an almost four month old. She is now grasping on to toys or other small objects, holding her head up a little better and trying to roll over. We work hard at playing with Rebekah and so do her brothers! :)

Nancy

Sick???

Looks like we maybe are experiencing our first cold. Bekah has done so well to dodge all the rest of us being sick over the last month. We will see how this goes. Hopefully its a minor cold and won't require going to the doctor's.

She all so has her first occupational therapy evaluation this morning. Such a busy little girl for only 4 months old and so demanding also, she insists that her therapists come to her. Just no time to go out when you are sleeping, eating, keeping up with your brothers, and of course have to make time to play and snuggle with Daddy. What's a girl to do.

D

Latest Updates

Hello again! I know many of you have been asking and waiting for an update, so I will try to oblige all of Rebekah's adoring fans. :)

Practicing holding my head up.

Rebekah has been doing very well with her g-tube. Actually, she is doing so well eating by mouth that she has hardly used the g-tube at all. Several people have asked why in the world we chose to have the surgery done when it seems that Rebekah did not need it. The short answer is that in order to do the Nissen procedure (wrapping the top of the stomach around the esophagus to prevent reflux) we had to also do the g-tube. According to Rebekah's surgeon, Dr. Hebra, about 95% of children who have the Nissen procedure do not return to eating by mouth for about 3-4 weeks. Therefore, they will not do the Nissen without the g-tube. Even though Rebekah is not using the tube much at all, it will come in very useful when she has her next heart surgery. Rebekah will not have to have quite so many IV's for her next surgery because the doctors will be able to use the tube to administer medications and fluids. As far as the Nissen, it has been wonderful! Rebekah has not thrown up even once since her surgery, and we are very excited about that!! As you might imagine, it is wonderful to put Rebekah in a set of clothes for the day and actually have her still in them at the end of the day. :)

My temporary g-tube

In developmental news, Rebekah is working at holding her head up more on her own, although nowhere near an average three and a half month old. Rebekah has discovered her hands and spends a lot of time studying them when one or both of her hands passes in front of her eyes. It seems that Rebekah has given up on the pacifier in favor of the two middle fingers on her left hand. She is getting pretty quick at finding those fingers when she is ready to go to sleep or is hungry.

Trying out the bumbo chair for the first time.

Rebekah is scheduled to return to Charleston on Nov. 11 to have her g-tube changed for a more permanent mic-key button. That one will be flush with her skin and will not have the tubing attached. When we need to use it, we will lock in the tubing to use the button and then detach the tubing when we are done. There will be less risk of Rebekah (or Caleb) pulling on the tube and pulling the button or tube out. It will also be easier to hide in her clothes than the one she has now.

Daddy and Mommy love this smile!

If you missed the original post here, remember that you are all invited to Rebekah's dedication on Sunday at 10:30. We'd love to see you there!

Nancy

Back in the routine

Not much to report today except that we are struggling to get back into a routine since coming home from Rebekah's surgery. It seems that the boys and I have come down with colds, so we are not feeling the greatest, either. Please pray that Rebekah will escape our cold germs. We are trying hard to wash and keep things even more clean than usual, so hopefully we can avoid a cold for Rebekah.

Rebekah has been slowly recovering from her surgery. While we would love to be holding her more, it seems to cause Rebekah a good deal of pain to be held. So for right now Rebekah is in our pack 'n' play in our living room. We have been letting her lay still in there and even feeding Rebekah's bottle to her while she is laying still. Hopefully the pain will begin to ease in the next couple of days.

Have to run and get some laundry done. You all have a wonderful weekend!

Nancy

The Daily News

The good news is......there isn't much news to report! Rebekah had an eventful night, only because the doctors from cardiology and the doctors from pediatric surgery couldn't agree on a "safe" range for Rebekah's oxygen saturation levels. So for a while we were riding back and forth between going back on oxygen and staying off (just oxygen through a nasal cannula like she was on in the picture below, not back on the ventilator).

Rebekah on Tuesday morning after moving to the step-down unit.

So far, Rebekah has tolerated her feedings very well. As a matter of fact, when we met with Dr. Hebra, her g-tube surgeon, the two things he told us to most certainly expect were that Rebekah would not be eating by mouth for 3-4 weeks post-surgery and that she would not be able to burp. We have been "burping" her g-tube, which basically amounts to letting air out of her tummy. Rebekah has now had every feeding but one by mouth (and LOTS of milk at each feeding compared to what she had been eating before) and she has burped twice, once all on her own without me patting her back. So, no offense to anyone, but sometimes this little girl just has her own plans no matter what the doctors say! :)

Rebekah this morning in the step-down unit.

This just in......we are now packed and ready to leave!! Rebekah has been discharged and we should be home late this afternoon. We will be coming back in two weeks for a one-day clinic (like a doctor's appointment) for Dr. Hebra to check on Rebekah's Nissen and make sure all is going well.

Rebekah sends her love to you all!!

Nancy

Save the Date!

Day 2!

I am happy to announce that we are having an uneventful morning in the PCICU this morning! Rebekah was taken off the ventilator around 2:00 this morning, and although she has a nasal cannula with a little oxygen, she is breathing on her own today. We are listening to the familiar beep, beep, beep of the monitors in the PCICU.

The view outside the hotel we are staying at. It is a beautiful fall morning today.

Since Rebekah is in the PCICU, the doctors took the opportunity to do a few other tests as well. This is Rebekah during her EKG yesterday. She slept right through it! You can't see the g-tube due to all of the leads, but it is on her left side about at the level of her belly button. It is clear and kind of rubbery feeling (almost like a pacifier or bottle nipple) and has a 8-10" IV catheter through the center of it. She has not started using it yet, but as soon as we are moved to the step-down unit, they will begin giving her some clear Pedialyte through the g-tube.

Speaking of step-down units, we are moving there just as soon as they have a bed available. We must have come at a peak time because the PCICU was completely full yesterday (the most we had seen previously was all but one bed full) and the step down unit is completely full today. As soon as someone is discharged, we will be moved to 7C and if all goes well, we could be discharged as early as tomorrow!

Rebekah during EKG.

Sleeping beauty. :)

This is a sign that is posted in front of the parking lot at our hotel near two very large trees:

Hmmm.....draw your own conclusions.......

That's it from the PCICU this morning. We are hoping to move to step down soon and have a very quiet, uneventful day. Of course, we will post anything new that happens and try to get some more pictures a little later when Rebekah is awake!

Nancy

Recovery

I am sitting here with Rebekah. She is doing great. She has woken up and has been little alert. We have one more vent setting to drop down to then we should be able to be off the ventilator. We may be able to be off and go to step down later today. Over all she is doing much better then expected. We Praise the Lord for his protective care of Rebekah.

D

Post-Op!

It's 10:45 and Rebekah's surgeon just came in to speak with us. The surgery went perfectly, and Dr. Hebra was very pleased. He was able to place the g-tube and do the Nissen procedure all laparoscopically, so she did not have to have the large incisions that could have happened. She just has six small (1/2 inch or less) incisions that will heal fairly quickly.

Rebekah is still on the ventilator and will be until she fully wakes up from the anesthesia. Based on her previous experience under anesthesia, we are expecting that it will take a while, but we are thankful she is doing so well.

We should be able to go in and see Rebekah in about a half hour. We will post some pictures and another update later on today. Thank you all for your comments on facebook and prayers. Rebekah is one very loved little girl!

Nancy

If you think of it, please keep Zachary in your prayers today as well. He was heading to the doctor this morning for a possible ear infection and almost certainly a sinus infection. Pray that he is well before Rebekah comes home and that no one else comes down with his sniffles!

Bekah just left to go to the OR
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

Homeward Bound

It's raining in Charleston, so it is time to go home! Everything in downtown Charleston floods when it rains hard!

We traveled down last night for Rebekah's pre-operative appointment this morning with her surgeon, Dr. Hebra. He will be performing the g-tube and stomach fundiplication (also known as the Nissen procedure) for Rebekah.

My favorite outfit right now. I LOVE it and the little girl in it!!

So the words we heard from Dr. Hebra today were high-risk, major surgery, complicated procedures, potential complications, and PCICU. I am very okay with PCICU! Rebekah will be going back there following her surgery during her recovery. I guess it will depend on bed space whether or not she will go home from the PCICU or whether she will move back to 7C before being discharged. Dr. Hebra told us to expect a week in the hospital with Rebekah's recovery given her small size and the amount of surgery that will be done.

Little girls look so cute in red!

To explain the surgery in a nut shell, Rebekah will be having a small g-tube (gastric tube) put through her abdominal wall into her stomach. The end of this tube that is on the outside will connect to a pump much like the pumps used for IV's in hospitals. Rebekah's food (breastmilk) will go into an IV bag and feed through the tube directly into her stomach. That part is not the complicated part.

The real risk in Rebekah's surgery comes in the Nissen procedure. It is a very risky, complicated procedure, and I will try to explain it as simply as I can. If you were looking at Rebekah's stomach, her spleen would be on the right and her liver on the left. Dr. Hebra will be disconnecting the spleen and liver from Rebekah's stomach (some tissues and veins, etc.) and wrapping the top of her stomach around the esophagus where it enters the stomach and stitching it together. Drew came up with a great analogy that I will share. Picture the top of Rebekah's stomach like a Christmas tree skirt. The skirt will wrap around the base of the tree and where the two parts of the skirt meet will be stitched together. This will allow food to flow down to the stomach, but will reduce the amount of reflux by 70-80%. Rebekah will likely remain on her reflux medications to try to control the other 20-30% of the time that she could reflux since one of our main goals it to try to prevent aspirating into her lungs. Because of the soreness and swelling, Rebekah will probably not eat much by mouth for the first 3-4 weeks, although we are certainly encouraged to let her eat by mouth as much as she will. Dr. Hebra warned us that she may slide backwards in her eating skills just from lack of use in those weeks, but we were prepared to hear that. The ball is already rolling to start speech therapy to retain and improve the oral motor skills that Rebekah already has. Any amount that Rebekah does not eat by mouth will get pumped into her g-tube so that she will always get the correct amount of food per day. Hopefully we will see some growth as a result!

The first smile caught on camera - and look at that dimple!!!! :)

We should be receiving a phone call on Friday with the time and instructions for checking into the hospital on Monday morning. We will be driving down to Charleston on Sunday so that we are in town in time to get to the hospital. Right now Rebekah is first on the schedule which would put us at the hospital at 6:30 on Monday morning. The surgery itself is about two hours long, but the prep and finishing will make it about 4 hours in the OR total. The good news is that the anesthesiologist that Rebekah had for her first heart surgery, Dr. Walden, and the entire surgical team that she had before will also be her surgical team for this surgery. That combined with Dr. Hebra's thoroughness and experience in doing this surgery have made me as comfortable as I will ever be about moving forward with the surgery. Dr. Hebra believes that he will be able to complete the surgery laporascopically through six small incisions made in Rebekah's abdomen, so there shouldn't be any major scarring or recovery.

Please pray for Rebekah next week as she undergoes major surgery and recovers. Please pray for Drew and I as it is never easy to see your child go through a major surgery, even when you know it is the best thing for them. We will be sure to keep everyone updated as things progress.

Nancy

Update at last!

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

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

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

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

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

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

Nancy

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

Sick Germies!

I was awakened (more than once!) in the night by Caleb who has spiked a fever hovering around 100.5. Not sure yet what he has or what is causing it, but he also doesn't want to eat anything. Please pray that whatever it is will not be spread to the rest of us and especially to Rebekah. We will be fighting the bugs and sterilizing everything around here!

Nancy

Happy Two Months!!

It's almost unbelievable, but Miss Rebekah celebrated her two month birthday today! She had a very low-key day, but did get to see Grampy and Grammy last night and this morning.

Justin loves his sister!

Rebekah is doing much better with her eating. Thank you all for praying; we are very excited to say that after a rough 24 hours immediately following the tube placement, Rebekah has done very well! The tube Rebekah has right now is an Ng tube (goes in through her nose to her stomach), and it is a more temporary type of Ng tube. Because it is more temporary, it is very stiff and does not stay taped to her cheek well. Rebekah surprised us (well, not really if you remember this) by pulling her tube out Thursday night. Thankfully it went in relatively easily and we were able to continue feeding her through the night. We are hoping that the doctor will replace it with a more flexible type of Ng tube that is designed to stay in for a few weeks at a time when we go for our follow-up appointment on Wednesday.

These two turkeys love their sister, too! Zachary and Aaron love to pose with Rebekah.

Speaking of Wednesday, we have another follow-up appointment with our cardiologist also. The two doctor's offices are conveniently located in the same building, so we will be able to go from one to the other easily. I know we will have an echo done on Wednesday, but I am not sure if there will be any other tests done.

Mommy loves the headwraps with bows! :)

We are hoping for a good weight gain when we have our check-up this week. I'm personally hoping for at least 8 ounces....we'll let you know!!

Have a blessed Lord's Day tomorrow!

Nancy

Good News, Bad News

The good news is.....I am posting! The bad news is....I was going to post pictures and couldn't get them uploaded. I will try again tomorrw. :)

Now for the real good news/bad news. The good news is that Rebekah gained six, yes, count them - six! - ounces last week. That was the largest weight gain in her life...literally! :) We were very excited that Rebekah gained so much. She probably won't find that very exciting in 20 years, but we're cheering for it now!

And now, for the rest of the story.....since Sunday Rebekah has been much more tired during her feedings. Actually, she has been tired to the point of drinking about half of her bottle and then sleeping for 15 or 20 minutes only to wake up hungry and finish the bottle. She has also been spitting up her medications about once a day, and that's not helping her tummy issues!

The solution? A feeding tube. Yes, I know, it's not the route we had hoped to take, but it seems that Rebekah is telling us that it's time. For now we have an Ng tube (nasogastric tube) which is inserted in her nose and ends in her stomach. The good news is that all of her medications and milk can be sent effortlessly to her stomach with no effort on Rebekah's part. The bad news is that it significantly increases Rebekah's reflux because the tube prevents the valve at the top of the stomach from closing completely.

So the plan is to feed Rebekah by bottle as much as she will take in twenty minutes. If it is at least 50cc's (almost 2 ounces) then we call it a good feed. If it is less than 50cc's, we will push the rest into her tube with a syringe. During the night Rebekah will be getting continuous feeds of 15cc's per hour to see if we can boost her growth and weight gain a little more.

Since the feeding tube was inserted this morning, Rebekah has had three episodes of spitting up significant amounts of her feedings along with some medication. They all occured during bottle feeding, not while she was on continuous feeds. We are waiting to see how she does through the night and will be talking with the doctor in the morning to reevaluate the plan.

We would appreciate your prayers for Rebekah's growth and comfort and also for wisdom for us and for Rebekah's doctors as we try to find a feeding plan that works for Rebekah.

Nancy