2011 Snow Storm!

We are enjoying a week of snow days from school thanks to a snow storm that dumped 7.5" of snow followed by 0.25" of ice on us Sunday night and Monday. We are enjoying the time off from school to play together and enjoy being home.

Because of the snow, all of Rebekah's appointments this week have been cancelled. So, we have not seen her cardiologist to have an echo to see if the oxygen therapy is helping her high pressures. As of tonight, it was reported that cardiology will open at noon tomorrow. I am planning to call as soon as they are open to reschedule our missed appointment.

I see you pointing that camera at me!

Last week Rebekah had an audiologist appointment to recheck her hearing. If you read the last post, you may remember that I was going to suggest to the audiologist that we stop checking Rebekah's hearing every six months. However, I learned at Thursday's appointment that the two types of tests that Rebekah have had are different. The "long" test that Rebekah passed tested her auditory nerves. We know that Rebekah's auditory nerves are fine. The short test, however, tests the middle ear; basically, it measures the vibration of the eardrum and how well Rebekah actually receives sound into her ear. So even though Rebekah's auditory nerves are fine, she is not receiving sound into her ear as well as she could. Rebekah's loss is in the slight to mild range right now, with her right ear testing very close to the mild/moderate range. If Rebekah falls into the mild/moderate range, she will be fitted for hearing aids for at least a few years. Rebekah will continue to have her hearing tested every six months.

Daddy's first dance

Rebekah also had a gastroenterology appointment on Thursday last week. The week of Christmas we had reduced Rebekah's overnight feeds from 40 mL's an hour to 35 mL's an hour. Rebekah maintained her weight even with the reduction in feeds, so we were given the green light to reduce by another 5 mL's an hour. It doesn't sound like much, but every time we drop 5 mL's, Rebekah gets 2 ounces less of formula overnight. It has already made a big difference in her appetite, and we are seeing Rebekah eat much more than she was a month ago. The plan is to continue to check Rebekah's weight once a month and reduce her feeds by 5 mL's each month that she maintains her weight or gains. Our GI doctor said a conservative weight gain for Rebekah should be 4-5 ounces each month. So as long as she meets that goal, we continue to drop feeds. We are hoping that Rebekah will be off, or very close to being off, her overnight feeds by her birthday. We will take it one step at a time, though, and go as slowly as Rebekah needs to.

Rebekah loved sledding!

This week Rebekah missed her endocrinology and cardiology appointments, as well as two of her therapies. While it has been nice to have a break from the constant busy schedule, I am a little nervous about fitting in those two appointments into the next two weeks, which were already busy enough! It will work out, though. It always does. :)

After a while, we gave up sledding and just sat in the snow.

Rebekah kept patting the snow with her mittens.

If you would like to see more pictures of the boys and Rebekah playing in the snow, click here to head over to our family blog. We really enjoyed our snow days!

Yes, Rebekah really is in there somewhere! :)

Thank you all for your prayers for Rebekah. So far she has remained well, and we are thankful for that! Please continue to pray that Rebekah stays well and that her pressures will be better when she has her next echocardiogram.

Nancy

Happy New Year!

I just realized that it has been a while since I last posted an update on Rebekah. The bad news is that I am falling behind in my blogging. The good news is that there hasn't been anything to update on! :)

January brings in a round of doctors visits for Rebekah. I know, what's new, right? :) This coming week Rebekah will see her pediatrician (for a very belated 15-month check up), her audiologist for a re-check of her ears, and her gastroenterologist for a routine visit. We are not anticipating any changes or issues at the pedi or audiologist appointments. During the GI appointment, I am hoping to discuss a plan to wean Rebekah to a much lower volume of formula through her g-tube, and ultimately, a plan to wean the g-tube use permanently. After being given the go-ahead from Rebekah's cardiologist to cut back her g-tube feeds, we have decreased the volume Rebekah gets overnight from 40 mL's per hour to 35 mL's per hour. I know that doesn't sound like much, but over the course of her 12 hour feed, that adds up to two ounces less per night. And Rebekah is definitely responding to the decrease by eating more! Like all of us, she has days when she eats more and days when she eats less, but overall we have seen an increase in the volume of food she is taking in orally. Please pray that this continues and that Rebekah continues to make forward progress in the growth department while decreasing her g-tube feeds!

Rebekah also has a pretty significant cardiologist appointment this month. On January 11 she will go in for a regular check-up and echocardiogram which will tell us if the oxygen therapy is doing anything to help lower her pulmonary hypertension. Please, please pray that her numbers have begun to come down. Pulmonary hypertension will take a toll on Rebekah's body at some point, and we would love to see those numbers lower. In the same regard, please continue to pray for wisdom for all of Rebekah's cardiac team in knowing when/how to treat her high pressure.

Also on the calendar for January is a follow-up appointment with Rebekah's ophthalmologist. We last saw him in September and decided to wait on any possible treatments until after surgery. Now we are post-surgery, and we will be discussing possible patching and/or glasses to try to strengthen Rebekah's right eye. I have noticed that her right eye has been turning inward more than before, especially if she is looking at or playing with something closer to her face. I am definitely going to be mentioning it to the doctor at our appointment.

One other thing that is not on the schedule, but will be soon is a trip to see the orthopedic doctors at the Shriner's Hospital here in Greenville. Our physical therapist has mentioned it a few times, but again, we were waiting until Rebekah was post-surgery to schedule that appointment. In the last few weeks, Drew and I have felt Rebekah's hips popping when we play with her. It is probably nothing of significance, but we want to make sure there is not a problem we need to address.

Rebekah is all cleared to begin her therapies again this week. We are excited about that! It will be good to see our therapists again. And I must admit, I'm anxious for them to see how far Rebekah has come since surgery. She is really beginning to take off in all areas of her development.

I guess that's all for now. Rebekah has been well since her last hospital visit, and we are praying that continues! For all of our SRBC family, please know that if we are not in services it is because we are trying to keep Rebekah well. Happy New Year! We love you all!

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

Rebekah Update and Easter Pictures

Wow! I thought we were ready for spring, but I must have missed it somewhere and gotten summer instead! :) We have had temperatures around 90 in the last couple of days. At least we are supposed to get some rain tomorrow and hopefully some cooler temperatures.

If you have noticed a lack of updates, it is because there has been a lack of news to update! Rebekah has done so well lately that we are all amazed! In the last three weeks, our family has had sinus infections, respiratory infections, ear infections, swollen tonsils and a stomach virus. We praise the Lord that Rebekah was spared from all of those illnesses! She has not needed any oxygen for about three weeks, and her oxygen sats have remained stable in the 80's.

Rebekah and Daddy playing peek-a-boo.

Rebekah had a check-up with her GI doctor today, and the doctor was amazed at how good Rebekah looks. She kept saying over and over, "I have never seen Rebekah look this good." Music to this Mommy's ears!! Rebekah is now 13 pounds and 5 ounces and still hanging out around 24 and 3/4 inches long. She is showing steady weight gain, so the only change in the amount of food she is getting is that we are increasing her overnight feeds just a little to keep up with her weight gain.

Rebekah and biggest brother, Zachary.

The other feeding change (and a BIG one!) is that Rebekah is officially not allergic to dairy products! Drew and I have felt that this was the case from the beginning, but doctor after doctor kept insisting that she must have a dairy allergy or some other type of allergy. Rebekah has been eating baby food for almost a month now, and for almost a month she has been diarrhea-free. As a matter of fact, she has struggled a little bit with constipation now, but nothing that a bit of juice hasn't cured!

We have the green light to continue feeding Rebekah baby foods as we would normally feed a baby - adding in things like cheese and yogurt. Rebekah already loves the foods she has had so far - pears, applesauce, bananas, green peas, carrots, acorn and butternut squash, and sweet potatoes. Of course, Daddy has indulged her in a few bites of ice cream which she also loves. A girl after Mommy's own heart! :)

You can dress me up, but I can still be silly! :)

We will be going back to the GI doctor the week before Rebekah's first birthday for a change in formula. Not that there is anything "magical" about being a year old versus being eleven months and 29 days old, but apparently doctors don't cross that line. Once Rebekah is a year old, she will be able to have Pediasure, which is mixed to a higher calorie concentration. It is also a little bit better tasting than what she is on right now. The goal is to have Rebekah start taking more by mouth and less by g-tube so that sometime in her first year she can transition completely over to oral feeding and no longer have any use for the g-tube. I like that goal! It has been nice, though, to be able to feed her without the stress of getting everything down orally. And it has been a life saver when it comes to medications! But, we will gladly deal with giving medications orally when Rebekah is able to be done with the g-tube.

Zachary, Aaron and Rebekah

You might be wondering why we don't have a family picture, or at least one of all the kids, from Easter. We had great intentions, but Justin got sick after church, so he was out of commission. Caleb was tired and cranky and was not having any part of pictures, so that left Zachary, Aaron and Rebekah. We will have to recreate our Easter outfits another Sunday and try to get a few pictures. :)

Our beautiful baby girl

Rebekah has her nine month check-up tomorrow. I know we will be discussing referrals for both vision and hearing evaluations. I'm not sure what else (if anything) we will be covering. Rebekah is doing so well that it isn't necessary to have long, drawn-out visits with each doctor, so that makes it nice! We will also be seeing the cardiologist and the immunologist before the end of the month for follow-up visits.

Rebekah talking to us. Listen for "da-da."

That about wraps up our last week or so. We are hoping with the warmer weather that we can get rid of all the germs and sickness for a long while! Continue to pray for Rebekah that she will stay healthy and grow stronger. Also, please keep praying that her collaterals will grow - we know that all things are possible with God!

Nancy

Why do something when you can wait?

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

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

I like to play in my exersaucer!

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

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

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

I'm practicing sitting up more and more!

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

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

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

I'm working on clapping my hands now.

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

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

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

Looking cute in my girly overalls!

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

I love eating food!

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

Nancy

Belated Update!

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

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

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

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

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

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

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

Nancy

65 Roses

Cystic Fibrosis, also called "65 Roses" by young children who have the disease. Try saying 65 Roses quickly - it sounds surprisingly like cystic fibrosis. It's chronic. It's ugly. It's incurable. And, thankfully, Rebekah's test came back negative. Yes, for the last four days, we have known that Rebekah could potentially have cystic fibrosis and that she would be tested for it this morning.

Rebekah has had chronic respiratory problems and chronic GI issues for months. Both are significant markers for cystic fibrosis (CF). Last week, we learned that Rebekah is outputting large amounts of fats in her stools. Also another indicator for CF. I'm sure you can imagine that we were very concerned about the test this morning. Because of Rebekah's compromised lungs and immune system, a chronic disease like CF would shorten her life span considerably.

We were shaken. I was terrified. How in the world would we deal with something like this on top of all of Rebekah's other health problems? But, in the end, Drew reminded us both that God has His hand on Rebekah. He made Rebekah just the way He wanted her to be. Whether or not she had CF, or some other kind of illness is no surprise to God. Our job is to love and care for our little girl for as long as God entrusts her to us. And when her job is done here, she will be in a much better place than we can even dream of.

Not that we wanted the test to be positive. But, we had a choice. We could choose to be upset and bitter that Rebekah could potentially have her life shortened and deal with this debilitating disease. Or, we could continue to trust God and His plan for our family. I think I can honestly say we came to the point that we were ready to accept the test results no matter what. Of course, we are joyfully praising God that He did not choose this road for us. But, if He had, we would be praising Him still, for trusting us with such a task.

We still do not know what is causing Rebekah to output such large amounts of diarrhea, nor why she has such a high fat content in her stool. There is one other test that should come back early next week that will show if she is lacking pancreatic enzymes. There are several different reasons for that as well, one of which is Crohn's disease. That is also a very unpleasant, lifelong disease. Based on the results of the enzyme test, we may have further testing done next week. The likelihood of all of this being related to a dairy protein allergy is getting slimmer the farther we go along. Rebekah has not had any breastmilk since last Wednesday, and we should begin to see some improvement by now. For sure we should see some improvement by the middle to the end of the week if it is dairy related.

This afternoon Rebekah has started to run a low-grade fever and has started retching. It could be something as simple as a little stomach bug; it could be caused by drainage that is irritating her stomach; it could be related to the diarrhea, but not likely since the diarrhea has been ongoing for so long. The doctors are keeping a close eye on Rebekah this afternoon to monitor her symptoms.

Even with all of this going on, home is a possibility. Obviously, if she continues to run a fever or have unexplained retching, that will put a hold on things, but if we are just waiting for test results, we will most certainly be allowed to wait at home. So my prayer is not that we will be at home, but that we will be in the right place. If Rebekah is fine, I would love to go home. However, if there is still something going on that needs to be monitored by the medical staff, I am content to wait here in the hospital with her until we have answers.

Thank you for all of your prayers, and please continue to pray that we find some answers to Rebekah's tummy problems.

Nancy

Playing!

Sometimes it gets boring just laying in a hospital bed, so a girl's got to come up with something to do! Rebekah loves, loves, loves to play with her feet! Unless she is sleeping, you are guaranteed to find Rebekah playing with her toes, or chewing on them. :)

Rebekah playing with her toes and talking to me!

We have been making good use of our time, and working on some of our therapy goals. Mrs. Beth, we have been banging two objects together, no problem! We also bang them on the crib rails, on our toes, on our head and get them in our mouth! Just wanted to let you know in case you thought Bekah wasn't an overachiever!

Yep, I have the two-toy thing down cold!

Rebekah's hair is growing at an unbelievable rate! In doing some research this week (unrelated to hair growth, by the way) I found that kids with DiGeorge often have copious amounts of hair. I think Rebekah fits that picture!! We will have great fun with bows, pigtails and braids in our future. :)

Rebekah usually has a smile for the camera.

And, now, for the big surprise.....Rebekah is starting to sit on her own for a few brief seconds!!!!!! She has been doing very well sitting with me just giving a small amount of support, so I let her go to see what she would do. She actually sat for quite a few seconds, but by the time I grabbed the camera she flailed her arms out in a final balance before toppling. I'm so proud of our little fighter!

See, I can do it!!!!!

As far as all things medical, Rebekah is really about the same. She is having a bit more upper respiratory congestion (stuffy nose and sneezing) and more coughing today. Her lungs continue to sound excellent, though, so that is really good news.

I wish I could report that the diarrhea was getting better, but I can't. The GI doctors have run a host of tests, and unfortunately, most of them take days, not hours, for results. At the moment, Rebekah is not getting any breastmilk just in case the cause of her problems is a dairy protein allergy. I am still pumping and freezing the milk for use later. There is one more test that the doctors want to check and that one will be done on Monday. I don't know how long it will take to get the results back. All of these tests are checking for the amount of nutrients that Rebekah is absorbing. That will tell the doctors a lot about what is going on and how to treat it. Please pray for accurate results from all of this testing so that we know where to go from here.

Sitting up with the help of my toys!

That's the extent of the news from here. We're enjoying the beautiful sunshine after so many snowy/rainy/cloudy weekends in the last month or so.

Nancy

Another Day, Another Doctor!

Answers!!! We finally have answers!!! Well, we sort of have answers....maybe....at least a plan for finding some answers.....you get the idea. :)

Yesterday Rebekah ran a low-grade fever off and on all day. Her heart rate was consistently higher than her normal, and she continued to have explosive diarrhea....like a clothing and bed change every single time.

From a respiratory standpoint, Rebekah is much better. She has not had any more wheezing and almost no more coughing. If she has been crying a lot or agitated, she will cough, but for the most part, even that has stopped. The big question remained, though, why we can't keep Rebekah's oxygen sats up even on a liter of oxygen. And, no, we haven't been able to wean it down any. If it is turned down a little, we end up turning it back up to a liter within an hour or less. It appears that a liter of oxygen is just going to be Rebekah's new normal from now until her heart surgery. Her little body just can't seem to work without it.

Today our goal was to figure out what is causing Rebekah's GI problems. The c. diff was negative and the rotavirus was negative; that's a good thing! There are a few other things that are still being tested that will take a few days to come back. After meeting the GI doctor today, we are going to rework Rebekah's feeding plan. Again. The high-calorie formula that Rebekah is on may have proved to be too much for her system when on feeds around the clock. So, we are going back to nighttime-only continuous feeds. During the day, we are going to give the formula through the g-tube in thirty minutes (called a bolus feed) and then take Rebekah off the feeding pump for two and a half hours. This will be more like a bottle feeding and more like she is used to eating, without Rebekah having to expend the calories to drink from a bottle. We are also dropping the amount of calories that the formula contains so she doesn't get overloaded. If that goes well, we will add bottle feeding of breast milk back in gradually as she tolerates it. There is a possibility that Rebekah has developed a dairy protein allergy, but we really think she was just getting to much of a good thing with the high concentration of calories in the formula. The GI doctors visited the dairy allergy issue several months ago, but it turned out to be c. diff that time, so we were cleared. Personally, I don't think that is the issue this time, either. We'll wait and see how she does!

The doctors definitely want to keep Rebekah here in the hospital as long as she is still struggling with the diarrhea. They will be able to closely watch her to make sure she is not getting dehydrated. Once that clears up, we should be free to go as long as no other issues develop.

That's about all the news from here. Thank you for keeping Rebekah in our prayers and a special thanks to everyone who has helped out with the boys and with meals. You have no idea what a huge blessing that is to our family!

Nancy

Today is a new day!

Sorry I haven't updated earlier today! I know you are all wondering what is happening after the last updates last night. I didn't update because, frankly, we didn't have any news to update with! Rebekah remains off of her g-tube feeds, and we have really just been hanging out waiting to see her doctor.

Which brings us up to our doctor....he was just here a few minutes ago, and I think we have a new plan. Although, it is subject to change at any time, remember?! By the way, I know I have said it before, but we are truly blessed with some of the best doctors in the area! Dr. Darby walked in, sat down in the recliner and said "let's figure this out together." He is just as determined to come up with a solution to this problem as we are! We are so grateful for the doctors, residents, nurses and other staff here and for the way that they truly care for each patient. We have never felt like just another chart number or bed number. It is a great feeling especially when you have a child as medically complicated as Rebekah!

So, all of that to get to our new plan. It seems that Rebekah's problems are coming from either the g-tube itself or the Ellecare formula that we are using in the g-tube. Yes, she has c. diff. and is being treated for that, but Dr. Darby seems to think that if the c. diff. were bothering her digestive tract, then she would have the same reaction to breast milk going into her stomach by mouth as she has when Ellecare goes into her stomach through the g-tube. After a lot of discussion, we (Dr. Darby actually, I just nodded my head and agreed!) decided to switch things up a little to try to eliminate one or the other as a problem. So, unless the plan changes, Rebekah is going to get a little bit of Ellecare by mouth this afternoon to see what happens. She will also get a little bit of breast milk in her g-tube to see what happens there as well. If she tolerates the Ellecare by mouth, we can assume that the problems lie with her g-tube. If she tolerates the breast milk in the g-tube, we will assume that the problem is the Ellecare. If she tolerates both, I'm going to throw my hands in the air and scream! Okay, not really....maybe. Hopefully one of those trials will give us some information to come up with a solution we can work with.

Several weeks ago this would not have been too big of a deal because we were not using the g-tube prior to Rebekah's last hospital stay. However, since Dr. Darby put Rebekah on continuous nighttime feeding with the g-tube, she has gained a pound and a half. The continuous feeding was really working well and allowing Rebekah to grow faster than she ever has in her little life! We really need to find a solution that will allow us to use the g-tube with a higher calorie formula to get the extra nutrition to our little girl.

As I said, that is the current plan, and always subject to change. Dr. Darby is still going to consult with the GI (gastroenterology) doctors to see what other ideas they might have, so he may decide to do something differently after talking with them. I will update later to let everyone know how things are going!

Nancy

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