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

Cardiology Update

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

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

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

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

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

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

Nancy

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

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

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

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