Update: Rebekah is at Greenville Memorial with significant abdominal distress. She is also running a fever and having problems with her g-tube. Please pray.

News

Miss Rebekah has had a busy week! After her cardiology appointment on Tuesday, Rebekah saw her pediatrician on Wednesday. We discussed a variety of information.....feeding, development, Synagis shots and congestion.

Rebekah will be getting her Synagis shots every month at her pediatrician's office during RSV season. This series of shots is for protection against RSV, which is a cold virus that can cause severe complications in infants. The complications can be fatal in babies whose immune system, heart or lungs are already compromised. We are very thankful that Rebekah qualified for the shots and that she is able to get them at her pediatrician's office!

As for feeding, we are marching onward! Rebekah has been given the green light to begin solid foods. We are beginning with a teaspoon of rice cereal and will be working up to a tablespoon of cereal twice a day. We want to start slowly to make sure Rebekah's system will handle the addition of cereal. If Rebekah does well with the cereal, we will begin working in other foods in a couple of weeks. So far, the cereal has been going down well. We are continuing the nighttime feedings as well to help with Rebekah's calorie intake.

As far as development, Rebekah is moving right along! She is smiling, babbling, cooing and interacting with us, especially with her brothers. Rebekah is grasping toys, transferring toys between hands and bringing toys to her mouth. We are still working a lot on the physical development - rolling over, sitting up and holding her head stable consistently. We are thankful for our therapists and their work with Rebekah!

Rebekah is still struggling with some respiratory congestion. We suspect that Rebekah is teething, but the congestion is a problem either way. The congestion is not bad and does not seem to affect her breathing much, so we are just watching it for now. Hopefully it will clear up on its own without any intervention.

We also saw the pediatric surgery group here in Greenville this week so they could take a look at Rebekah's g-tube. We have had problems with the mic-key button that Rebekah has deflating every two to three weeks (it should be lasting 3 to 4 months), so we wanted a second opinion. The surgeon has ordered a new g-tube and it should be in sometime early next week. When it comes in, they will replace Rebekah's current tube with a slightly different one. The surgeon also ordered a different size tube than the one Rebekah currently has, so we are hopeful that it will be a better fit.

That's all the latest news for now. Rebekah has a week off with no scheduled appointments other than the g-tube replacement when it arrives. We are hoping for another good week and some more weight gain!!

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

So far, so good

We are now moving into Tuesday, and I am happy to report that Rebekah does not seem to be any worse than she was over the weekend. She still has an off-and-on-again low-grade fever, and she still has upper respiratory congestion, but it has not gotten any worse.

This afternoon we are headed to a cardiology check-up, followed by a visit to Rebekah's pediatrician tomorrow. Please pray for good results from those visits and improvement of Rebekah's cold symptoms!

Nancy

Marching into 2010

Update:

Rebekah is congested, but her lungs are clear at this time. For now, we watch her and wait to see if her little body can fight this cold off. If not, we'll most likely be back at the hospital for some oxygen and fluids. So far Rebekah has been resting well since we have gotten home. Please pray that she is able to fight this cold off before it becomes worse!

Original post:

We are off to again to the doctors. Rebekah is sick again and fighting a new cold. She has had a temp. for the last 2 days and seems to be very congested again. She was coughing and having a more labored time breathing this morning. So Mommy and Rebekah are off to the Doctor's to have her checked out. Hopefully this will not turn into another trip to the hospital this week. I will update you all when I hear from Nancy.

D