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