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

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

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

Plan C, D, or maybe....Q!

What a difference a week makes! Last week we were excited about Rebekah's eating and saw a definite improvement in the amount she was taking at each feeding. Since this weekend, we have seen a significant difference as well.....just not in the right direction! Rebekah has been eating less at each feeding and has been very agitated during most of her feedings - a sign that appears to indicate that her reflux medications are not controlling her reflux adequately.

Yep! That's our sister! Justin and Aaron love to help take care of Rebekah.

Rebekah has also been more lethargic this week and has been sleeping more than she was last week. We decided to blame that on the less frequent doses of Lasix that Rebekah has been getting since last week's cardiologist visit. Rebekah's doctors today decided to go back to the original dose and frequency to see if that can get us back to where we were last week before we made the changes. Of course, it doesn't help at all when Rebekah spits up immediately following her medications!

Sleeping in spite of my brothers!

The official weight check numbers for this week were consistent....consistently low! In the previous week, Rebekah had only gained three ounces, and this week she decided to make a repeat performance. Rebekah gained three ounces this week to bring her up to seven pounds and three ounces. We didn't measure length today, but one or two of her little outfits are getting snug in the length, so she may be adding a little growth in that direction.

Silly monkeys!

In developmental news, Rebekah has started to smile just a little bit in response to Drew or I. It is fast and fleeting, so I haven't really been able to capture it on camera yet. I'm still trying, though! Rebekah is also getting better at holding her head up for a few seconds at a time. Because of her reflux, we haven't had much tummy time at all, but she does lift her head when Drew or I put her up to our shoulders.

Almost everyone! Caleb bailed out at the last minute. :)

We will have another weight check next Wednesday at our pediatrician's office. In the meantime, we are being referred to a gastroenterologist (GI doctor) to figure out what the next plan for feeding Rebekah will be. Some days it feels like we are swinging on a pendulum between good days and bad, plan A and plan Z, but it is comforting to know that God has a plan for Rebekah. He has had that plan since before she was born, before we even knew she existed. And we are so thankful for the doctors that He included in that plan to help us care for Rebekah. We have been blessed by a truly amazing team of doctors and medical personnel, and we are grateful for them!

Zachary bought this outfit for Rebekah. She looks so cute in it!

Please continue to keep Rebekah in your prayers in the next few weeks. The feeding tube is definitely on the table as an option again, and we are willing to pursue that option if it will be best for Rebekah. Please pray for wisdom for all of the doctors involved, for Drew and I as we care for Rebekah, and for Rebekah. Pray specifically for Rebekah that her tummy issues will be resolved and she will be able to grow as she needs to.

Thank you to everyone who continues to pray for our family and especially for Rebekah. We appreciate you all more than you know!

Nancy

P.S. Click on over to our family blog here for new pictures of the boys!

Check Up

This will be brief since we are experiencing some internet troubles. Rebekah's apointment went well today. She gained 5 ounces in the last five days!! Her pediatrician would have liked to see a little more weight gain just so she can make up for lost time, but in his words, we'll take what we can get. We are very thankful for the progress Rebekah has made with her eating. Continue to pray that her eating goes well and that we get some of her reflux issues more under control as that seems to be a big hinderance to her eating right now.

More detailed updates and pictures hopefully coming tomorrow!

Nancy

Big Surprises!!

Look closely.....Rebekah is missing her NG tube!!!!!! And, no, she did not pull it out herself this time! Rebekah's nurse took it out per doctor's orders. Rebekah has done so well bottle-feeding that she was given the okay to lose the feeding tube for today to see how she would do. Five bottles later, we are still tube-free!

Lookin' good!!

Also, Rebekah has been gaining a little bit of weight! She was six pounds and two and a half ounces at her weight check today. We are attempting nursing at some feedings, and by the last time today Rebekah had latched on and was sucking a bit. It will be a slow process to work up to nursing because it tires her out more. We are only trying every other feeding right now so Rebekah doesn't use all of her energy eating and not growing! As far as the reflux goes, Rebekah seems to be much more comfortable and having less episodes of reflux. She did spit up quite a bit at her noon feeding today, but that was the first time in two days. Hopefully between the medicines, the bottle feedings and the removal of the NG tube, her episodes of reflux will diminish.

Rebekah really enjoys the swing that her nurses brought in for her.

We are still optimistic that we will be home before Rebekah's one-month birthday. The doctors haven't made any firm promises, but things are looking good. For anyone who may have sent mail, we have been assured that anything that comes after we leave will be forwarded. We are looking forward to having some normal, boring days at home with all of our kids in the same place!

She's so talented!! :)

Rebekah would like to wish Uncle David a very happy birthday!!! Maybe next year we can celebrate together, but for now this is the best we can do!

Nancy

On the move again!

Rebekah now has a new room - and, no, it's not at our house! It would be nice, but she still has a ways to go before that happens.

Our former room (#786) was at the end of the hall farthest from the nurses station. When several patients on this floor were discharged yesterday and today, the nurses gave us the opportunity to move up closer. I think we are going to enjoy our new room! I especially like the new view from the window - I can actually see some of the city streets and part of the ocean! :)

So, our new room is #779. I have updated the side bar with the new address and phone number. No worries; if you already sent something, it will get to us. All of the nurses on the floor know Rebekah! :)

Rebekah did exceptionally well with her second bottle today. She drank 42 cc's of thickened, fortified breast milk from her bottle. Our feeding goal is 54 cc's, so she is well on her way toward that goal! Once she is able to drink 54 cc's at one time, we will work on adding more bottle feedings each day until she is completely drinking from a bottle. Rebekah did reflux and spit up some with the bottle, but not too much. We're still working on coming up with a plan that works well for Rebekah.

Have a good night, all! Thanks for the calls, emails and prayers.

Nancy

Due Date!!

Today was Rebekah's official due date! Obviously, she had other plans!! :) It is almost overwhelming to think about all that has happened in the last three weeks. We arrived in Charleston three weeks ago today, and what an adventure it has been!

I had a fun start to my morning today - I got to feed Rebekah a bottle for the first time!! She did very well and drank about 28 cc's. She did have some reflux and spit up some of her feeding, but the doctors and nurses are still very excited over her progress. In fact, one of her doctors (who had been leaning toward the feeding tube) told us this morning that he was very glad that Rebekah had another swallow study. The doctors did increase one of Rebekah's reflux medications in the hope that she will be more comfortable and not refluxing as much. Now we have to wait and see if Rebekah's digestive system will tolerate a full feeding over 30 minutes. According to Rebekah's speech therapist, Diane, if the feeding is longer than 30 minutes, then babies are burning more calories eating than they are taking in. Obviously that will not help her grow! So, the feeding tube possibility is still lingering out there. We are just going to give Rebekah every chance to bottle feed that we possibly can.

Rebekah has had her bath already this morning and is dressed in a cute yellow outfit with butterflies. Drew and I are going to try to get some pictures this afternoon after she's had some time to rest.

Happy Saturday!! :)

Nancy

Swallow Study

Just a quick update - When we got to the hospital at 9:00 this morning, Rebekah's nurse told us that her swallow study had been rescheduled to 1:30 today. We will update later with results (hopefully we will know sometime this afternoon what the doctors think about it!!).

Nancy

Thursday again!

Believe it or not, Rebekah is now 4 for 4 in the feeding tube department! Yesterday evening she pulled her feeding tube out again, so here is the daily picture with no tubes! :) I don't feel so bad this time - Rebekah's nurse actually had her hands on Rebekah and wasn't fast enough to stop her from pulling the tube out. At least it's not just me! :)

Our sweet little girl!

Rebekah is still scheduled for her swallow test tomorrow. She will be the first case, but we still have not heard what time that first case will be. Last night was a bit harder as Rebekah struggled with her reflux with almost every feed. At one point, her nurse had to come in and suction her because she was choking. The doctors are still not willing to commit for sure, but in our opinion, it looks like Rebekah will be coming home with a feeding tube. We'll wait to see what they say tomorrow!

Drew got here just in time to help with Rebekah's bath this morning! Rebekah had a busy morning with doctors, daddy coming, vital signs, a weight check and a bath!! Rebekah weighed 6 lbs. and half an ounce this morning. We are never quite positive about the weight since she still has some leads and monitors attached, but the good news is that at the very least she is remaining stable and not losing weight!

The doctors hope for Rebekah to have a good day today and spend time sleeping and growing. There has been talk of trying to compress her feeds to 45 minutes, but we are cautiously waiting to see if that happens or not. She seems to still be struggling with feeds over an hour; I can't imagine what she will do when she gets it in 45 minutes!

That's about all for now! We're off to find some lunch! :)

Nancy

Wednesday

Rebekah finally got her bath around 9:30 last night. She was not really pleased by our efforts to clean her up, either! :) It is so fun to see her whole tummy now that everything has been removed. The larger wound at the bottom of her incision is where the chest tube was, and the two smaller wounds on either side of that are where the pacemaker wires went into her heart. All of those are now gone until our next surgery!!

Rebekah was not appreciating bath time as much as Mommy was!

I actually was able to speak to Dr. Ringwold this morning about several questions we had. First, Rebekah's calcium looks great - the best it has ever been in her little life! They will recheck it again tomorrow (more for my peace of mind than anything) just to make sure that it is continuing to remain at acceptable levels. So for now it looks like she will not need a calcium supplement, although that could change and fluctuate throughout her life.

Now to discuss Rebekah's feeding......She is scheduled for a follow-up swallow test on Friday. We are not sure yet of the exact time. Dr. Ringwold was very honest with me this morning, and his feeling is that Rebekah will need to go home with a feeding tube. She has so many factors that she is working against in order to eat, and the goal for the next few months is growth. At this point, the doctors are more concerned with her growth than they are with how she is eating. So, given the fact that babies with DiGeorge syndrome are typically small and have a hard time growing, and the fact that our babies tend to be small anyway, and the fact that Rebekah is aspirating both her feeds and reflux, and the fact that she only has one truly working lung and doesn't need it infected from aspirations, and the fact that she is refluxing significantly and add to all of that the fact that she is a heart baby and recovering from open heart surgery, the doctors feel it is in her best interest to move ahead with the feeding tube. (Anyone want to diagram that sentence???? :)

All clean and cozy and ready for a nap

There has not been a final decision made yet, but it is likely that Rebekah will have surgery again by the beginning of next week to put a permanent feeding tube (called a G-tube) in her stomach. I won't give a lot of details now because there are several different options the doctors could choose with the feeding tube surgery, but we will be sure to let you know more information about it when we know for sure what is happening.

What we do know for sure is that most babies with DiGeorge do have a feeding tube for the first year or so of their lives. During that year, Rebekah will continue to receive OT so that when she is able to eat by mouth, she will have built up the muscle tone and coordination of everything involved in the eating process. Rebekah is also having trouble with her feedings compressed to one hour. About half of the way through the feeding, she becomes very agitated and cries a lot. It is likely that compressing the feeds over a shorter period of time is probably going to distress her even more. If Rebekah does have the G-tube put in, she will go home with a small pump that we will be able to put her milk into and we will be able to run it over a time that is comfortable for her.

Other than the feeding issue, Rebekah is having a great day! She is sleeping lots and looks so peaceful snuggled up with her blanket and teddy bear. :) Drew is probably coming back down tomorrow, and I know that Rebekah will be happy to have her Daddy back - and so will I!! :)

Nancy

Tuesday

Today has definitely been a day of ups and downs! After Rebekah's refluxing incident yesterday, the doctors felt it was in her best interest to do a swallow study and an upper GI. The results? Rebekah is aspirating both thin and thick liquids into her lungs. This rules out bottle feedings for right now, although she is scheduled for another swallow study on Friday. There is a time limit on how long a baby can be under the special machine that allows the doctors to see where the liquid goes when it is swallowed, and the doctors were not able to get a liquid thick enough during their time limit today. On Friday, they will start where they left off today to see if Rebekah will tolerate even thicker liquids. If so, we will thicken her milk and still be able to feed her a bottle. If not, we are looking at going home with a feeding tube for a few weeks or months until Rebekah's body is coordinated enough to not aspirate her feeds.

Isn't she cute???!!

We had actually been warned that aspirating is a common problem for heart babies simply because their body is trying to do so much at once. Rebekah has to breathe with one less lung than you and I, she has to pump blood to her heart and lungs with a heart that is not working correctly, and now we are asking her to suck and swallow at the same time and get it to the right place! The feeding will come; it just may take her body a little time to mature to the point of being able to coordinate all of those functions effortlessly. Until then, we will give her as much help as she needs to eat and grow.

Beautiful Bekah

The other test that was done today was an upper GI. Although it was no surprise to us, the doctors found that Rebekah has a significant amount of reflux. So, in addition to the Reglan and Zantac that were started yesterday to help with her reflux, Rebekah will also be taking Prevacid. I believe the doctors also increased her dosage and/or frequency of Zantac. In spite of all of the results, the doctors still wanted to go ahead with compressed feeds today. So we moved to one hour of feeding and two hours off. That worked great until the third time they tried it. Shortly after the feeding was done (like 5 minutes or less), Rebekah refluxed a small amount. I had just finished cleaning her up and cleaning up her bed when she spit up again, and this time it was everywhere. Head to toe, all over her bed and forceful enough to lose her feeding tube. Her day nurse, Heather, came and helped wipe Rebekah off, but we are waiting for the night nurses to come in and give Rebekah a bath and get her sheets changed.

Rebekah with no tubes!!

It seems that Rebekah is earning a reputation on this floor due to the number of times she has managed to lose her feeding tube in just two days. She managed to pull it out yesterday morning, again this morning, and then it came out again this evening when she spit up. It's kind of nice to see her whole face again, but getting that tube in is not a pleasant experience.

Please remember the Kiersey family in your prayers tonight. Their baby, Avery, whose button is on our side bar, has been having a very tough week. The doctors are out of options to try, and her parents have decided to not put her through any more procedures. They are planning to spend some time with Avery tonight and then remove her from life support. I know they would appreciate your prayers as they hold their little girl for the last time tonight.

Despite all of the ups and downs we have had, we are so thankful for how well Rebekah is doing.

Nancy

Backing Up

In everything, it seems like the norm is two steps forward and one step back, and Rebekah is no exception! The nurses and doctors were so excited and confident in Rebekah's feeding, so they skipped a step, so to speak, in compressing her feeds. Rebekah was quick to let them know what she thought about that! As soon as her feed went in, it came right back up! So, we are backing up to the step that we missed today. For the next 24 hours, Rebekah will be on 1 and 1/2 hour feeds with 1 and 1/2 hours off in between.

The doctors also strongly suspect (and I completely agree!) that Rebekah has reflux. Two of our four boys had it, and apparently it is part and parcel of having a heart baby. Right now, Rebekah has had one dose of Zantac and a dose of Reglan to combat the reflux. She is tentatively scheduled for a swallow study and upper GI tomorrow to see if the doctors can more accurately diagnose the reason for her reflux. Hopefully we will get the reflux under control so she can move ahead with her eating. For now, we are not going to continue the bottle feeding until we have the results of those tests.

Otherwise, Rebekah has had a great day - she has been sleeping most of the day, but was awake briefly to meet her first visitors. Our friends Steve and Judy Selby stopped by to see Rebekah, and then they took me out to lunch (read: NO cafeteria food!!). Thank you so much, Steve and Judy. I thoroughly enjoyed seeing you again!! :)

Rebekah and I have plans to get to bed early tonight. We're hoping that we get a little more sleep tonight than we did last night. Between Rebekah's monitors, feeding pumps, upset tummy and nurses checking her vital signs, neither one of us slept much. We're hoping that the tummy problems are more under control thus leading to less beeping of monitors and less frequent beeping of feeding pumps. The nurses - well, we can't do too much about them! :) I have to say, we have had some of the best medical care here that I have ever seen. We are so thankful for all of our nurses and doctors!

Hoping you have a restful night as well!

Nancy