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

The Daily News

The good news is......there isn't much news to report! Rebekah had an eventful night, only because the doctors from cardiology and the doctors from pediatric surgery couldn't agree on a "safe" range for Rebekah's oxygen saturation levels. So for a while we were riding back and forth between going back on oxygen and staying off (just oxygen through a nasal cannula like she was on in the picture below, not back on the ventilator).

Rebekah on Tuesday morning after moving to the step-down unit.

So far, Rebekah has tolerated her feedings very well. As a matter of fact, when we met with Dr. Hebra, her g-tube surgeon, the two things he told us to most certainly expect were that Rebekah would not be eating by mouth for 3-4 weeks post-surgery and that she would not be able to burp. We have been "burping" her g-tube, which basically amounts to letting air out of her tummy. Rebekah has now had every feeding but one by mouth (and LOTS of milk at each feeding compared to what she had been eating before) and she has burped twice, once all on her own without me patting her back. So, no offense to anyone, but sometimes this little girl just has her own plans no matter what the doctors say! :)

Rebekah this morning in the step-down unit.

This just in......we are now packed and ready to leave!! Rebekah has been discharged and we should be home late this afternoon. We will be coming back in two weeks for a one-day clinic (like a doctor's appointment) for Dr. Hebra to check on Rebekah's Nissen and make sure all is going well.

Rebekah sends her love to you all!!

Nancy

Post-Op!

It's 10:45 and Rebekah's surgeon just came in to speak with us. The surgery went perfectly, and Dr. Hebra was very pleased. He was able to place the g-tube and do the Nissen procedure all laparoscopically, so she did not have to have the large incisions that could have happened. She just has six small (1/2 inch or less) incisions that will heal fairly quickly.

Rebekah is still on the ventilator and will be until she fully wakes up from the anesthesia. Based on her previous experience under anesthesia, we are expecting that it will take a while, but we are thankful she is doing so well.

We should be able to go in and see Rebekah in about a half hour. We will post some pictures and another update later on today. Thank you all for your comments on facebook and prayers. Rebekah is one very loved little girl!

Nancy

If you think of it, please keep Zachary in your prayers today as well. He was heading to the doctor this morning for a possible ear infection and almost certainly a sinus infection. Pray that he is well before Rebekah comes home and that no one else comes down with his sniffles!

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