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

Save the Date!

Day 2!

I am happy to announce that we are having an uneventful morning in the PCICU this morning! Rebekah was taken off the ventilator around 2:00 this morning, and although she has a nasal cannula with a little oxygen, she is breathing on her own today. We are listening to the familiar beep, beep, beep of the monitors in the PCICU.

The view outside the hotel we are staying at. It is a beautiful fall morning today.

Since Rebekah is in the PCICU, the doctors took the opportunity to do a few other tests as well. This is Rebekah during her EKG yesterday. She slept right through it! You can't see the g-tube due to all of the leads, but it is on her left side about at the level of her belly button. It is clear and kind of rubbery feeling (almost like a pacifier or bottle nipple) and has a 8-10" IV catheter through the center of it. She has not started using it yet, but as soon as we are moved to the step-down unit, they will begin giving her some clear Pedialyte through the g-tube.

Speaking of step-down units, we are moving there just as soon as they have a bed available. We must have come at a peak time because the PCICU was completely full yesterday (the most we had seen previously was all but one bed full) and the step down unit is completely full today. As soon as someone is discharged, we will be moved to 7C and if all goes well, we could be discharged as early as tomorrow!

Rebekah during EKG.

Sleeping beauty. :)

This is a sign that is posted in front of the parking lot at our hotel near two very large trees:

Hmmm.....draw your own conclusions.......

That's it from the PCICU this morning. We are hoping to move to step down soon and have a very quiet, uneventful day. Of course, we will post anything new that happens and try to get some more pictures a little later when Rebekah is awake!

Nancy

Recovery

I am sitting here with Rebekah. She is doing great. She has woken up and has been little alert. We have one more vent setting to drop down to then we should be able to be off the ventilator. We may be able to be off and go to step down later today. Over all she is doing much better then expected. We Praise the Lord for his protective care of Rebekah.

D

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!

Bekah just left to go to the OR
D

Off to MUSC again

We are packing and getting tons of things settled today for Mom to be gone for a few weeks. We are heading back to MUSC to have the g-tube surgery tomorrow. We hope to get in this evening to try to get some rest. Then it's off to the hospital tomorrow at 6am for surgery. We will be updating everyone on the blog as the surgeons update us thru-out the day.

We appreicate all the prayers for our little Lady.

D

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

September Prayer Requests

We thought we would share some updated requests and needs. We have two big ones around here. One being I still do not have a permanent job. While the Lord has been gracious to provide for our needs with my heart felt gifts and some hours here and there on odd jobs we are still praying for some thing more stable.

Our other big request as always is Rebekah and her care. We are specifically praying for wisdom on making the best choices for her care. As you know if you have been following along Rebekah is looking to have a G-tube installed very shortly. We are praying that this surgery will go smoothly and that there will not be a lot of recovery time. We are praying for funds to come in so that we will be able to make at least 2 trips to MUSC to have this procedure done. We will mostly likely have a 2 day trip for a clinical visit and then a 2nd trip up to a week long stay to actually have the surgery.

We are praying for 2 things to come out of this surgery. One that Rebekah's reflux will be stopped so she is more comfortable and able to eat right. Two to help her to move forward with the right growth and weight gain.

Also like last time with the open heart surgery we are praying for all the details of child care and strength for the rest of the family.

Of course along with prayer requests I will mention some praises too. I am thankfully for all the hours and help Grammy and Grampy have given to taking care of the boys. I am also thankful that the boys are so flexible and go where ever we need them too. Most of all we Praise the Lord for caring for our family and guiding us each step of the way.

D

100!!

A few weeks ago, we went to a local park with a friend of ours who is a professional photographer. She took some beautiful photos of our family and Rebekah. Hop on over to her blog to see some of her work and check our family blog for pictures of the boys. Thanks for such great pictures, Rachel!!

I realized just as I was about to start this post that it will be the one-hundredth post on Rebekah's blog! It has been a short, yet long, journey to this point, and we are just at the beginning. We are so thankful for all the Lord has brought us through to this point and for all He will do in Rebekah's life.

We made the difficult decision this week to go ahead with the surgery to have a G-tube placed for Rebekah. In some ways, this is even harder for me than her heart surgery. I know that Rebekah needs her heart surgeries in order to live, but the G-tube is somewhat different. It will be closing the door on nursing Rebekah - something that I have always had as a goal once we got past her big heart surgery. It will also mean the end of bottle feeding as well, and I am so very torn about this. For some reason, I am really struggling with giving up feeding Rebekah in conventional ways. I know she will still be getting breastmilk and that the method of delivery isn't really important, but it is disappointing just the same.

The details aren't in place yet, and we will let you know when we know the dates for sure. It looks like we will be heading to Charleston in the next couple of weeks for a one-day pre-op of sorts. Rebekah will probably have another upper GI done and we will meet with the surgeon (or one of his assistants) to go over procedures and anything else that needs to be done. Then at that point they will be giving us a firm surgery date. It is possible that the surgeon will be able to place the G-tube laparoscopically which will be a much faster surgery and recovery time. Please pray that he will be able to do the surgery this way. If he can, we will probably only be in Charleston 2 or 3 days and then back home.

Rebekah has an appointment on Wednesday with BabyNet (a division of the No Child Left Behind act which services 0-3 year olds). The purpose of the appointment is to evaluate and assess Rebekah's strengths and weaknesses and determine which services she needs at this time. She has been a little slower to meet some of her developmental milestones, but nothing out of normal ranges yet. She may possibly qualify for up to 16 different categories (not all of them apply - they are just available if needed).

Miss Bekah is now weighing in at 7 pounds and 13 ounces. She made a 4 ounce weight gain in her last week. She is 21 and 1/2 inches long and some of her newborn outfits are starting to get a little snug. Her newborn clothes are adorable, but I must say after almost 10 weeks of being in this size, Mommy is ready for some new clothing options! :) I'm anxious for a little more hair so we can start accessorizing with hairbows and barrettes! :)

Rebekah has started to suck her thumb just a little bit. Usually she misses her mouth and pokes herself in the eye or nose or something, but a couple of times recently I have caught her getting her thumb in her mouth. It is so cute!!

Please keep Josiah and his family in your prayers this week. The doctors have decided that it is time to take him back to the OR this week for a surgery similar to the one Rebekah had to band his pulmonary artery.

That's about all the news for now. Enjoy the holiday weekend everyone! :)

Nancy

Sick Germies!

I was awakened (more than once!) in the night by Caleb who has spiked a fever hovering around 100.5. Not sure yet what he has or what is causing it, but he also doesn't want to eat anything. Please pray that whatever it is will not be spread to the rest of us and especially to Rebekah. We will be fighting the bugs and sterilizing everything around here!

Nancy