Post-op Day 6

We are waiting for news on a bed upstairs for Rebekah! :) This means she will be going to the step-down unit, which is one step closer to going home. We are currently waiting on a bed to be available upstairs, and then we should be moving. Hopefully by lunch time! The only little catch in the plan is that Rebekah's temperature keeps climbing, and that could keep her in the PCICU if it gets higher. She had Tylenol around 9:45 this morning, so hopefully it will come down some.

Rebekah is still getting chest PT to try to open her left lung back up. This morning's x-ray showed the left lung about the same and a little more haziness (junk) in her right lung than was there yesterday. We are hoping that once we get upstairs and she feels like moving around a little more that she will be able to cough some of that up. We will continue the chest PT upstairs on the floor.

Daddy has been able to hold his little girl a few times now. He was able to hold her last night for quite a while and again this morning. Rebekah has been so relaxed when she is in her daddy's lap. It's good therapy for both of them! :)

Hopefully our next post will be from upstairs..... We'll see how the day progresses!

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

Our new digs!

As promised, new pictures!!! We actually didn't end up getting to hold Rebekah yesterday because some of her IV lines did not get removed until last night. By this morning, though, Rebekah was down to just a "normal" IV in her right foot in case the doctors need to administer fluids or medications through it. Currently this IV is not in use, and the nurse told us if it comes out, the doctors would probably not put another one back in. Rebekah also has a feeding tube in her nose, and today we are getting milk for an hour and a half, then off for an hour and a half. The goal is to get Rebekah's alloted amount of milk in just half an hour. Tomorrow we will be working on the bottle again. :) The rest of the wires you will see in the pictures are just monitors (heart monitor, blood pressure, oxygen, respirations).

First picture off the ventilator after surgery.

First attempt with a bottle!!

Rebekah's occupational therapist (OT) surprised us yesterday and tried a bottle with Rebekah. She drank 5 cc's of milk in about 15 minutes. Now, considering that 5 cc's is only about 1/3 of an ounce, she didn't get a lot, but we thought it was a great first try! Rebekah seemed to love the milk and didn't have any sucking or swallowing problems. Her biggest problem was that she just tired out. We will give it another try tomorrow. She has been sucking on her pacifier quite a bit today, especially when she is getting her feedings through her Ng tube. Tomorrow's feeding tube plan is for 1 hour on and 2 hours off. I have noticed this afternoon that Rebekah is starting to get a little fussy about 15 minutes before we start her next feeding. That is a good sign! She is starting to feel hungry which will help her learn to eat better. :)

Rebekah cuddled up to Mommy

Rebekah and Mommy

It has been a big change to move from PCICU to 7C. On the ICU floor, we were not able to pick Rebekah up, change her or anything else without the nurses' help. Here, we are encouraged to do anything we want to attempt with her! It has been nice to have a "normal" baby and do normal baby things. In the first two hours we were on this floor, Rebekah tested me out. She had two messy diapers, a very wet diaper, an outfit change and a severe case of hiccups! This girl is going to keep me busy!! Since then, she has had another messy diaper and had the hiccups two more times.

Daddy and his little girl

Rebekah's first outfit!!

Oh, yes! Another fun benefit to this floor is that we can finally dress Rebekah!! I'm planning to keep it to onsies for now since there is a good chance something will get spilled on, dripped on, etc, but it was fun to finally dress Rebekah. The little plastic boot type thing on her right foot is just to protect the IV the doctors put in.

First smile

Apparently, Rebekah enjoyed the move to step-down, because she gave me a few of these cute smiles this afternoon. Now, I know they are not really social smiles, but it's fun to see them anyway! :)

Along with our new room, we also have a new address! If you would like to send something, please address it to:

Rebekah Ellis

MUSC Children's Hospital Room #786

169 Ashley Avenue

Charleston, SC 29425

(843) 876-4786

Due to the heart monitors and oxygen in use on the floor, I am not able to use my cell phone in Rebekah's room. However, her room does have a phone that anyone can call to get in touch with me. The number above should dial directly to Rebekah's room. I do have wireless in the room, so I can check email also.

Nancy

P.S. This floor also has my favorite kind of crunchy ice!!! :)

Moving on up!!

Rebekah has gotten her traveling papers. She is moving out of the PCICU today. She and Nancy will be moving into a regular room in the Children's Hospital. They will have their own room and will be able to have the brothers come visit at some point.

I am heading home to take care of some things and to see the boys. Rebekah's next goal is to continue feeds by NG tube and eating from a bottle. Also she needs to gain some weight and then we will be able to bring all the ladies home.

We are so thankful the Lord has brought her this far.

D

Beginning of a good weekend

Rebekah had another great night. She is doing great at eating so far. We hope this continues. She had her first bottle this morning and did really well with it. They are compressing her feeds. Meaning that she is not being feed continually. Right now she is eating for 2 hours and off for an hour. By the end of the weekend she should be eating on a normal newborn schedule.

As soon as Dr. Bradley comes in, she is scheduled to have her lines removed. At this point it looks like Rebekah will go to step-down tomorrow as long as they have a bed open for her.

Just maybe when the lines come out we may have some pictures to post tonight of us holding her!!

We are very thankful that she is doing so well. We know that it is not by our efforts or Rebekah's but truly the Lord working in Rebekah's body.

Again thanks to all of you praying for the Little Lady and the phone calls to check up on us.

D