No Update Yet

No news from the OR yet (although they were scheduled to actually begin the surgery between 8:15 and 8:30).

We have, on the other hand, been through two tests of the fire alarm system. Talk about waking a person up!!

We will pass along any updates if we get them.

Nancy

Surgery Day

My Little Lady went to the OR at 7:45am. She has the best doctors one could ask for, but more importantly is that she is in the Great Physicians hands. The Lord will watch over her even though Daddy can't be there to hold her hand.

"Lord we pray that you guide the surgeons hands and we commit Rebekah to your care and will, in Jesus name I pray."

D

Happy One Week Birthday!

It's hard to believe that Rebekah has only been here for one week! In a lot of ways, it feels like weeks or even months since she was born. In other ways, it's amazing to think that she is already here when we weren't even planning on her arriving until the end of this week. She is definitely doing things her own way!

The results of the heart catherization today confirmed what the doctors have thought for the last week or more....Rebekah does not have an artery from her heart to her right lung. She does have several collaterals (small spaghetti-sized arteries leading off the left pulmonary artery to the right lung) that are too small to work with now, but the doctors are hopeful that in a few months they will grow. The plan is to use these collaterals, band them together and create a small pulmonary artery leading from the right side of Rebekah's heart to her right lung. She will never have "normal" function in her right lung, but she will hopefully have some use after the collaterals are reattached correctly.

Because of the situation with Rebekah's lung(s), her heart surgery is much more complicated. In fact, her surgeon, Dr. Hsia (pronounced Sha), has never seen anyone with Rebekah's physiology. There has never been a patient treated at MUSC with her physiology. Dr. Hsia had to call all the way to London (yes, as in London, England) in order to consult with a doctor who has even seen this type of heart/lung combination. The general consensus of Rebekah's doctors after much consultation and debate, is that completing Rebekah's heart surgery as we first discussed before finding out about her lung, will put too much pressure on her left lung. Putting that kind of instant pressure on her left lung could cause heart failure and potentially pulmonary hypertension (high blood pressure in her lung) that would be irreversible. Obviously, no one wants that to happen!

SO, what will happen? Rebekah will have open heart surgery tomorrow (Tuesday) morning at 8:00. The doctors will make an incision in her chest and through her sternum. They will put what amounts to a rubber band around the pulmonary artery branch that leads to her left lung. This band should limit the amount of blood flowing to that lung, allowing more blood to flow to her body. Right now, her lung is getting way too much blood flowing in to it. To allow that to continue would deprive her body of the necessary blood flow for Rebekah to grow and develop properly. At this time, the rubber band procedure is all that the doctors are planning for tomorrow's surgery. Rebekah should be able to recover much faster than she would from the original surgery.

Once Rebekah has recovered and has met her goals for discharge, we will be allowed to take her home! :) The actual amount of time it takes to be released will depend on how quickly Rebekah recovers and how quickly she learns to eat (could be a couple of weeks or several weeks). After we are home, Rebekah will be very carefully monitored by her cardiology team to make sure her heart is functioning in the way that they want it to. Rebekah will be allowed to grow for somewhere between 4 and 6 months (depending on how her heart and lungs are doing) and then we will return to Charleston for the "big" surgery.

The "big" surgery will be quite extensive - even more than we were planning on for her original Truncus surgery. She will have the collaterals grouped together and reattached to the right side of her heart to form a pulmonary artery to her right lung. She will have a conduit with a valve put into the right side of her heart leading to her left lung allowing only the blood that needs oxygen to flow to her left lung. And she will have the large hole (ventricle septal defect or VSD) between the two chambers of her heart closed. The good news about all of this surgery is that she will be significantly bigger in size and development. Her lung(s) will have several months of use to grow and develop more, and she won't have to learn to eat after surgery.

Overall, Drew and I are very satisfied with this decision. We feel that the doctors have made the most informed decision that they can possibly make, and we are very comfortable with that. Ultimately, we know that Rebekah's healing is in the Lord's hands, and we are trusting Him with Rebekah's heart. Thank you all so much for your prayers and encouragement. It has really been so encouraging to us.

We will post updates tomorrow as we get them, but we were warned tonight by Rebekah's nurse that things in the OR can get intense and a lot of times the nurses there forget to call with updates.

Nancy

Heart Cath.

They are taking Bekah up to the Cath Lab. right now.

Weekend Recap

What an eventful weekend! Sorry for the lack of posting; it wasn't because there was nothing new to post. We were simply trying to soak up every minute of our weekend before it was over. :)

Rebekah watching Daddy

We were excited about a very last-minute trip by Grampy and Grammy and the boys. We are learning that weekends around here are very slow (as far as medical things and people coming and going in the PCICU), so not only were we able to see the boys, but they were also able to see their sister for the first time!

Grampy and Grammy and Rebekah

The boys were so excited to meet their sister! Very technically, they were not supposed to be able to see her since the rule is age 12 and older, but since it was so quiet, the nurses let us bring them in - all at the same time even!!

Zachary said, "Having a sister is really cool!"

All the boys enjoyed meeting their sister. Justin and Zachary held her hands and checked out all of her lines, leads and equipment. Aaron and Caleb were content to watch her and talk to her. Caleb picked up Rebekah's still-unnamed puppy dog, gave it a hug, and tried to give it to Rebekah (actually, he dropped it on Rebekah, but we could tell what he meant).

There was a lot of giggling and silliness as all of the boys tried to outdo each other playing with their sister. Now they want to know how soon she will be coming home!

Medically speaking, Rebekah had a great weekend. It is hard to watch and anticipate what she will be going through the rest of this week because she is doing so well. Rebekah was able to remain vent-free all weekend, and she looked wonderful. Her heartrate, oxygen levels and breathing have been perfect all weekend. She was doing so well that the doctors started her on a small (very small) amount of milk in a feeding tube (the small orange tube in her nose). She was getting 3 cc's of milk every hour until midnight last night. (To put this in perspective, 15 cc's is roughly half an ounce. She is getting 1/5 of half an ounce once an hour. Very small amount!!)

As far as the plan for this week.....we're not really sure yet! We know that Rebekah is definitely on the schedule for surgery tomorrow morning around 8:00. We just don't know what surgery she will be having yet! :) Because of Rebekah's lung complication, the surgery to fix her heart is no longer a straightforward procedure. The heart catherization that she will undergo today will hopefully give the doctors a much clearer picture of what the best option is. There are several different possibilities, and each has risks and benefits. It appears that at least some of her doctors are leaning toward repairing only part of her heart now and doing another surgery in 4-6 months to finish the heart repair. The reason for this is to not put additional strain on Rebekah's only working lung. There is also a small possibility that there is still something the doctors will be able to do with Rebekah's right lung to give it some kind of function. These are all questions that we will (hopefully) have answered late this afternoon or evening after the doctors have met and discussed all of the test results.

For now, our plan today is to see our little girl as much as possible between all of her tests. She will be lightly sedated (she hates the ventilator tube!!), and with all of the extra equipment, we won't be able to hold her until after she recovers enough to be moved again. So we just plan to hang out and keep her company. Tomorrow we will be in the PCICU waiting area for a good part of the day while she is in surgery.

I will at least get a short post out tonight to update everyone on the plan for surgery tomorrow.

Nancy