Still in the PCICU

Rebekah was all set and ready to move up to the floor today, but she is going to spend one more night in the PCICU tonight.  She is doing very well and could have easily moved, but they are out of space!  :)  There was another patient on the floor that should have been discharged, but it didn't happen tonight.  Rebekah will move up as soon as the other patient is discharged in the morning.

I believe there was another reason that Rebekah was kept in the PCICU tonight, and it doesn't have anything to do with her.  Because of staying in the PC, I was able to meet another family whose baby had surgery today.  He was brought back to the bed space right beside Rebekah.  We sort of had a mutual friend-of-a-friend circumstance that led me to start talking with them.  Anyway, I would love for you all to remember baby Jackson in your prayers tonight.  He had a long day of surgery today, and I know the family would appreciate your prayers.  His caring bridge site is http://www.caringbridge.org/visit/jacksonwyatt/journal.

Thank you all for praying!  We appreciate all of your prayers and encouragement!

Nancy

Update #7

This should be the final surgery update for this surgery!!!  Yippeee!!!  Dr. Bradley surprised us by coming into the waiting area before we got the text that he was finished.  It was a very nice surprise to see him!  :)

The first good news we had was that Dr. Bradley was smiling!  Those of you who know him in real life know what a good sign that is!  :)  He said he was very, very pleased with how things went, and that Rebekah tolerated everything well.  They did put her on the heart/lung bypass (ECMO) as we suspected, and they did replace her original conduit.  Dr. Bradley was able to put a little bit bigger conduit in than what she had before.  I believe she had a 10 or 12mm conduit before, and he replaced it with a 14mm.  So, not a big change, but one that he felt was necessary.

One surprise we had was that in the sedated echo right before surgery, the doctors noticed an area of enlarged muscle just under her conduit.  It could be that this area was also a contributing factor to the high pressure in her heart/lungs.  Anyway, Dr. Bradley was able to cut away some of that muscle to allow better blood flow and he removed some scar tissue around it.  The new conduit that Dr. Bradley put in actually has a human donor valve in it this time around.  Rebekah's previous conduit had a bovine valve.  He said there should not be any noticeable or medical difference to Rebekah with one valve versus the other.  I get the feeling that it is more of a decision of what they have on hand to use.

SO....the big question....YES!  Dr. Bradley was able to attach Rebekah's collateral artery to her pulmonary conduit.  He had to use an additional conduit (tube) to make the collateral stretch far enough to attach it.  Drew asked Dr. Bradley if that smaller tube/conduit would need to be replaced sooner than Rebekah would have otherwise needed her larger pulmonary conduit replaced.  Dr. Bradley just smiled and nodded a little bit and said, "It's likely."  We'll cross that bridge when we get to it.  For now we're thrilled that she will be able to have some use of her right lung!!!

So, all total Rebekah was in the OR about 10 hours, with somewhere between 8 and 9 hours of actual surgical time.  We know that she is back in the PCICU because all the other parents got kicked out when she started rolling.  (For those of you not familiar with PCICU procedures, when a case comes back from the OR, or when a new case comes into the PCICU for the first time, it is called "rolling."  As in the bed is "rolling" into the PCICU.  It is the only time that parents/visitors are not allowed in the PCICU.)  We were told that we could go in to see her around 5:00, so we have about 20 minutes or so until we can kiss her little cheeks.  :)

The plan is to take recovery very slow.  The doctors are going to monitor Rebekah's pain, breathing and heart rhythms for a few hours.  When they are sure she is stable, they will slowly allow her to start waking up.  From there it will just depend on how fast her body wakes up and recovers from surgery.  Dr. Bradley did do a lot during surgery today, so it will take a little while for her body to adjust.

Thank you all for praying for us and Rebekah today.  We are just so, so thankful that God worked through Dr. Bradley to help our little girl.  We are certainly blessed beyond all that we could ask or hope.

Nancy

Someone is having a birthday!

Believe it or not, Rebekah's first birthday is right around the corner!

In lieu of gifts, we are asking that donations be made to either of the following two organizations. The first is the PCICU at MUSC, where Rebekah spent time following her birth and surgeries. Rebekah will spend more time there through the years as she has further surgeries. The PCICU is an incredible place full of dedicated doctors and nurses. We love the PCICU!

The second organization is Annabelle Baskets. Baby Annabelle was born with Hypoplastic Left Heart Syndrome and lived just two short months before returning home to Heaven. Her sweet mom, Rebecca, wanted a way to carry on Annabelle's legacy and give hope to other parents of heart babies. The baskets contain a receiving blanket, an embroidered burp cloth, a small stuffed animal, a bow for girls or a hat for boys, and a pair of warm, fuzzy socks. Rebekah was a recipient of an Annabelle Basket, and it meant so much to us!

We would sincerely love to see each of you at Rebekah's birthday party. Please be sure to RSVP by June 12 as we need to provide the restaurant with a total number of attendees.

Nancy

PCICU for tonight

We have been in to see Rebekah in the PCICU. She was awake and cranky for a while. We were able to give her something to eat and some pain medicine. She is peacefully sleeping now. Due to the late hour of finishing in Cath lab and a shortage of beds Rebekah is staying the night in the PCICU.

We have a swallow study scheduled for sometime tomorrow and probably another night here in the hotel to give Rebekah some rest before we head home.

We do not have a lot of information as far as her heart at the moment. We were told all went really well and she did great. We also were informed that she is ready to move on to the next step in correcting her heart and other problems. We will most likely not have a lot of details until we meet with Dr. Lucas in about 2 weeks. At that time we will have a definite plan and schedule to surgery. My best guess is still on target for next month or so.

We are very thankfully that the Lord carried Rebekah thru today's procedures with no problems. Now time for Mom and Dad are heading to go get something to eat and crash at the Hotel for the night. We will pass on all of tomorrow's adventures when we get there.

D

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

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

Another good day for Rebekah

Rebekah had a great night. She has done well with all her C-pap tests. If she continues to do well today, they are talking of taking her off the vent this afternoon. She is a little more sleepy today, but that's what newborns due. Over all she is doing great.

The big weekly surgical meeting with her medical team is this evening. They will discuss all aspects of her heart problem and decide on a course of surgery and care. We will hopefully meet with the surgeons and doctors tomorrow to find out what they decide. We should also have a tentative surgery date by then.

Update on Mommy and Daddy - We had a great night of rest and are doing better today. Other then trying to hang on to all the information being thrown at us and really missing the boys, we are doing well.

I guess that's about it for now. We are enjoying sitting here and watching our little Blessing as she peacefully sleeps.

D