Baby Ewan

I have just learned tonight that a little heart buddy is in very critical condition. Baby Ewan (pronounced you-un) is just two weeks old today, and has already undergone multiple invasive procedures as a result of a congenital heart defect called Tetralogy of Fallot. In Ewan's case, the tetralogy is so severe the doctors were unsure they would be able to attempt repairing his heart. Two days ago, Ewan was taken off ECMO (heart and lung bypass machine) and was doing well. After several hours, it was obvious that his heart was working too hard and he was put back on life support. As of today, Ewan's parents (and doctors) are facing the tough decision of whether to try another life-saving procedure or let him go. Please pray for the Peterson family tonight - for peace, comfort and wisdom. And if you'd like to see some adorable pictures of Ewan and read more of his story, you can find him by clicking here.

It is always heart-wrenching when parents watch their children suffer, whatever the reason. But I think we share an unbreakable bond with parents of heart babies, no matter their race, beliefs, location or background. It is only by God's grace that we have not had to face a similar situation with Rebekah, and I cannot say with certainty that we won't. But I know that whatever we face in the future, whether the coming surgery, or years later, that God will give us the peace, grace and strength we need to trust Him.

It is on days like today that I am reminded that the therapies, doctor's visits, oxygen, feeding tube and everything else that we have with Rebekah are really nothing in light of the decisions and pain that others are facing. Those whose children are no longer here, or whose children are clinging to life in a hospital would give anything to have their children home, no matter what little inconveniences come with that. I am reminded of how blessed we have been and continue to be.

My heart is very heavy for James and Kirsten tonight. Please, please, uphold them in prayer, and feel free to add them to your prayer list in church tomorrow.

Nancy

Rebekah

Isn't she beautiful???!

Counting Down!

The days are flying fast, and we are trying to prepare ourselves for Rebekah's surgery that is right around the corner. She is scheduled for open heart surgery on November 3. This will be a complete truncus repair, and the surgery itself is anticipated to take 6-8 hours.

Dr. Scott Bradley, the head pediatric cardiothoracic surgeon at MUSC will be Rebekah's surgeon from now on. If you remember from last summer, Dr. Ty Hsia was Rebekah's first surgeon, but he was offered a position at a prestigious hospital in London several months ago, so he is no longer at MUSC.

I found this information online that pretty accurately sums up the extent of Rebekah's truncus repair.

The surgical repair of truncus arteriosus requires the use of heart-lung bypass machine support. It involves three major components:

• Separating the pulmonary arteries from the main truncus (the truncus will remain as the first part of the aorta);
• closure of the ventricular septal defect using a patch
• creating a connection between the right ventricle and the pulmonary arteries using a valved conduit, usually a homograft pulmonary artery.

The one glaring difference between this description and Rebekah's surgery is that Dr. Bradley is likely to remove Rebekah's right lung during surgery. We have discussed the possibility with several of Rebekah's doctors, and the general consensus is that at some point Rebekah's lung will, not might, become infected, and when, not if, that lung becomes infected, it will be very dangerous for Rebekah. In fact, Rebekah's pulmonologist used words like life-threatening infection, and certain emergency resection when I asked if it would be possible for Rebekah to keep her lung. Given that information, combined with Rebekah's cardiologist's opinion, lead us to believe that Dr. Bradley will be removing Rebekah's right lung.

How do we feel about all that? Well, obviously, it was not our first choice! :) But we feel very informed about this decision, and know that ultimately, Dr. Bradley will recommend what is best for Rebekah. There are three criteria that Dr. Bradley will consider during surgery. If any one of the three is not met, then he will remove the lung. Dr. Bradley's criteria are:

1) The lung tissue itself - is it healthy? We know that the lung itself is a good size, but Dr. Lucas told us that often the tissue is dying or decaying when there is no blood flow through the lung.

2) Is there adequate arterial supply? This is the amount of blood flowing to the lung tissue itself. It has nothing to do with blood flowing to the lung to receive oxygen.

3) Is there good (or any!) perfusion? This is the amount of blood flowing into the lung to receive oxygen to carry out to the body. Right now from all of the tests, the doctors are pretty sure that Rebekah has less than 2% perfusion in her right lung.

So, what else has been going on besides surgery talk? Well, Rebekah should be getting some new wheels near the end of October! We have been using our old stroller and pushing/pulling her oxygen tank along with it. To say that it is cumbersome is an unbelievable understatement! Rebekah's new chair/stroller will have an oxygen tank holder mounted on the side so that I can have a hand free for other things. It also has room underneath for Rebekah's O2 monitor if we were out for a long period of time and needed it with us. The seat is completely customizable and will grow with Rebekah. It is also a tilt-in-space seat, which means that the seat rotates from 90 to 180 degrees and stops anywhere in between.

Rebekah's new chair (teddy bear not included)! :)

We have had some fun days just hanging out at home and playing. Aaron and Caleb are very patient with Rebekah and usually let her in on whatever they are playing with.

Aaron and Rebekah

Pretty girl!

Aaron specifically requested this outfit a few days ago because he loves the bracelet that matches it. Guess we'll have to find a fall/winter outfit in these colors so Rebekah can still wear the bracelet. :)

Sweet little peanuts!

Rebekah all dressed up for church!

Something (someone) is missing here..........

Found her!

Rebekah has become more and more mobile lately. It is very unusual to find Rebekah where I left her now. She has become adept at scooting around the house and exploring all kinds of things. I literally "lost" her in the house and followed her tubing to look for her. I found Rebekah in my laundry room with the door closed. She was taking my clean laundry out of the laundry basket. Now if I can just teach her to fold it...... :)

I'm cute.....tubes and all!

I love my swing!!

Now that the weather has been (a little) cooler, we have enjoyed some time outside. We had not been able to take Rebekah out much in the hot summer because it is easy for her to become overheated. She really enjoyed being able to swing and play outside this weekend!

My newest skill!

It took me (or Rebekah) several hours to actually capture this picture. Rebekah has been doing this hand/feet position for a few days. Although she isn't doing more than holding the position for a few seconds, at least she is working at it. I can't say enough about how much the stander has helped strengthen Rebekah's muscles. She really wants to walk and run with her brothers, but is not strong enough yet. She gets an "A" for effort, though! Rebekah is one determined little girl! Just this week in pool therapy, Rebekah stood for almost 5 seconds by herself with no support! That was huge!!!

Rebekah and Uncle David

Thank you all for your continued prayers! We ask that you continue to pray specifically for our upcoming trip to Charleston and Rebekah's surgery. The doctors are estimating a 2-3 week hospital stay if things go well, so it will be a stressful time for all of us. The boys are taking it in stride, though, and we are so thankful for that!

Nancy

Standing.....Finally!!

We were so excited that Rebekah's stander finally arrived!! We picked it up on Friday and Rebekah has been in it several times this weekend.

After all of last week's appointments and running around, we are looking forward to a (hopefully) calm week. As of right now, Rebekah only has her regular therapy this week on Monday, Wednesday and Thursday. Yippeee!!!

Just me being cute!

Uh-oh! Look what I found!!

Since we moved into this house in 2006, Drew has taught each of the crawlers to master the stairs. Aaron was the first and Caleb had his lesson last year. Looks like it's almost Rebekah's turn for stair training!

Melanie and Rebekah in the pool

Rebekah had her pool therapy evaluation on Wednesday with Melanie. Rebekah and Melanie will be working on standing, sitting 90/90 (sitting on her bottom with her feet on the floor and balancing), squatting, standing from a sitting position, and balancing on hands and knees. Rebekah will be in the pool every other week on Wednesdays instead of her regular physical therapy. This week's pool therapy went well for the first thirty minutes.....until Melanie put Rebekah on her hands and knees. Rebekah let us all know how unhappy she was about that, and that was the end of pool therapy! Melanie has learned Rebekah's tricks; next week, hands and knees will be the last thing we work on at the end of the hour. :)

Rebekah in the stander watching her brothers play the Wii.

Look at me standing!

The stander is very heavy - much heavier than we were expecting! It is on wheels, so it is very easy to maneuver Rebekah around. There are brackets for Rebekah's feet and velcro straps to keep her feet in place. There is a pad for Rebekah's knees to fit into and velcro straps around her shins. The yellow bar around her back has a large pad on the front of it to hold Rebekah's bottom in place. Finally, the wide velcro strap goes around the middle of Rebekah's back to keep her from falling backward from the waist. There is also a head/neck support, but since Rebekah has good head and neck control, she does not need it. I will need to take the stander back on Wednesday for her therapist to fine tune a few areas, but overall it is working well. Rebekah is just on the edge of small for this stander, but it is the smallest one made. The pad for Rebekah's shins is just a bit big, so we may have to make some adjustments for it to fit Rebekah correctly. It also seems that Rebekah is not putting full weight on her feet; she seems to be resting/sitting more on the pad on her bottom. I would like DeAnn to take a look at Rebekah in the stander to make sure everything is positioned correctly.

The back of the stander.

Rebekah has been tolerating her stander quite well. Because of church today, we only had one session in the stander, but Rebekah stood for 30 minutes today in that one session. DeAnn would like to see Rebekah standing for 30 minutes twice a day by Wednesday when we go back for therapy. The long-term goal is three sessions a day for 45 minutes each time. I think in two or three weeks Rebekah will be able to do that, providing we don't have surgery in that time frame.

My awesomely cool, new sneakers - size 2!!

Rebekah and I spent a couple of hours on Saturday trying to find some appropriate sneakers for her standing. DeAnn requested that we get hard-soled sneakers with good arch support so her feet get the correct support. Has anyone tried shopping for that type of sneaker in a size 2?? Almost impossible!! We tried Stride Rite, Kid's Foot Locker, Journey Kidz, JCPenney, Gymboree, and Children's Place. The closest we came to finding what Rebekah needed was a size 3 at Stride Rite. We finally left the mall and went to Babies 'R Us and found exactly what we needed. And at less than half the price of Stride Rite! :)

I'm liking this new gadget!

Caleb, Aaron, and Rebekah

The boy are not about to be outdone in the picture-taking department! When I've gotten the camera out this week, they have been begging to have pictures with their sister. Of course, I quickly oblige!

Caleb and Rebekah

Does it count that they are just in the same vicinity at the same time? Rebekah kept trying to scoot toward the camera and Caleb kept chasing after her. I couldn't get Caleb to understand that if he sat still in one place, I could put Rebekah next to him and snap a quick picture. Out of a dozen or so, this is the best I got. :)

Excuse the bed-head; this was after my nap!!

Notice the blue-ish feet in the above picture? It's a look we're seeing a little more these days. This evening when we got home from church, we noticed the blue feet and "gills," as Drew likes to refer to the area around Rebekah's mouth. When we connected Rebekah's sat monitor, she was hanging out around 71-72 on 1/2 liter of oxygen. We bumped the oxygen up to 3/4 liter, but I am anticipating turning it down when we go to bed. Rebekah tends to have much higher sats while she is sleeping since her body is relaxed and her heart is not having to work as hard to pump the blood through her body. We'll see how she looks tomorrow when she is up and more active. Dr. Lucas had mentioned last week at Rebekah's appointment that if she needed as much as a full liter of oxygen, that he would not be comfortable with her being at home. I'm not sure how I feel about that. I agree that the potential for Rebekah to go into respiratory distress is greatly intensified by the amount of oxygen required to keep her stable, but I'm also cautious about going in to the hospital when she is not really "sick." I don't want her to pick up something else that we didn't go in with! Anyway, we're praying that Rebekah has her heart repair before we get to the point of needing a liter of oxygen!

I'm off to check on my little people and get into bed.....nights tend to be very short around here with the new school schedule. Thank you to all who have prayed for the boys as they started school. They both love their teachers and are making some new friends. The adjustment of getting back into a school schedule has really gone smoothly!

Nancy

It's Time!

Rebekah had her cardiology appointment this morning, and as we all expected, it is time for Rebekah's heart repair. I have very mixed feelings about it, but I now that we cannot put surgery off forever. There are a couple of reasons that Dr. Lucas felt were important in the decision to proceed with surgery now.

First is the obvious. Rebekah's oxygen saturations are dropping, and will continue to drop as the band gets tighter. With a lower baseline oxygen saturation, there is a higher risk for any little cold or airway distress to put her in the hospital in serious respiratory distress. I know it has been a while, but now is a great time for us to remind everyone - if you are sick, have been sick, or have been around someone who is sick, please love Rebekah from a distance!! We are trying to keep Rebekah healthy in the weeks leading up to her surgery.

Second, we are gearing up for the cold/flu/RSV season to start in another two months or so. The last thing Rebekah's doctors want to have happen is her surgery to fall in the middle of a season that is already going to be difficult for her.

The one surprise that caught Drew and I off guard is that Dr. Lucas mentioned that Dr. Bradley (the head of pediatric cardiothoracic surgery at MUSC) may recommend removing Rebekah's right lung. That was a bit of a shock for us, especially since other doctors had previously said that we should just leave it alone and let it function in a small capacity as it is right now. The potential removal would come if Dr. Bradley feels that there is so little blood flow to that lung that it would become highly susceptible to infections. Obviously, Rebekah has enough problems without having to worry about repeated, life-threatening pneumonia or infections in her weak lung. It is something that we will be praying about and talking with the doctors in Charleston about. Ideally, the surgeon will find that Rebekah's collateral arteries have grown and they will be able to restore function to her right lung, but medically speaking, that is not likely. As Dr. Lucas told us today, there are no limits on God, and we know that He is ultimately in control of Rebekah's surgery.

We should hear something from MUSC toward the end of this week or early next week about a surgery date. It looks as if it will be sometime in September, but we won't know for sure until we hear from MUSC. Until then, we continue to monitor Rebekah's oxygen levels and try to keep her germ-free! Please pray that all of the details come together for a two week (or longer!) stay in Charleston for Rebekah and I. We will continue to keep everyone updated when we have further information.

Nancy