A New Week!

I know it's small, but here's another picture of our sweet girl. :) If you look really closely (or click on the picture and make it larger), you can see she's wearing her pink pearls today with a pink bow in her hair. Cuteness!

Oh, if you look really closely, you can see Rebekah's "Jaxon's blankie" underneath Rebekah. We love the blanket that Jaxon's mom, Lacey, made for Rebekah. Congratulations, Lacey, on the homecoming of sweet little Arina!

Pretty in Pink!

Rebekah sailed through her CT scan this morning. Actually, she had no clue where she was or that anything was happening! You have no idea the production that it was to get Rebekah moved! Literally, it took us 30 minutes to get Rebekah ready for transport, transported, and settled for the CT scan. The scan itself was about 10 seconds. Literally. There were two doctors, two nurses, a nurse's assistant and a respiratory therapist who had to go with us. We were moving Rebekah in her crib, two IV poles with 2 brains each (that's the system that runs the IV pumps) and each brain has 4 pumps on it. Then we had 2 monitors to keep track of all her numbers, plus the oxygen and the 2 emergency airway bags in case she stopped breathing. Oh, and the whole time we were gone, the respiratory therapist was bagging Rebekah because the vent isn't portable. We barely managed to fit all of us in the elevator, and we took the largest elevator in the hospital. I took some pictures of the procession and will try to upload them when I get home. It was a sight to see!

Anyway, the end result of all that effort is that Rebekah's conduit is fine. There is no narrowing anywhere in the conduit that could be resulting in higher pressures. We were thrilled to hear that!! Dr. Bradley came by (very) early this morning and messed around with some of the probes monitoring Rebekah's pressures. Right now, the pressures are measuring much lower than they were yesterday, so we are waiting for an echo to accurately read the pressures and let us know if they are truly that low. It would be great if they were!

Rebekah's morphine drip was turned off about an hour ago, so she will be gradually waking up over the next few hours. The plan is to extubate sometime this afternoon. We're very hopeful that Rebekah will do well off the vent and will be able to keep her oxygen levels up where they need to be. That will certainly be a good test of how the pressures are going to do in her heart when she is having to do more work on her own.

That's all the news for now. Please continue to keep Rebekah in your prayers!

Nancy

Dr. Bradley

First, I have to apologize for the blurriness of the picture. My laptop needs a new hard drive, so it's not working. Drew's computer does not have any working USB ports, so between the two, we can't upload any pictures from our camera. I was able to get this picture from my phone and text it to blogger. That's why it's not such a great picture. But, I figured it's at least a picture for everyone to see! :)

Daniel & Kelsey - your bear is being put to good use! She's holding down Rebekah's legs! :)

Anyway, we finally were able to talk with Dr. Bradley this afternoon. He checks on Rebekah frequently, but we never know when he might come in, and we have happened to miss him each time he has been here. He is concerned about the high pressures in Rebekah's heart, and said that if left for a long period of time, it would "definitely take a toll on her heart." That being said, he agrees with what the cardiologists are already doing in waiting to get more fluid off to see if the pressures improve. (Which, by the way, Rebekah has been doing a great job today getting rid of fluids!!)

One thing that we were sort of misinformed about is Rebekah's conduit. Yesterday we had been told that the conduit was narrowing, which seemed a little odd to us. Today Dr. Bradley told us that it is not the conduit that is narrowing. It is either the area where the left pulmonary artery attaches to the conduit, or the area on the left pulmonary artery where Rebekah's band was that had to be patched. Either of these two areas could potentially narrow, but not the conduit itself. To get a good look at any potential narrowing, Rebekah will be having a CT angiogram done tomorrow morning at (roughly) 9:00. This will give Dr. Bradley a clearer picture of exactly what, if anything, has narrowed. If there has been any narrowing, a trip to the cath lab to place a stent and/or balloon the narrowed area should fix that problem. Dr. Bradley's hope is that Rebekah's heart can tolerate any potential narrowing for a few months so that she does not have to have another invasive procedure so soon after surgery.

The other (bigger) concern is the pressure in the right side of Rebekah's heart. Dr. Bradley did not specifically say one way or the other, but from his comments Drew and I both get the feeling that he is anticipating having to open (or partially open) the patch on Rebekah's VSD. This would be a full blown open heart surgery again. Again, Dr. Bradley is hoping Rebekah can tolerate the pressures for a few months before we have to go that route. Dr. Bradley's end goal is for Rebekah to tolerate the pressures for now, go home and recover, and in 3 months or so come back for another heart surgery to open her VSD. Of course, the possibility is great that once Rebekah starts weaning off the sedatives, her pressures will become higher than her heart can tolerate, even for a few months or weeks, and she has to return to the OR sooner than expected. This is just something we will have to watch and see what happens over the next few days.

As a whole, Dr. Bradley is very pleased with how Rebekah looks. Her lungs are doing well, although still "junky" from surgery, she is starting to breathe over the vent, and her oxygen and heart rate are stable. Dr. Bradley said if you don't look at the pressure numbers, you would never know by looking at her that her heart isn't "fixed."

Rebekah is now on the lowest ventilator setting, and she will begin CPAP trials tonight. That is when they stop giving her breaths on the ventilator and she has to take each of the breaths on her own. She will still be breathing in concentrated oxygen, but she will have to do all of the breathing on her own. As long as her numbers look good, they will CPAP her for an hour and then draw a blood gas to see how well her body responded to breathing on its own. As long as she tolerates it well, they will probably CPAP her three or so times through the night. Rebekah does have to remain on the vent for her CT scan in the morning, but she could be extubated tomorrow afternoon if she does well during her CPAP trials.

Overall it has been a nice, quiet day today and we are hoping for a quiet night. Thank you to everyone who has been praying for Rebekah this week. We love you!

Nancy

Not to leave you hanging....

Rebekah was not the one who had a procedure done this morning. It was her little buddy in the bed next to us. He had to have a chest tube inserted to drain some fluid off his lungs.

Rebekah looks very cute today. She has a purple bow in her hair and purple socks on and all of her little friends (stuffed animals) are hanging out in her crib with her. She has gotten so many comments on the big pink hippo that she got from our church before surgery. It is a little eye-catching! :)

We were able to talk with Dr. Graham just a few minutes ago, and he is planning to let Rebekah have another day of rest today. Yesterday there was talk of extubating Rebekah today, but that has been placed on hold until Rebekah gets rid of more fluid. This morning the doctors increased the amount of Diurel that Rebekah is getting, and she is still on the Bumex every 6 hours as well as the Bumex drip. We're hoping to see lots of output today!

Dr. Graham did favor reducing the amount of Rebekah's morphine today to allow her body to take over more work on its own. Right now, Rebekah is on a Precedex drip, a morphine drip and bolus morphine and versed combinations every six hours. That's a lot of sedation! He wants to gradually reduce the amount of morphine that Rebekah is getting and increase the Precedex if necessary. So, the Precedex will allow Rebekah's body to wake up without Rebekah being consciously awake, and that is the goal. Dr. Graham still wants Rebekah to sleep, but he wants her to start breathing more on her own. So far this morning, Rebekah is making an effort to breathe over the ventilator, and that is good news!

Rebekah did have an echocardiogram and chest x-rays early this morning. The echo still showed dysfunction in the right side of her heart, but Dr. Graham thought it looked a slight bit better than yesterday. Rebekah's lungs are very wet, again due to excess fluid, but that is another reason to keep her on the vent for today. There is no sense in making her body work even harder than it already will when we transition her off the vent.

That's about it for the morning update. As I have been sitting here, the diuretics are beginning to work a little, so that's good news! So far this morning Rebekah has a negative fluid balance, which is exactly what they want to see at the end of the day. (Negative fluid balance means that she peed out more fluid than she took in. That's what will get rid of the excess fluid.) Oh, Dr. Graham also said they will begin feeding Rebekah small amounts (of what, I have no idea) to see how her stomach can handle the food. Probably they will start with Pedialyte or Pediasure and go from there.

Thanks for praying for our sweet Rebekah Grace!!

Nancy

Friday

What a day! When we got to Rebekah's room this morning, we had a very nice surprise - she was no longer on the ventilator! We knew there was a possibility it might be removed this morning, but the doctors really didn't sound too positive about it. So we started the day off on a great note!

Rebekah off the vent and sleeping peacefully.

Sweet baby face

We are thinking Rebekah may have some sensitivity to the tape that is used to tape her lines down. That is why she has such red cheeks and a little sore on her upper lip. It is something that her nurses are aware of and we are watching.

Bekah holding Mommy's finger

Rebekah was a little fussy early this afternoon, so her nurse brought a pacifier and some sugar water. Bekah cannot have any "food" (milk/formula) until after her surgery, but she seemed to like sucking on the pacifier after it had been dipped in the sugar water. She smacked her lips and kept sticking her little tongue out. It was really cute! :)

Rebekah loved her pacifier!

And for the grand finale today, we were able to hold Rebekah for the first time in her little life! The nurses had checked with the doctor earlier in the day but didn't tell us about the possibility just in case the doctor said no. Since Rebekah wasn't on the ventilator and since she lost her arterial line overnight (the IV that was in her left arm), we were able to hold her with only minor adjustments for her equipment. We were a little bummed that she lost the arterial line, but it was great to be able to hold her all afternoon. The doctors will place another line before her heart catherization on Monday.

Daddy waited a long time to hold his little girl!

Mommy was pretty excited to hold Rebekah, too!

All in all, today was probably the best day we have had. We are expecting some more up and down days coming up, especially next week when Rebekah has heart surgery, but we enjoyed today very much!

Nancy

Independence

We had a nice surprise today when we came in to see Rebekah. She was fully awake and ready to play with one extra. Rebekah has earned her independence from the vent for a few days. She is doing well. At the moment she is crying and telling Mommy all about her troubles.

D

Wednesday Morning Update

Just a quick note to update you a little more. We spoke to Rebekah's nurse on the phone a few minutes ago, and it seems that Rebekah had a much better night! She is much more alert this morning and has already given her nurse some scowls as she had her diaper changed. :)

We are headed down to see her shortly and hopefully will get some more cute baby pics!

Nancy

Wednesday Morning

Good morning!! We are learning quickly that Rebekah Grace has her own schedule and her own way of doing things. Daddy and Mommy just need to get with the program and figure it out!! :)

Rebekah was doing very well yesterday morning on the ventilator - too well, in fact! She was breathing over the vent more than double the lowest setting that they could put it on and she built up some excess carbon dioxide in her lungs and then quit breathing - again.

The doctors had been waiting on results from Rebekah's CT-scan to determine whether or not they could take her off the medication that made her forget to breathe. They had those results early yesterday afternoon and made the determination that they could indeed stop giving Rebekah the medication, although not for the reason we had hoped. The concern had been finding the artery that supplied blood from Rebekah's heart to her right lung, and we now know that the doctors could not find it because it does not exist. Rebekah's right lung is receiving adequate blood flow to grow and develop from various small veins and capillaries, but her right lung will have no functional value in her body. There is no way for the heart to pump un-oxygenated blood into that lung for it to receive oxygen, and there is no medical way for the doctors to create an artificial artery for that lung. The doctors believe that her left lung will probably grow larger (than in a normal child) as Rebekah grows to compensate for the loss of her right lung. Rebekah should not have any noticeable side effects from functioning on one lung other than possibly getting winded a little easier than her peers.

Rebekah with just a nasal cannula after coming off the vent.

She was trying to open her eyes a little bit. :)

Daddy and daughter....he's wrapped around her little finger!

Rebekah Tuesday night. Yes, she's back on the vent.

So, the doctors took the vent out early Tuesday afternoon and were hopeful that Rebekah would do well. She did quite well for a while, but then had 3 episodes of forgetting to breathe. The third one actually took her a while to bounce back from and the respiratory therapist had to work to stabilize her breathing again. So late yesterday afternoon we all felt it was in Rebekah's best interest to re-intubate her and allow her body to rest through the night. The doctors still feel that the apnea episodes are due to the medication remaining in her body and believe that once the medicine completely clears her system that she will not have any more breathing problems. Thankfully, they did not have any trouble getting the vent in this time (she has a small airway and it is positioned a little differently than in most babies) and she was doing well when we left her last night.

There are a couple of other possibilities to explain Rebekah's apnea episodes. One is that she could have had some bleeding in or on her brain, but the doctors have completely ruled that out. Any type of bleeding on her brain would have shown up in her CT scan yesterday. We are very thankful that we can rule out that cause! The other possibility is that Rebekah could have some kind of infection which might cause her to be extra sleepy and have apnea spells. Her nurse sent blood and urine cultures to the lab last night to check for that possibility, and the doctors have put her on a general antibiotic just as a precautionary measure. The results from the cultures will come back tomorrow and the doctors will either discontinue the antibiotics if there is no infection or switch her to a more effective antibiotic when they determine exactly what type of infection she might have.

As far as a date for Rebekah's surgery, we are not sure yet. Unless some type of emergency situation that we are not anticipating comes up, the surgeons are leaning toward doing the surgery sometime early next week. All of her doctors and surgeons will be having a meeting tomorrow and we may know something more then.

For today, our big prayer request is that Rebekah will stabilize her breathing on her own so that she will not have to be on the ventilator any longer than necessary. Obviously, she will be back on it during and after surgery, but her lungs need the practice of working on their own as much as possible.

We will be posting more updates and information as we get it. Thank you for all of your prayers, comments and emails!! It is so encouraging to know how many people are praying for Rebekah!

Nancy