Sleep Updates

Wow! I can't believe it's been a few weeks since I've last updated!  Time flies when you're having fun (or when you're just really, really busy!).  Last Wednesday, Dr. G finally called to give us the report of Rebekah's most recent sleep study.  

Dr. G started the phone call by saying, "I'm not really sure what to tell you because Rebekah did not respond to anything like I thought she would."  Yikes!  We have a really complicated little girl!

 Cute little sweetheart!

So the CPAP trial was a complete failure.  From what I could tell, Rebekah was hyperventilating because of the pressure of the air blowing in her face.  She was absolutely terrified because she couldn't exhale.  Once they switched Rebekah to a BiPAP, she did relax and was able to rest better.  *Translation:  She slept in 15-20 minute intervals over the next 5 hours.*  Finally around 5am they took off the "elephant" mask and put her on a nasal cannula for the remaining two hours of the study.  Finally, we were able to get more than 15 minutes of sleep at a time!  :)

Bekah loved playing in the rain the other day.

So the final results of the sleep study are....inconclusive.  Rebekah had absolutely no apnea events on the BiPAP, which is great!  However, her oxygen was very unstable and she had multiple episodes of desatting, which disrupted her sleep.  On the flip side, Rebekah did well on the high-flow oxygen setting at 2 liters per minute (LPM), and her oxygen level remained at 98% for the entire time.  She had no obstructive apnea events, although she did have an average of 10 central apnea events an hour, the longest being 16 seconds.  So the big question is which is better, the BiPAP or high-flow oxygen?!  (And for the record, I asked about combining the two.  It's a no-go.  The pressure would be too great, according to Dr. G).

 We've been enjoying warm weather and outside playtime!

Dr. G was very confused and puzzled by Rebekah's results.  Based on Rebekah's central events in the first sleep study, he was fairly confident that Rebekah's central events were caused by a drop in her carbon dioxide (CO2) levels.  However, when he put Rebekah on the high-flow cannula, her oxygen levels and CO2 levels both went up to the normal range, and the central events continued to occur.  Now he is not at all sure why the central events are occurring.

After a 30 minute discussion on the pros and cons of both options, we decided to continue with just the nasal cannula for now, but increase Rebekah's rate to 2LPM.  She has tolerated it well, although she does seem to be fairly restless at night still.  We are going to wait until we have the results of Rebekah's MRI, which is scheduled for March 28, and go from there.  It is possible that there could by a physical abnormality in the shape or structure of her skull that is putting pressure on areas that are causing her central apnea.  We certainly hope this isn't the case, but it is possible.  After the MRI, we will be better able to make decisions about where to go with Rebekah's apnea treatment.

Mommy, I stuck!

So that's pretty much the sleep updates for now.  Treatment for sleep apnea is certainly not a sprint! It's a full on marathon, and we are trying to be patient as we see what works and what doesn't work for our little sweetheart.  We would certainly appreciate your prayers for the upcoming MRI.  It will be done at the hospital in Greenville, and Rebekah will be sedated and intubated.  The good news is that it will be a light sedation, so Rebekah should wake up within a few minutes of the procedure.  We are praying for a good, clear scan that will show any areas that could be potential problems.

Hopefully in the next day or two I will be able to update about Rebekah's vocal chord scope.  I thought about adding it in with this post, but it deserves a post all on it's own.  As I said before, Rebekah is one complicated little girl!  :)

Nancy

A Big Scare!

Let me preface this by saying that Rebekah is fine, thanks to the wonderful medical equipment that we have been blessed with.

This evening we put Rebekah in bed around 7:30.  She was tired, but that is usually the case at bedtime.  We've been keeping her up in the afternoons instead of letting her take a nap.  It has worked really well, and she is actually tired at bedtime instead of playing in her bed for 2 or 3 hours after bedtime.  Rebekah seemed fine all day, and she rolled over and went to sleep almost immediately.

Drew and I were downstairs almost an hour later when Rebekah's sat monitor alarmed.  Drew went up to check on Rebekah, and we both assumed that she had just pulled the probe off, or that she had gotten twisted in the cord and it was loose.  When Drew called me to come upstairs just a minute later, I knew that the probe hadn't come off.

When I got upstairs, Rebekah's oxygen sats were 81% (she is normally 95%-100%).  As we stood there for a minute, she dropped to 80%, and then to 79%.  I started turning her oxygen up (it is normally at 1/2 liter when she sleeps), and I got up to 1 and 1/2 liters when her sats dropped again to 72%.

Drew had rolled Rebekah over onto her back and started shaking her to wake her up.  She was either very deeply asleep or unresponsive.  Either way, he couldn't wake her up.  He then sat her up and started lightly patting her cheeks.  Finally she woke up and her sats popped right back up to 100%.  The whole episode only lasted about five minutes, but it felt like we were watching time in slow motion.

After Rebekah's sats came back up, we let her roll over and go back to sleep.  We watched for a few minutes, and she seemed to be fine.  We will definitely be sleeping light tonight, and I plan to call cardiology first thing in the morning to let them know what happened.  This episode seems to confirm for us the need to have Rebekah evaluated by the sleep doctor.  Hopefully sooner rather than later!  I do plan on calling the after hours cardiology number if this happens again tonight.  Have any of you heart moms had something like this happen with your kiddos?

We thank you so much for your prayers.  This just reminds me that even when we think Rebekah is doing well, she is still a heart baby and always will be.  Really, there is never a time that we can relax and say she's out of the woods and doing fine.  Praise the Lord that we have medical technology available to us that can literally help to save Rebekah's life.

Nancy

Sunday

Today really was a day of rest!  Other than a chest x-ray this morning, Rebekah's day was very low-key.  Dr. Bradley came by this morning, and said that last night's x-ray showed some improvement, so at least we are on the right track!  Rebekah will have another x-ray sometime tomorrow, and we are hoping that it will be much improved.  Rebekah was up a lot today.  In fact, she was really in her bed only for naps today.  She wasn't walking around as much today, but she was sitting up in a chair, or on our laps, or on the floor playing and coloring a good bit of today.

Pain control continues to be an issue for Rebekah.  She is fine and wants to get up and play as long as she has good pain coverage.  But, when the pain meds start to wear off, she has cries and whimpers, even in her sleep.  We are trying very hard to keep her pain under control without medicating her so much that she sleeps all day.

We really struggled with Rebekah wanting something to drink today.  She just doesn't understand why she can't have a sip of water, or juice, or milk.  It is so hard to try to distract her or get her to accept another choice.  I had Rebekah's nurse call the speech pathologist this afternoon to check with her to see if Rebekah could have a milkshake.  My reasoning is that it is as thick as the yogurt/pudding/applesauce/ice cream consistency that has been approved for Rebekah to eat.  Thankfully the speech path. agreed and we were able to get a milkshake for Rebekah to drink.  I think it just made her feel better to have something wet in her mouth.  Rebekah actually ate very well today.  She had an entire serving of mandarin oranges for lunch along with a few green peas and the milkshake.  For dinner she ate a large (for her) portion of my salad.

After the discouraging news yesterday about Rebekah's vocal cords, we had some really, really good news today.  Rebekah has been OFF her oxygen for about five hours today, and has kept her sats above 90%!!!  We hadn't really let ourselves hope that Rebekah would go home without oxygen, but it looks like that might be a very real possibility!  Before surgery, Rebekah had absolutely perfect sats (between 98-100%) without oxygen.  After surgery, she has been from about 85-100%.  Some of the lower sats could be attributed to the fluid still remaining on her lungs.  However, Dr. Bradley thinks that possibly the re-routing of the blood flow through her lungs may have lowered her sats just a bit.  He is fine with her sats being above 90%, and she has kept them up so far today since the oxygen was turned off.  We'll continue to monitor the sats in the hospital, and then occasionally for a few weeks after we get home to make sure things are still where they need to be.

So tomorrow morning, sometime around 9:00, Rebekah will have her swallow study.  They will be giving her different consistencies of food and beverages to see if she aspirates any of them into her lungs.  The food should not be a problem, but there is some concern that she is aspirating thin liquids.  We would certainly appreciate your prayers for the swallow study tomorrow!

Nancy

Catching Up

Wow, where does the time go??! It seems like I just updated the blog a few days ago, yet it's been two weeks since the last update! I guess there is quite a bit to fill you in on since the last update.....

Justin and Bekah sharing some hugs.

He love his little sister!

Rebekah was able to see her endocrinologist for the appointment we missed due to the snowstorm. I always dread those appointments because it means labs, and that means a bad day for Rebekah and a few lab technicians. This time, though, the lab tech was able to get blood on the second try! Dr. Amrhein is primarily checking Rebekah's calcium and phosphorus levels because of her DiGeorge Syndrome. Her calcium is great, but the last couple of labs have shown that Rebekah's phosphorus is just a bit on the high side. That can be a side effect of something really bad (like kidney failure), but in Rebekah's case, it is probably completely normal. She is still on diuretics to keep fluid off her lungs and heart, and that can cause mild elevation of phosphorus levels. Also, the DiGeorge Syndrome itself can indirectly cause high phosphorus levels since DiGeorge affects the parathyroid, which in turns affects (elevates) phosphorus levels. Bet you didn't know all that, huh?! Anyway, it is something to have checked every six months or so, but nothing to be concerned about as long as Rebekah's levels stay where they are or drop. If they start trending higher, the doctors may take a look at a few other possibilities, but we don't really think that's going to be a problem.

Zac and Rebekah. This boy will do just about anything for his sister....

except touch her bracelets and necklaces! :)

See how badly the oxygen cannula is irritating her skin?

Rebekah has had a time with her oxygen lately, and not in a good way! She has outgrown the infant cannula that she was using prior to her heart surgery, so she is now using a pediatric cannula. That's not a bad thing as far as air flow, but it's thicker and less flexible, and much harder to work with. We were able to fasten Rebekah's infant cannula with a single steri-strip on each side of her face, but that doesn't hold the pediatric cannula. We have tried a few kinds of tape, some larger steri-strips, and just tightening the tubing in the back so it couldn't slide out of place. Each of those methods left it's mark on Rebekah's face. She is so super sensitive to adhesives that no matter what we try, her face ends up with large red irritated areas. When we tightened the tubing in the back and used no adhesives, she wound up with raw sores on her cheeks where the tubing touched her skin. Fortunately, Andrea (Owen's mom) came to the rescue!! Thank you a million times over, Andrea!! Owen has these nifty little contraptions called Tender Grips (you can check them out by clicking here) to hold his cannula in place. The flesh-colored part sticks directly to the skin with a very mild adhesive, and the tubing is actually sandwiched between a clear sticky part and the flesh-colored part. No more tubing rubbing against Rebekah's cheeks! It was a very long, round-about procedure to get these pads, and I'll not bore you with the details. We finally got them delivered today, and so far, so good! I'll report after we've used them for a couple of weeks and let you know the final verdict! :)

Aaron can't be left out of his hugs from Bekah.

I have no idea why she was so serious in all of these pictures!

So all of that has been going on with Rebekah's oxygen, and then last night she had her first accident. :( Rebekah has been doing so well at pulling up on almost everything, including the kitchen cabinets. She was playing with my kitchen towels that normally hang on my oven door, and they were laying in the floor when she decided to pull up on the cabinets. You guessed it....her foot was on the towel, not on the floor when she pulled up, and she fell face-first onto our very hard kitchen floor. The cannula was pushed up her nose and she had the worst nose-bleed that I have ever experienced with any of our children. In just the few seconds from when Drew picked her up till I had wet washcloths to clean her up, her mouth was full of blood and it was dripping off her chin. It was pretty bad. All of her teeth appear to be intact, though, so we are very thankful for that! Understandably, we left the cannula off for the night and a good portion of the day. Rebekah does not need the oxygen to keep her sats up like she did prior to surgery, so it was not a risk to her medically to not have the oxygen. We felt like her poor little nose needed a break after that injury. We did put the cannula back on this evening, and she was fine with it. Leaving it off was probably more for Mommy's peace of mind than from any discomfort Rebekah had! :)

Uh oh....you caught me with my brother's toy!

The other thing we have started experiencing with Rebekah's oxygen in the last week or so is nose bleeds. Well, ones that aren't caused by injury! When Rebekah saw her pulmonologist last week, I mentioned that to her, and she asked me if Rebekah had a humidifier for her oxygen. I replied that no, it had never been offered or suggested to us. Dr. Gwinn immediately responded that we should leave it to her, and that afternoon our home health company called about fitting our concentrators with humidifiers! So Rebekah is getting nice moist air that will help her nose to not get so dried out. We are hoping that reduces, if not eliminates, those pesky nose bleeds!

I can't decide which is my favorite time of day...

breakfast, lunch, or dinner!

Rebekah had her appointment on Monday with the orthopedist. He did a quick check of Rebekah's hips and joints, then ordered a set of x-rays of her hips. The good news is....there is nothing wrong with the development of Rebekah's hips!! He didn't really have a great explanation for why Rebekah is far stronger on her right side than her left, but said it isn't due to anything structural. His advice was to continue therapy and come back to see him if Rebekah isn't walking by her birthday. Something tells me we won't need to go back to see him! :)

I redecorate Mommy's bathrooms in my spare time! :)

Rebekah is truly getting around the house at lightning speed now! She has effectively learned how to go up and down the stairs, so I am never quite sure when I walk out of the room where I will find her. It's a great problem to have, though! Rebekah is quite adventurous, and I have found her in bathrooms, in kitchen cabinets, in the laundry room, and in closets. At least she is great at entertaining herself! :) Oh, and Rebekah got stuck at the scene of the crime in the above picture. After she finished her redecorating, she sat on the little stool, but her feet got stuck because she still had shoes on (normally she can get on and off the stool by herself). She had to call "Mama" to come bail her out!

Miss Priss (as DeeAnn calls her) walking in therapy.

Rebekah is really progressing unbelievably fast in therapy now. I wondered for a while after surgery if we would ever see the "take-off" that so many people described to us after their children had heart surgery. It has taken a few weeks, but we are finally there! The Care Center loaned us a little walker (similar to the one above, but smaller) to use with Rebekah at home, and she is zipping all over the downstairs in it. She will even crawl to it and use it to walk! The big break-through came today when DeeAnn (physical therapist) had Rebekah sitting on a small stool and standing. Not only did Rebekah stand with little to no assistance from DeeAnn, she followed that up with walking about four or five steps by herself! And then she repeated the performance about half a dozen more times! I'm kicking myself for not having the camera in therapy today. I will get it on video soon, though, because when Drew got home tonight, she walked a few steps in between us. I really think that Rebekah will be walking more and more in the next few weeks as long as she doesn't have another hospitalization.

Baby Blake (one of our friends) came to visit.

Rebekah found his pacifier highly entertaining!

Several months ago when Rebekah had speech therapy, her therapist and I decided to put any further speech therapy on hold until after her Truncus repair. Since she is now almost three months post-surgery, Victoria decided to re-evaluate Rebekah's need for speech therapy. I knew that Rebekah had a pretty decent vocabulary (counting both voiced and signed words), but it amazed me as I listed what I could remember. Rebekah says or signs (or both!) over 30 words! When Caleb was Rebekah's age (she will be 19 months on Saturday), he couldn't even say 5 semi-recognizable words. I know that's not a terribly accurate comparison since Caleb had a moderate speech delay, but still - wow! The long and short of our conversation is that Rebekah scored exactly within the normal range for speech and does not meet the qualifications for speech therapy!! What a blessing! Not only the blessing that we don't need to add another therapy right now, but I am so thankful that Rebekah's speech is exactly where any other "normal" 19 month old should be! We have heard for the last year and a half from Rebekah's geneticist that she will have speech delays, articulation disorders, nasal speech, etc. and will definitely need therapy, so this was just a huge blessing for us! There is a possibility in the future that we will see some articulation problems as Rebekah begins to say more words and sounds, but for now we are rejoicing that she is exactly where she needs to be!

Rebekah loved Blake's pacifier. Seriously. If I had let her keep it,

she would have never taken it out of her mouth.

Sorry, girl! Not about to fight that battle now!

The other appointment we had this week was to Rebekah's ophthalmologist. We have been checking the ptosis (drooping) in Rebekah's right eye for almost a year now. Thankfully, it has not gotten any worse, so for the time being we are going to continue to watch it. There is still the possibility of glasses or patching in the future, but as long as their is no progression of the ptosis, it is going to be a wait-and-see game. I'm thankful, once again, for a good report! We will see Dr. Johnson back again in six months. It's amazing that July is six months away, and already it is filling up fast. Rebekah has four appointments scheduled that month already!

Rebekah walking with DeeAnn last week.

Like I said, I didn't have my camera in therapy today, so I don't have any video of Rebekah walking unassisted. This video was last week Wednesday in therapy. Rebekah is wearing "squeak" shoes, so the squeak-toy sound you hear is her walking. She wore the shoes outside last week and about drove our neighbor's dogs crazy. Thankfully they are contained, or they might have seriously terrified Rebekah while trying to get to her shoes! :)

I know this was a terribly long post, so if you made it all the way to the end - thank you! We appreciate each of you and thank you for praying for our family and our little Rebekah.

Nancy

There's no place like home!

I just wanted to post a quick update to let you all know that we are home!!! Rebekah was very excited to see her brothers, but she was very tired. She went to bed at 7:00 and we haven't heard a sound from her since! I'm sure she is enjoying being back in her room and in her crib. I know I am looking forward to sleeping in my bed tonight!

Rebekah did come home with oxygen, and she will be staying on it until at least her next cardiology appointment. Unlike before her surgery, Rebekah does not need the oxygen to keep her sats up. Rather, this is called "oxygen therapy." It some studies, oxygen has been shown to lower pulmonary hypertension, so we are going to try oxygen for the next month and then see if it has helped. If Rebekah's pressures are lower, she will likely remain on the oxygen until her heart catheterization in March. If there is no change in the pressure, Dr. Lucas will probably take Rebekah off the oxygen. We are hoping that the oxygen will lower the pressure in her heart at least a little bit. If going back on oxygen is a way to do that, then we are willing to try it. I'm hoping that she will be on oxygen until March!

Thank you to everyone for your prayers while we were in the hospital. Please continue to pray for Rebekah. She still has a cold, but it seems that she is getting over it. Pray that she will continue to be as healthy as possible through the winter months.

Nancy

Brrrrrr!

Well, we haven't seen any snow yet (unless you count the dozen or so minuscule flurries I saw around lunch time), so this trip may prove to be our record breaker. However, it is downright cold for this southern blood! Temps in the teens with even colder wind chill is not my idea of a mild southern winter! :)

Rebekah is stable tonight. She is not really any better, nor is she any worse. Her fever has come and gone off and on today; I think slightly over 100 was the highest recorded temp today. The lower temps are probably due to someone's newfound interest in the little ice chips available here at the hospital (same kind you can get at Sonic). I can't imagine where in the world she would have picked up such a silly little habit. ahem.

Two pigtails are cute...four are even cuter!

Earlier this week, I had fun playing with Rebekah's hair. She is such a good sport and lets me do almost anything. She really likes having her hair brushed and played with. I really enjoy brushing and playing with it! We make a pretty good combination, I think! :)

Rebekah playing on the stairs.

One day last week Rebekah decided to sit on the bottom step. She probably played for over an hour there. At times she sat; at other times, she pushed herself up to standing and stood without holding on to anything. She was so proud of being able to stand up by herself, and she let us know by clapping!

See my brothers? This one is Caleb.

Rebekah has had some periods of playing today. She has also had periods of time when she has just felt rotten. During some of her more playful times, Rebekah likes to stand at the end of her crib and jabber about her brothers. She has been saying "Bubba" for Caleb's name. I'm not sure if that's her way of saying Caleb, or brother, but either way, it's very cute! :)

Kisses for my brothers!

We saw one of the cardiologists from Rebekah's group this afternoon. He was concerned about this sickness adding more stress to the already high pressures Rebekah has. To that end, he recommended that Rebekah go back on oxygen for a while to give her lungs a little break from working so hard. He also said that he would prefer to see Rebekah remain in the hospital until she makes a definite turn for the better. Of course, we are hoping that is sooner rather than later!

Brrr....this ice is cold! (But it's SOOO good!)

This is a short little video of Rebekah walking with her little doggy. Excuse the shakiness. Zachary was our amateur videographer. :)

We're praying for an uneventful night, as much sleep as one can possibly get in a hospital, and a great day tomorrow!

Nancy

Saturday Night Update

We are settled in at Greenville Memorial, and in true Rebekah-style, it is 10:00 and she is still going strong. :) We have had an eventful two days, so I'll try to fill you in.

Yesterday (Friday), Rebekah woke up with a cough. It wasn't a bad cough, and we decided to just watch it and see what happened. We put Rebekah to bed a little later than usual, and by the time Drew and I went to bed, she was coughing a lot. That translated to us being up and down almost all night. By the time morning rolled around, I was up and on the phone with the doctor's office as soon as they opened. They wanted to see Rebekah right away, so we took off and were there by a little after 9:00. By the time we got to the doctor's office, Rebekah was coughing so much that she could barely take a breath in between coughs. We had only been back in the room for a few minutes when the doctor (one we have seen in the past, but not our usual pediatrician) came in with a breathing treatment. He ordered two Xopenex treatments given about 10 minutes apart. When we finished, he came back in to listen to Rebekah and said that she was still working to hard to breath and that we needed to head to the hospital. Dr. Belvin did not actually do any bloodwork or testing at the doctor's office, but he said that Rebekah had all the symptoms of RSV.

When we got to the hospital, it took a few hours to be admitted, get settled into our room, and get all of the normal "admission" paperwork and other stuff out of the way. By mid-afternoon, the nurse was ready to draw blood for the labs the doctor ordered. In a few hours, the RSV test came back: negative. We are very thankful that Rebekah does not have RSV!! It is a particularly nasty little cold bug that can seriously restrict airflow through the lungs and cause problems for babies with immature lungs, or in Rebekah's case, for those with only one working lung. With that being said, though, we really don't have a name for what Rebekah has. It appears that this is playing out just like last winter. We are in the hospital for an unspecific respiratory virus that is causing Rebekah to have lower oxygen sats, a very congested nose and a really, really yucky cough. She also has been running a fever between 100-101.2. So far Rebekah has avoided being on oxygen, but she was very close around 9:00 when she had a bad coughing spell and her sats dipped to around 80. She has been able to bring her O2 up on her own each time it dips, so we are just waiting to see if her body can fight this bug off without the extra oxygen. It is ready to go, though, if she does happen to need it in the night.

So, that's where we are at and how we got here. I am really hoping that after a day or two of observation we can go home and monitor this cold from home. The only drawback is that we no longer have oxygen or a sat monitor at home, so we aren't able to check Rebekah's sats from home.

Please pray for two other little heart babies that live near us. Mason was flown to MUSC in the early morning hours on Friday and had an emergency open heart surgery late Friday afternoon/evening. The surgery did not go as planned, and he will need another one in a few months, but he seems to be stable right now. You can read more about his story by clicking here. Brandt is also at MUSC this week, and he had his second open heart surgery Tuesday. After some ups and downs with his blood pressure (and his self-extubation!!), he was doing well enough to be moved to step-down today. Yeah, Brandt!! You can read all about Super Brandt by clicking here.

I guess that's about all for now. I am anticipating seeing some snow in Greenville tomorrow or Monday. After all, it snowed at some point during every hospitalization (in Greenville) that Rebekah had last year. It's an amazing record that I would hate to break now! :)

In all seriousness, please pray that whatever this virus is will go away quickly. Pray that Rebekah can breathe well enough to sleep tonight and that her airways will open up more. Also, please pray that Rebekah's oxygen levels remain high so that we don't need to use oxygen.

Nancy

Saturday

We have had quite a boring Saturday here in Rebekah's room. I guess that's the best kind to have when you're in the hospital! :) Rebekah has still had a fever for most of today, so the doctors are pretty sure she has something going on. This morning during rounds, the resident told us that they were going to watch Rebekah to see if she continued to have a fever today (she did) and that tomorrow they would repeat the blood work. Yesterday's blood work showed elevated white blood cell counts, which would indicate some kind of infection. However, the WBC count was not high enough to indicate that an antibiotic needed to be started. With Rebekah's continued fever today, we are guessing that tomorrow's blood work will show an even higher WBC count.

Because of Rebekah's fever, she was not allowed to leave her room or go to the playroom today. We have spent a lot of today rocking in the rocking chair, watching Baby Einstein DVD's and baby sign language DVD's. Those are Rebekah's favorites! We were also able to bring some toys back to the room from the playroom, so we've been playing with Mega blocks in our room.

Overall Rebekah has had a good day despite the fevers. She has periods of fussiness and times when she very obviously does not feel good, but she has also had brief times of playing and being cute! After days of observing doctors and nurses and Mommy and Daddy washing their hands, Rebekah has now learned the sign for handwashing. It is really cute to see her laying in bed asking to wash her hands! :) We also "bent" the rules a little today and called the boys from Rebekah's room. Technically we should leave the patient area to make calls, but the boys really enjoyed talking to Rebekah. She held the phone a long time listening to them talk, and she kept waving every time we told her to tell the boys "hi." I think she misses those boys - I know Drew and I do!

I don't think I've mentioned it on the blog before, but a day or so after surgery, I noticed a large (maybe 2-inch) area behind Rebekah's left ear at her hairline. It is quite red and swollen. When I first brought it to Dr. Graham's attention, he felt that Rebekah may have been laying on something during the 8+ hours she was in the OR that caused a reaction with her skin. However, the area has not improved any in over a week. When I asked the resident about it this yesterday, he didn't really know what to think of it. After doing some thinking and researching, this morning he told me that he feels maybe Rebekah had some blood pool there during surgery and formed a clot that will take weeks to dissipate. He gave me a few signs to watch for (growing larger, becoming redder, fluid-filled) and said that if any of those things occurred, that they would want to know immediately. Otherwise, he said we pretty much just wait for her body to break it down over time. Has anyone else heard of this? I can't upload a picture right now to show you what it looks like (I couldn't get a clear/not blurry picture of it with my cell phone.). If we get home and it still looks like this, I will upload a picture so you all can see it. I know for sure that it was not there prior to surgery, and I know for sure I noticed it at least the Saturday evening after surgery.

So the plan is to stay put until this fever gets figured out. I am happy to say that Rebekah's lungs are much better-sounding today. We can hear (or not hear!) the lack of "junk" rattling around in her chest when she breathes. Oh, and if you missed the earlier picture, Rebekah is no longer on oxygen!!! Our night nurse was able to wean Rebekah down during the night, and we have not had to turn it back on today. There have been a few times when Rebekah's sats dip into the 70's, but she is always able to bring it right back up within a minute or two. The only concern would be is if it took her a long time to get her sats back up into the 90's. We are thrilled at the thought of going home without oxygen!!

Nancy

Amazing!!

Wow! Rebekah just decided to sit up on her own! :) She was a little wobbly, but I am amazed she has the strength in her arms to push herself up.

Dr. Bradley came up while we were at supper and removed Rebekah's last remaining chest tube, so we are officially tubeless!! Rebekah does have one last IV in her foot so the doctors can give her diuretic still. The doctors are probably going to transition her to oral Lasix tomorrow and take her off the IV Bumex.

Rebekah is still on a liter of oxygen to keep her sats above 90%. Prior to surgery, Rebekah was on 1/2 to 1 liter of oxygen to keep her sats above 75%, so this is a huge difference!! The goal is to have Rebekah completely off oxygen before we go home, and still have her sats above 90%. We'll see what Rebekah thinks of that plan.

We are hoping to have a quiet, restful day tomorrow and maybe wrap up the last few goals so we can get home. Maybe by early next week???!

Nancy

P. S. The x-ray technician just came by to do another chest x-ray per Dr. Bradley's orders. Right before the x-ray, the respiratory therapist came for chest PT. She said Rebekah's lungs still have a bunch of "junk" in them, so we'll see what the x-ray looks like. Hopefully this stuff will clear up soon.

Good Morning!

Thank you all so much for your prayers, emails, comments and texts! Drew and I were able to get some much-needed sleep last night. I fell into bed around 10:30, and I heard nothing until about 7:30 this morning. It was wonderful!!

Rebekah, on the other hand, did not sleep so soundly last night. Her nurse said she tossed and turned through the night. They have not been able to come up with an effective cocktail of drugs to keep her sedated. She is on a morphine drip, IV injections of Versed and morphine in between, and they also added in Precedex. All of that, and she still had a restless night! Our little girl is a fighter! The doctors would still like her to be sedated throughout most of today to let her heart and body heal from the surgery. Also, all of that moving and thrashing has the potential to rip out tubing, IV's, pacing wires and chest tubes, not to mention the ventilator. So, if you would like to pray specifically, please pray that Rebekah can rest peacefully. I'm sure her nurse would thank you for those prayers. :)

We were able to talk with Dr. Graham (one of our favorites!!) before we left the hospital last night. He said the pressures on the right side of Rebekah's heart were disappointing, but they are going to hold off a few days to see if her heart begins to lower the pressure on its own before doing any more interventions. Basically, Dr. Graham gave us three potential outcomes.

1) The pressures in Rebekah's heart come down on their own and no intervention is needed. (Best case scenario)
2) The pressures in Rebekah's heart remain high, but her heart tolerates the increased pressure for a few months (with or without medication), and in a few months we come back for a heart catheterization to measure the pressures and make adjustments as necessary. (Not the best, but certainly not a bad option)
3) The pressures in Rebekah's heart remain high, and her heart begins to tire and doesn't want to keep pumping against that much pressure.....also known as heart failure. In this scenario, we would have to intervene immediately. Hopefully a procedure could be done in the cath lab, but there is a possibility of another trip to the OR if the pressures cannot be lowered by a cath procedure. (Worst case scenario)

As of last night, Rebekah actually had three different pressures that were high. The most concerning is the PAP (pulmonary artery pressure). She has never had this measurement before, because she did not have a pulmonary artery before yesterday's surgery. This measurement is a measure of the pressure that is in the new conduit taking blood from the right side of her heart into her left lung. Normal PAP pressure is about 1/3 of systolic blood pressure (the top number on a normal blood pressure reading you might have at the doctor's office). Rebekah's systolic pressures yesterday were in the mid 70's to high 80's. Her PAP was in the high 60's to mid 70's. As you can see, it is significantly higher than normal, and too high even for Rebekah's anatomy. The doctors would like to see it at least as low as half of the systolic number. So we are looking for numbers that are somewhere in the upper 30's to mid 40's. Based on a bedside echocardiogram that Dr. Bradley did yesterday, he feels that for some reason this conduit is beginning to narrow. Not good! This conduit is the passage way for an amount of blood that is already too large for the space that it is flowing to. That in itself is enough to create higher pressures, which Dr. Bradley had warned us about on Tuesday. If that conduit narrows, it becomes an even smaller space for that blood to flow through. I think this is one of Dr. Graham's more pressing concerns. If that conduit continues to narrow, or the pressures continue to remain as high as they are, or higher, we got the impression that Rebekah would be headed to the cath lab in the next few days for them to try to balloon that conduit open.

The other two pressures that are high are the LAP (left atrial pressure) and RAP (right atrial pressure). These pressures are a measure of the pressure in the top two chambers of Rebekah's heart. You know, the chambers which now have a hole between them to try to equalize some of the pressure building on the right side of Rebekah's heart. I'm not really sure what the plan is for correcting, or lowering, that pressure, except that the doctors are going to give it a few days and see if that pressure drops as the heart heals. Normal readings for those pressures would be high single digits (8 or 9). Normal post-op readings would be as high as the low teens. We saw Rebekah's pressures as high as the low 20's last night before we left.

Other than those numbers, everything else looks great! Rebekah's oxygen saturations are reading between 97 and 99%; those are numbers we have never seen! When she came in for surgery, her sats were between 75 and 80% on half a liter of oxygen, so we are very excited to see "normal" saturations!

That's about all for right now. I'm sure we will have more information to share as the day progresses, but I just wanted to get a quick post to update you on where we are right now. Thanks for praying!!

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

Sunday adventures

They have run lots of blood tests and x-rays. At this point they can not find a reason for Bekah's needing oxygen support outside of her heart issue. They are sending her home this afternoon on 1/2 liter of o2 and we are to take her back if anything changes. Bekah has an appointment scheduled for Tuesday with Dr. Lucas. I am not sure if he will see her tomorrow or if we will wait until Tuesday. They will be doing a complete echo and looking at her heart function along with her pulmonary band. We suspect that the echo will show us the Bekah has progressed closer to needing her heart repair. She has done a lot of growing in the last couple months. Which will cause her band to get small quicker. So we will await what Dr. Lucas has to tell us and see how we will proceed towards Bekah's next hurdle.

Please continue to pray for Rebekah and all the details surrounding her and her care.

-DE

Time flies along when you are not looking. We have not kept up with posting as we would have like to, we have all had a really busy summer. Bekah has grown and changed so much this summer. She is crawling and doing well with therapy. She actually has taken a few small steps this week while holding her hands. She is trying to pull up but lacks the strength to pull herself up yet. I am sure Nancy will post more about our summer when she has time.

This morning things changed. Bekah's o2 sats have been jumping up and down for a couple of weeks now. She was sick with a little cold, when this started so we thought maybe it was part of her cold. She is well again and still having some trouble with her sats. We were told to let her doctors know if she needed to be on oxygen again and they at that point will do some closer looking. Well this morning Her Sats dropped below her cut off level for not being on oxygen. We have done all the calling of doctors and over an hour or so our happy playing girl has headed down hill. She was very playful this morning and has continued to crash and look sick as time went on. So we are headed to the ER to see what the doctors can find with her situation. We will update as we get more info this afternoon.

We are hoping this is just a down day for Bekah and that she will bounce back quick. As always we appreciate your praying for Bekah and our family.

-Drew

The Plan of the Day

This morning started out eventful, if nothing else! Dr. Gwinn, the pulmonologist paid us a visit shortly before 9:00 this morning. After checking Rebekah out, she felt like we needed to have a consultation with cardiology. Her reasoning was that we have been treating Rebekah's lungs for basically a month now (counting her last hospital stay and our time at home), yet Rebekah still continues to need an ever-increasing amount of oxygen to keep her sats in an acceptable range.

While we understood that Rebekah's oxygen dependency could be cardiology related, we have heard for weeks now that the reason was respiratory related. So this morning, we hear from respiratory that it's cardiac. We hear from cardiology that it's respiratory. Can I scream now?????

Rebekah watching her brothers on their Sunday visit. We actually got to take Rebekah downstairs so her brothers could see her for about an hour.

So after a phone call from Dr. Darby (pediatrician) to Dr. Lucas (cardiology), it was determined that we are likely looking at a cardiac-related issue with Rebekah's breathing. Yes, she does still have a slight lingering respiratory illness, but nothing that would cause a need for a liter of oxygen. Her x-rays from Saturday looked good, and all of the blood work that was done also looked good.

The fish tank downstairs in a small waiting room. The boys love to watch the creatures inside, particularly the sea urchins like the one Justin is pointing to.

Dr. Lucas believes that the band on Rebekah's left pulmonary artery may be getting too small, not allowing enough blood to get to her left lung. This would result in needing more oxygen to compensate for the lower function of her left lung. On the flip side, we were hoping that one (or more) collateral artery would begin to take over the function of a right pulmonary artery to the right lung and make up for the reduced flow to the left lung. We were warned that it did not appear that a collateral artery had formed, and this scenario would back that theory up. Of course, all of this is just speculation until we get to Charleston in March for Rebekah's heart catheterization.

Rebekah hanging out with Daddy.

Rebekah and Aaron

Rebekah and Zachary

Justin and Rebekah

The other complication that has arisen is that Rebekah has begun to have diarrhea again as of yesterday. She has had two negative c. diff tests, so it is a bit of a puzzle as to what caused the diarrhea to begin again. Dr. Darby did have stool samples sent to the lab to check for a variety of other possibilities. We should find out about that tomorrow.

Rebekah was happy after seeing her Daddy and brothers.

After all of the consultation and talks back and forth, it will be interesting to see what tomorrow brings!

Nancy

More of the same

So, as you can tell, I haven't updated for a couple of days. As I was telling Drew tonight, I feel like all of my updates are the same thing....we have some good moments and not-so-good moments, but at the end of the day things are pretty much status quo.

Rebekah and I are enjoying watching the Olympics right now. Or, rather, I am enjoying watching the Olympics and pretending that Rebekah cares anything about it. :)

Rebekah is up to a liter of oxygen tonight. She has had periods of more difficulty in her breathing today than yesterday. For the most part, Rebekah does well with her breathing, but she has bouts of coughing that leave her struggling to catch her breath. Rebekah did have a chest x-ray done this morning and some blood work today, but we will have to wait until the doctor comes by tomorrow to see what the results are.

In an effort to conserve some calories and allow Rebekah to use her energy to recover, her doctor decided to put her on continuous g-tube feeding for the last couple of days. It turned out to be a good decision since Rebekah only drank about 4 ounces from a bottle today. When she did drink from a bottle, she had a lot of coughing and shortness of breath.

While we have been in the hospital, we had another good snow here in Greenville. That makes three hospital stays and three snows....I think I'm seeing a pattern here! We posted some pictures on our family blog of the boys playing in the snow this morning. You can view them here.

We're hoping to have a good night and an uneventful day tomorrow!

Nancy

Thursday P.M. Edition

What an up-and-down day! Rebekah was doing well this morning and early afternoon, but by this evening she started running a low-grade temperature and having more trouble keeping her sats in the low 80's.

Rebekah's cardiologist reviewed the results of the echo that was done this morning, and, as suspected, there are no cardiac issues in play right now. Everything that is going on appears to be solely respiratory. That is very good news! At least we are only dealing with one issue, not multiples!

We finally met Dr. Gwinn, the pulmonologist today. I say finally because there has been talk of having a consultation with her since our last hospital visit, and in fact, we had an appointment already scheduled with her on March 1. I had just filled out and returned the new patient information the day before we came into the hospital! Anyway, Dr. Gwinn read the x-rays taken last night and she saw patches of fluid in both the right and left lungs. The fluid could either be pneumonia, or excess build-up of fluid due to her heart and lungs working so hard to fight off this illness. Dr. Gwinn felt it warranted increasing Rebekah's dose of Lasix for tonight only to try to get some of that fluid off her lungs. If that does not seem to do the trick, we will do some more testing (blood work) to check for viral or bacterial infections. We did have some blood work done last night in the ER, but it clotted before any testing could be done on it. After four attempts to get an IV placed and two blood draws that clotted, the ER doctor decided to stop trying to get the blood and let the attending doctor order it if necessary. We will see tomorrow if Dr. Gwinn feels it is necessary.

I must say that I was very impressed with Dr. Gwinn. She is the only pediatric pulmonologist in Greenville, and she is very thorough. She had done her homework and came into the room with two pages of notes written about Rebekah and her different medical issues. She seemed to be very in tune with what was going on with Rebekah's particular respiratory issues, so I am hopeful that she will have some good suggestions for long-term management. Maybe with her help we will be able to stay out of the hospital for longer than three weeks at a time! :)

Rebekah is now sleeping soundly. Tonight she will be having her breathing treatments and continuous feeds as usual. Because of her low-grade temp (the highest so far was 99.9F), she will have her temperature checked every two hours through the night, or until they have two consecutive normal temperatures. Right now she is on about 3/4 liter of oxygen and her sats have been stable in the low- to mid-80's. We're heading for bed and hoping for a good, uneventful night!

Nancy

Whirlwind!

After waiting in the ER yesterday for almost eight hours, we were finally admitted to a room around midnight last night. The doctors have done labwork, RSV testing, chest x-rays and an echocardiogram. The bloodwork came back fine and the RSV was negative. The x-ray, however, showed some patchy areas on Rebekah's right lung. This could be due to some cardiac issues (her cardiologist feels that is unlikely), but most probably is indicative of viral pneumonia. We did have the echo done this morning just to rule out any cardiac possibilities, but have not seen the cardiologist to get the results of that test.

For now, Rebekah is resting comfortably on a liter of oxygen. Her sats are holding steady in the mid-80's, which is a huge improvement from the low-to mid-70's we were seeing in the ER last night. She is continuing to receive breathing treatments every 4 hours and oral steroids twice a day.

If this is, in fact, viral pneumonia, there is not much we can do except provide supportive care (oxygen, breathing treatments, steroids) and wait for Rebekah's body to fight it off. With her compromised immune system already overloaded with her last respiratory illness, it may take a while for her to recover from this. Not only is Rebekah more susceptible to catching respiratory illnesses, it takes her much longer to get over them than it would for a child with a normal immune system and no other heart or lung issues. We are patiently waiting this one out and trying to get all of the help for Rebekah that she needs.

Once again, thank you for all of your prayers, phone calls, emails, facebook and blog comments. It encourages us so much to be reminded of how special Rebekah is to so many people.

Nancy

Long Awaited Update

Yes, I know, Rebekah's adoring fans are longing for an update! :) So, I will do my best to fill you all in.

Rebekah came home from the hospital on the 31st of January through ice and snow. Although nowhere near the amount of snow that was predicted, the boys still enjoyed the inch or two that we did have and were very excited that Monday was declared a snow day.

Aaron, Caleb, Mommy, Justin, Daddy, Rebekah and Zachary

As you can well imagine, everyone was excited to have Rebekah back home. The boys practically fought each other over who would get to hold Rebekah and help with her. In a good way, of course! :)

Rebekah did very well for the first week or so that she was home. On Tuesday, we had a cardiology appointment with Dr. Lucas. Rebekah's heart function continues to look good, and we are so pleased by that. At least the extra stress of trying to breath has not had an effect on her heart. We do have a new date scheduled for Rebekah's heart catheterization. If all goes as planned, we will be leaving for Charleston on March 8th, to have the catheterization done on Tuesday, March 9.

Zachary and Rebekah

We also saw Rebekah's pediatrician on Thursday of last week. Rebekah has been exhibiting some symptoms of c. diff once again, so she is back on Flagyl to treat it. Incidentally, during Rebekah's GI appointment today, the nurse practitioner said that c. diff is even harder to get rid of (and easier to relapse!) in kids who have a compromised immune system. That could explain why Rebekah is fighting it again so soon after we thought she was over it. Anyway, our pediatrician also decided that Rebekah should remain on oxygen until we have the heart catheterization in March. He feels that since Rebekah really couldn't get off in the hospital, he would be more comfortable waiting to see what the doctors in Charleston decide about the need for oxygen. As it turns out, he made the right decision!

Justin and Rebekah

Now fast forward to this past Sunday. Rebekah started working a little harder to breathe and seemed to be struggling a bit more. Nothing major, no severe distress, just a little heavier, faster breathing now and then. But, it was enough for me to notice....and enough to keep noticing it throughout Monday when she definitely started sliding downhill.

Aaron and Rebekah

So this morning I called our pediatrician and explained what I had been watching the past couple of days. By today, Rebekah was definitely having brief periods of moderate distress - tight coughing, wheezing, significant retractions and fast, heavy breathing. Dr. DeMoss called in a prescription for an oral steroid to help open Rebekah's airways to see if that made a difference. Then we went to our scheduled GI appointment this afternoon. From a feeding standpoint, Rebekah is doing well. The nurse practitioner made only some minor increases in the amount of formula Rebekah is getting in her overnight feeds.

Caleb, Daddy and Rebekah

Our nurse practitioner listened to Rebekah's breathing and watched her (at that time) mild respiratory distress and decided to order a chest x-ray while we were there. Radiology is in the same building, so it would save us a trip to the hospital if our pediatrician had decided to have an x-ray done. The x-rays are still clear - no different from the last x-ray we had taken at the hospital before we left. That's good news! However, when the nurse practitioner checked Rebekah's O2 sats, we found that she was only barely satting around 80% and frequently dipping to 77-78%. And that was with the 200cc's of oxygen she was using. So, our NP called Dr. DeMoss and he decided to increase Rebekah's oxygen to 300cc's, continue the oral steroid for 24 hours and see if there is any change - hopefully for the better!

All dressed up!

Tomorrow we have an appointment with the infectious disease doctor. He follows Rebekah's immune system and troubleshoots any potential problems we may have with her low immunity. We will be re-checking her O2 sats while we are there to see how we are tomorrow and then a decision can be made to continue the course of treatment we are on, or return to the hospital. So far, increasing the oxygen has seemed to do a lot to relax Bekah's breathing tonight. She isn't struggling as much and looks better overall. We will see what tomorrow brings!

Oh, Rebekah was weighed and measured at her appointment today. This is the "official" weight and measurement that we compare using the same equipment each time. Rebekah is now 11 pounds and 8 ounces and is 24 inches long. Accounting for a three week stay in the hospital, I would say that's not too bad!

For tonight, we are going to rest (hopefully) and keep a close eye on Rebekah. If there is a change in the amount of oxygen Rebekah needs (for the worse), or if her distress worsens in any way, we have orders to immediately head to the hospital. I'm hoping the increased oxygen and steroids will help keep us at home this time around!

Please keep Rebekah in your prayers, and specifically that she will be able to fight this respiratory illness. Also, please keep our friends, Erin and Milo, in your prayers as they are adjusting to life without their sweet Josiah.

Nancy