Postponed

Unfortunately our trip to Charleston to have Rebekah's vocal cord scoped has been postponed due to one little girl being sick.  :(  Rebekah had a bit of a clear runny nose yesterday that quickly grew into a nasty runny nose and fever by last night.  She woke up with a fever this morning and a bad cough, so we thought it best to reschedule the Charleston plans.  Our new appointment is March 9, and we hope everyone is well by then!

Please pray for Rebekah.  This appears to be the same bug that two of her older brothers had over the last few weeks.  She is happy and playing now, but has periods of horrible coughing where she finds it hard to catch her breath.  We are watching her oxygen sats carefully and will be calling the doctor if they start trending downward and not coming back up.  For now, we are resting at home and starting the antibiotics that were effective in helping her brothers get over their bronchitis and pneumonia.  We're praying that it doesn't get that far with Rebekah!

Nancy

Much needed update!

Wow! I can't believe it has been three weeks since my last post!  I would ask where time has gone, but unfortunately, I know exactly where it has gone!  :)  We've had some rounds of colds and illness (including pneumonia) for the last few weeks, and I have had very little time to do anything besides cover the basics!

Okay, so where to begin....let's start with the swallow study.  As we all suspected, Rebekah failed her swallow study last week.  She aspirated thin liquids, so she is restricted to nectar-consistency or thicker beverages.  She did well on thickened liquids and solids.  Just as part of our trial-and-error trying to figure out how to best help Rebekah drink, we have discovered a few interesting facts.  First, Rebekah does much better with room temperature or warm liquids than she does with cold.  For example, she does great with tap water, but tends to aspirate more with ice water.  So we make it a point to try to give as many room temp drinks as we can.

Rebekah loves to do "school" with her brothers! :) 

The other thing we found is that Rebekah does much, much better drinking from an open cup (with no lid) or a straw, versus a sippy cup.  The motion of tipping her head back to drink from a sippy leaves her airways wide open and unprotected, which leads to more frequent aspiration.  Using an open cup, or straw cup keeps Rebekah's head more level (or even tilted down slightly), which helps her to naturally protect her airways when she drinks.  We haven't found anything that is 100% foolproof as far as eliminating aspiration (other than restricting drinks altogether), but we have been able to greatly reduce the number of incidents that she has had.

 Sweet Caleb

Cute little story here - Caleb fell asleep on the couch one day last week.  He was so cute that apparently Rebekah felt the need to give him kisses.  Maybe it's the only time he is still long enough for her to kiss!  :)  If you think of it, please pray for Caleb.  He has been running a fairly high fever since Saturday and started coughing yesterday.  This is exactly the same way Aaron started out with what was eventually pneumonia.  We are heading to the pediatrician in the morning to hopefully get some antibiotics before Caleb gets to pneumonia.  Also, please pray that Rebekah doesn't come down with this particularly nasty bug.  Aaron was sick for almost three weeks, and he doesn't have any of the extra medical challenges that Rebekah has.

 Gotcha!

Some friends of ours took a trip to Disney in December and brought Rebekah her very own authentic Mickey Mouse!  Can we say that she is in love??!  She was absolutely thrilled with her Mickey, and it has a permanent position in her bed now.  :)  Each of the boys also received a special gift from Disney, and they were all very excited.  Thank you so much for the gifts!!

 Rebekah loves her Mickey!

So, the other big test Rebekah had since the last time I posted was a sleep study.  Boy, was that crazy!  Those of you who have lived through a sleep study know what I'm talking about.  :)  Those of you who haven't - be very, very grateful!! :)  Let's just say that it should be called a non-sleep study.  Rebekah did actually sleep for most of it, albeit extremely restlessly.  I, on the other hand, heard every moan, cry, whimper, beep and buzz along with every time the technician came in the room with a flashlight to readjust something.

 Yep, I'm cute!

To start with, there was an hour-long process of getting Rebekah all hooked up to the monitors.  She had 20-something leads on her head (read: in her hair!), another half dozen or more on her face, five on her chest, some on her arms, two on each leg, and a band around her chest and another around her stomach.  And she was supposed to sleep with all of that on!!

The leads on Rebekah's head were first coated with a rubber cement-ish type of vaseline substance.  I'm not really sure how else to describe it.  It was kind of pasty like vaseline, but was gloppy and sticky like rubber cement.  Except it wasn't permanently sticky.  Yeah, bath time that morning was loads of fun.  Her hair was so sticky and frizzed out that I could barely stuff it all into the hood of her jacket to take her to the car to go home.  I have to say, though, that the advice from the technician was great.  We wet Rebekah's hair in the bathtub, slathered on loads of conditioner, let it sit for five minutes or so, then rinsed it all out.  Then we shampooed, rinsed and conditioned again.  It really did work to get almost all of the goo out of her hair.

So what did we find out from the sleep study?  We don't find out until next Monday.  :(  The technician did tell me before we left, though, that they were able to get some good information, so that was encouraging.  We do know from our initial consultation with the sleep doctor that he felt like THE INCIDENT sounded more like central apnea than obstructive apnea.  If that is the case, then Rebekah will have a referral made to a neurologist for a consult and probably an MRI.  He also said that it is rare, but possible, for a child to have both central apnea and obstructive apnea.  We will find out for sure on Monday.

Rebekah was also evaluated by her speech therapist two weeks ago.  She usually checks in with us every six months to see how Rebekah is progressing, and we had decided to wait until after Rebekah's most recent surgery to begin therapy for Rebekah's nasal speech (a result of her high palate/larynx abnormalities caused by DiGeorge Syndrome, NOT because of the paralyzed vocal cord).  Anyway, Rebekah's vocabulary is far above average for her age, as is her receptive language.  Rebekah will begin speech therapy next week for 30 minutes/week to work on her articulation.  Just to give you an idea - her therapist was able to pinpoint some of the nasal sounds that Rebekah makes.  Rebekah's t's and d's sound more like n's.  Her b's and p's sound more like m's.  One of the words that we really pick up on this is today.  It sounds very much like noo-nay.

Ahhh...the hair is much better!  :)

That's about all for now, I guess.  We are waiting to see what the sleep doctor has to say on Monday.  We're also praying that Caleb doesn't develop pneumonia, and that Rebekah doesn't catch this illness.  Thank you for praying for us!

Nancy

No Answers

If you read yesterday's post, you know that Rebekah is still struggling with coughing and choking at different, random times during the day.  This morning she also woke up breathing very heavily, as if she had just been running around playing for an extended period of time.  Several times yesterday and today Rebekah has also tapped the center of her chest and said "owie."

Rebekah did get an appointment this morning with her pediatrician.  He spent a great deal of time listening to her lungs from every conceivable angle.  And, he heard the same things that I had heard last night - very soft breath sounds in the right lung, and a strange two-part hiccuping sound in the left lung. Both of those things are distinctly different from Rebekah's normal.  So Rebekah earned a ticket to the hospital for an (outpatient) x-ray.  Unfortunately, the x-ray didn't show any change from the last x-ray Rebekah had at MUSC.

The good news in all of this is that Rebekah is maintaining her oxygen sats on her own, so she isn't needing any supplemental oxygen right now (other than what she was already on at night).  Rebekah also is not running a fever, nor does she have any other symptoms that would indicate she is "sick."  She is playing and running around with her brothers in spite of the coughing and breathing abnormalities.

Since Rebekah's pediatrician couldn't pinpoint a specific reason for her cough and other symptoms, he referred us back to Dr. L, Rebekah's cardiologist.  His office called this afternoon, and we have an appointment tomorrow morning with Dr. L.  We will see what tomorrow's visit brings!

Nancy

Getting Sick?

Thankfully the last couple of days have been pretty uneventful around here.  :)  Rebekah is completely enjoying being at home with her brothers and just being a toddler!  Aaron and Caleb and Rebekah painted pet rocks on Friday.  Rebekah's rock was red.  The rock wasn't the only thing that was red!!  :)  It is so much fun to see Rebekah feeling well enough to do projects with her brothers!

Rebekah has continued to have periods of coughing and choking over the last several days.  She has done well with thickened liquids, and the coughing doesn't seem to be during meals or when she is drinking liquids.  For a while, the coughing was mainly during the night and in the mornings when Rebekah first woke up.  However, now she is coughing when she cries, and off and on during the day.  I think we are headed to see the pediatrician in the morning to see what might be going on.  I'm hoping that this is not the result of an episode of aspiration sometime before we started using the thickener in Rebekah's drinks.

Friday night I had the pleasure of meeting with a group of heart moms from our local area.  Three hours flew by so quickly!  It was so encouraging to spend time talking with other moms whose children struggle with some of the same things that Rebekah does.  It was definitely worth the drive to get there!

While I was gone Friday night, Drew and the boys got out our Twister game.  The boys had so much fun playing.  I'm amazed at how twisted they were!  :)

Saturday was Aaron's birthday, so of course we had to make a birthday cake!  This little girl hasn't been into the chocolate at all, has she?!  :)  I love how innocent she looks - Who, me?!  She took great pleasure in sneaking her little finger into the frosting when she thought I wasn't looking.  In spite of her help, I thought Aaron's Angry Birds cake turned out pretty cute.

Our little Aaron-bear turned six years old this year.  Wow!  It's hard to believe our little peanut is this big.  He is such a good helper and adores his little sister.  We are so thankful he's a part of our family!!

This morning Rebekah had her vision check-up.  We are very blessed to have a pediatric ophthalmologist less than twenty minutes from us.  He was very pleased with Rebekah's eyes.  Her ptosis seemed a little better to him today, so we are grateful for that.  We will continue to see the eye doctor every six months indefinitely to continue to make sure that Rebekah's vision is not changing or worsening.

No, no, not another picture!  :)  Well, okay, maybe just one picture.  You can really see Rebekah's black eye now.  Hopefully it will start to fade in another couple of days.

Rebekah has been cleared by her cardiologist to resume therapy whenever we feel she is ready to start.  Rebekah's awesome EI will be coming to visit on Friday, and we will set up PT to start probably next week.  I'm just a little hesitant to push Rebekah too far, especially when she is having the choking and coughing.  We'll see what tomorrow's doctor's visit brings.

I love Rebekah's beautiful outfit here.  Strawberry shortcake scarf, hat and Great-Grammy's mittens.  Rebekah asks to put them on and then takes them off about 3,286 times each day.  I'm glad she loves all of her girly accessories!  :)

No autographs, please!  :)

I'll hopefully update sometime tomorrow after we find out what the doctor says.  Pray that it's nothing serious and Rebekah will be feeling better soon!

Nancy

Rocky Road

Rebekah is struggling again today. We have seen a steady decline in her eating since the first of July. Her fatigue has increased also. She had about 10 mins of energy this morning and then crashed. She had a not so good echo 2 weeks ago. She was pretty upset while they did the echo so we were thinking maybe the results were skewed a little because she was upset. DR. L was going to re-do the echo in month. After talking with him this morning he wants to see Rebekah today and run some tests and another echo. This is to make sure we are not missing something.

Poor girl just does not feel well.

We will post what Dr. L finds later today.

Thanks for keeping Rebekah and our family in your prayers.

D

Sleepy Saturday

After playing until almost 11:00 last night, Rebekah finally went to sleep. Her fever went down after her Motrin and stayed down until about 6:30 this morning when it went back up to 100.3*. After another dose of Motrin, Rebekah went back to sleep until Dr. Belvin came in to see us around 8:30. He felt that since Rebekah had spiked a fever again last night, that she really needed to receive her third (and final) dose of Rocephin by IV tonight. So, we are still in the hospital at least until tomorrow.

Rebekah has been more tired today than yesterday. She took a four hour nap this afternoon, which is a surprise, especially considering we are in the hospital! Her nurse was great and held off on vitals until Rebekah woke up. After Rebekah woke up, we played for a little while, then Daddy and the boys came to have supper with us! Rebekah loved seeing her Daddy and brothers. The boys saw us waving from the window (we are on the sixth floor), and they thought that was the best thing ever!

When we got back up to the room, Rebekah was running a 101.3* fever again. I'm thinking that might have earned us an extra night (tomorrow) in the inn because of unexplained high fevers. If the fever were totally due to the ear infection, it would not have returned after two treatments of Rocephin, and certainly not anywhere near that high. I really, really think that Rebekah has the same virus her brothers had last weekend. BUT, the doctors don't want to take any chances sending Rebekah home with that high of a fever, either. We will wait to see how Rebekah does overnight and in the morning. I'm not sure who is on for Rebekah's pediatrician tomorrow, so we'll have to see what they say in the morning.

Rebekah is also not eating much at all orally right now. She is drinking some (a little) milk and apple juice, but that is about all. I think she had three or four bites of chicken noodle soup for supper and a few bites of grilled cheese sandwich earlier. We're hoping she starts eating better tomorrow!

I think that's about all for now. I'm off to do a little laundry and tuck my baby in bed. :)

Nancy

At the end of the day....

....we're still at the hospital! We did finally see the doctor late this afternoon, and she elected to keep Rebekah one more night. If we were positive that the only thing going on was Rebekah's ear infection, we would have been home this afternoon. However, with the virus that the boys had last week, we are concerned that Rebekah has both an ear infection AND the virus her brothers had. So, the doctor wanted to "test" Rebekah tonight to see if her fever came back, and if it did, how Rebekah responded to it. The doctor set a threshold of 101* as a point to repeat Rebekah's chest x-ray and see if it was changed.

So...Rebekah was doing well until about 6:30 tonight. Coincidentally, that is almost the exact time she started getting worse at home last night. Rebekah's temp went up to 101.8* and a chest x-ray was done. We probably won't have the results of the x-ray till morning unless something drastic has changed from last night's. So far Rebekah's sats remain fairly stable and we haven't had to increase her oxygen tonight. Rebekah has since had Motrin and has gotten a second wind. I'm hoping she falls asleep soon because this mama is tired! By the time we got up to our room last night and finished talking to nurses, doctors and respiratory therapists, it was almost 3am! I am ready to call it a (long!) day and go to bed myself!!

Thank you all for your prayers for Rebekah!

Nancy

**Update: It's now after 10:00, and Rebekah is still going strong.........

April Fool's Day!

Well, I wish I could say "April Fool's, we're not really in the hospital," but unfortunately, that is not the case. :)

When we got Rebekah to the hospital last night her fever was 103*. It has come down overnight with the help of Motrin, and this morning was back to normal. We are watching to see if it starts climbing again towards evening as it did yesterday.

Rebekah does have an ear infection, and she received one dose of Rocephin through her IV last night. Rocephin is usually given in three doses, each 24 hours apart. We are waiting to talk to the doctor to find out if we are staying for 72 hours to get all three doses, or if he wants to switch Rebekah to an oral "cousin" of Rocephin, which is Omnicef.

Other than being tired, grumpy and having a pretty bad cough, Rebekah is pretty much her normal self today. Her O2 sats are back to normal this morning on her regular 1/2 liter of oxygen. Last night she was up to a full liter of O2 to keep her sats above 95%. So this is a huge improvement as well. Really, I think a lot of the problem last night was due to Rebekah's fever getting so high and staying high for several hours. It started doing wacky things to her system! Once we were able to get the fever under control, everything else seemed to resolve itself.

So right now Rebekah is taking a much-needed nap, and I am waiting to see our doctor. I'm actually surprised we haven't seen him already as he is usually in between 11 and 1. I was waiting to post so I could include information from the doctor, but I guess that will come in a later post! :)

Thank you for all of your prayers and comments. Considering where we could be, things are going pretty well right now!

Nancy

Hospital Bound

The last week or so the boys have had a virus cold or something like the flu with high fevers and congestion.

Well Miss Bekah has come down with it now. She has a mild ear infection also. So we were to the doctor's today and were going home on meds to recover. All was normal thru most of the day. This evening and into bed time Miss Bekah seemed to head down hill and then crashed at bed time. Her O2 sats have dropped below her allowed norms and she is having a hard time breathing. Along with this the also has pretty good fever.

So after call her cardiologists they are admitting her to the hospital to get her some help.

Please pray she will get over this quick. Also pray for Nancy as she is staying in the hospital with Bekah. Pray the boys to continue to get over their colds.

I want to say thank you to some dear friends who are helping out with the boys, so that I don't have to take anytime off from school. We appreciate all their help.

We will update you when we have more information on what is happening with Bekah.

D

Catheterization Recap

Wow! What a day! Overall, we are thrilled with Rebekah's cath and so pleased with what Dr. Baker was able to do. He found two narrowed areas, one at each end of Rebekah's left pulmonary artery (LPA). (The conduit that was put in during the Truncus Repair is functioning as Rebekah's pulmonary artery. Her left pulmonary attaches to her left lung at one end and attaches to the conduit at the other end. She is missing her right pulmonary artery.) The narrowing at the lung end of the LPA is a narrowing of tissue, and Dr. Baker was able to balloon that open a bit more. The narrowing at the conduit end of the LPA is a narrowing in the muscle of the heart itself. That cannot be ballooned or stent-ed (is that a word??). In order to expand the LPA on the heart end of the conduit, Rebekah will need open heart surgery. To further complicate matters, the location of the LPA on the conduit is very, very near to Rebekah's graft valve that is functioning wonderfully right now. Potentially, any surgery on the heart muscle in that location has the possibility of damaging that valve and causing it to leak. With Rebekah's already high pressures, that would be very, very bad.

SO....do we have a plan yet? Well, tentatively we do. Dr. Baker (cath doctor) would like to see Rebekah make it another six months (at minimum) with the ballooning and an additional medication. The pressures in Rebekah's heart are still high, and while the ballooning was good, it did not resolve the problem. The bottom line is that Rebekah WILL need open heart surgery sometime within the next year. The exact timing of that surgery will largely depend upon how the new medication works in lowering her pulmonary hypertension, and how long her heart tolerates the added stress and continues to remain "happy."

Dr. Baker believes (and so do we!) that Rebekah's case is too complex for his decision alone. Sometime in the next week or two, he will be presenting Rebekah at conference. This is a meeting of all of the cardiac docs, the cath docs, Dr. Bradley and his partner (I can't remember his name), and anyone else directly involved in the management of these heart babies. That is why I say the plan we have right now is tentative. After reviewing the results of the cath lab, Dr. Bradley could make changes, opt for an earlier surgery date, or change the plan altogether. If there are any changes made, we should hear about them in a couple of weeks.

As for the medication that Rebekah will be taking, it is Sildenafil, a drug originally marketed for reducing pulmonary arterial hypertension (exactly what Rebekah has!). Most of you will recognize the drug by the name Viagra, marketed for something completely different. There are relatively few side-effects, and a relatively low occurrence of those side-effects when used as originally intended. As Dr. Baker said, when playing in this game, the question is not, "Does it have side-effects?" but rather "Do the benefits outweigh any potential risks/side effects?" The cardiologists believe that in Rebekah's particular case, the Sildenafil has a good chance of lowering Rebekah's hypertension enough to buy us a few more months before she will need surgery again.

As of tonight, Rebekah is still fighting fevers. She was fever-free this morning, and remained fever-free during her cath. However, she flirted with a low-grade fever off and on in the recovery unit, and her fever began climbing again around 8:00 this evening. Rebekah's nurse, Christie, checked her temperature a little while ago, and it was 101.9 after Rebekah had been given Tylenol just a little over an hour earlier. This is definitely not the trend we want to see! A low-grade fever could be attributed to teething, but we are getting high enough that there is concern that something else might be going on. We would love to blame the fever on anesthesia; after all, Rebekah ran fevers for a week after her last open heart surgery. However, the fact remains that Rebekah had a fever last night prior to her admission. We are currently waiting for the attending to give us some input and direction. It is possible that they may draw labs, test for flu, and/or give another dose of antibiotics as an immune system booster. I am praying that Rebekah rests well tonight, despite the fever. She was up frequently last night, and so were we!

So, please keep us all in prayer tonight and tomorrow. Obviously, we would like to get back home tomorrow, but not if Rebekah still needs to be here. The last thing we want to do is go home tomorrow and have Rebekah's temperature shoot up and be sent back in "emergency" status. Please pray for wisdom for the doctors so they will be able to figure out what is going on.

Nancy

P. S. In case you missed it earlier today, click here to read Rebekah's ice cream post. It's a real treat! :)

Rebekah Factor

We are in Charleston! After a very uneventful trip down, we arrived around 7:00 this evening. After getting supper and filling the truck, we checked into our hotel. When we got Rebekah out of her car seat, I realized that she was running a fever. Of course, we didn't have a thermometer with us, so we gave her some generic tylenol and Drew went to the nearest drugstore to get a thermometer. About an hour after we gave her the tylenol her fever was down to 99.5. I have no idea what this will do to the cath plan, but we will find out tomorrow.

We will be checking in to MUSC at 6:15 in the morning. If the cath goes ahead as scheduled, Rebekah will be first case at 7:30. I'm not sure what the plan will be if her fever goes up during the night. Right now she is very fussy and tired.

We will keep you all updated on the blog and facebook. Please pray for Rebekah; she really needs this cath to figure out a plan for lowering the pressures in her heart.

Nancy

Officially 20 months!

Rebekah has been her adorably cute self this week! It seems like every time I turn around, she is saying a new word, or trying something new. :) Since February didn't have 29 days this year, Rebekah gets to be 19 months old for another month, right? I guess not. So, it's fair to say that sometime in the last couple of days Rebekah hit the 20 month milestone.

Today was a great day in physical therapy. For various reasons, we have not been to PT in three weeks. In fact, the last time we were at PT, Rebekah was just starting to take 3-4 steps in between DeeAnn and me. What a difference three weeks can make! DeeAnn was thrilled to see Rebekah walking all over the gym! Not only was Rebekah walking, but she was climbing in and out of the ball pit, climbing onto the small trampoline, walking up the ramp to the large trampoline, and generally trying out anything she put her mind to. It is just amazing to watch her growing stronger and developing more each day!

Tomorrow Rebekah is supposed to be catching up on her 18 month shots. I called today and asked to see the doctor instead (normally we would just see the nurse for shots). Rebekah has been pulling, poking and generally messing with her ears more the last two or three days, and I want to make sure the ear infection from last week is cleared up. Especially since we are heading for Charleston this weekend.

Thankfully, I think we have all gotten rid of the cold that we seemed to be sharing for the last few weeks. Except for the occasional cough, there are no signs of that cold bug anywhere in the house! I guess Lysol and fresh air did the trick! :)

I have some (hopefully) super-cute pictures and some more videos to download from my camera. I've been procrastinating because there is so much video that I know it's going to take quite a while to download. Maybe actually writing it will be a motivation for me to download it so I can post some new picture and video on the blog. :)

Hope you are all having a great week! I can't believe it's half over. Yikes! I have too much to do in the next three days!!

Nancy

Happy Saturday!

I'm happy to say that I think we are all on the mend at our house! What a crazy couple of weeks of being sick! Rebekah ended up having an ear infection before all was said and done, but she is feeling much better now after a few days of antibiotics. Please pray that Rebekah (and the rest of us!) stay well between now and next week!

We received "official" papers in the mail this week regarding Rebekah's heart catheterization. I know it's been scheduled for months, but it always makes it seem more real when we get the official paperwork. I still don't know what time Rebekah's cath is scheduled, but I'm hoping that it's first case. Last March Rebekah was scheduled for 2nd case (11:00) and the first case went long. It was between 1:00 and 2:00 when she finally got back for her case. We also don't know what to expect from the case itself. The last cath Rebekah had was strictly exploratory. This time, there will be procedures done, if there is anything that can be done to help relieve Rebekah's high pressures. As of the last discussion our cardiologist here had with the surgeon, Dr. Bradley did not really think there would be anything that could be done in the cath lab to relieve the pressure, but they will be checking. Dr. Baker will be the doctor doing the cath. He has done all of Rebekah's caths so far.

In other (great!!) news, Rebekah has tested out of occupational therapy!! We love Rebekah's OT, but are thrilled that Rebekah has made such great progress in just 18 months. When we looked back at Rebekah's goals from last April, there were things such as "clap hands" and "roll over" listed for her goals. Now, Rebekah is almost age-appropriate in every area. We are so thankful for our great therapists and their hard work with Rebekah. We're pretty proud of our little superstar, too! Rebekah has so much determination and desire to do more. She rarely lets anything slow her down!

Rebekah's speech is exploding by the minute! I'm going to attempt to list words and phrases that Rebekah says. I'm sure there are words that I'm forgetting, but even so, it's getting to be a long list!

Words Rebekah Says

mommy

daddy

zac (sounds like gac)

justin (ju-in)

aaron (sounds like "hen" without the "h")

caleb (sounds a lot like bubba)

baby

up (means up or down)

please (peese)

thank you (ga-ooo)

eye

bye

night-night (ni-night)

apple

buckle

bubble

outside (side)

drop it

got it

all done

love you

grampy (sounds like bampy)

grammy

dog (woof-woof, yep she barks for dog)

nana

papa

uncle david (day-ya)

no

look

potty (this one compliments of potty-training Caleb!)

Words Rebekah Signs

play

eat

milk

yes

no

jump

ball

cookie

please

Rebekah's receptive language is astounding. Even though she can't say a lot of the words, she can recognize most common animals (pets and farm animals), almost all her colors, and most of her toys. We're working on her choosing between two or three things. For example, if she has a doll, a ball and a book in front of her, we ask her to pick up the ball correctly the first time.

Rebekah is really walking all over the place now! She is walking at least half of the time without prompting. We are so excited that she is getting stronger and more stable. What a miracle this little girl is!

The other night at dinner, Aaron was playing with Rebekah. He was holding his nose and snorting, so this is Rebekah's attempt at holding her nose and snorting. I thought it was so funny! Then Rebekah shows off her knowledge of body parts. See? Even though she doesn't say the words for all of those things, she knows what they are and can point to them.

Better get some Saturday chores done now. Hope you all enjoy this beautiful weekend!!

Nancy

Quick Update

Just to quickly let all of you know that the colds continue. :( All of us have in one way or another been sick with this round of colds. The current status is: Zachary and Justin appear to be over, or mostly over, the colds; Aaron and Caleb are somewhere in the middle with runny noses and occasional coughs; Rebekah still has some runny nose, and has developed more of a cough. I also detected some wheezing in both lungs tonight when I listened to her breathing. So far she is managing well with only a slight drop in her oxygen saturations. Normally she sats in the mid-90's on room air, and at 100% on oxygen. Tonight she was 91-92% on room air and about 97% on oxygen. We will continue to watch her, but unless she takes a drastic turn for the worse, we are much better off at home than at a doctor's office or hospital!!

Mom and Dad are feeling pretty rough tonight. I have been fighting cold/allergies/sinus symptoms for a few weeks now, and I think this last round was enough to knock me out. I'm planning on getting to the doctor tomorrow if I can get an appointment. Drew is also not feeling well, and we would both appreciate your prayers.

Thankfully, even though many of our friends and church family have been battling the flu, our sickness appears to just be a bad head cold. No one has had fevers, headaches, or body aches that are associated with the flu.

Also, please be praying that Rebekah recovers sufficiently from this cold before we head to Charleston in two weeks (2 weeks!!) for her heart catheterization. Given the seriousness of her pulmonary hypertension, this heart cath is not something that we want to delay if at all possible. I'm not sure what the threshold of "sick" versus "too sick" for a heart cath is, but we don't want to be anywhere near that!

And to throw out a little teaser, I have an exciting video to post of Rebekah...tomorrow! I haven't gotten it downloaded from the camera yet, but I will get it done tomorrow. :)

Thanks for praying!

Nancy

Thankful for Colds!

Yes, you read that right - we are thankful for head colds around here! For one, I'd take a head cold any day over some of the stuff our friends have had. Yucky!! Second, this weekend we were very concerned about Rebekah because she began to show a dramatic decrease in both appetite and activity level. While in most kids that is not cause for great alarm (for a day or two), those can be warning signs of early heart failure. So on Sunday morning we decided to call cardiology just to let them know what was going on. We were reassured (somewhat) by the on-call cardiologist that heart failure usually does not present that suddenly (but we are talking about Rebekah, here. When does she ever do things the usual way??). He gave us a few other things to watch for, but basically we ended the call hoping that by mid-week Rebekah would start showing signs of her brother's cold, and we would have an answer for her lack of appetite and energy level.

Aaron, Rebekah, and Caleb playing with homemade maracas.

Well, this morning Rebekah was gracious enough to wake up with a very congested nose and cough. While we certainly wouldn't wish her to be sick, we are very thankful that we can blame all of these symptoms on a cold and not on her heart. Now we are praying that she can fight this cold off in a couple of days and avoid a hospital trip. :)

Zac and Rebekah, our oldest and youngest.
When did they get so big??

Rebekah was a little couch-potato over the weekend. She wanted to be held, cuddled, and loved on, and we were all happy to comply. :) In the above picture, Rebekah snuggled on the couch with Zachary for a long time while all the kids watched Snow White for the first time. They loved it! Rebekah was especially cute; she kept pointing to the TV saying, "Look! Look!"

Happy Valentine's Day!!

The kids and I made cookies for Valentine's Day on Saturday. We all had one after dinner on Saturday night. Rebekah wasn't sure what to do with hers. She kept pointing at it, poking it, pinching frosting off, and talking about it, but she never did pick it up and eat it. Oh, well, she had lots of fun with it! :)

Rebekah is "so big!" She also has frosting everywhere.

In other news, we did hear back from MUSC last week regarding the schedule for Rebekah's next heart catheterization. Dr. Bradley (Rebekah's surgeon) does not see any benefit to moving the heart cath any sooner than it is already scheduled (March 7). He really feels that the high pressure is due to the one-lung situation and is not something that will be resolved in the cath lab. So, his expectation is to get a general "lay-of-the-land" so to speak, of how Rebekah's heart looks now in preparation for another open heart surgery. I'm not sure exactly when that surgery (if needed) will be, but according to Dr. Lucas, he does not anticipate it immediately following the heart catheterization (as in the same week). He said what will probably happen is that we will have the cath, come home, and wait for a phone call from MUSC after all the cardiologists, cath doctor and surgeon have had time to review Rebekah's case and get it on the surgery schedule.

Even covered in frosting, I'm still cute!

I guess that about wraps up the latest developments here. Continue to pray that Rebekah recovers from this cold quickly and that she stays healthy between now and time for her heart catheterization. As I recall, last year around this time we were also praying for Rebekah to stay well prior to a heart cath. Same song, different verse. :)

I just have to quickly share a huge praise for our little buddy, Owen. He had major open-heart surgery last week Tuesday to repair or replace his tricuspid valve. The surgeon was able to repair Owen's valve, so there was no need for replacement! This means that he will be a candidate for the third surgery of the three HLHS surgeries, and will be scheduled sometime later this year for that surgery. His recovery is going wonderfully, and there is talk that he might be going home as early as tomorrow!!! Way to go, Owen!!

Rebekah says hi to Grammy and Nana!

Ummm, yes, she can talk! Matter of fact,

we have a hard time getting her to be quiet sometimes!!

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

Status Quo

So today has not really brought any big changes for Miss Rebekah. The one piece of good news is that so far today she has not had any fever! :) We are encouraged by that. Otherwise, though, her cough/congestion/cold are about the same as they have been. Rebekah did take an almost four hour nap today with only minimal interruptions, and I'm very thankful that she was able to get some sleep.

During Rebekah's nap, Dr. Darby came in. I asked him a few questions regarding Rebekah's care, and I feel like we are both on the same page. Our goal is to get Rebekah home as quickly as possible so we don't pick up something else while we are here. The only caution that I have is whether or not her high pressure is a condition that needs to keep her in the hospital while she has this cold. If not, Dr. Darby will send us home tomorrow or Wednesday at the latest with oxygen and a sat monitor so we can manage this (and any future) cold at home. If the cardiologist feels that the high pressure warrants more observation and/or staying until this cold is resolved, then we absolutely will stay. That is the million dollar question of the day! :) Dr. Darby was planning on consulting with Dr. Lucas (our regular cardiologist) today to get his opinion.

We were able to get a little more sleep last night. Once Rebekah finally went to sleep (after 10), she only woke up for a few brief times and then went right back to sleep. She did wake up around 5:30 this morning with a bad coughing spell, and she really coughed off and on after that until I got her up and dressed around 7:30. At least we were able to get several hours of sleep, though!

Tonight is Zachary's and Justin's school Christmas program and art show. Unless something changes in the next couple of hours, a good friend of ours is coming to sit with Rebekah so I can meet Drew and the boys at school. We haven't said anything to the boys, so I'm sure they will be excited to see me. I think the current plan is for Drew and I to trade off tomorrow so I can go home and get some laundry and other chores done and spend some time with the little guys. Then hopefully we will bring them up to Rebekah's room for a bit so they can see her as well.

Not much else has been going on around here, and Rebekah just woke up. I'm off to spend some time playing with her. I will update if anything new comes up!

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

The Beginning of a long winter.....of colds

Rebekah has been admitted to the hospital here at home. She had a rough night of coughing and little sleep. She has RSV which is causing her to have trouble breathing. Basically a common cold for our boys, but a serious problem for her with all her other difficulties. So we are greeting the winter season much as we did last year with a trip to the hospital. We hope she will get over this quickly and be back home soon. We also are praying that this will be her only trip this winter.

We will keep everyone updated as she fights of yet another cold.

Thank you for your prayers and support,

D