Rebekah News

So....it's been a while! :)  So long, in fact, that Blogger has a whole new look and format behind the scenes that I'm having to get used to.  Hmmmm.....guess that'll teach me to not stay away so long!

But in the meantime, Rebekah has been doing fantastic!  She is growing, active, has been relatively healthy, and is so much fun.  I'll try to hit the highlights of the last few weeks......

 Future piano player?

Rebekah's last cardiac check-up was great!  Her pulmonary hypertension is still under control (higher than "normal," but much lower than what it was before surgery).  She continues to take Viagra three times a day and sleep with oxygen to keep that pressure down.  Rebekah's heart function also looks really good; probably the best it has ever been in her life!  The best news is that Rebekah is not going to be scheduled for a heart catheterization this summer like the doctors originally talked about!  As Rebekah's cardiologist said, we don't need to do an invasive procedure to confirm good news.  I'm thrilled about that!

 Rebekah and Great Grammy (Hi, Grandma!!)

We are still struggling a bit with the sleeping issues, but I anticipate that we will have ups and downs in the sleep department for quite a while to come.  Rebekah is currently taking Clonidine nightly to help regulate her sleep patterns.  At one point, right before we began the Clonidine, Rebekah was waking up as many as 20 times in a night!  And at least half of those times she would pull her oxygen off.  :(  We are trying to get her body used to the feel of sleeping through the night.  I have to say that we are improving.  Not perfect, but certainly improving!  Rebekah sleeps through the night, on average 2 or 3 nights a week, and the remaining nights she wakes up probably less than 5 times.

 Someone loves Fudge pops!

Since December (surgery), Rebekah has really grown considerably!  I think she was trying to make up for a year's worth of growth in a few months!  :)  She is more than three inches taller and at least five pounds heavier than she was before surgery.  Thankfully Rebekah has an older cousin who passes down clothes that she outgrows!  :)  For some reason, Rebekah actually went backwards in the last month and lost half a pound.  I'm hoping that we can contribute that to the cold that Rebekah had and that we see her weight bounce back up this month.

Our little fish!

In the last few weeks we have also seen Rebekah make good progress in her strength and endurance.  Rebekah has been working in the pool during her physical therapy time, and it has really paid off!  Rebekah can run and play for much longer periods of time before she gets winded or tired.  She is also doing really well at learning her limitation and knowing when she needs to take a break to rest.  About the only thing that Rebekah is still not doing consistently is stairs.  She still prefers someone to carry her up and down the stairs.  I think it just takes a lot of energy for her to do that.

 Sweet girl

Probably Rebekah's biggest challenge and obstacle right now is her speech.  It's not something I think about a lot because I am with her all the time and usually can understand most of what she says.  However, she is very difficult to understand in a quiet setting, and almost impossible to understand in a crowded environment.  Recently Rebekah was evaluated with our local school system and they found her speech to be significantly delayed.  As of now, Rebekah's left vocal cord is still paralyzed, which is contributing to her speech problems.  She also has articulation and phonemic delays, meaning that more than half of her words are either missing the beginning or ending sounds.  Her understanding of speech is excellent, though, so that is good news!

Rebekah continues to receive private speech therapy once a week.  Tomorrow we will have an IEP meeting with the school system and we anticipate, based on their evaluation and reports, that she will be offered speech therapy in a group setting once or twice a week in a local preschool.

 Silly girl

"The brothers" are all doing well and so happy that school is over for the summer!  They all did very well in their school work this year and are looking forward to a fun summer of swimming, playing, and visiting grandparents.  Friday begins our local library summer reading program, and they are already eager to get started.

Justin, Great Grammy, Rebekah, Zachary (back row),

Aaron and Caleb

Drew and I are also doing well.  I must admit, I was just as eager for summer vacation as the boys! :)  Teachers need a break also, right?!  Drew has an interview sometime next week (not sure of the day yet), and we are praying that it goes well and he is able to start full-time work again.   

And the littlest member of our family, formerly known as T6, is also doing well!  HE is growing, kicking, squirming and all-around being a boy!  :)  We are so excited that Rebekah will have a little brother, and she frequently pats my tummy and says hi to the baby.  At our 20 week ultrasound, everything looked completely normal - including the heart!  We will be having at least one more ultrasound at 29 weeks when he is a little bigger, just to make sure that everything still looks good.  I can't believe we will be meeting this little guy in about three months!

Rebekah "playing" piano.  

She even has to have books on the music rack!

I'll hopefully get another update posted sooner than the last one.  I'm thinking maybe things will get a little less hectic now that we are done with school, but that's probably wishful thinking, I'm sure.  :)

Nancy

Prayer

I know I should be in bed, but I really wanted to post a quick update to ask for prayer for three special babies at MUSC who are fighting hard tonight.

Bobby had a band placed on one of his pulmonary arteries last week Monday (this is the first surgery that Rebekah had done when she was a week old).  He had a great week, but has been struggling this weekend.  Today the doctors think that he has pneumonia and that his lungs are collapsing.  The situation is not good, and he is in critical condition.  Family is headed down to MUSC to be with Bobby and his parents.  I know they would desperately covet your prayers.

Jackson is the little boy whose parents we met the night Rebekah was supposed to be transferred to the step-down floor, but they didn't have a bed for her.  He was doing so well right after we left the PCICU, but took a bad turn shortly after that.  Just last week he had his FOURTH open heart surgery (since the week before Christmas).  Please pray for Jackson and his family.  They are weary and fearful for their son.

Martin is a beautiful baby born less than two weeks ago with HLHS.  He had his first stage surgery on Tuesday last week, and has been struggling to keep his oxygen levels in a good range.  His heart defect is vastly different from Rebekah's, but like Rebekah was before her second surgery, there is a "target" range for acceptable oxygen levels.  Too low and things are bad; too high and it causes other problems.  I know his parents would appreciate prayers for Martin, that the doctors could find a reason for his low oxygen and be able to get him to a safer level.

On a happy note, (not-so-little-anymore!!) baby Jude is doing very well!  He was upgraded to a bed by the window so he can start to get a feel for days and nights.  He has some pulmonary hypertension issues (like Rebekah), and the doctors are working with some medications to try to get that under control.  He was on pain medications for quite a while longer than Rebekah ever was, and he is struggling to wean off those meds. They tried a new medication this week to help "bridge" the gap off his old meds this week, and it seems to be working better.  His parents have also requested that we pray for him to regain his sucking reflex; right now he doesn't want anything to do with something in or near his mouth (not that I blame him, but it is kind of important that he get the hang of sucking a pacifier and/or bottle).

All four of these little guys (And, yes, they are all boys! Rebekah is outnumbered!!) are from the Greenville area, and we have connections to each of the families.  Some we are very close friends of the family; others are a friend-of-a-friend situation.  Regardless of how we came to know about each of these families, they are each close to our hearts, and tonight our hearts are heavy for our friends and the struggles they are facing with their little ones.  Please join us in prayer for each of these families.  Oh, and Rebekah has an early appointment with the sleep doctor for the results of her sleep study.  Please pray for wisdom and that we will know where to proceed with the results.

As always, we thank you for praying!

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

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

January!

Hi!  Here's the long-awaited update, and I have no excuse except that I've been busy enjoying being at home with all my family in the same place!  :)

Drew, Rebekah and I did make it to North Carolina to be with the boys and grandparents for Christmas.  The boys were thrilled to see their baby sister!  We arrived right at lunch time on Christmas Eve, and had barely carried our luggage inside when Rebekah fell and hit her head on an end table.  It bled, and bled, and bled.  We ended up taking her to an urgent care center where they put two staples in her head.  That was not a fun experience, but it was better than stitches!  I never could get her to hold still enough for a picture of the damage, but trust me, there are two staples under that big red bow!  Our pediatrician took them out last week in his office, and Rebekah didn't even cry!

 This was an attempt at getting a good 
Christmas picture of the kids together.

It was good except for Caleb deciding to
 pinch his nose with his fingers.

There's always one in every bunch!

So we had a very enjoyable time with friends and family for Christmas, and even took Rebekah to church at Beacon Baptist to see our friends there.

 Not sure what they are all looking at, 
but clearly I lost their interest! :)

Caleb, Justin, Rebekah, Zachary, and Aaron

 Is one out of five looking at the camera a bad record?!

 Aaron and Caleb

Rebekah had her second post-surgery follow up appointment with Dr. Lucas yesterday.  He is quite pleased with how Rebekah is doing from a cardiac standpoint!  Her heart function is looking great, and her pressures are staying about where they were when she came out of surgery.  Overall we couldn't be more pleased with how she is doing!

 Another attempt at getting a picture of all the kids. 

Zac decided he was tired and went to change clothes 

before I had a chance to drag him into the picture! :)

As far as a non-cardiac standpoint, Rebekah has a few hiccups we've been working through.  And, yes, she has been getting hiccups quite frequently - three or four times a day! They are so cute with her squeaky little voice!  :)

The biggest obstacle we are working on right now is getting a thickener for Rebekah's drinks. If you remember, Rebekah passed the swallow study at MUSC, but had a delayed swallow that they felt has always been unique to her.  Well, since we've been home, she has been choking and coughing with almost every liquid we have tried to give her.  Water, apple juice, grape juice, soda, and usually milk will all make her choke and cough unless she takes very, very tiny sips.  And it's almost impossible to reason with a 2 and 1/2 year old and make her understand that she needs to take very tiny sips.

 Justin, Rebekah and Aaron

After talking with Rebekah's pediatrician, we have decided that Rebekah needs to be drinking thickened liquids (honey consistency) for now, at least until we see some improvement in her vocal cord.  Dr. D didn't see any reason to repeat the swallow study since we know that obviously Rebekah is choking on her drinks and the swallow study will not change the method of treatment.  The decision was the easy part.  It has been crazy to try to find the thickener that she needs!!  Our pharmacy (Target) has not been able to get any for us yet, although they are still working on it.  Rebekah's DME (Apria) could possibly get it, but it's not covered by Medicaid, and they won't outright sell it to us.  Grrrr!!!!  Has anyone else had to get thickener for their child?  If so, what is the most cost effective way to purchase it? I did some online shopping and did find some, but I'm not really sure I want to invest in a large container/canister/packets until we find what works best for Rebekah.  I would love to hear from anyone else who has used this.  What worked best for you?  Favorite brands? Gel or powder?

 See, I told you there's one in every bunch.

Caleb just had to stick that balloon on the end of

his nose right before I snapped the picture. Nice.

Rebekah is still wearing her oxygen at night, and probably will be for a while.  Dr. L was ready to tell us that she could lose the oxygen altogether, but when I told him her sats dropped at night when the cannula happens to slip off, obviously that changed his mind.  :)  From what he can tell, there is no cardiac reason for Rebekah to be needing the oxygen at night, so it's time to look for another reason that she has become oxygen-dependent.

 Can you tell they've had enough of the camera?!

If you've been reading the blog for about a year (or more!) you might remember that we have discussed the possibility of Rebekah having some form of sleep apnea for quite a while now.  Dr. L said that it is now time to refer Rebekah to our local pediatric sleep medicine doctor for an evaluation and likely a sleep study.  It is possible that Rebekah has always had some sleep apnea, perhaps mild, that has been magnified by the damage done to her vocal cord.  Either way, Rebekah will be having an evaluation with Dr. G sometime in February to see if there is something else that we can be doing to help her sleep better.

 Bekah says enough of these silly boys! 

I'm out of here!!

Dr. L did not see any fluid on or around Rebekah's heart and lungs in her echo yesterday, so he told us to drop one of Rebekah's doses of Lasix.  She had been taking Lasix twice daily, but now we are only giving it in the mornings.  Yay!!  If Rebekah's next echo (in February) looks the same, he will give us the okay to drop Lasix altogether!!  That will be the first time ever in Rebekah's life that she will be off Lasix.  Wow!

This last picture deserves a paragraph all it's own.  Justin and Rebekah are bundled up to head out to Rebekah's doctor's appointments yesterday.  And, yes, it was COLD here - it was 22* when we were leaving!  (Okay, now that I look at the picture, maybe they were bundled up a little excessively! :)  Anyway, the hats and scarves are compliments of Grammy, and the mittens were made by Great Grammy in New York.  Thank you, Great Grammy!!  They fit perfectly and we all love them!!

Tomorrow morning Rebekah has an audiology appointment to recheck her hearing.  She has them every six months and will continue having them at least until she's close to her fourth birthday.  I'm glad to know that she is being followed by so many good doctors!

Nancy

Disappointed

Well, this has been quite a week! Monday morning Rebekah's EI (early interventionist) called and said her daughter was sick with a stomach bug. So, Rebekah had a day off from therapy! :) This week Tuesday should have been our Ladies' Bible Study at church (it's roughly every other week), but our teacher was sick, so that was cancelled as well. Then came Wednesday and cardiology. I'll get to that in a minute. This morning I got a phone call from Rebekah's OT (occupational therapist) who was running a fever and wasn't coming over today. What a mixed-up, inside-out, upside-down week! :) I'm glad we don't have anything scheduled for tomorrow!

Rebekah is "feeding" her babies.

I snapped these pictures post-cannula-incident,

so that's why she doesn't have her oxygen on. :)

Wednesday, dear Wednesday, where do I begin? Rebekah and I headed out to her cardiology appointment first thing in the morning. It was a routine visit, yet we were anxious to see if the weeks of oxygen therapy had lowered Rebekah's pulmonary pressures any. Once we arrived at the appointment, we went through all the preliminary stuff (height, weight, blood pressure, o2 sats - 100%!!, etc.), then we waited our turn to go to the echo lab. I was excited to have one of our favorite echo techs. Rebekah cooperated fairly well, and only got a little fussy at the very end. Then Dr. Lucas walked in. I knew when his first words were, "I'm not pleased with the results of Rebekah's echo," that it was all downhill from there.

Time for Baby #2 to have a drink.

We really need to come up with names for these babies!

Drew and I were very disappointed to learn that the oxygen therapy Rebekah has been on has not lowered her pulmonary pressures at all. As a matter of fact, Rebekah's pulmonary pressures are significantly higher than they were at our last appointment in December. Whether the oxygen helped and kept the pressures from going even higher, or whether it did nothing at all, we aren't sure at this point. But, just in case it is helping keep the pressures from getting any higher, Rebekah will continue to stay on oxygen until a decision has been made about where to go from here.

Oh, this little girl is so cute and sooo sweet!

Nope, I'm not biased at all! :)

So, the elephant in the room.....where do we go from here? That's a good question, and one we are waiting to have answered. Dr. Lucas was concerned enough to make a call to Charleston, and we are currently waiting to hear back from them. Rebekah already has a heart catheterization scheduled for March 7. It is likely that we will keep that appointment. However, Dr. Lucas does not want to be the one making that decision. He wanted to let Dr. Bradley and the surgical team in Charleston evaluate Rebekah's pressures and decide whether or not they are going to bump her cath date sooner. The only reason that we are not currently in Charleston at this moment is that Rebekah's heart, despite the ridiculously high pressures, is "happy." As long as Rebekah's heart is tolerating the increased pressure, then she is not in imminent danger of heart failure. If we begin seeing signs of heart failure (hopefully not!!), her case will begin to take precedence over other, more healthy children. There is a definite pecking order among heart patients. This is one pecking order that you would rather be on the bottom of! Those at the top are the most serious, critical cases, and that's never a good spot to be in!

Look at those curls!!

Okay, so once we get to Charleston (sometime between now and March 7), there are a few options for Rebekah. The first, and by far the best, is that the cath will reveal that the pressures are not as high as the echo is estimating them to be. The echo is a great tool, but it is not an exact measurement. Basically, it reads sound waves bouncing off blood flowing through the heart and gives a reading which is then translated into a formula to give a close estimation of the pressures in Rebekah's heart. During the cath procedure, there is a catheter that is inserted into the conduit in Rebekah's heart which gathers an exact measurement of the pressure. Even if the echo is estimating the pressures higher than what they really are, they would still be too high.

Just a side note here, Rebekah's blood pressure on Wednesday was 88/67. The 88 (top number) is the systolic. The 67 (bottom number) is the diastolic. Rebekah's pulmonary pressure should be somewhere between 1/3 (normal) and 1/2 (acceptable) of her systolic number. So, that would put her pulmonary pressure somewhere in the range of 29-44. Rebekah's estimated pressures on Wednesday were in the 90-100 range. So, even if the estimate was, say, 20 or even 30 points high, that would still be too high to be safe.

We are really beginning to suspect that Rebekah will be left-handed!

Since Rebekah's pulmonary pressures have been almost equal to (or sometimes greater than) her systolic pressure (also called systemic) since she came out of her last surgery, it is doubtful that there is anything that the doctors will be able to do in the cath lab to relieve that pressure. Do you remember almost exactly three months ago, I wrote this post detailing our conversation with Dr. Bradley about Rebekah's high pressure and the possibility of some narrowing around her conduit? Well, the result of that conversation was a trip to have a CT angiogram which showed no signs of narrowing anywhere around the conduit. That was good news. The bad news was that there was nothing to balloon or stent in the cath lab to open up the conduit more. It was wide open and still Rebekah's pressures were high. In that post, I wrote that Dr. Bradley told us his goal was to get Rebekah stable enough to come home and recover from surgery, and in about three months come back and re-open, or partially re-open, her VSD if her pressures were still high. That's where we're at, folks.

On the (all too infrequent) days that I scrub my kitchen floor,

the kids get to enjoy a tent in the living room.

Rebekah thought it was great fun!

One of the other concerns that Dr. Lucas and I talked about is Rebekah's restless sleeping patterns. She is no longer the great sleeper that we had before her last heart surgery. Now she tosses and turns, moans and groans all through the night. She is "asleep" during all of this, but it is obvious by the dark circles under her eyes that she is not getting quality sleep at night. One potential reason is that the pressures in Rebekah's heart keep her in a constant state of adrenaline. If you or I had a few cups of coffee every night before bed, it is likely that we would be very restless sleepers, as well!

The other possibility that we discussed for Rebekah's restless sleeping is that she may have sleep apnea. She does not have the classic "freight train" snoring of typical sleep apnea sufferers, but that alone does not rule out the possibility. Because of the atypical formation of Rebekah's palate and pharyngeal arch (basically the back of Rebekah's mouth and throat), it is quite possible that she does have a degree of sleep apnea. In fact, I just read an article this week, in the VCFS newsletter that documented the higher incidence of sleep apnea in children with DiGeorge and velocardiofacial syndromes. I won't bore you with all of the medical details, but in a nutshell, the physical formation of the mouth and throat, combined with low tone in the soft tissues of many kids with DiGeorge and VCFS, is a prime combination for sleep apnea. Once Rebekah's current heart issues are resolved, we will be referred for a sleep study if we do not see a dramatic increase in the quality of her sleep.

Such a sweet girl!

Drew and I are understandably disappointed by this week's findings. But we are so thankful to know that none of this took God by surprise. He knows Rebekah's heart. He made Rebekah's heart, and we can rest in Him, knowing that He loves Rebekah even more than we do. We are so blessed that God trusted us to care for our sweet baby girl. She is such a joy, even on days that she is not feeling well.

Our biggest request for now is wisdom. Please pray for wisdom for Dr. Bradley and each of the doctors that will be discussing Rebekah's care. Pray for Drew and I to have wisdom and discernment in Rebekah's care. It would be so easy to jump at every little sniffle or "off" day, thinking that Rebekah is showing signs of heart failure. Pray that we will know when Rebekah is just being a normal toddler and when we need to call the doctors.

In closing, Isaiah 25:1 has been on my heart this week. It so perfectly states what I have been reminding myself of all week.

O LORD, you are my God;

I will exalt you; I will praise your name,

for you have done wonderful things,

plans formed of old, faithful and sure.

~ Isaiah 25:1

Nancy

P. S. I just learned of a new little (unborn) baby who was recently diagnosed with Truncus. His name is Lukas, and his button is now on the left sidebar of Rebekah's blog. I know his family would appreciate your prayers as well. And, our sweet buddy, Owen, will be leaving Feb. 8 for a significant surgery that will determine whether he is a candidate for the next surgery he needs, or if he will need a heart transplant shortly. Please pray for Andrea and Owen as they fly, and especially for the surgery to go well. I sure hope you get to "meet Buzz Woody," too, Owen!!