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

We're HOME!!!!

Rebekah was more than a little exited to hear the words "go bye-bye!"

She made some great friends with the doctors and nurses

in the last two days (when she was feeling better)

but she was eager to get in the car and go!

We had a very uneventful trip home.

And made it home just before dark.

Rebekah slept the entire way.

I drove...and drove.

Thank you all so much for your prayers.

We felt each and every one.

We love you all!

Drew and Nancy

Zachary and Justin

Aaron and Caleb

Rebekah Grace

The next post.....

.....will be from somewhere other than our hospital room!!!  We are packing up and getting ready to move out!  :)

Please pray for safety for Rebekah and I as we head to Greenville.  I am thankful that it looks like we will be leaving soon enough to get there before dark, or shortly after.  If you remember from our trip down here, I do NOT like driving in the dark.  So if you would pray that the remainder of the discharge paperwork and things that need to be completed will be done quickly, I would appreciate it!

Rebekah has spent the entire morning hanging out at the nurse's desk.  She loves her new friends as long as they don't have gloves or a medicine syringe in their hands!!  :)

See you later from our happy abode (I refuse to say the word, for fear that something will crop up at the last minute!!!  :)

Nancy

HOME

We arrived home safe and sound this afternoon. Rebekah did great on the trip home and is resting well. We hope to get lots of rest in the next few days as things some what return to normal.

Thanks for all the prayers.

D

Warm sunny sunday

Praise the Lord Rebekah has improved and was able to come home today. She still needs a few more days of rest, but seems to be on the mend.

We are enjoying the warm weather and a afternoon with all of us home and together again.

Thanks for Praying for our family and situation.

D

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

Three weeks!

I hope all of you had a wonderful Thanksgiving holiday! We definitely enjoyed ours! It has been nice to have the boys have a few days off school, but it is time for them to go back. Too many days off makes for restless little boys! We did get most of the Christmas decorations up, so that kept us busy for several hours.

Rebekah is doing very well, and for that we are so thankful. She is slowly starting to come back to the little girl that we had before surgery, which means that she is moving around and getting into mischief! :) We are pleased that she is feeling well enough to get into things, so we're not complaining!

I love my Oreo cookies!!

You can see from these cookie pictures how well Rebekah's scar is healing. It is definitely more red than it was prior to surgery, but unless you compared before and after pictures, you probably would not have guessed that Rebekah had surgery three weeks ago. The two sites where Rebekah's chest tubes were are still pretty big scabs, but we are very thankful that they did not get infected. For a few days after we got home they were quite raw and open. We very diligently slathered them with antibiotic ointment and changed the dressings frequently. While she will definitely have some scarring, I'm glad that the areas are healing finally.

Hmmm....where did my cookie go?

On the outside of Rebekah's heart scar, the skin was literally glued back together with Dermabond. It will make for a much smaller, smoother scar than if there had been stitches on the outside. Underneath her skin, there is a running zig-zag stitch starting at the top and working down to the bottom. Dr. Bradley used a material that is dissolvable, so over time the stitches will disappear.

Mmmmm....that was good! May I have seconds??

Rebekah had a good check-up with our Greenville cardiologist. He said that echocardiograms are a very subjective measure of heart function, so he can't really tell us how the function of the right side of Rebekah's heart is doing compared to how it was in Charleston. He did feel, however, that the function of the right side was at least in the low-normal range. We are all hoping that the function will improve over time.

As far as Rebekah's pressure, it has come down some according to the echo. Again, the echo is not a perfect measure, but it at least would give us an idea if it was getting drastically higher. We certainly hope that the pressures are coming down as the echo has indicated. Dr. Lucas will continue to watch the pressure here, and we will get a true reading during Rebekah's heart catheterization in March.

Daddy and his little pumpkin!

One exciting piece of information that Dr. Lucas gave us is that he intends to wean Rebekah's lasix dose over the next few months. Rebekah has been on Lasix since birth, but Dr. Lucas feels that if she continues to keep the fluid off her heart and lungs, then he sees no reason to continue the medication. On Rebekah's next visit she will have another echo and a chest x-ray. If it all looks good, we will be dropping one of her two daily doses. We will continue giving Rebekah one dose of Lasix per day for a few months till we see how her body tolerates the missed doses. If all goes well, Rebekah could be off Lasix by spring!

I love my new music toy from Aunt Aimee!

Rebekah is making steady progress back to the physical activities she was doing prior to surgery. One of the best things has been this little music toy. Rebekah loves to be a big girl and sit on the bench by herself. She has been able to maintain fairly good balance for twenty or thirty minutes at a time. There are shapes that light up and play music when Rebekah pushes them. Rebekah loves music, so this is the perfect toy for her! Dr. Lucas felt that Rebekah's stander could put too much pressure on her chest, so we are holding off on that for now. Rebekah has been in her walker several times, though, and she is taking 5 or 6 steps with someone holding on to her waist for balance.

My dimples are finally back!

For now Dr. Lucas is holding off on resuming Rebekah's therapies. He wants to give her chest a little more time to heal so that therapy will not stress or hurt her. When Rebekah has her next appointment in December, he will re-evaluate therapy based on how well she is doing.

Rebekah's piano concerto!

I finally have my computer up and running now! I downloaded over 400 pictures for the month, and I am working on editing them. When I get them done, I am planning to post pictures from Rebekah's hospital stay in their chronological order. I will be sure to link to those pictures so that you can view them if you wish. We looked back at the pictures last night and were amazed at how far Rebekah has come in three weeks. Sometimes it seems like she is slow to make progress, or that she lost some skills during her hospitalization and has not yet gained them back, but the progress she has made is astounding. We have much to be thankful for this year!!

Nancy

Pictures!!

Just a quick update with a few pictures of Rebekah and her brothers. We have been busy this weekend catching up on things that needed attention and just having fun together. We spent a couple of hours last night playing Wii together, and the boys are still talking about it today. I think the over all favorite game was fencing, but we also had fun with the wakeboarding and canoeing.

Caleb had hugs for his baby sister when we got home.

Yesterday Rebekah went to see her pediatrician, and he said she looks great! The only comment he made was that she had quite the heart sounds now - much more than he can distinguish! I guess she has several loud murmurs from the conduit and trunk. He did mention that her heart rate is quite high, which we knew before leaving the hospital. It goes along with the high pressure that she now has.

Rebekah's brothers were SO excited to have her back home!

This week is going to be a busy one with family all coming to see Rebekah. Oh, and coming for Thanksgiving, too! :) I think that's the excuse, but we all know the real reason is to see Rebekah and the boys.

Zac and Aaron with Rebekah

Before we know it Christmas will be here! The holidays will be especially fun this year with Rebekah. We are certainly going to enjoy this holiday season, not knowing what the new year may bring with a heart cath and possible surgery.

Pigtails!!

While I went grocery shopping this morning, Daddy got creative with Rebekah's hair! We have talked about Rebekah's hair being long enough for little pigtails or ponytails, but this was the first time for pigtails. I thought it looked cute!

Hope you all enjoy the rest of your weekend. I know we will!

Nancy

Home Home Home

The 24 hour clock has run out and the verdict is we are going HOME. Mom and Rebekah are all packed and unplugged from the monitors. They just need to see one last Dr. on rounds then they will be free to head home.

We will have quite a surprise for the boys when they get home from school today.

Praise the Lord that Rebekah has done so well and that she is able to come home. Thank you to all of you who faithfully pray for her and our family. We can see God working and guiding us along this journey with Rebekah.

D

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.

We are home!!

We are glad to all be at home. Rebekah is a good little traveler. We are all tired and needing some rest. We are crashing and will post some more about our trip when we have time this weekend. The swallow study did not turn up anything out side of normal.

Thank you all for your prayers and support.

D

Belated Update!

I will preface this post with a disclaimer: Mommies do not get sick days! :) Yes, I have been fighting a bad head cold for a couple of days now and feel absolutely miserable. Daddy has done a great job this morning so I could have a few hours to rest. Now for the update!

Rebekah was released from the hospital late Wednesday afternoon. She showed quite a bit of improvement in both her fever and disposition after being on the antibiotic for her ear infection. She will be on the antibiotic for another week or so.

Rebekah has also had an increase in the amount of Zantac she takes to control her GERD (reflux). One thought is that the reflux has been contributing to the retching and gagging we have seen for the last week or so. So far today we have not seen any episodes of gagging, so we are hoping that the increase in Zantac is actually working. It would be nice if that is all it takes to solve that problem! :)

On the respiratory front, Rebekah seems to be good somewhere between a half liter and a liter of oxygen. All of the doctors involved agree that she will probably be on some amount of oxygen until her heart repair. We have a follow-up visit with the pulmonologist on Tuesday.

Now for the GI issues. We have seen some decrease in the amount and frequency of diarrhea that Rebekah has been having. The pancreatic enzyme test that she had was normal, so that ruled out several things, including Crohn's disease. Yeah! We were excited to cross that off the list! We are repeating some other tests this week to try to determine whether or not the dairy protein allergy is the culprit that we are dealing with. It is possible that Tuesday or Wednesday we will get clearance to begin feeding Rebekah breast milk again (the dairy-free variety! :). Then the tests will be repeated on Thursday and Friday to see if she is tolerating the new dairy-free diet. If so, we will be able to keep on with the dairy-free breastmilk. If her symptoms get worse or other symptoms develop, Rebekah will probably have an endoscopy next week while we are in Charleston for her heart catheterization.

The boys are thrilled to have Mommy and Rebekah at home. They love to play with Rebekah and try to get her to smile for them. Zachary is becoming very safety conscious with Rebekah. He makes sure to keep the rails up on her crib, watches that Rebekah is not chewing or choking on her tubing and enjoys taking care of Rebekah in general.

Sorry for the lack of pictures. I have some, just don't have the energy to get them posted today. Hopefully I will be back to feeling better soon! Thanks for all of your prayers!

Nancy

Home sweet home.....Almost

I was hoping to have a different post for you this morning. One that talked about how we packed up all of our belongings and took them home. However, it seems Miss Rebekah had different plans. Maybe she heard that her favorite nurse would be back today and wanted to see her one more time. :)

Regardless of the reason, we are still at the hospital. We were seriously within hours of being discharged when Rebekah's temperature climbed and she started retching and gagging. We still have no explanation for the gagging, but did find out that the temperature is due to an ear infection.

The doctor on call Sunday had checked Rebekah's ears and considered the possibility that Rebekah may have an ear infection, but no one wanted to jump to antibiotics too quickly, given Rebekah's problems with c. diff. However, after two days, the ears seem to be worse, not better, so we plunged ahead with amoxicillan. Hopefully it won't cause a relapse of the c. diff!!

All of that said, it is possible, not even probable or likely, just possible that we may get to go home later today. If we do, great!! If not, I'll be typing another similar post tomorrow morning! :) Enjoy your day everyone!

Nancy

New Routine

We are back at home and trying to settle into a new routine. It is probably one of the hardest adjustments I have had to make. With Rebekah's feeding and medication schedule, I am up quite a bit at night and do not have the luxury of naps or sleeping in later in the morning. Just something else we are working out!

I have pictures of the boys with Rebekah right after we got home, but, honestly, I am too tired to get them uploaded and posted. So, I will hopefully get them up tomorrow.

Rebekah is doing about the same. She still has a lingering cough that we are trying to get rid of. Her feeding is going well, and the g-tube is still working well. She has been more fussy today for no reason that we can determine.

I'm off to bed to try to catch up on some sleep. Keep praying for us and for Rebekah!

Nancy

We're Heading Home!!

It's official...the paperwork has been signed....the oxygen has been delivered....the prescriptions have been written.....and we are going home!!!

I am so excited that we are going to all be back together again. The boys will be able to play with their sister, something they haven't done in three weeks!! But, it will come with its challenges. Rebekah is going home on oxygen, she is going home on around-the-clock breathing treatments and some new medications. It has been relatively easy here at the hospital to have an entire team of doctors, nurses, patient care technicians, and respiratory therapists all helping out with that care. At home, it will be Drew and I doing the work of that entire team. It will be busy, but at least we will be busy in our own home all together!

Please pray for safe travel for Drew as he comes to get us and then as we get home. The major roads have pretty much been cleared, but the secondary roads are still very icy from what I've heard. We will also have to stop at the pharmacy to get Rebekah's new medications.

Hope you are all having a great day! If it is a little while before you hear from us again, just know that we are at home enjoying being back together again!

Nancy

We're Done!

Rebekah did a great job during her procedure today! We went with her to the OR around 10:00 and had to just a few minutes for the OR to be available. The nurses and anesthetists wheeled Rebekah's crib into the OR, and Drew and I came back upstairs to her room to wait. We were probably in her room about 30 minutes and Dr. Abrams called to say he was all done!

The night before surgery.

Dr. Abrams was pleased with how well everything went. He did use the MINI One g-tube that had been ordered for Rebekah. It fit perfectly, but he was a little concerned about watching to make sure it doesn't get too tight as she grows. Dr. Saad (the surgeon we had seen in the office two weeks ago) did mention the same thing, but his plan was to order the next larger size as our "spare" and then we would have it on hand when we needed to change it. The MINI is a 16 FR (16 French, which is the diameter of the tube itself. The Mic-key was a 14 FR and was too small in her opening.) and it is 1.2 cm (The Mic-key was 1.5 cm.). As you can see, there was a big difference in size from the one Rebekah had been using to the new one. We hope that makes a big difference in how well it fits and works!

Less than thirty minutes before surgery. Rebekah was hungry and sucking on a pacifier - something she almost never does!

The anesthesiologist had no trouble inserting the tube for the ventilator, and Rebekah did so well that they removed the tube and vent before we ever saw her in recovery. When we came downstairs to meet her in recovery, she was sitting in a rocking share with a very sweet nurse's assistant. Rebekah was so comfortable and relaxed that we just let her stay there while we waited the required 30 minutes before we could bring her back up to the room.

In recovery, post-op

Rebekah was a little fussy when we got back to her room, mostly from having woken up during the ride back, I think. We were able to give her Tylenol and her noon meds and then she calmed down and drank about two and a half ounces of breast milk. She was awake for a little while and has been sleeping ever since. The plan for the afternoon is to let her sleep and eat when she wants and then to use the g-tube for her overnight feeds. If all goes well, we could be looking at leaving tomorrow!

Thank you everyone for keeping Rebekah in your thoughts and prayers today. The procedure could not possibly have gone better. We are praising God for guiding the doctors and anesthetists during the procedure and for the good outcome.

Nancy

Rumor

Rumor has it that Miss Rebekah will be going home tomorrow....just in time for Christmas! She has been showing steady improvement, and the doctors feel that she is well enough to go.

We will be feeding Rebekah through her g-tube during the night when we are home. It is an attempt to decrease the work her heart is currently doing while eating. So at least half of her daily intake will occur overnight. That will take a little getting used to for all of us as Rebekah had previously been sleeping through the night. Actually, she will probably still sleep through the night. I will be the one setting an alarm to add more formula to the pump. It will be good for Rebekah, though, to have the extra calories without working for them.

Rebekah also received her first Synagis shot last night. She will receive this series of shots monthly for the next several months. Synagis is used as a protection against the RSV virus, which could be fatal for Rebekah. RSV is a normal cold for most adults and children over the age of 2, but for premature babies, or those with other heart and lung problems, RSV would cause a severe risk from complications and even death.

After being discharged from the hospital, Rebekah will have several appointments in the next couple of weeks. She will be seeing her cardiologist for a follow-up visit to make sure her heart and lungs are still working well. We will be having an appointment with her gastroenterologist and possibly another night in the hospital for some additional tests if they feel that is necessary. Rebekah has been struggling with GI issues (diarrhea and lack of weight gain) off and on for the last couple of months, and we all feel that it is time to do some further testing to see what might be going on. We will be back to our dietitian for a weight check again, and we will be seeing the pediatric surgeon's office here to have a new type of g-tube placed. We have had several problems with the Mic-key button that Rebekah has and she is currently using her third one in about seven weeks. Mic-key buttons should last between three and four months, but Rebekah's are only lasting about two weeks before they develop a leak and deflate. I had a consult with a resident from the pediatric surgeon's office on Monday, and they recommended a different type of g-tube that does not have a balloon on the end. For some reason, they have exactly the same type of problem that Rebekah has had with most of the babies that have the Mic-key button.

Also in January, we have follow-up appointments with Rebekah's pediatrician, endocrinologist, infectious disease doctor and geneticist. Sometime in the next few months, Rebekah will be referred to an opthamologist and an ENT or audiologist to have her vision and hearing checked. I think January will be a busy month!

Please continue to pray that Rebekah rebounds from this illness and that she and her brothers (and parents!) will be able to stay well this winter. The three older boys all came down with strep throat while we were in the hospital, so thankfully Rebekah was not around them. They have been on antibiotics and are hopefully on the mend now.

We are looking forward to spending Rebekah's first Christmas at home!!

Nancy

The Daily News

The good news is......there isn't much news to report! Rebekah had an eventful night, only because the doctors from cardiology and the doctors from pediatric surgery couldn't agree on a "safe" range for Rebekah's oxygen saturation levels. So for a while we were riding back and forth between going back on oxygen and staying off (just oxygen through a nasal cannula like she was on in the picture below, not back on the ventilator).

Rebekah on Tuesday morning after moving to the step-down unit.

So far, Rebekah has tolerated her feedings very well. As a matter of fact, when we met with Dr. Hebra, her g-tube surgeon, the two things he told us to most certainly expect were that Rebekah would not be eating by mouth for 3-4 weeks post-surgery and that she would not be able to burp. We have been "burping" her g-tube, which basically amounts to letting air out of her tummy. Rebekah has now had every feeding but one by mouth (and LOTS of milk at each feeding compared to what she had been eating before) and she has burped twice, once all on her own without me patting her back. So, no offense to anyone, but sometimes this little girl just has her own plans no matter what the doctors say! :)

Rebekah this morning in the step-down unit.

This just in......we are now packed and ready to leave!! Rebekah has been discharged and we should be home late this afternoon. We will be coming back in two weeks for a one-day clinic (like a doctor's appointment) for Dr. Hebra to check on Rebekah's Nissen and make sure all is going well.

Rebekah sends her love to you all!!

Nancy

Settling In

As you can well imagine, we have been busy trying to settle in and get things back to normal, or at least for us, a new normal. As normal as can be with the addition of a small female into a house full of small males, that is!! :)

Rebekah all dressed up for her first pediatrician's appointment.

Friday morning Rebekah had her first visit with our pediatrician. We were excited to show her off! Rebekah weighed in at 6 pounds and 5 ounces, so she has gained a few ounces since her discharge (or there is a slight difference in the scales!). We prefer to think she gained a few ounces. ;)

Rebekah will be referred to a geneticist to follow her DiGeorge syndrome, as well as an endocrinologist to advise us on a list of potential scenarios that might come up due to DiGeorge. Some of what the endocrinologist will be watching includes Rebekah's calcium and potassium levels, her growth, and her thyroid and parathyroid glands. The parathyroid is also involved in the immune system as it produces T-cells which are building blocks of the immune system. There is also a good chance that Rebekah will add several other specialists to her lineup, but we are starting with these. Oh, and she will also receive speech and occupational therapy to continue working on building up her endurance during eating and to get a head start on any potential developmental delays that may come from her hospital stay and surgery and from the DiGeorge syndrome.

My first tub bath!

Rebekah had her first bath in a "real" bath tub! Because of her healing incision, we could not giver her more than a sponge bath in the hospital. But as long as we don't let her soak in water that covers her incision, we are able to bathe her in an infant bath tub. She wasn't very sure of it at first, but she likes having her hair washed.

Rebekah in her swing - she's studying the toys.

We had been warned that Rebekah may have an adjustment to being home after her long hospital stay, and especially that it might be hard for her to sleep at night. In the hospital, there is always some level of light, although it was much dimmer when she moved to the step-down unit. And there is constant activity of monitors beeping, people talking, doors opening and closing and nurses coming to check in. After all of that activity for almost four weeks, we were not sure how she would do at home in a relatively quiet setting. If you don't count the boys, that is! Thankfully, Rebekah has done very well. She sleeps in her own crib in her own room with only a night light on. We do have a monitor in her crib so we can hear her, but she has done just fine. She can even sleep through her brothers' loud and rambunctious playing!!

Zachary loves to help with Rebekah; he even changes diapers (with supervision) and enjoys picking out Rebekah's outfits!!

Justin is very protective of his sister and usually anticipates what will make her more comfortable.

Aaron loves to hold Rebekah and is taking hand washing VERY seriously!

Caleb is the most fun to watch. He wants to touch "Dekah" and is fascinated when he hears her crying. He did a little happy dance when he got home and saw her.

Watching all of my brothers is hard work!

This week will prove to be a busy one as we get back into our regular schedule. Rebekah has her first cardiology visit on Tuesday, and we are hoping that everything looks good. She is doing well with her eating, but we feel that she maybe could do a little better. Her system seems to be slow in emptying and it seems like things get backed up with an eventual spit-up eruption. She also wants to sleep about six hours straight at night (Mommy is not complaining!) but we are having a hard time getting in the extra calories from that missed feeding during the day. Rebekah just gets tired out from eating, and sometimes she tires before she finishes all of what she needs. Please pray specifically that she will build up some endurance and be able to take all of what she needs from a bottle. The next step is a feeding tube, and we don't want to go that route if we don't have to!

More pictures and updates to come later....right now the little girl needs her next bottle! :)

Nancy

Big Praise - WE ARE HOME!!

We have some wonderful news to share! The Lord is great. Rebekah is doing so well that the doctors sent us home yesterday evening. All three of us were so pleased to be home and sleeping in our own beds.

We would love to see everyone and want to share our little miracle with all of you, but due to Rebekah's health needs, the doctors have asked us not to expose her to a lot of being around people for a few weeks. So we are asking that you not visit just yet, especially if you have been sick or have been around someone else that is sick. We have so many of you that we want to see and share Rebekah with, but we just need to give her all the chances we can to stay healthy and growing to prepare for the next surgery. We are pleased she is doing so well, but have to remember that she still needs her heart and lung fixed soon.

We thank all of you for the prayers and support that have gotten us through the first few weeks. We can't wait to share Rebekah with you and we hope that you continue to pray for her as we take the next steps in this adventure in Rebekah's life.

We should have the boys home tomorrow and then we will be a family again. I am excited to see how they will interact with Rebekah now that there are no wires and tubes attached. Sister is finally here and at home to complicate their lives.

We are so blessed with all of our kids and thank the Lord for five wonderful gifts to take care of.

D

P. S.-If you didn't catch it on our family blog, I have a 3rd interview on Wednesday next week. Lots of praises today.