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

65 Roses

Cystic Fibrosis, also called "65 Roses" by young children who have the disease. Try saying 65 Roses quickly - it sounds surprisingly like cystic fibrosis. It's chronic. It's ugly. It's incurable. And, thankfully, Rebekah's test came back negative. Yes, for the last four days, we have known that Rebekah could potentially have cystic fibrosis and that she would be tested for it this morning.

Rebekah has had chronic respiratory problems and chronic GI issues for months. Both are significant markers for cystic fibrosis (CF). Last week, we learned that Rebekah is outputting large amounts of fats in her stools. Also another indicator for CF. I'm sure you can imagine that we were very concerned about the test this morning. Because of Rebekah's compromised lungs and immune system, a chronic disease like CF would shorten her life span considerably.

We were shaken. I was terrified. How in the world would we deal with something like this on top of all of Rebekah's other health problems? But, in the end, Drew reminded us both that God has His hand on Rebekah. He made Rebekah just the way He wanted her to be. Whether or not she had CF, or some other kind of illness is no surprise to God. Our job is to love and care for our little girl for as long as God entrusts her to us. And when her job is done here, she will be in a much better place than we can even dream of.

Not that we wanted the test to be positive. But, we had a choice. We could choose to be upset and bitter that Rebekah could potentially have her life shortened and deal with this debilitating disease. Or, we could continue to trust God and His plan for our family. I think I can honestly say we came to the point that we were ready to accept the test results no matter what. Of course, we are joyfully praising God that He did not choose this road for us. But, if He had, we would be praising Him still, for trusting us with such a task.

We still do not know what is causing Rebekah to output such large amounts of diarrhea, nor why she has such a high fat content in her stool. There is one other test that should come back early next week that will show if she is lacking pancreatic enzymes. There are several different reasons for that as well, one of which is Crohn's disease. That is also a very unpleasant, lifelong disease. Based on the results of the enzyme test, we may have further testing done next week. The likelihood of all of this being related to a dairy protein allergy is getting slimmer the farther we go along. Rebekah has not had any breastmilk since last Wednesday, and we should begin to see some improvement by now. For sure we should see some improvement by the middle to the end of the week if it is dairy related.

This afternoon Rebekah has started to run a low-grade fever and has started retching. It could be something as simple as a little stomach bug; it could be caused by drainage that is irritating her stomach; it could be related to the diarrhea, but not likely since the diarrhea has been ongoing for so long. The doctors are keeping a close eye on Rebekah this afternoon to monitor her symptoms.

Even with all of this going on, home is a possibility. Obviously, if she continues to run a fever or have unexplained retching, that will put a hold on things, but if we are just waiting for test results, we will most certainly be allowed to wait at home. So my prayer is not that we will be at home, but that we will be in the right place. If Rebekah is fine, I would love to go home. However, if there is still something going on that needs to be monitored by the medical staff, I am content to wait here in the hospital with her until we have answers.

Thank you for all of your prayers, and please continue to pray that we find some answers to Rebekah's tummy problems.

Nancy

Incredible Story

http://www.express.co.uk/posts/view/159555/Baby-saved-by-a-remote-control

I saw this story on the 1in100 Facebook page, and what a story it is!! This is the exact surgery that Rebekah had, only she was not given the option of the remote control band. I can see where this would be a huge benefit! If we had this type of band, theoretically the surgeons could enlarge the band right now and postpone Rebekah's surgery a bit longer to give her collateral arteries a bit more time to grow. If you have a chance, read the story and also check out the 1in100 website. It is specifically dedicated to spreading awareness of CHD (congenital heart defects). The two primary goals of 1in100 right now are 1) advocating for pulse oximetry for each newborn, which can detect some types of CHD's, and 2) pushing for the manufacturing of pediatric heart devices, including valves and parts used to create arteries such as the one Rebekah will be getting. This is a great organization to support for their work!!

Nancy

Playing!

Sometimes it gets boring just laying in a hospital bed, so a girl's got to come up with something to do! Rebekah loves, loves, loves to play with her feet! Unless she is sleeping, you are guaranteed to find Rebekah playing with her toes, or chewing on them. :)

Rebekah playing with her toes and talking to me!

We have been making good use of our time, and working on some of our therapy goals. Mrs. Beth, we have been banging two objects together, no problem! We also bang them on the crib rails, on our toes, on our head and get them in our mouth! Just wanted to let you know in case you thought Bekah wasn't an overachiever!

Yep, I have the two-toy thing down cold!

Rebekah's hair is growing at an unbelievable rate! In doing some research this week (unrelated to hair growth, by the way) I found that kids with DiGeorge often have copious amounts of hair. I think Rebekah fits that picture!! We will have great fun with bows, pigtails and braids in our future. :)

Rebekah usually has a smile for the camera.

And, now, for the big surprise.....Rebekah is starting to sit on her own for a few brief seconds!!!!!! She has been doing very well sitting with me just giving a small amount of support, so I let her go to see what she would do. She actually sat for quite a few seconds, but by the time I grabbed the camera she flailed her arms out in a final balance before toppling. I'm so proud of our little fighter!

See, I can do it!!!!!

As far as all things medical, Rebekah is really about the same. She is having a bit more upper respiratory congestion (stuffy nose and sneezing) and more coughing today. Her lungs continue to sound excellent, though, so that is really good news.

I wish I could report that the diarrhea was getting better, but I can't. The GI doctors have run a host of tests, and unfortunately, most of them take days, not hours, for results. At the moment, Rebekah is not getting any breastmilk just in case the cause of her problems is a dairy protein allergy. I am still pumping and freezing the milk for use later. There is one more test that the doctors want to check and that one will be done on Monday. I don't know how long it will take to get the results back. All of these tests are checking for the amount of nutrients that Rebekah is absorbing. That will tell the doctors a lot about what is going on and how to treat it. Please pray for accurate results from all of this testing so that we know where to go from here.

Sitting up with the help of my toys!

That's the extent of the news from here. We're enjoying the beautiful sunshine after so many snowy/rainy/cloudy weekends in the last month or so.

Nancy

Another Day, Another Doctor!

Answers!!! We finally have answers!!! Well, we sort of have answers....maybe....at least a plan for finding some answers.....you get the idea. :)

Yesterday Rebekah ran a low-grade fever off and on all day. Her heart rate was consistently higher than her normal, and she continued to have explosive diarrhea....like a clothing and bed change every single time.

From a respiratory standpoint, Rebekah is much better. She has not had any more wheezing and almost no more coughing. If she has been crying a lot or agitated, she will cough, but for the most part, even that has stopped. The big question remained, though, why we can't keep Rebekah's oxygen sats up even on a liter of oxygen. And, no, we haven't been able to wean it down any. If it is turned down a little, we end up turning it back up to a liter within an hour or less. It appears that a liter of oxygen is just going to be Rebekah's new normal from now until her heart surgery. Her little body just can't seem to work without it.

Today our goal was to figure out what is causing Rebekah's GI problems. The c. diff was negative and the rotavirus was negative; that's a good thing! There are a few other things that are still being tested that will take a few days to come back. After meeting the GI doctor today, we are going to rework Rebekah's feeding plan. Again. The high-calorie formula that Rebekah is on may have proved to be too much for her system when on feeds around the clock. So, we are going back to nighttime-only continuous feeds. During the day, we are going to give the formula through the g-tube in thirty minutes (called a bolus feed) and then take Rebekah off the feeding pump for two and a half hours. This will be more like a bottle feeding and more like she is used to eating, without Rebekah having to expend the calories to drink from a bottle. We are also dropping the amount of calories that the formula contains so she doesn't get overloaded. If that goes well, we will add bottle feeding of breast milk back in gradually as she tolerates it. There is a possibility that Rebekah has developed a dairy protein allergy, but we really think she was just getting to much of a good thing with the high concentration of calories in the formula. The GI doctors visited the dairy allergy issue several months ago, but it turned out to be c. diff that time, so we were cleared. Personally, I don't think that is the issue this time, either. We'll wait and see how she does!

The doctors definitely want to keep Rebekah here in the hospital as long as she is still struggling with the diarrhea. They will be able to closely watch her to make sure she is not getting dehydrated. Once that clears up, we should be free to go as long as no other issues develop.

That's about all the news from here. Thank you for keeping Rebekah in our prayers and a special thanks to everyone who has helped out with the boys and with meals. You have no idea what a huge blessing that is to our family!

Nancy

The Plan of the Day

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

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

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

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

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

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

Rebekah hanging out with Daddy.

Rebekah and Aaron

Rebekah and Zachary

Justin and Rebekah

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

Rebekah was happy after seeing her Daddy and brothers.

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

Nancy

More of the same

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

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

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

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

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

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

Nancy

Thursday P.M. Edition

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

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

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

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

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

Nancy

Whirlwind!

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

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

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

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

Nancy

Hospital Again...

Rebekah and I are heading to the ER this afternoon. Her sats have not improved from yesterday, and she is laboring to breathe more. We are going to have some tests run, possibly another chest x-ray and a decision about where to go from here. I'm guessing we will at least be kept overnight while we try to get this respiratory illness under control.

Thanks for praying.

Nancy

CHD

What is a CHD???

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder,
Then asked, "What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, Aspirin, Captopril
It's wondering...Lord what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks.
It's feeding tubes, calories, needed weight gain
It's the drama of eating...and yes it's insane!
It's the first time I held her, I'd waited so long,
It's knowing that I need to help her grow strong.
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking her sats as the feeding pump's beeping
It's knowing that there is just no time for sleeping.
It's caths, x-rays and boo boos to kiss
It's normalacy I sometimes miss.
It's asking do her nails look blue?
It's cringing inside at what she's been through.
It's dozens of call to her pediatrician
He knows me by name, I'm a mom on a mission.
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser.
It's watching her sleeping; her breathing is steady.
It's surgery day and I'll never be ready.
It's handing her over, I'm still not prepared,
It's knowing that her heart must be repaired.
It's waiting for news on that long stressful day,
It's praying...it's hoping...that she'll be okay.
It's the wonderful friends with whom I've connected,
It's the bond that we share, it was so unexpected.
It's that long faded scar down my child's small chest,
It's touching it gently and knowing we're blessed.
It's watching her chasing a small butterfly,
It's the moment I realized I've stopped asking why.
It's the snowflakes that fall on a cold winter's day,
They remind me of those who aren't with us today.
It's the need to remember we're all in this plight,
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow,
It is finding the strength to have hope for tomorrow.
And no, we'll never be the same. It's changed our family,
This is what we face each day.

This is...a CHD.

**Written by Stephanie Husted (fellow heart mom)

Long Awaited Update

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

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

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

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

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

Zachary and Rebekah

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

Justin and Rebekah

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

Aaron and Rebekah

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

Caleb, Daddy and Rebekah

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

All dressed up!

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

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

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

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

Nancy

CHD Awareness

In honor of CHD (congenital heart defect) Awareness week, I wanted to post some facts that I found:

• According to the March of Dimes, congenital heart defects are the #1 birth defect. It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year. To put CHD in better statistics: about 10,830 babies are born each day and out of those babies about 411 are born with some sort of birth defect. Out of those 411, about 87 are born with CHD.

• Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

• More than 1 million American children and adults with Congenital Heart Defects and Childhood Onset Heart Disease are alive today.

• CHD is the most frequently occurring birth defect, and is the leading cause of birth-defect related deaths.

• Although some babies will be diagnosed at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHDs are not detected until adolescence or adulthood.

• Some CHDs may not require treatment other than periodic visits to a Pediatric Cardiologist. Others can be treated with medications or repaired with surgery and/or procedures. Complex defects may require several surgeries and are never really "cured."

• Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and Childhood Onset Heart Disease.

• It is estimated that more adults than children are living with congenital heart disease, and this population is expected to grow by 5% each year. Yet, many adults with CHD are not receiving adequate ongoing care from trained specialists.

In our family, CHD has affected 2 of our 5 children. Obviously, Rebekah has a complex CHD called Truncus Arteriosus, but her brother, Aaron, was also born with two mild heart murmurs that resolved themselves by his fourth birthday. CHD is much more common than you may think!
We are very thankful for all of the research that has been done for children like Rebekah with CHD. Thirty years ago, Rebekah would have been sent home with us after birth, and we would have been told to enjoy her for the few months that we were able to. She would have had a less than 10% chance of seeing her first birthday, let alone the rest of her life. The surgeons and doctors nationwide who give of their time and talents to help children with CHD have our utmost respect and appreciation. Thank you for all that you do!!

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