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