Crazy Day!

Wow! Last night I was so excited that Rebekah had just one doctor's appointment today, and we ended up having four today! C-R-A-Z-Y! But that's how we roll around here, so we're pretty used to it! :)

Little Miss holding Daddy's hand...so sweet!

If you saw Drew's post earlier today, you know that we have been concerned about Rebekah's eating over the last few weeks. This is really not a new concern (Rebekah has never eaten well.), but we were seeing a definite decline in even the small amount of oral eating that Rebekah had been doing. To the point that yesterday the only thing she ate all day was a pretzel. And a small one at that.

When Rebekah got up this morning, she was chipper and perky, but by the time we got out of the shower she was ready to cuddle on Daddy's lap in the rocking chair. We could tell that she wanted to be up and playing, but just didn't have the energy. So after talking it over, I made a few phone calls to doctor's offices when they opened this morning.

Cute little girl dressed up for church.

Of course, Dr. L wanted to see Rebekah this morning, so we scheduled an appointment and off we went to our original appointment - Rebekah's biannual eye exam. We got good news there! Rebekah's eyes are the least of our concern! :) Her ptosis is about the same and does not seem to be affecting her field of vision any. The doctor did say she is mildly nearsighted and may benefit from glasses in the future, but it is just something to watch for now. It may become more of an issue when Rebekah is in school and needs to see things further away.

Mommy played with Bekah's hair.

It's two small braids ending with the bow in the back - cute!

After the eye exam we made a quick stop at Rebekah's GI office to have an "official" weight check. I was really concerned that she might be losing weight because she has not eaten much at all recently. Thankfully (due to the g-tube feedings) Rebekah has actually gained a tiny smidge of weight in the last two weeks! At least we are on top of this before Rebekah started to go negative in the weight department. That made me feel much better.

Such a sweet girl!

So after we went to GI we headed upstairs to see Dr. L. He was obviously concerned about Rebekah's fatigue and lack of eating, but as far as he can tell Rebekah's heart function has remained unchanged since her last visit. He is really hoping that the cath on August 16 will provide us with some very good answers for all of these questions. While we were talking, Rebekah was "singing" a little "la-la-la" song that she likes to do. As she was sticking her tongue out singing, I notice a raw-looking area on the right side of her tongue. I asked Dr. L about it, and he gave us a one-way ticket to the pediatrician to get it checked out. Dr. L was concerned that perhaps it was a virus of some sort causing ulcers in Rebekah's mouth.

Off to the pediatrician we went (with a short stop at home for lunch). Rebekah was so patient while Dr. D checked all over her tongue, mouth and throat. He felt her liver and asked a bunch of questions. Bottom line is that Rebekah has absolutely no signs or symptoms of having a virus. She has not had a fever, GI issues, or even so much as a runny nose! After checking Rebekah's tongue again, Dr. D concluded that Rebekah has bitten her tongue at some point (maybe more than once) and that it is swollen and she is probably unintentionally biting again and again when she tries to eat. Poor baby! No wonder she hasn't wanted to eat any food! We aren't exactly sure when the original injury occurred; it could have been any one of several times when she fell over the last couple of weeks, or it could truly have begun as an accidental biting while she was eating at some point. We won't ever know, but thankfully we are able to watch it now. Dr. D instructed us to give Tylenol or Motrin every 4-6 hours, making sure she has it before meals. Also after a little bit of discussion, we decided to try a small amount of lidocaine dabbed onto the raw area on Rebekah's tongue. It will numb her tongue so hopefully it won't hurt her so much when she eats. Dr. D hopes that we will see improvement by the end of this week. If we haven't seen a huge improvement by next week, he will probably have us check in with Rebekah's dentist to see if there is some other oral thing going on. We're hoping not!

Dr. D wanted to see Rebekah dancing.

This one is for you! :)

So that was our crazy, busy day! I'm glad not all days are like this! :) Tomorrow we are taking Justin to Rebekah's orthotist to be fitted for some AFO's (inserts to go into his shoes to support his arches) and then we are heading to Rebekah's therapy. Then home for a few hours before church tomorrow night.

Please keep praying for Rebekah's heart catheterization as you think of it. At this point, I'm just hoping for some kind of answers to all the fatigue we've been seeing. And remember to mark your calenders for the rescheduled cruise-in date of August 20; it will be here before we know it!

Nancy

Rebekah Update and Easter Pictures

Wow! I thought we were ready for spring, but I must have missed it somewhere and gotten summer instead! :) We have had temperatures around 90 in the last couple of days. At least we are supposed to get some rain tomorrow and hopefully some cooler temperatures.

If you have noticed a lack of updates, it is because there has been a lack of news to update! Rebekah has done so well lately that we are all amazed! In the last three weeks, our family has had sinus infections, respiratory infections, ear infections, swollen tonsils and a stomach virus. We praise the Lord that Rebekah was spared from all of those illnesses! She has not needed any oxygen for about three weeks, and her oxygen sats have remained stable in the 80's.

Rebekah and Daddy playing peek-a-boo.

Rebekah had a check-up with her GI doctor today, and the doctor was amazed at how good Rebekah looks. She kept saying over and over, "I have never seen Rebekah look this good." Music to this Mommy's ears!! Rebekah is now 13 pounds and 5 ounces and still hanging out around 24 and 3/4 inches long. She is showing steady weight gain, so the only change in the amount of food she is getting is that we are increasing her overnight feeds just a little to keep up with her weight gain.

Rebekah and biggest brother, Zachary.

The other feeding change (and a BIG one!) is that Rebekah is officially not allergic to dairy products! Drew and I have felt that this was the case from the beginning, but doctor after doctor kept insisting that she must have a dairy allergy or some other type of allergy. Rebekah has been eating baby food for almost a month now, and for almost a month she has been diarrhea-free. As a matter of fact, she has struggled a little bit with constipation now, but nothing that a bit of juice hasn't cured!

We have the green light to continue feeding Rebekah baby foods as we would normally feed a baby - adding in things like cheese and yogurt. Rebekah already loves the foods she has had so far - pears, applesauce, bananas, green peas, carrots, acorn and butternut squash, and sweet potatoes. Of course, Daddy has indulged her in a few bites of ice cream which she also loves. A girl after Mommy's own heart! :)

You can dress me up, but I can still be silly! :)

We will be going back to the GI doctor the week before Rebekah's first birthday for a change in formula. Not that there is anything "magical" about being a year old versus being eleven months and 29 days old, but apparently doctors don't cross that line. Once Rebekah is a year old, she will be able to have Pediasure, which is mixed to a higher calorie concentration. It is also a little bit better tasting than what she is on right now. The goal is to have Rebekah start taking more by mouth and less by g-tube so that sometime in her first year she can transition completely over to oral feeding and no longer have any use for the g-tube. I like that goal! It has been nice, though, to be able to feed her without the stress of getting everything down orally. And it has been a life saver when it comes to medications! But, we will gladly deal with giving medications orally when Rebekah is able to be done with the g-tube.

Zachary, Aaron and Rebekah

You might be wondering why we don't have a family picture, or at least one of all the kids, from Easter. We had great intentions, but Justin got sick after church, so he was out of commission. Caleb was tired and cranky and was not having any part of pictures, so that left Zachary, Aaron and Rebekah. We will have to recreate our Easter outfits another Sunday and try to get a few pictures. :)

Our beautiful baby girl

Rebekah has her nine month check-up tomorrow. I know we will be discussing referrals for both vision and hearing evaluations. I'm not sure what else (if anything) we will be covering. Rebekah is doing so well that it isn't necessary to have long, drawn-out visits with each doctor, so that makes it nice! We will also be seeing the cardiologist and the immunologist before the end of the month for follow-up visits.

Rebekah talking to us. Listen for "da-da."

That about wraps up our last week or so. We are hoping with the warmer weather that we can get rid of all the germs and sickness for a long while! Continue to pray for Rebekah that she will stay healthy and grow stronger. Also, please keep praying that her collaterals will grow - we know that all things are possible with God!

Nancy

We're Back!

What a long trip we had yesterday to Charleston and back! It was a little after eleven last night when we got home, and we were tired! Drew and I and the boys all have colds, so that made the trip a little less pleasant than it otherwise might have been, but overall it was a good trip.

The longest part of the entire procedure was trying to gain IV access so the radiologist could inject the dye needed for the contrast during the CT scan. It took a little over an hour and five sticks before the surgeon's assistant finally was able to access a vein in Rebekah's wrist. What an ordeal! The nurse had given Rebekah a little Versed to calm her before we started, and by the time we finished it had long since worn off. She was also given sedation through her IV before the CT scan was started so that she would be still, so she slept right through the scan and the ultrasound a little later.

The good news is that the radiologist was able to get all of the information that the surgeon needed to make a decision about Rebekah's next heart surgery. The bad news is that the information was exactly what we had been told to expect - no usable collaterals. Rebekah does have some collateral arteries, but they are very, very tiny and not something the surgeon would be able to do anything with. We haven't heard the official word from the surgeon, but based on what our cardiologist shared at Rebekah's last visit, we are pretty sure that the surgeon will be postponing Rebekah's heart repair indefinitely. The two deciding factors for heart surgery will be 1) Rebekah begins to outgrow (in size) the band on her left pulmonary artery and her oxygen sats get progressively lower, or 2) Rebekah begins to show signs of heart failure at which point surgery will become necessary. Until either of those scenarios occurs, we are pretty sure that Rebekah's surgeon will not schedule surgery. At this point, it could be many months before she would need surgery.

The ultrasound of Rebekah's leg/groin area was as we expected. The doctors wanted a good look at the fistula in Rebekah's left leg as well as information about accessibility in both legs for another potential catheterization in the future. The technician performing the ultrasound did not say much, but I did see the fistula still there (although it no longer affects her circulation in that leg). I have no idea what kind of narrowing she saw in the arteries that may or may not affect further catheterizations. I imagine we'll hear from Rebekah's cardiologist later if they found anything significant.

That's about the extent of our trip to Charleston. We are very thankful that it went well and grateful for all of your prayers. We are not planning on church tomorrow as all of us are still sniffing, coughing and have sore throats. No need to spread that around! Please pray that we can get over these colds and that Rebekah does not come down with it!

Nancy

Why do something when you can wait?

While it sounds a bit unconventional in everyday life, I am pleased that this is the philosophy that Rebekah's surgeon and doctors have decided to use in regards to her heart surgery.

Drew and I (and Rebekah) met with Dr. Lucas yesterday (Wednesday) to discuss the results of the catheterization that Rebekah had two weeks ago. While we knew that the doctor did not get all of the results that he wanted, we did not realize how little he got. I think I mentioned on here at the time of the cath that the doctor was not able to gain access into Rebekah's artery in her right leg/groin area. We didn't realize that was such a big deal until yesterday. Basically, the doctors only got half of the information they were looking for since they could only go through one artery.

I like to play in my exersaucer!

From what information they did get at the cath, it does not appear that Rebekah has any usable collateral arteries to create a right pulmonary artery with. Dr. Baker, who did the heart cath, had told us that Rebekah would likely go into her heart surgery without a sure plan of whether or not those collaterals would be usable. When the surgery was completed, the surgeon would be able to tell us that he either was able to use the collaterals or he wasn't. That simple. Or not.

My first bite of ice cream....yummy!! (Please excuse the bedhead!)

Apparently Dr. Bradley (surgeon) wants a more definite game plan before going into surgery with Rebekah, so we are traveling back to Charleston tomorrow (Friday) for a CT angiogram and an ultrasound of Rebekah's groin. The CT scan will hopefully give the doctors and surgeon a better idea of the growth (or non-growth) of Rebekah's collateral arteries. From there, the surgeon can proceed with plans for Rebekah's heart surgery. The ultrasound we are a bit unclear about. All of the people "in the know" were apparently already gone for the day before we were called and informed of the ultrasound this afternoon. We are guessing that it is to check on the healing of the fistula that was made during the last catheterization, but we will have to wait until tomorrow to find out for sure.

I'm practicing sitting up more and more!

Based on the results of tomorrow's CT scan, the surgeon will decide on one of two plans. The first would be that Rebekah's collateral arteries have grown amazingly (reality: no one in the medical field believes this to be the case) and Dr. Bradley would proceed with a full repair of Rebekah's heart and lung in the next few weeks.

Finally meeting Uncle Carl and Aunt Wilma. We loved having them visit!

The second, and much more likely, outcome of tomorrow's CT scan is that the doctor finds no usable collateral arteries and the plan will be to wait as long as Rebekah's heart shows no signs of failure to do her heart repair. This option would commit her to having a single-lung physiology for the rest of her life (barring a miracle and the collaterals actually growing). The reason for waiting is basically the title of my post. If Rebekah doesn't actually need to have surgery right now, and she is no worse off for waiting, why rush into surgery just to have it done?

I'm working on clapping my hands now.

The way Drew and I are choosing to look at waiting is that it is all the more benefit to Rebekah. First and foremost, we have time to continue praying for those collaterals to grow. The doctors have only said that it is unlikely for them to start growing at this point, but it's not impossible. So, we continue to pray. Secondly, waiting to have surgery will allow Rebekah to continue growing, getting stronger and getting bigger. All of those things will be to her advantage going into the surgery. Thirdly, the longer we wait to have this surgery, the longer we can wait to have the next surgery. Repeat surgeries before adulthood are caused by growth, not the wearing out of parts. So, the bigger Rebekah is when she has her initial heart repair, the bigger the parts the surgeon can use and the longer we can postpone Rebekah's next surgery. Sounds good to me!

Helping Mommy make Zachary's birthday cake. Mommy let me try some frosting, but don't tell!!

So, tomorrow morning we are leaving for Charleston in order to be there for Rebekah's 1:00 CT scan. Please pray that the scan goes well and that the radiologist can get clear, accurate pictures of Rebekah's anatomy. If the CT scan is not successful, Rebekah will be having another catheterization in the near future, and this time it would be a little more invasive in order for the doctors to find the information they need.

Looking cute in my girly overalls!

In other, very good news, Rebekah's diarrhea has been gone for a little over a week!! The reason? We started feeding her food! I know, seems like such a simple thing, but with Rebekah, we have learned that nothing is simple! :) Rebekah has had pears, squash and sweet potatoes in the last two and a half weeks. She is loving food and other than being a little uncoordinated in getting the food off the spoon, she is doing a great job at eating!

I love eating food!

Please remember us in prayer tomorrow as we will have a very long day. We are making this a one-day trip in order to avoid the cost of staying over tomorrow night. So we will have 8+ hours of driving plus time in the hospital tomorrow. All of that and neither Drew nor I are feeling well right now. We are still fighting allergy and cold symptoms. Above all, please pray that the tests go well and pray, pray, pray that those collaterals start growing!

Nancy

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

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

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

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

Scratch That!

After bragging this afternoon that Rebekah was making a turn-around and seemed to be doing better, tonight we had a u-turn of a different kind. Between 5:30 and 6:00, Rebekah was getting increasingly more agitated and restless, no matter what we tried to calm her down. She finally fell into a restless sleep for a bit only to be awakened by the Respiratory Therapist.

The RT gave Rebekah her nebulizer treatment and chest PT at a few minutes after 6:00, and Rebekah has continued to have a tight, wheezing cough since then. Her heart rate has also been quite high - above 180 for most of the time, only occasionally dropping to the 160's (normal for her is below 150's). She is now back up to 0.5 liters of oxygen just to keep her oxygen saturations in the low 80's. The RT that came in around 9:30 believes that her lungs have more "junk" in them than he heard in previous nights.

Right now, Rebekah has fallen asleep and her sats have come up to the mid 80's on 0.5 liters. We are waiting on the resident to come in and decide if we need a chest x-ray tonight or if it can wait until morning. I will try to update again when I have more information.

Update: The resident that saw Rebekah tonight believes that her elevated heart rate was caused by the effort it was taking for her to breathe. He wants to watch her a little longer and then increase the amount of oxygen she is getting if necessary. Other than that, he does not feel that we need to do anything tonight, unless Rebekah's breathing or heart rate get worse. When we see Rebekah's regular doctor tomorrow, we can decide if there is anything else we should be doing.

Thanks for praying for Rebekah!

Nancy

Craziness!

It has been a busy couple of days in Room 6518; so busy that I really haven't had a chance to blog! Rebekah has gone up and down in her oxygen requirements, but is currently down from 2 liters to 0.5 liters today. That's part of the good news. The other good news is that the CBC and CRP were within normal ranges, and the mycoplasma, RSV and flu tests all came back negative.

My teddy, my dolly, my tubes, my cords and me!

As far as the g-tube goes, feeding with it has been great! We have not seen any of the swelling and pain that Rebekah had initially when she was admitted two weeks ago. The bad news is that for some reason the site around the tube started leaking today. We're not sure what caused it or why it's happening. The surgeon is supposed to be back this afternoon or in the morning to take a look at it again. We just can't seem to stay away from Dr. Abrams! :)

This morning, we had a great student nurse from USC - Greenville (sorry all you Clemson fans!). He and his wife have four girls almost the same ages as our four boys, so we spent some time swapping kid stories. We have really enjoyed meeting all of the student nurses that we've had in the last two weeks.

Mommy says I'm really cute!

Now for the lungs.....After reaching an all-time high of 2 liters of oxygen yesterday, Rebekah's nurse was able to reduce the amount of oxygen overnight to 0.5 liters. This is due in large part, I think, to the addition of Orapred (an oral steroid used to open constricted airways). Within a few hours of Rebekah's first Orapred dose we saw her oxygen sats climb into the upper 80's and even 90 for a while. In addition to the Orapred, Rebekah is now getting chest PT (where they tap on her chest with a little rubber cup) every 8 hours and nebulizer treatments with Xopenex every 4 hours. We are trying to maximize the effectiveness of the Xopenex in Rebekah's system and not go too long between treatments, because 4-5 hours after a treatment is when she seems to need more oxygen.

Rebekah's lungs have sounded much worse today than they ever have. The respiratory therapist today let me borrow his stethoscope, and I could very easily distinguish the wheezing in Rebekah's lungs. It would have been incredibly hard not to hear it! She has had a very tight, painful-sounding cough today and has been somewhat irritable this afternoon. Dr. Darby reviewed the chest x-ray from yesterday, and it, too was a little worse, particularly in the right lung. There was some streaking of the right lung, which can (but not always!) indicate early pneumonia. The atelectasis (collapse of the lung) in her lower left lung was still there, but no worse than it was on Saturday. If you remember, the right lung is the one that does not technically function, so we are working hard to keep it from getting worse.

For tonight, we are going to continue the medications and breathing treatments and try to keep Rebekah comfortable. Most colds and viruses peak between days 4-6, and tomorrow will be day 6. So we are hoping that by Thursday we start to see some improvement. For now, I will hold and snuggle my baby a little more and enjoy the time I'm getting to spend with her.

Update: Since finishing this post, the surgeon and his entourage came by to check Rebekah's g-tube. His opinion is that all of the forceful coughing Rebekah has done today has just forced some discharge to leak around her tube site. So, it doesn't look like this should be anything to worry about unless it gets much worse or continues after she is over her cold. Good news!

Nancy

Hold the train!

The verdict is in and we are not going to Charleston this week. After two days of discussion between our Greenville cardiologists, our pediatricians, and the cardiology group in Charleston, it has been decided that we need to wait and let Rebekah's lungs get back to normal before attempting the heart catheterization. We will know more this week, but the current plan is to try to reschedule in about two weeks.

So sweet!

Rebekah has had a busy two days! Yesterday, she woke me up around 5:00 in the morning with her oxygen sat monitor beeping. She had dropped into the mid 70's and was not able to come back up on her own. So her nurse gradually increased her O2 until Rebekah was at a full liter of oxygen. Then Rebekah had another incident early in the afternoon yesterday when her sats went down again, so we are currently on a liter and a half of oxygen just to maintain sats in the low to mid 80's. Our night nurse was going to try to wean Rebekah down some during the night, but her sats were never stable enough and high enough to wean. That left us with a big question - what is going on to make Rebekah's sats so low and unstable??

I love you!

This morning, Dr. Butler came by (Zac and Justin both had his wife as their K-4 teacher.). He looked at the chest x-rays that Rebekah had done yesterday and said that the lower part of Rebekah's left lung has collapsed most likely due to whatever respiratory bug she has right now. If she is not expanding her lungs fully, they are more likely to collapse. Thankfully, her right lung looks fine. We also ruled out RSV yesterday, so that is encouraging! Dr. Butler ordered some chest PT for Rebekah (remember how much she liked that last time she was in the hospital?) and some nebulizer treatments with Xopenex every 6 hours. Xopenex is a fairly new drug that is supposed to have the result of opening the airways just as well as Albuterol, but is not supposed to elevate the heart rate and blood pressure quite as much as Albuterol does. We'll see how Rebekah does with it.

I like to smile!

Rebekah also had an echocardiogram this morning, just to rule out any possible heart complications. Dr. Raunniker came by to see us this morning, and he was going to read the echo and let us know if there were any problems. We aren't expecting any. This looks like the work of a respiratory illness, not a cardiac problem.

So, that leaves us in the hospital a few more days until we can get Rebekah's lungs back to normal. We have officially been in the hospital for half of 2010 now, and are looking forward to being able to go home. We are so thankful that Rebekah made it without having to be hospitalized until almost Christmas and then again in January. Many other kids and parents are not able to say that. If you think of it, please keep our little friend, Josiah, in your prayers. He had been home for a few days after Christmas, but had to be taken back to MUSC with unexplained high fevers. Now the doctors believe he has an ulcer in his stomach and have put him on some new medications. I'm sure their family would appreciate your prayers.

Congratulations!

We have won an all-expense paid (!!) trip to our local hospital...room 6518 to be exact....indefinitely! Okay, maybe not indefinitely, but certainly at least until tomorrow. I'm going to quit speculating on when we may get to go home because something seems to happen every time to prove me wrong!

Scenes from 6518...what we look at every day!

So last night we were all ready to get our walking papers today and hit the road when Rebekah decided to desat around 76 for about 10 minutes. We turned her oxygen up gradually from .25 liters to 1 liter before her sats came back up to the low 80's. Dr. Seth and Dr. Roach (who is an awesome fly-killer, by the way!) came in and we speculated that maybe Rebekah had gotten too much fluid and wasn't able to clear it all out, thus making her heart and lungs work harder. So, we turned off Rebekah's IV drip and gave her Lasix and waited to see what happened. About an hour after doing that I went to bed and Rebekah's nurse gradually weaned her oxygen back down to .25 liters during the night. Right now Rebekah is at .20 liters and her oxygen sats are hovering around 81. That's not ideal, but it's not below our magic number '80' either.

Feeding her bottle to her baby doll. :)

As of this afternoon, Rebekah has had off and on fussy spells. Her sats are fluctuating from about 76 to around 85 and her breathing is more rapid than usual. She is also sneezing and coughing a bit and sounds a little stuffy. All of that earned us at least one more night's stay for observation, and we'll see how she is doing tomorrow.

Rebekah was in a good mood last night!

As for Charleston next week, it's all up in the air. Today I spoke with the lady who handles admissions for the cath lab, and she was very hesitant to let me know anything one way or the other. I will need to call her on Monday and let her know how Rebekah is doing. She will then talk with Dr. Baker (the cath lab surgeon) and he will let us know if we can come or not.

This entire student nursing group from Clemson all came to Rebekah's room to listen to her heart. Truncus is not something most of them will ever come across in their patients, so they all wanted to see Rebekah and her cute little leggings! :) Rebekah loved playing with them.

Dr. Darby has been by to see Rebekah this afternoon, and his "gut" feeling is that Rebekah is coming down with some kind of respiratory illness. There are no specific signs that make it a definite diagnosis, but both Dr. Darby and Rebekah's nurse (who has been with us for three days) have the same opinion. Currently, we just bumped Rebekah back up to .50 liters of oxygen because she was not able to keep her sats above 80. Her breathing has become a little more uneven, and I can hear her breathing from about four feet away. Even with those little things, Rebekah is still in a good mood and laughing and playing.

I love this look! "Hmmm...what are you up to now?"

We are probably going to see someone from Cardiology this afternoon. Dr. Darby said he would be recommending that they come by to listen to Rebekah and give their opinion on the cath lab next week. Dr. Lucas is not on call this month, so we may see Dr. Ronniker, who is just as nice and knowledgeable as Dr. Lucas. So many new friends for Rebekah to play with! :)

I like to stick my tongue out!

That's about it for now. We just continue to hang out and try to get our little girl well enough to go home. I'm so thankful that she has such a sweet disposition even when she's not feeling the greatest.

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

Hello from here!

Tomorrow morning Rebekah's g-tube should be fixed!!! We are super excited! Rebekah is scheduled to go to the OR at 10:00 tomorrow morning for a g-tube reinsertion. Because this is a very minor procedure, our cardiologist cleared us to stay in Greenville instead of having to travel to Charleston. Rebekah will be taken back to OR and given an anesthetic and placed on the ventilator for the procedure. A scope will be sent down her throat into her stomach to verify that the new tube is inserted properly and is in the correct place.

The new g-tube MINI that was ordered for Rebekah two weeks ago arrived at our house today, so the surgeons will be trying that tube first. It is another balloon style g-tube but made by a different manufacturer. The balloon is shaped a bit differently and the size of the tube is different so hopefully it will fit correctly. The top part that you see is the part that will be above Rebekah's stomach. The balloon will be in her stomach and hopefully not block her intestinal tract!

After the procedure, Rebekah will be taken to the surgical recovery room to wake up and hopefully have the ventilator removed. Afterward if all goes well, Rebekah will come back to her room on the floor. If she is having a hard time waking up or coming off the ventilator, she will go to the PICU first until she is more stable.

We are not expecting any problems tomorrow. Dr. Abrams is not new to our family. For those of you who have known us for a while, you may remember that he is the surgeon who operated on Aaron after he was born and we learned of his imperforate anus. We are confident that Rebekah will be in good hands with Dr. Abrams.

If all goes as planned, we are hopefully going to be discharged late Friday or early Saturday morning. We will have the weekend at home and then leave for Charleston on Monday afternoon. From one hospital to another!

Please pray for Rebekah tomorrow. Pray for the doctors and anesthesiologists who will be working with Rebekah. And most of all, pray that this will resolve Rebekah's g-tube and feeding issues so that we can get home!

Nancy

A Plan!

Drew and I after the banquet we went to Saturday night. After we ran through the rain to get back into the hospital!

Several of you have asked about the banquet that Drew and I attended. We enjoyed the time we were able to get out on Saturday night. We went to the Greenville Home Builder's Association 50th Anniversary celebration. It was very relaxing and nice to visit with other adults! We were surprised and excited when the builder Drew works for was named the 2009 Builder of the Year in the Greenville/Upstate, SC area. Congratulations, Todd! You can check them out at Addison Homes!

Grammy and Rebekah

So let me recap yesterday and then I'll move on to today's plans. Yesterday was kind of just a waiting game and was much less dramatic than Sunday!! GI was waiting for the surgeons to come back to check Rebekah's g-tube. The pediatrician was waiting for the surgeons to come back to check Rebekah's g-tube. The residents were waiting for the surgeons to come back to check Rebekah's g-tube. I was waiting for the surgeons to come back to check Rebekah's g-tube. See a pattern here? :)

Early yesterday afternoon, Rebekah's IV blew. (You know, the one we spent four hours getting in and finally had to put into her head?? Yeah, that one.) It took two nurses and myself about half an hour to unglue all the tape used in an attempt to hold that IV down on top of Rebekah's hair. It's a wonder that she isn't bald now! In the middle of that process, Rebekah decided to desat, so she went back on oxygen. We finally got all the tape off and decided to let Rebekah rest for an hour or so before attempting to place another IV (Her heartrate had been in the low 200's and O2 sats in the 60's during that whole episode). While Rebekah was resting, her nurse called and (successfully) begged the doctor to not order a new IV, as long as we could get Rebekah's full feeds in overnight. We were determined to get those feeds in even if we had to pump them in with a syringe! :) Okay, not quite that bad, but we were close to desperate.

Monday afternoon Rebekah had another x-ray done to check the position of the NG tube to see if it was still in position or if it was twisted or kinked. Through Sunday night, the feeding pump kept alarming that the line was occluded (blocked). The x-ray showed that the NG tube was about 2cm short of where it needed to be - it was just barely into the tip of the stomach and they like it to be at least a couple of centimeters in. The alarming pump was determined to be faulty as well, but we still needed to readjust the position of the tube. Rebekah was not at all happy about that fact and started to turn blue on us just to prove her point. We turned her oxygen up a little more and she was fine. So, she is now on 1/2 liter of O2 and will hopefully start weaning off a little tonight and tomorrow.

After all the waiting, Dr. Abrams (one of the pediatric surgeons) finally came late this morning. After a week of insisting that something is wrong with the g-tube, Dr. Abrams said he thinks the tube is "in the tract". Basically, when the tube is inflated (or not) it is sitting in the opening of Rebekah's intestinal tract called the pyloric. That's the problem. The solution? Replacing the tube with a different size and/or style of tube.

This is what to do when life gets too hard!

The solution, however, is not as cut-and-dried as I had hoped. Dr. Abrams feels that it is necessary to place Rebekah's new tube visually, which means that they will run a scope down her throat into her stomach to make sure the tube is inserted correctly and is in the correct place and is not blocking the pyloric. In order to do the scope, Rebekah will have to be under anesthesia and on the ventilator. UGH! That was certainly not the answer I wanted to hear!

The next step, now, is to wait for our cardiologist to come by for a consult. As we have mentioned on the blog before, anesthesia for a heart baby is very tricky. There can be complications far beyond the normal complications for a "normal" baby. Greenville Memorial is not equipped for pediatric heart patients, so therefore, there is not a pediatric cardiology anesthesiologist here. The question now becomes: do we do the procedure here, or is it risky enough to move to MUSC in Charleston? That's the answer we are hoping to get from our cardiologist. If we need to go to Charleston, arrangements will have to be made and hopefully we can have the g-tube placement and the already scheduled heart cath (Jan. 26th) during the same trip. Unless the cardiologist thinks differently, we would be discharged from Greenville Memorial and then drive to MUSC whenever they schedule us to be there. At this point, hopefully that would be sooner than later! While this is certainly no emergency procedure, it is equally not an elective procedure. It is best described as a "priority" case because if the current non-functioning g-tube were to come out, it would immediately become an emergency situation. Oh, I forgot to say that the balloon on the g-tube currently in her stomach burst yesterday, so the tube is now taped in so we don't lose the opening. Fun, fun!

Always such a sweetie!

So, as frustrating as this is, at least I feel like we have a plan and are working towards getting this all fixed so we can get back home. Rebekah is tolerating all of this with the sweet spirit that she always has. I have never seen such a good baby - and I've had five of them now! She absolutely never cries unless something is hurting her or she is hungry. We are so blessed to have this sweet little munchkin!

Nancy

What a Day!

Update: We had to call an ER nurse up to the floor (after the PICU nurse gave up) to put Rebekah's IV in. Even though I did not want to have the IV in her scalp, that's where it went. I don't have a problem with it in her scalp, just that she always pulls them out and we have to start all over. Just pray that this one stays in until we no longer need it!

Original Post: Just when things were starting to get a little calm around here, our little hospital world went crazy! This afternoon was so calm and peaceful with only 12 patients on the floor. In fact, it was so calm that they sent our nurse home and we had a new nurse, Noelle, who is very sweet. Then the chaos started. There was a fire (albeit a small one) in the NICU downstairs, there was a domestic altercation on our floor resulting in a visit by our friendly local sheriff's department, there was a disgruntled patient complaining about a nurse resulting in the nurse manager being called in, and lastly there was a suicide in the parking garage. Oh, and within the space of an hour, our floor received three new patients. I think I'm ready to move out!

So, in the midst of all of that chaos, Rebekah's IV blew out in her foot. She had been getting fussy, but I figured she was just ready to eat. So I was pumping and getting her bottle ready when I noticed her sock was wet. Her IV solution had finished earlier and our nurse had changed out the bags and was holding on to Rebekah's sock while she was working on putting in the new bag, so I figured she had just gotten the sock wet then. So I proceeded to give Rebekah her bottle, which she drank a little of and then kept getting more and more fussy. She kicked her foot up in the air and I saw that it looked a little swollen. When I looked more closely, I realized that the gauze and padding around her IV was soaked with solution and her foot was very swollen. I immediately stopped her pump and called for the nurse. They determined that the IV had, in fact, blown and went to talk with the attending doctor (Dr. Brown, affectionately known as Dr. Seth - he's in residency and is going to make a terrific doctor!). Dr. Seth spoke with Rebekah's cardiologist and they decided that she really needed to have the IV fluid to keep from dehydrating, which is what happened during her last hospital stay.

Five nurses and four attempts later, we still do not have an IV in yet. Rebekah has great scalp veins, and an IV can usually be placed in one attempt in her scalp, but she pulls them out within hours, forcing us to repeat the whole process. I am very protective of her left hand because she sucks on those fingers as her comfort measure, so I don't want the IV in that hand/arm. That leaves one arm and two feet. We are waiting on a NICU nurse to come and attempt an IV since they are used to dealing with very itty bitty veins. Hopefully we will get something soon.

When the nurses took the pulse oximeter off Rebekah's foot, we realized that her foot had blistered underneath from the tape used to hold it on, so she has a nice raw spot on her foot. I don't think Rebekah has a latex allergy or anything like that, but she definitely has sensitive skin. That pulse ox had been on since we arrived in the ER Monday night, so I probably should have requested that it be changed. Just one of those things I didn't think about, but will be more aware of in the future!

When Dr. Markowitz came by this morning, he wrote orders for an NG tube (the feeding tube through the nose) to be placed under x-ray and for continuous feedings to resume. Rebekah had an NG tube for several weeks prior to the g-tube being placed, so we have been this road before. The hope is that she will be able to have continuous feeds through the NG tube just until her new g-tube arrives and we can have it changed. If the feeds through the NG tube are successful, we will be allowed to go home and wait for the tube at home. If not, the doctors will do some more checking to see why she is not tolerating the tube feeds.

We did a trial run of the NG tube for about an hour around 6:00 this evening, and it seemed like she tolerated it well. We will be using it through the night and reevaluate tomorrow. But it looks possible that we might actually go home tomorrow. We'll see what happens.

Please pray that we will be able to get this IV in to run fluids until Rebekah gets back up to full continuous feeds again!

Nancy