Passed!!

Rebekah PASSED her swallow study this morning!!! The time for it actually got changed twice before we got down there, so she didn't have her study until after 11:30.

They mixed some barium with some flavored koolaid, and at first Rebekah was eager to gulp it down.  Then she really tasted it and didn't want to have any more.  Can't blame her!  :)  But she was super cooperative, and she drank four different times for them to get plenty of video of her.  It's actually a super-quick series of x-rays that run together to make a short video.  So you can see exactly when the liquid enters Rebekah's mouth, as it goes to the back of the throat, and finally when she swallows.  It's pretty cool to watch!

The radiologist did see two abnormalities in the swallow study.  First, sometimes the liquid in Rebekah's mouth goes up (into her nasal passages) and not down into her throat.  We know all about this one!  It's a part of the DiGeorge syndrome since the back of her throat/vocal cords/nasal passages aren't quite "normal."  The second thing they noted is that Rebekah has a delayed swallow.  This means that the liquid goes into her mouth, to the back of the throat and then kind of hangs out there for a few seconds before it is swallowed down.  The concerning part is that during this time Rebekah's airways are wide open, setting up a perfect opportunity for aspiration.  However, this is NOT something caused by the vocal cord paralysis.  It is likely that Rebekah has always been this way, and probably will always be this way.  It is obvious that her body has learned to compensate and protect her airways.  I could tell the speech pathologist was a little hesitant to say that Rebekah was cleared for thin liquids because of the delayed swallow, but it is obviously something that Rebekah has had all her life, and she has never had an aspiration problem before.  In fact, if she hadn't had a vocal cord issue, we wouldn't even know about the delayed swallow.  So, the speech path. agreed to let Rebekah resume her normal diet, liquids and all!!  :)

So, in light of that news, we are beginning to hear the H-O-M-E word whispered around the unit.  Not sure of exactly when it will be, but things are definitely progressing in that direction.

Nancy

Friday Update

The good news is that I finally got some pictures uploaded and posted.  The bad news is that Blogger put them in this post in random order, and I haven't been able to figure out how to rearrange them.  I know it's supposed to be all click-and-drag friendly, but right now Blogger isn't playing nice.  So enjoy the pictures and I'll try to give some explanations so they all make sense.  :)

Rebekah had a very special gift delivered to her on Tuesday from the Butcher family!  If you don't know them, Annabelle was a very special little girl who spent much of her time in the PCICU at MUSC.  She lived for only a few short months with a very broken heart.  As a way of remembering their sweet Annabelle, her parents began a program called Annabelle Baskets.  The baskets are given to babies who require open heart surgery to repair their heart defects.  Rebekah has been the recipient of two Annabelle Baskets, and this time she received a specially chosen package from Annabelle's family.  Rebecca, thank you so much for the thoughtful gifts you put together for Rebekah.  I know she doesn't look too happy in the picture, but you really found a lot of her favorites!  (The Hello Kitty pencils brought the first smile we'd seen since surgery!)  And the little bear sings "Jesus Loves Me."  It's Rebekah's favorite song!!  :)  So thank you again, Rebecca.  What a special surprise!

Let's see....I think this picture was Thursday night.  It was the first night Rebekah wanted me to hold her.  She still seems to be in a good deal of pain, and I feel like we spend our time chasing her pain instead of staying ahead of it.  We requested doses of Oxycodone, Tylenol and Benadryl (Rebekah has really been itchy around her incision.) before bed tonight, and Rebekah finally seems to be sleeping peacefully.  I asked her nurse to please give the pain meds when they are scheduled through the night instead of as-needed, so hopefully Rebekah will sleep all night!

This afternoon Rebekah felt well enough to go to the playroom.  Here it is called the Atrium.  She had a good time playing with some toys, then she asked to color.  We stayed for about an hour, and she did really well.  She was sitting on her own and playing with some toys, and she even stood and took a couple of steps with Drew's help.

I think this picture was Thursday morning. I love the legwarmers, and so does Rebekah!  She looks so cute in pink and gray!  :)  All of the lines you see in the picture are now out.  Rebekah was moved to the floor this morning, and she still had an IV in her left foot.  (The one in her right foot wouldn't flush last night, so they removed it.)  All day Rebekah has cried any time a nurse has used the IV in her foot.  This evening she got her nausea meds through that IV and just cried and cried and cried.  I asked the nurse if we could just take it out, since Rebekah was getting all of her other meds through her g-tube.  She called the on-call doctor, and he gave the green light.  It was a good think we took it out because it had infiltrated and left the top of her foot swollen!  No wonder the poor girl was in so much pain when anyone messed with it!  The swelling should ease overnight, and by morning she should be able to walk without any pain.

Bekah loves to play with Daddy's hats!  :)  Even though she isn't smiling a lot, we have had periods of play time today.  Rebekah and I play this silly game where we blink at each other and try to copy the blinks.  I know, it's a silly little game, but it entertains her.  :)  Anyway, she started it tonight on her own right before she fell asleep.  I love that she's starting to feel well enough to play a little!

This afternoon after Rebekah played in the atrium, she was taken downstairs for an echo and a chest x-ray.  We're assuming they both were fine since "no news is good news" when it comes to tests and labwork.  Rebekah was such a good girl for her echo, in spite of the fact that she was really tired after playing in the atrium and would rather have gone back to her room for a nap!

We borrowed a small stroller from the unit to take Rebekah to the atrium.  She isn't up to walking yet, and holding her for long periods of time is still uncomfortable for her.  The stroller was the perfect thing!  She enjoyed getting out for a little while.

Mommy and Bekah in the PCICU on Thursday night.  We stayed a little later than we normally do since we had to leave earlier in the evening when Jackson came back from the OR.  I saw Jackson's grandparents in the atrium this afternoon, and they said he is not doing well.  Please, please continue to pray for little Jackson and his family.

Rebekah loved playing with the Weeble Wobbles in the playroom.  She spent a good deal of time putting them on the little ferris wheel, sliding them down the slide, and just having fun.  She reluctantly shared some of them with another little heart friend who was also playing in the atrium.  :)

Mmmmm....strawberry ice cream!  So far it's the only thing Rebekah has eaten since surgery.  I can't say that I blame her! :)   She has also enjoyed some apple juice, but that's about all she has had orally.  We're not pushing her since she is getting her overnight feeds.

Rebekah is settled for the night, and I'm about to get some sleep while I can.  Thank you all for praying for our heart babies.  They are special little people!!

Nancy

Post-OP Day 3

It's amazing how much a little (or a lot!) sleep can help!! Rebekah looked totally different this morning when we came in to see her.  She was alert, responding to our questions, and looked much, much more comfortable this morning.  Her nurse said that she had slept comfortably all night and had not woken up until around 9:00 this morning.  Rebekah was awake for about 2 hours before she fell asleep for a little nap.  Sleep makes such a big difference!

Rebekah's chest x-ray this morning was definitely showing improvement from yesterday.  She still has pockets of atelectasis, but overall her lungs are much better.  Her oxygen sats confirm that because she is at her baseline normal sats today.  Yesterday her sats were hovering in the upper 80's/low 90's.

With the good echo Rebekah had last night, and the improving chest x-ray from this morning, Dr. Zyblewski gave the okay to remove Rebekah's IJ (intra-jugular) and arterial lines.  Those came out around 1:00 this afternoon, with only minimal bleeding.  So Rebekah is not on any more IV medications!! :)  She does have an IV in each foot just in case she needs some IV meds for some reason, but they are not being used right now.

Rebekah's feeds went much better overnight as well.  It looks like her belly is starting to wake up from the anesthesia, and the nurses were able to work Rebekah up to 15ml's/hour of Pedialyte overnight.  Tonight we are going to try running Pediasure (Rebekah's regular formula) beginning at 15ml's/hour and see how she does.  Hopefully her belly will tolerate the feeds with no nausea.

She is really doing so much better today.  She is actually playing peek-a-boo and smiling with Drew.  Yesterday she could barely move or open her eyes without whimpering.  The change is just amazing.

And the best news of the day is that Rebekah is moving to the floor!!!!  She has met all of the requirements to be kicked out of PCICU, and as soon as her room is ready she will be moving to 8D.  We are excited!! :)

Nancy

Wednesday Update

 Sorry this post is a bit later than usual today.  We've been busy taking care of Rebekah and talking to her nurse and doctors since we came in the room!  It's surprisingly busy to simply sit around at your child's bedside in the hospital.  :)

Rebekah found her fingers yesterday afternoon, but just briefly.  She does have an IV in that wrist, so it makes getting her fingers into her mouth a little challenging.  Plus, she doesn't have too much coordination back yet, so keeping her fingers in her mouth has also been a bit of a challenge.

We came in this morning just as the doctors were rounding, so it was nice to get the quick rundown of today's plan from them.  Basically, the plan is to get Rebekah moving a bit more - not necessarily walking, but at least sitting up straighter.  The head of her bed is elevated, so she's sleeping in a semi-sitting up position, but she tends to slide downward into a little ball.  Rebekah has several pockets of atelectasis (collapsing) throughout both lungs, so the doctors are working on getting her lungs to expand more and open up.  The best ways to do that are movement, not lying down flat, and coughing.  If Rebekah knew how to blow, she would also be blowing bubbles to help.  :)

As you can see from the above picture, Rebekah was less than pleased to be up and out of the bed.  After about five minutes, she was asking to get back in the bed.  I think she lasted on Drew's lap about 15 or 20 minutes total, which is a good start.  She is resting in bed right now and we will probably get her up again after lunch.

Rebekah tried her best to sleep in Daddy's lap, but she was very restless.  It seems to be hard for her to find any type of comfortable position right now.  She says "no" if we ask if she hurts, but she is whimpering some and just overall feels yucky.  The nurses are keeping up with her pain protocol, but recovery from open heart surgery is just plain miserable even with pain meds.

Bek finally decided that sleeping across Daddy's arm was the best she was going to get, so that's how she finally settled down.  But only for a few minutes and then we let her get back into her bed.  The doctors did order chest PT to be started today, so that should help open her lungs up as well.  Rebekah loves the vibration of the percussor, and she actually dozed off while the respiratory therapist was working on her.  :)

Rebekah's throat seems to be very sore still (and I'm sure it is!!).  Her cry sounds like a small kitten meowing, and her voice is very soft and high-pitched.  It will improve over time, but for now it is very pitiful sounding.

It seems like Rebekah's stomach has begun to wake up just a little bit.  She tolerated the Pedialyte last night pretty well.  It ran it at just a dribble, really, so there was not much in her stomach at once.  This morning she did have some apple juice and Pedialyte left in her stomach, so we're kind of watching to see how that progresses during the day.

I think that's about all the updates for now.  We will certainly update again if anything changes, or this evening if all remains quiet today.  Oh, and as of this morning Rebekah's temp was just slightly elevated, so it is coming down much closer to normal!  :)

Nancy

Yikes!

Where has time gone??! I can't believe we're halfway through May already. The boys are anxiously looking forward to the end of school - and so am I! I love having all of my littles at home with me. We're hoping for a nice, relaxing summer vacation. :)

Rebekah is doing great! I am really so excited to say that she is doing fantastic! Yes, she still has high pulmonary pressures; yes, she is still on oxygen; yes, she still has feeding issues and takes four medications a day, but in spite of it all, she is thriving.

Unfortunately, our goal of weaning Rebekah's overnight feeds to an end did just that - came to an end. :( If you remember, Rebekah was at a high on her overnight feeds of 40 mL's/hour just before Christmas. By March we had weaned down to only 20 mL's/hour and things went downhill from there. It seems that Rebekah needs a certain amount of calories overnight to have the energy to eat during the day. Within a couple of days of getting down to 20 mL's, Rebekah had virtually stopped eating orally and she lost almost half a pound in two weeks. Her GI doctor recommended we increase back up to 25 mL's/hour, and Rebekah did seem to do better, but not great. When we saw Donna last week, she wanted us to bump all the way back up to 35 mL's/hour. So frustrating!! But, we want Rebekah to get all of the calories she needs, and I have to say that she is proving to us (mostly to me) that she is thriving on the additional overnight calories. She has been hungrier during the day, she is more active, has more energy and has even been skipping naps on a few days. This is in direct contrast to about six weeks ago when Rebekah slept sometimes 15-16 hours a day and would hardly eat anything orally during the day. I guess the g-tube and overnight feeds are going to be our friends for a long while to come.

Tomorrow we see Dr. Lucas (cardiology) for Rebekah's monthly check-up. I'm hoping the echo continues to show Rebekah's pulmonary pressures trending downward. I'm really excited about Dr. Lucas seeing Rebekah tomorrow. I think he's going to be pleased with how well she's doing.

I'm sure there is much more to tell you, but my brain is tired and ready for bed. :) I know I need to update on how Rebekah is doing in therapy and some developmental milestones (and a few concerns), but it will have to wait for another post. Hopefully soon. ;)

Oh, and for those of you in Greenville (or those who want to travel), there is going to be a Cruise-in Benefit at the 'Lil Rebel Restaurant in Greer on June 18th at 5:30 to help with costs related to Rebekah's medical care. I have heard that there will be door prizes, vendor booths, raffles and of course, the cars! If you were at Rebekah's birthday party last June, it is the same location. If you need directions, please click the link on the right sidebar to email me. We would love to see all of our friends there!!

Nancy

2011 Snow Storm!

We are enjoying a week of snow days from school thanks to a snow storm that dumped 7.5" of snow followed by 0.25" of ice on us Sunday night and Monday. We are enjoying the time off from school to play together and enjoy being home.

Because of the snow, all of Rebekah's appointments this week have been cancelled. So, we have not seen her cardiologist to have an echo to see if the oxygen therapy is helping her high pressures. As of tonight, it was reported that cardiology will open at noon tomorrow. I am planning to call as soon as they are open to reschedule our missed appointment.

I see you pointing that camera at me!

Last week Rebekah had an audiologist appointment to recheck her hearing. If you read the last post, you may remember that I was going to suggest to the audiologist that we stop checking Rebekah's hearing every six months. However, I learned at Thursday's appointment that the two types of tests that Rebekah have had are different. The "long" test that Rebekah passed tested her auditory nerves. We know that Rebekah's auditory nerves are fine. The short test, however, tests the middle ear; basically, it measures the vibration of the eardrum and how well Rebekah actually receives sound into her ear. So even though Rebekah's auditory nerves are fine, she is not receiving sound into her ear as well as she could. Rebekah's loss is in the slight to mild range right now, with her right ear testing very close to the mild/moderate range. If Rebekah falls into the mild/moderate range, she will be fitted for hearing aids for at least a few years. Rebekah will continue to have her hearing tested every six months.

Daddy's first dance

Rebekah also had a gastroenterology appointment on Thursday last week. The week of Christmas we had reduced Rebekah's overnight feeds from 40 mL's an hour to 35 mL's an hour. Rebekah maintained her weight even with the reduction in feeds, so we were given the green light to reduce by another 5 mL's an hour. It doesn't sound like much, but every time we drop 5 mL's, Rebekah gets 2 ounces less of formula overnight. It has already made a big difference in her appetite, and we are seeing Rebekah eat much more than she was a month ago. The plan is to continue to check Rebekah's weight once a month and reduce her feeds by 5 mL's each month that she maintains her weight or gains. Our GI doctor said a conservative weight gain for Rebekah should be 4-5 ounces each month. So as long as she meets that goal, we continue to drop feeds. We are hoping that Rebekah will be off, or very close to being off, her overnight feeds by her birthday. We will take it one step at a time, though, and go as slowly as Rebekah needs to.

Rebekah loved sledding!

This week Rebekah missed her endocrinology and cardiology appointments, as well as two of her therapies. While it has been nice to have a break from the constant busy schedule, I am a little nervous about fitting in those two appointments into the next two weeks, which were already busy enough! It will work out, though. It always does. :)

After a while, we gave up sledding and just sat in the snow.

Rebekah kept patting the snow with her mittens.

If you would like to see more pictures of the boys and Rebekah playing in the snow, click here to head over to our family blog. We really enjoyed our snow days!

Yes, Rebekah really is in there somewhere! :)

Thank you all for your prayers for Rebekah. So far she has remained well, and we are thankful for that! Please continue to pray that Rebekah stays well and that her pressures will be better when she has her next echocardiogram.

Nancy

December 2010

It has been a few weeks since our last prayer request post, so I thought I would update the list! We are so appreciative for all of you who check on us and faithfully pray for our family.

Rebekah is doing so well, and we are thrilled to see her almost back to where she was prior to her surgery! She has been walking with one of us supporting her, even though she tires easily. We are still hoping to see Rebekah's endurance level bounce back some, but we are aware that with her current heart configuration and high pressures, that may be some time in the future.

As you know from reading previous posts, Rebekah is now scheduled for a heart catheterization on March 7 to check the pressures in her heart. Our prayer between now and then is that the pressures in the right side of her heart will go down on their own and not require any surgical intervention. Also, please pray that the doctors will have wisdom in making decisions regarding how high is "too high" for Rebekah's heart pressure.

In regards to the catheterization itself, please pray that it will go smoothly and Dr. Baker will be able to get the IV access he needs. After Rebekah's last cath, we found out that Dr. Baker was not able to get all of the information he had hoped for because he could not thread the catheter everywhere that he needed to. Rebekah will be almost a year older this time around, so I'm hoping that will have given her (very tiny) veins some time to grow a little more.

Please also pray for wisdom for Drew and I. Before surgery, we knew Rebekah's limitations and were comfortable working within them. Now we are having to learn a new set of parameters to work with. We are still trying to get a feel for when to push Rebekah harder and when to back off and let her rest. Over time she will show us how she can handle things, but right now we are still a little unsure of what her limits will be.

Rebekah's eating will be another area we need to address in the next few weeks. Again, if surgery had been a complete success, we would have been given the green light to push Rebekah to eat more orally. Rebekah has an appointment with her cardiologist on Dec. 8 and her GI doctor on Dec. 13. We will be discussing how far we can push Rebekah to eat orally and how much we will still rely on the feeding tube until at least March. It is amazing when you stop to think about how intricately our bodies are made. Everything depends on everything else! I am continually reminded of Psalm 139:14 "I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well."

Thank you all for the prayers and support you have given our family. So many of you we have never even met, some of you have taken care of our sweet girl in the hospital or doctor's office, and others of you are close friends. We love and appreciate each and every one of you!

Nancy

Blessings!

We have had an amazing week this week, although you may think us a bit crazy when I fill in the details! :) Drew went to work on Monday morning, and in case you haven't heard, he came home an hour later. His employer has decided that he no longer needs Drew's position, so that was it; no warning, no notice, no job.

Of course, the lack of income is a bit disturbing, but other than that, we are choosing to see the blessings in the timing of Drew's lay-off. Drew has been home to watch the boys during some of Rebekah's appointment, and we have been able to keep Rebekah at home more while I have to take care of other chores and errands. This is especially important since we are doing everything we can to keep Rebekah from getting another cold or illness right before surgery!

Yep, I'm cute!

Drew has some job possibilities that he is looking into, so we would appreciate your prayers for the right job and the right timing. It will be a huge relief to both Drew and I that he will not have to be torn between Rebekah and his job next week while we are in Charleston. We know that God has a plan for everything, and we are trusting in His plan. In the meantime, the kids are very much enjoying seeing their Daddy more!

Zac and Rebekah at the park.

A couple of weeks ago, we met some new friends from Zac and Justin's school at the park. The kids had a great time playing together, and I enjoyed visiting with a new friend! The weather was super nice, and it was fun to watch Rebekah interact with her brothers and their friends.

Picnic in the living room!

For a few years now, we have enjoyed "family nights" with the boys on Friday nights. Usually we will play games or watch a movie together. On rare occasions, we fix "munchie" plates of fruits, veggies, crackers, cheese, and whatever else sounds good, and the kids are allowed to eat in the living room while we watch a movie. This was Rebekah's first experience with movie night, and she had fun. She was sampling red grapes, cucumbers and bananas, all diced in small pieces. We have been working on self-feeding with a fork and spoon in occupational therapy, and Rebekah would stab a piece of fruit or veggie (or I would help her get a piece on her fork), and then she would lift her fork to her mouth, take the fruit off with her other hand, and then eat from her hand. It was so cute and so funny!

Yogurt and cheerios....mmm, good!

Rebekah has been working really hard in her stander and walker, and we can see the results! She is much more confident in standing, and occasionally pulling herself up on a piece of furniture. Rebekah still cannot stand without the support of something, but she is much, much stronger than she was a few months ago. In pool therapy last week, Rebekah took three steps from the therapist to me, without holding on to us. It was the first time we have seen her walk without support! We know that Rebekah will not be walking by the time she has surgery next week, but she has gained so much confidence in the last few weeks that we are hoping she will bounce back to standing, and hopefully walking, soon after surgery.

See, I can stand up!

We have been told that Rebekah's stroller will be delivered this week for us to pick up on Wednesday at therapy. I am so hoping that it comes before surgery! MUSC is a very large medical campus, and it would be a huge help to have a stroller that can have on-board oxygen, rather than us having to lug a tank behind the stroller. We are certainly praying that it comes this week! It will also be much more comfortable for Rebekah to get in and out of after surgery.

Yes, I made this mess. I'm a little stinker some days! :)

If you read our last post in which we included specific prayer requests for Rebekah's upcoming surgery, you will understand what an answer to prayer we have seen this week. On Wednesday and again on Sunday, we received an anonymous note with some money tucked inside to help with our gas expenses. Thank you, Anonymous! We appreciate your prayers and encouragement! Also this week, we received a package with gift cards for several restaurants that will take care of our meals for quite a few days. Thank you!! That was a huge blessing! Then on Sunday, we received a very sweet note from some of our friends and they included another gift card and some money to help with expenses. You know who you are, and we thank you very much!! We love you guys as well!! The biggest surprise came on Sunday afternoon by way of a phone call from someone whom we had never met face-to-face. She asked if she could come by to meet us, and we enjoyed visiting for a while. She handed me an envelope when she left, and it contained money that will cover a good deal of our expenses. Thank you so very much!! The Lord has been providing this week in ways that we never would have dreamed possible, and we have been very humbled by it. The love and prayers that we have received is just amazing.

Not even my brothers could get me to smile!

This was the best smile we could get...after dozens of attempts. :)

There is a story behind this little gray outfit. When I was pregnant with Zachary, about this time nine years ago, Drew's mom and I saw this little outfit on clearance at the mall. We didn't yet know if Zachary was a boy or girl, but for some reason, we were all thinking "girl." The outfit was so cute, and Drew's mom decided to get it thinking that we would have a girl at some point who could wear it. Fast forward four boys later, and we finally have our little girl. I had completely forgotten about the outfit, but I'm glad Grammy remembered! It is so cute!

Rebekah loves playing with her tongue!

Front: Justin, Rebekah, and Aaron

Back: Zachary and Caleb

After many attempts over the last few months, this is the best picture we have ever gotten of all of the kids together. Our boys just adore their baby sister, and I know they are going to miss her while we are in Charleston. Please continue to keep us all in your prayers over the next few weeks.

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

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

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

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

Cute Pictures!

Disclaimer: If you haven't read today's first post, this one will make no sense. Scroll down to read the post "Another New Plan" first.

We have tried step one of today's plan and the score so far is G-tube-2; Rebekah-0. We deflated the balloon and taped it down so we didn't lose the placement, and tried tube feedings beginning at 5cc's and hour. That means over the course of an hour, Rebekah would get what amounts to about a teaspoon of milk. Guess what!? It didn't work. After about an hour and 15 minutes, Rebekah was screaming, upset and her heart rate was elevated. So, our sweet nurse, Gail, is off to call the doctor to let him know and to double check that the next step is changing the tube itself.

In the meantime, before all of this happened, Rebekah was being Miss Cuteness herself. Enjoy the pictures and even a short video clip at the end (Hey, Drew, I finally figured out the video!).

Showing off the latest in high fashion hospital wear!

I lasted about five minutes playing in the bumbo before I got tired.

Sound asleep with my dolly. Look at how pudgy my arms are getting!

Look at how cute I am! Mommy really loves this picture!

Rebekah was being so cute playing in her crib! Right at the end when she starts to get fussy is about the time that we think her g-tube feeds were bothering her. From there it went downhill until we shut the pump off. About five minutes after turning the pump off, she was perfectly calm and went to sleep. Please pray that the doctors will figure this out!!

Drew and I are actually getting dressed up tonight to go to a work-related banquet (his work, not mine! :). A sweet nurse friend of ours who is not working tonight has offered to come and sit with Rebekah while we are gone. It will be fun to get out and do something besides sit in Rebekah's room (although I wouldn't trade being with her for anything!). If we can, I'll try to get a couple of pictures. I haven't gotten this dressed up in a long time!

Nancy

Another New Plan

Wow! I think I've lost track of which plan we are on now. It feels like a couple of dozen so far, although I know it hasn't been that many.

I look so cute with my leg warmers!

When we used Rebekah's g-tube last night with breast milk in it, she had the same reaction to it that she has had all along - extreme irritability and fussiness, and tenderness around her belly especially around the g-tube. That little test basically confirmed in Dr. Darby's mind that the g-tube really is the problem.

However, right now Peds Surgery does not believe that Rebekah has a g-tube problem. She has had x-rays and contrast studies done that do not show any problems with the g-tube. They are contending that she has a problem with c. diff. or with her formula or something else. So, Rebekah's doctor's goal is to prove to Peds Surgery that 1) Rebekah has a problem with her g-tube and 2) what the problem is.

I'm a happy girl as long as you leave my tube alone!

This morning, we have come up with yet another process-of-elimination plan. We are going to deflate the balloon in Rebekah's g-tube and proceed with a tube feeding (of breast milk or Ellecare since we know that either one works fine). If Rebekah does fine with the balloon deflated, we are going to assume that the balloon is either pressing on something uncomfortable or blocking the pyloric (the opening from the stomach into the intestines through which food passes). We would then re-inflate the balloon with a small amount of water (3cc's instead of the normal 5cc's) and repeat the test. If we can use the tube with a partially deflated balloon for a week or two, that would be enough to get us by until Rebekah's new (correctly-sized) g-tube comes in. The new size is actually a special order because it is so small, so it is taking 2-3 weeks for it to be made and shipped.

If the deflated balloon still results in the same fussiness and irritability, we are going to try replacing the g-tube altogether with Rebekah's spare tube and see what happens.

Look, Mrs. Beth! I'm playing with my feet!

These are the two experiments that we are going to try today. If either of them works, then we will be good and will only stay an additional 24 hours to run through an entire feeding schedule to make sure there are no other problems that crop up. If either of the experiments fail, we will be back to the drawing board tomorrow to come up with a new plan.

Rebekah's doctors are determined, though, to get to the bottom of the issue and resolve it no matter how long it takes. I'm just hoping for sooner, rather than later! :)

Nancy