Happy New Year!

I just realized that it has been a while since I last posted an update on Rebekah. The bad news is that I am falling behind in my blogging. The good news is that there hasn't been anything to update on! :)

January brings in a round of doctors visits for Rebekah. I know, what's new, right? :) This coming week Rebekah will see her pediatrician (for a very belated 15-month check up), her audiologist for a re-check of her ears, and her gastroenterologist for a routine visit. We are not anticipating any changes or issues at the pedi or audiologist appointments. During the GI appointment, I am hoping to discuss a plan to wean Rebekah to a much lower volume of formula through her g-tube, and ultimately, a plan to wean the g-tube use permanently. After being given the go-ahead from Rebekah's cardiologist to cut back her g-tube feeds, we have decreased the volume Rebekah gets overnight from 40 mL's per hour to 35 mL's per hour. I know that doesn't sound like much, but over the course of her 12 hour feed, that adds up to two ounces less per night. And Rebekah is definitely responding to the decrease by eating more! Like all of us, she has days when she eats more and days when she eats less, but overall we have seen an increase in the volume of food she is taking in orally. Please pray that this continues and that Rebekah continues to make forward progress in the growth department while decreasing her g-tube feeds!

Rebekah also has a pretty significant cardiologist appointment this month. On January 11 she will go in for a regular check-up and echocardiogram which will tell us if the oxygen therapy is doing anything to help lower her pulmonary hypertension. Please, please pray that her numbers have begun to come down. Pulmonary hypertension will take a toll on Rebekah's body at some point, and we would love to see those numbers lower. In the same regard, please continue to pray for wisdom for all of Rebekah's cardiac team in knowing when/how to treat her high pressure.

Also on the calendar for January is a follow-up appointment with Rebekah's ophthalmologist. We last saw him in September and decided to wait on any possible treatments until after surgery. Now we are post-surgery, and we will be discussing possible patching and/or glasses to try to strengthen Rebekah's right eye. I have noticed that her right eye has been turning inward more than before, especially if she is looking at or playing with something closer to her face. I am definitely going to be mentioning it to the doctor at our appointment.

One other thing that is not on the schedule, but will be soon is a trip to see the orthopedic doctors at the Shriner's Hospital here in Greenville. Our physical therapist has mentioned it a few times, but again, we were waiting until Rebekah was post-surgery to schedule that appointment. In the last few weeks, Drew and I have felt Rebekah's hips popping when we play with her. It is probably nothing of significance, but we want to make sure there is not a problem we need to address.

Rebekah is all cleared to begin her therapies again this week. We are excited about that! It will be good to see our therapists again. And I must admit, I'm anxious for them to see how far Rebekah has come since surgery. She is really beginning to take off in all areas of her development.

I guess that's all for now. Rebekah has been well since her last hospital visit, and we are praying that continues! For all of our SRBC family, please know that if we are not in services it is because we are trying to keep Rebekah well. Happy New Year! We love you all!

Drew, Nancy, Zac, Justin, Aaron, Caleb and Rebekah Grace

I love my new mittenns that Grammy made me! As soon as Mommy put mittens on Caleb, I started waving my hands for Mommy to put my mittens on. Thank you, Grammy!

Merry Christmas

Merry Christmas to all our family and friends.

Happy birthday Jesus, thank you for saving us.

Thank you Lord for all you have given us this year.

Love,

Nancy, Drew, Rebekah, and the Boys

Prayers needed!

Rebekah had a pretty good day today, and we are thankful for that! She is still coughing quite a bit, but she enjoyed playing with her brothers and having the freedom to move around and play as she wanted to. It's always best to be home! :)

Two of our little heart buddies are struggling tonight and need prayer. I mentioned both of them last week as they both had surgery in early December. Brandt was able to come home on Sunday, but we just learned that he has been rushed back to MUSC with some type of infection. The latest that we heard is that antibiotics and pain medications were started, and Dr. Bradley is considering surgery tomorrow. Please pray for sweet Brandt, his parents and brothers, as this is a very scary time for them.

Baby Mason is still at MUSC and the last I heard was that he was moving to the step-down unit today. He seems to be in a great deal of pain still, and no one has been able to figure out why. Please pray that he will be able to rest tonight and that the doctors will be able to find the source of his pain.

Thank you for praying for Rebekah and her little heart friends. It is so easy to be lulled into a false sense of security that all will be well because we are now home, but things can change rapidly for a heart baby. Thank you for upholding us in prayer!

Nancy

There's no place like home!

I just wanted to post a quick update to let you all know that we are home!!! Rebekah was very excited to see her brothers, but she was very tired. She went to bed at 7:00 and we haven't heard a sound from her since! I'm sure she is enjoying being back in her room and in her crib. I know I am looking forward to sleeping in my bed tonight!

Rebekah did come home with oxygen, and she will be staying on it until at least her next cardiology appointment. Unlike before her surgery, Rebekah does not need the oxygen to keep her sats up. Rather, this is called "oxygen therapy." It some studies, oxygen has been shown to lower pulmonary hypertension, so we are going to try oxygen for the next month and then see if it has helped. If Rebekah's pressures are lower, she will likely remain on the oxygen until her heart catheterization in March. If there is no change in the pressure, Dr. Lucas will probably take Rebekah off the oxygen. We are hoping that the oxygen will lower the pressure in her heart at least a little bit. If going back on oxygen is a way to do that, then we are willing to try it. I'm hoping that she will be on oxygen until March!

Thank you to everyone for your prayers while we were in the hospital. Please continue to pray for Rebekah. She still has a cold, but it seems that she is getting over it. Pray that she will continue to be as healthy as possible through the winter months.

Nancy

Status Quo

So today has not really brought any big changes for Miss Rebekah. The one piece of good news is that so far today she has not had any fever! :) We are encouraged by that. Otherwise, though, her cough/congestion/cold are about the same as they have been. Rebekah did take an almost four hour nap today with only minimal interruptions, and I'm very thankful that she was able to get some sleep.

During Rebekah's nap, Dr. Darby came in. I asked him a few questions regarding Rebekah's care, and I feel like we are both on the same page. Our goal is to get Rebekah home as quickly as possible so we don't pick up something else while we are here. The only caution that I have is whether or not her high pressure is a condition that needs to keep her in the hospital while she has this cold. If not, Dr. Darby will send us home tomorrow or Wednesday at the latest with oxygen and a sat monitor so we can manage this (and any future) cold at home. If the cardiologist feels that the high pressure warrants more observation and/or staying until this cold is resolved, then we absolutely will stay. That is the million dollar question of the day! :) Dr. Darby was planning on consulting with Dr. Lucas (our regular cardiologist) today to get his opinion.

We were able to get a little more sleep last night. Once Rebekah finally went to sleep (after 10), she only woke up for a few brief times and then went right back to sleep. She did wake up around 5:30 this morning with a bad coughing spell, and she really coughed off and on after that until I got her up and dressed around 7:30. At least we were able to get several hours of sleep, though!

Tonight is Zachary's and Justin's school Christmas program and art show. Unless something changes in the next couple of hours, a good friend of ours is coming to sit with Rebekah so I can meet Drew and the boys at school. We haven't said anything to the boys, so I'm sure they will be excited to see me. I think the current plan is for Drew and I to trade off tomorrow so I can go home and get some laundry and other chores done and spend some time with the little guys. Then hopefully we will bring them up to Rebekah's room for a bit so they can see her as well.

Not much else has been going on around here, and Rebekah just woke up. I'm off to spend some time playing with her. I will update if anything new comes up!

Nancy

Brrrrrr!

Well, we haven't seen any snow yet (unless you count the dozen or so minuscule flurries I saw around lunch time), so this trip may prove to be our record breaker. However, it is downright cold for this southern blood! Temps in the teens with even colder wind chill is not my idea of a mild southern winter! :)

Rebekah is stable tonight. She is not really any better, nor is she any worse. Her fever has come and gone off and on today; I think slightly over 100 was the highest recorded temp today. The lower temps are probably due to someone's newfound interest in the little ice chips available here at the hospital (same kind you can get at Sonic). I can't imagine where in the world she would have picked up such a silly little habit. ahem.

Two pigtails are cute...four are even cuter!

Earlier this week, I had fun playing with Rebekah's hair. She is such a good sport and lets me do almost anything. She really likes having her hair brushed and played with. I really enjoy brushing and playing with it! We make a pretty good combination, I think! :)

Rebekah playing on the stairs.

One day last week Rebekah decided to sit on the bottom step. She probably played for over an hour there. At times she sat; at other times, she pushed herself up to standing and stood without holding on to anything. She was so proud of being able to stand up by herself, and she let us know by clapping!

See my brothers? This one is Caleb.

Rebekah has had some periods of playing today. She has also had periods of time when she has just felt rotten. During some of her more playful times, Rebekah likes to stand at the end of her crib and jabber about her brothers. She has been saying "Bubba" for Caleb's name. I'm not sure if that's her way of saying Caleb, or brother, but either way, it's very cute! :)

Kisses for my brothers!

We saw one of the cardiologists from Rebekah's group this afternoon. He was concerned about this sickness adding more stress to the already high pressures Rebekah has. To that end, he recommended that Rebekah go back on oxygen for a while to give her lungs a little break from working so hard. He also said that he would prefer to see Rebekah remain in the hospital until she makes a definite turn for the better. Of course, we are hoping that is sooner rather than later!

Brrr....this ice is cold! (But it's SOOO good!)

This is a short little video of Rebekah walking with her little doggy. Excuse the shakiness. Zachary was our amateur videographer. :)

We're praying for an uneventful night, as much sleep as one can possibly get in a hospital, and a great day tomorrow!

Nancy

Saturday Night Update

We are settled in at Greenville Memorial, and in true Rebekah-style, it is 10:00 and she is still going strong. :) We have had an eventful two days, so I'll try to fill you in.

Yesterday (Friday), Rebekah woke up with a cough. It wasn't a bad cough, and we decided to just watch it and see what happened. We put Rebekah to bed a little later than usual, and by the time Drew and I went to bed, she was coughing a lot. That translated to us being up and down almost all night. By the time morning rolled around, I was up and on the phone with the doctor's office as soon as they opened. They wanted to see Rebekah right away, so we took off and were there by a little after 9:00. By the time we got to the doctor's office, Rebekah was coughing so much that she could barely take a breath in between coughs. We had only been back in the room for a few minutes when the doctor (one we have seen in the past, but not our usual pediatrician) came in with a breathing treatment. He ordered two Xopenex treatments given about 10 minutes apart. When we finished, he came back in to listen to Rebekah and said that she was still working to hard to breath and that we needed to head to the hospital. Dr. Belvin did not actually do any bloodwork or testing at the doctor's office, but he said that Rebekah had all the symptoms of RSV.

When we got to the hospital, it took a few hours to be admitted, get settled into our room, and get all of the normal "admission" paperwork and other stuff out of the way. By mid-afternoon, the nurse was ready to draw blood for the labs the doctor ordered. In a few hours, the RSV test came back: negative. We are very thankful that Rebekah does not have RSV!! It is a particularly nasty little cold bug that can seriously restrict airflow through the lungs and cause problems for babies with immature lungs, or in Rebekah's case, for those with only one working lung. With that being said, though, we really don't have a name for what Rebekah has. It appears that this is playing out just like last winter. We are in the hospital for an unspecific respiratory virus that is causing Rebekah to have lower oxygen sats, a very congested nose and a really, really yucky cough. She also has been running a fever between 100-101.2. So far Rebekah has avoided being on oxygen, but she was very close around 9:00 when she had a bad coughing spell and her sats dipped to around 80. She has been able to bring her O2 up on her own each time it dips, so we are just waiting to see if her body can fight this bug off without the extra oxygen. It is ready to go, though, if she does happen to need it in the night.

So, that's where we are at and how we got here. I am really hoping that after a day or two of observation we can go home and monitor this cold from home. The only drawback is that we no longer have oxygen or a sat monitor at home, so we aren't able to check Rebekah's sats from home.

Please pray for two other little heart babies that live near us. Mason was flown to MUSC in the early morning hours on Friday and had an emergency open heart surgery late Friday afternoon/evening. The surgery did not go as planned, and he will need another one in a few months, but he seems to be stable right now. You can read more about his story by clicking here. Brandt is also at MUSC this week, and he had his second open heart surgery Tuesday. After some ups and downs with his blood pressure (and his self-extubation!!), he was doing well enough to be moved to step-down today. Yeah, Brandt!! You can read all about Super Brandt by clicking here.

I guess that's about all for now. I am anticipating seeing some snow in Greenville tomorrow or Monday. After all, it snowed at some point during every hospitalization (in Greenville) that Rebekah had last year. It's an amazing record that I would hate to break now! :)

In all seriousness, please pray that whatever this virus is will go away quickly. Pray that Rebekah can breathe well enough to sleep tonight and that her airways will open up more. Also, please pray that Rebekah's oxygen levels remain high so that we don't need to use oxygen.

Nancy

The Beginning of a long winter.....of colds

Rebekah has been admitted to the hospital here at home. She had a rough night of coughing and little sleep. She has RSV which is causing her to have trouble breathing. Basically a common cold for our boys, but a serious problem for her with all her other difficulties. So we are greeting the winter season much as we did last year with a trip to the hospital. We hope she will get over this quickly and be back home soon. We also are praying that this will be her only trip this winter.

We will keep everyone updated as she fights of yet another cold.

Thank you for your prayers and support,

D

I'm walking now!

I'm walking now!

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

Hello, Look and Love You!

Rebekah is becoming more and more of a parrot every day. It is so fun to watch and hear Rebekah try to pronounce some words. In the last two weeks, Rebekah has started imitating close to a dozen words. We have heard:

Gac - Zac

Un-in - Justin

Uun - Aaron

Papa - Papa (always whispered, for some reason :)

Nana - Nana

Hooo - hello

Luh-loo - love you

Ah-un - all done

oof-oof - woof woof (again, whispered or said very softly)

loo - look

uh - up

Rebekah has said mama and dada for a long time now, as well as uh-oh. Rebekah also has a word for Grampy, but I can't begin to try to reproduce the sounds. :) It's uniquely Rebekah!

Tomorrow Rebekah has a geneticist appointment. I'm not expecting any surprises or new information. Basically, we check in with genetics a couple of times a year to see if there is anything we are missing regarding Rebekah's care and potential needs. We should have just a routine appointment tomorrow.

Rebekah says "hello," "look," and "love you." Listen closely amid all the din in the background. Four brothers can be loud sometimes! :)

It's time for me to recharge while my munchkins are sleeping. Have a good night, all!

Nancy