Prayer

I know I should be in bed, but I really wanted to post a quick update to ask for prayer for three special babies at MUSC who are fighting hard tonight.

Bobby had a band placed on one of his pulmonary arteries last week Monday (this is the first surgery that Rebekah had done when she was a week old).  He had a great week, but has been struggling this weekend.  Today the doctors think that he has pneumonia and that his lungs are collapsing.  The situation is not good, and he is in critical condition.  Family is headed down to MUSC to be with Bobby and his parents.  I know they would desperately covet your prayers.

Jackson is the little boy whose parents we met the night Rebekah was supposed to be transferred to the step-down floor, but they didn't have a bed for her.  He was doing so well right after we left the PCICU, but took a bad turn shortly after that.  Just last week he had his FOURTH open heart surgery (since the week before Christmas).  Please pray for Jackson and his family.  They are weary and fearful for their son.

Martin is a beautiful baby born less than two weeks ago with HLHS.  He had his first stage surgery on Tuesday last week, and has been struggling to keep his oxygen levels in a good range.  His heart defect is vastly different from Rebekah's, but like Rebekah was before her second surgery, there is a "target" range for acceptable oxygen levels.  Too low and things are bad; too high and it causes other problems.  I know his parents would appreciate prayers for Martin, that the doctors could find a reason for his low oxygen and be able to get him to a safer level.

On a happy note, (not-so-little-anymore!!) baby Jude is doing very well!  He was upgraded to a bed by the window so he can start to get a feel for days and nights.  He has some pulmonary hypertension issues (like Rebekah), and the doctors are working with some medications to try to get that under control.  He was on pain medications for quite a while longer than Rebekah ever was, and he is struggling to wean off those meds. They tried a new medication this week to help "bridge" the gap off his old meds this week, and it seems to be working better.  His parents have also requested that we pray for him to regain his sucking reflex; right now he doesn't want anything to do with something in or near his mouth (not that I blame him, but it is kind of important that he get the hang of sucking a pacifier and/or bottle).

All four of these little guys (And, yes, they are all boys! Rebekah is outnumbered!!) are from the Greenville area, and we have connections to each of the families.  Some we are very close friends of the family; others are a friend-of-a-friend situation.  Regardless of how we came to know about each of these families, they are each close to our hearts, and tonight our hearts are heavy for our friends and the struggles they are facing with their little ones.  Please join us in prayer for each of these families.  Oh, and Rebekah has an early appointment with the sleep doctor for the results of her sleep study.  Please pray for wisdom and that we will know where to proceed with the results.

As always, we thank you for praying!

Nancy

Prayer Request

I just spent a few minutes with Brian, Jude's dad, and they received some disappointing news this morning.  Jude had been doing well, and there was a possibility that he would come off the bypass today.  Instead, he needs to have more invasive procedures, all with their own set of risks and potential complications.  If you are interested in more details, you can read Brian's explanation here.

I know Brian and Rose would certainly appreciate your prayers, both for Jude and for them.  There is nothing in the world like the emotional roller coaster of watching your child fight for his/her life.  Please uphold our friends in prayer today.

Nancy


P.S.  Bekah is doing well this morning!  We are waiting on the doctors to round and just maybe, we will get a discharge date!! :)

Feeling Better!

I can tell Rebekah is certainly beginning to feel better!  She wants to be out of the bed and socializing with everyone!  Since Rebekah is not plugged in to oxygen right now, she loved the freedom of following the nurses around the unit.  She spent the better part of an hour hanging out at the nurses station tonight charming all of the nurses. :)  The unit has a new telemetry system (monitors heart rate and oxygen saturations) that is wireless, so the kids just have a small white box with the leads attached to it, instead of being confined to a bed with a monitor beside them.  It's great for the kids!!  Rebekah picks up her box and away she goes! :)

The theme of the day was giraffe.  :)  Yes, it totally all matches, and yes, I have a blast dressing Rebekah!  I'm already mourning the fact that by the time Rebekah has another surgery, she will be too big to wear the cute onsies and leg warmers. So sad!

Rebekah is totally in love with Mickey Mouse right now.  Do you know how many stores do NOT carry Mickey Mouse??!!  I searched through Walmart, Target and an entire mall (with no Disney store) before I finally found this Mickey at KMart.  Rebekah has been best buddies with him ever since. :)  I figured if a girl goes through open heart surgery, the least she can have is a Mickey Mouse!

We had a nice surprise today - MAIL!!  Rebekah received two cards and a package today, and she was delighted!  She very meticulously studied the cards and looked at all the pictures on them.  It was really sweet.  She also very much enjoyed the new book she received, and spent a lot of time looking at the pictures after we read it.  Thank you for the enjoyable surprise!

Tomorrow morning Rebekah will be having another chest x-ray.  I'm really hoping to see some good results from this one!  As of this morning's x-ray (at 6:30 in the morning!!), there was still a large area of fluid on Rebekah's right lung and a small collapsed area in Rebekah's left lung.  Both are no worse than they were before, but they don't seem to be much improved from two days ago.  The good news is that Rebekah is handling it well since she was able to go without oxygen all day and keep her sats up!

Rebekah finally settled down and went to sleep.  :)  I told you she was feeling better!  She's starting to play her "stay-up-till-midnight-and-sleep-all-day" hospital routine.  Better get out of here fast, or she's going to have a serious adjustment when we get back home.  :)

As you pray for Rebekah, please continue praying for baby Jackson.  He had his best day ever on Sunday, and I know his parents needed that bit of encouragement.  His battle is far from over, so please remember him in prayer.  And we have another little heart buddy named Jude who also needs prayer.  He has a big test tomorrow to see if he can make it off of the heart/lung bypass machine.  If he is strong enough, then he will be scheduled for his first open heart surgery a day or two later.  His parents would also appreciate your prayers.

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

Still in the PCICU

Rebekah was all set and ready to move up to the floor today, but she is going to spend one more night in the PCICU tonight.  She is doing very well and could have easily moved, but they are out of space!  :)  There was another patient on the floor that should have been discharged, but it didn't happen tonight.  Rebekah will move up as soon as the other patient is discharged in the morning.

I believe there was another reason that Rebekah was kept in the PCICU tonight, and it doesn't have anything to do with her.  Because of staying in the PC, I was able to meet another family whose baby had surgery today.  He was brought back to the bed space right beside Rebekah.  We sort of had a mutual friend-of-a-friend circumstance that led me to start talking with them.  Anyway, I would love for you all to remember baby Jackson in your prayers tonight.  He had a long day of surgery today, and I know the family would appreciate your prayers.  His caring bridge site is http://www.caringbridge.org/visit/jacksonwyatt/journal.

Thank you all for praying!  We appreciate all of your prayers and encouragement!

Nancy

A Short Update

For those of you who have been following Rachel's story, we ask for prayer once again. You can read the long version on Rachel's blog, but the short version is that she has developed an atrial flutter (her heart is not beating correctly) that could lead to blood clots forming. She will be having a scope procedure done in the OR under anesthesia tomorrow to check for any clots that may have potentially already formed. There are tremendous risks for Rachel to be under anesthesia tomorrow, but it is the only choice her parents are left with. Please be in prayer for their family during this very stressful time.

In Rebekah news, we will be getting test results back this week to try to determine why Rebekah's fatigue seems to be getting worse, not better. Rebekah had done really well in the months following surgery, but in the last 6-8 weeks, she has required more sleep and has generally be tiring out more easily than before. To give you a few examples, Rebekah rarely goes up or down stairs on her own anymore. She cries at the top or bottom, or comes to find one of us to carry her up or down. Also, Rebekah had been in physical therapy for one hour every other week, but three weeks ago, we made the decision to switch back to every week because Rebekah is just exhausted and laying down after 30-45 minutes of therapy. And the sleep! A usual day for Rebekah consists of getting up around 8, playing until lunchtime, going to bed for a nap between 12:00 and 1:00, sleeping until 5:00, getting up for dinner and maybe a little playtime, and going back to bed around 7:00. Now, of course, there are variations to this schedule depending on what is happening for that day, but this is pretty much the way Rebekah likes her schedule when we are home and have nothing planned.

So after talking with Dr. Lucas (Rebekah's cardiologist), Rebekah went to the pediatrician for a check-up and a full blood work-up. They are looking for anything related to thyroid, hemoglobin, mono (??!!) and several other things that I'm not even sure of. Basically, Dr. Lucas wants to rule out any non-cardiac possibilities before we start looking more seriously at Rebekah's heart as a cause for the fatigue. If all the tests come back negative, we will most likely see Dr. Lucas this week to see if anything has changed since Rebekah's last echo. If one or more of the test results show a problem, obviously we will address it once we know what it is. So I'm really hoping that something shows up in the blood work to give us something to treat. Otherwise, we may be looking at a trip to Charleston for a catheterization much sooner than we had planned.

Thanks for praying!

Nancy

Guess my short update wasn't as short as I thought it was going to be! :)

Not to leave you hanging....

I just realized that in all of yesterday's craziness, I never posted an update on Lukas! He was out of surgery by mid-afternoon, and the surgery went very well. In fact, Lukas was doing so well that the doctors were able to close his chest today! (If you remember, Rebekah's chest was open for about 48 hours post-surgery due to the swelling.) It seems like things are going great for Lukas. Please continue to pray that he stays infection-free during his recovery time and that he gets masters the skills he needs to eat so he can go home!

And because every good post includes a picture of the little girly......

Nancy

PLEASE PRAY!

When we went to get Rebekah from her crib this morning Drew realized that her g-tube had come out of her stomach overnight. It is held in place by a small, water-filled balloon on the inside of her stomach, and apparently that burst at some point overnight. I have tried to insert her replacement tube, and the stoma (opening in her stomach) is closed up too much for me to get it in. We are heading to her surgeon's office to attempt to replace the g-tube. Leaving it out at this point is not an option. Rebekah is almost completely dependent on that tube for nutrition. If it cannot be replaced in the surgeon's office, it will need to be surgically replaced. Please pray that they can get this tube back in.

Also, please remember to pray for Lukas and his family this morning as he will be in surgery most of the day.

Nancy

Pray for Lukas

Please keep our heart buddy, Lukas, and his family in your prayers. Lukas was born a couple of weeks ago with Truncus Arteriosus, like Rebekah. He was doing so well in the first few days that the doctors were discussing sending him home to grow a little before his Truncus repair surgery. However, in the last few days, Lukas has really been struggling to the point that he needed to be sedated and is on the ventilator to keep his body as relaxed as possible. With all that said, the doctors decided that he needs surgery soon, and have scheduled him for surgery tomorrow. I know their family would greatly appreciate your prayers tomorrow. I will try to update sometime tomorrow as I hear how things are going.

Also, Rachel is much more stable than she was a few weeks ago. She is still in the hospital, but the medications she is on seem to be helping her heart work more efficiently. Rachel is listed as 1A status on the transplant list, so when a heart becomes available, she will be one of the first in line to see if she is a match. Please pray for Rachel and her family. It is not an easy thing to know that someone else has to lose a loved one in order to save your child.

Rebekah is doing well, and we celebrated her birthday a little early when grandparents were in town yesterday. I am still sorting and editing pictures, but hopefully will have birthday pictures posted soon. There are some cute ones! :)

Nancy

Heart Buddy Update

I wanted to just take a minute to update you on a couple of the heart buddies listed on the left side of the blog.

You'll notice that Rachel is a new name listed on the left. She is the niece of some friends of ours, and she could definitely use some prayer! After a "routine" heart surgery a few weeks ago, one of her valves began leaking badly, and the doctors felt that the best option under the circumstances was to list her for a heart transplant. Currently, there is some concern with the results of the antibody test Rachel had last week, and that could limit the chances of finding a successful heart match. Please keep Rachel and her family in your prayers.

Owen....dear, sweet Owen! I just love this little guy and would absolutely love to meet him and his sweet family one day. Anyone want to take a road trip to Arizona??! Owen is doing absolutely fantastic! He is walking, talking and eating!! I know that makes his mom very happy. Please pray for Owen this summer as he will be having a heart catheterization in July and the results will be crucial to his further treatment. We are praying for great news in the cath lab so Owen will be able to have his heart repair surgery soon afterwards.

And beautiful little Lukas was born on Friday, weighing in at 7lbs and 7 ounces. He is absolutely breathtakingly beautiful and is doing SO well! We are so excited for the Corwin family and their new addition. Right now Christie is just updating her Facebook page, but I'm sure that she will be updating the blog soon as she has time. At this time I have not heard when he will be scheduled for his Truncus repair, but I will be sure to pass the information along when I know. Please keep Jonathan and Christie in your prayers, as well as big brothers Riley and Hayden.

Thank you all for praying for Rebekah and our special heart friends. I know I can speak for parents of all children with heart defects....life is never certain, and we have learned to enjoy each day as a blessing from God.

Thankful for Colds!

Yes, you read that right - we are thankful for head colds around here! For one, I'd take a head cold any day over some of the stuff our friends have had. Yucky!! Second, this weekend we were very concerned about Rebekah because she began to show a dramatic decrease in both appetite and activity level. While in most kids that is not cause for great alarm (for a day or two), those can be warning signs of early heart failure. So on Sunday morning we decided to call cardiology just to let them know what was going on. We were reassured (somewhat) by the on-call cardiologist that heart failure usually does not present that suddenly (but we are talking about Rebekah, here. When does she ever do things the usual way??). He gave us a few other things to watch for, but basically we ended the call hoping that by mid-week Rebekah would start showing signs of her brother's cold, and we would have an answer for her lack of appetite and energy level.

Aaron, Rebekah, and Caleb playing with homemade maracas.

Well, this morning Rebekah was gracious enough to wake up with a very congested nose and cough. While we certainly wouldn't wish her to be sick, we are very thankful that we can blame all of these symptoms on a cold and not on her heart. Now we are praying that she can fight this cold off in a couple of days and avoid a hospital trip. :)

Zac and Rebekah, our oldest and youngest.
When did they get so big??

Rebekah was a little couch-potato over the weekend. She wanted to be held, cuddled, and loved on, and we were all happy to comply. :) In the above picture, Rebekah snuggled on the couch with Zachary for a long time while all the kids watched Snow White for the first time. They loved it! Rebekah was especially cute; she kept pointing to the TV saying, "Look! Look!"

Happy Valentine's Day!!

The kids and I made cookies for Valentine's Day on Saturday. We all had one after dinner on Saturday night. Rebekah wasn't sure what to do with hers. She kept pointing at it, poking it, pinching frosting off, and talking about it, but she never did pick it up and eat it. Oh, well, she had lots of fun with it! :)

Rebekah is "so big!" She also has frosting everywhere.

In other news, we did hear back from MUSC last week regarding the schedule for Rebekah's next heart catheterization. Dr. Bradley (Rebekah's surgeon) does not see any benefit to moving the heart cath any sooner than it is already scheduled (March 7). He really feels that the high pressure is due to the one-lung situation and is not something that will be resolved in the cath lab. So, his expectation is to get a general "lay-of-the-land" so to speak, of how Rebekah's heart looks now in preparation for another open heart surgery. I'm not sure exactly when that surgery (if needed) will be, but according to Dr. Lucas, he does not anticipate it immediately following the heart catheterization (as in the same week). He said what will probably happen is that we will have the cath, come home, and wait for a phone call from MUSC after all the cardiologists, cath doctor and surgeon have had time to review Rebekah's case and get it on the surgery schedule.

Even covered in frosting, I'm still cute!

I guess that about wraps up the latest developments here. Continue to pray that Rebekah recovers from this cold quickly and that she stays healthy between now and time for her heart catheterization. As I recall, last year around this time we were also praying for Rebekah to stay well prior to a heart cath. Same song, different verse. :)

I just have to quickly share a huge praise for our little buddy, Owen. He had major open-heart surgery last week Tuesday to repair or replace his tricuspid valve. The surgeon was able to repair Owen's valve, so there was no need for replacement! This means that he will be a candidate for the third surgery of the three HLHS surgeries, and will be scheduled sometime later this year for that surgery. His recovery is going wonderfully, and there is talk that he might be going home as early as tomorrow!!! Way to go, Owen!!

Rebekah says hi to Grammy and Nana!

Ummm, yes, she can talk! Matter of fact,

we have a hard time getting her to be quiet sometimes!!

Nancy

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

Baby Joshua

This has been a rough week in the heart community! Another sweet boy, 7-week-old Joshua, died in his mother's arms yesterday morning. Joshua had an older brother and sister who are understandably questioning why their baby brother is not going to be coming home. Please pray for Jill and Shane and their children at this time. You can read more about Joshua and his family by clicking here.

Ewan Eliezer

It is with much sadness that we extend our condolences to James and Kirsten in the loss of their precious son, Ewan. In the world of heart babies, each one is a part of the family, and the family hurts when one is lost.

Kirsten wrote this beautiful post about their last hours with Ewan. They have such a strong testimony and assurance that they will be with their baby boy again in heaven.

Our prayers are with you, James and Kirsten. We will always remember your precious Ewan.

Nancy

Baby Ewan

I have just learned tonight that a little heart buddy is in very critical condition. Baby Ewan (pronounced you-un) is just two weeks old today, and has already undergone multiple invasive procedures as a result of a congenital heart defect called Tetralogy of Fallot. In Ewan's case, the tetralogy is so severe the doctors were unsure they would be able to attempt repairing his heart. Two days ago, Ewan was taken off ECMO (heart and lung bypass machine) and was doing well. After several hours, it was obvious that his heart was working too hard and he was put back on life support. As of today, Ewan's parents (and doctors) are facing the tough decision of whether to try another life-saving procedure or let him go. Please pray for the Peterson family tonight - for peace, comfort and wisdom. And if you'd like to see some adorable pictures of Ewan and read more of his story, you can find him by clicking here.

It is always heart-wrenching when parents watch their children suffer, whatever the reason. But I think we share an unbreakable bond with parents of heart babies, no matter their race, beliefs, location or background. It is only by God's grace that we have not had to face a similar situation with Rebekah, and I cannot say with certainty that we won't. But I know that whatever we face in the future, whether the coming surgery, or years later, that God will give us the peace, grace and strength we need to trust Him.

It is on days like today that I am reminded that the therapies, doctor's visits, oxygen, feeding tube and everything else that we have with Rebekah are really nothing in light of the decisions and pain that others are facing. Those whose children are no longer here, or whose children are clinging to life in a hospital would give anything to have their children home, no matter what little inconveniences come with that. I am reminded of how blessed we have been and continue to be.

My heart is very heavy for James and Kirsten tonight. Please, please, uphold them in prayer, and feel free to add them to your prayer list in church tomorrow.

Nancy

A Tribute to a Fighter

It is with a very heavy heart that I share with you: Josiah Nathaniel Wilson was freed from his earthly body this afternoon around 1:30. Josiah means "Jehovah has healed," and that is certainly true now more than ever. Josiah will never know pain or suffering again.

Josiah, you were a miracle baby and brought your family much joy. You hung on and defied the odds so many times. You are loved and will be greatly missed.

Please be in prayer for Milo and Erin and their girls, Daylia and Hazyl. Pray that God will give comfort and peace in the coming days and months.

Drew and 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.

Tuesday

Today has definitely been a day of ups and downs! After Rebekah's refluxing incident yesterday, the doctors felt it was in her best interest to do a swallow study and an upper GI. The results? Rebekah is aspirating both thin and thick liquids into her lungs. This rules out bottle feedings for right now, although she is scheduled for another swallow study on Friday. There is a time limit on how long a baby can be under the special machine that allows the doctors to see where the liquid goes when it is swallowed, and the doctors were not able to get a liquid thick enough during their time limit today. On Friday, they will start where they left off today to see if Rebekah will tolerate even thicker liquids. If so, we will thicken her milk and still be able to feed her a bottle. If not, we are looking at going home with a feeding tube for a few weeks or months until Rebekah's body is coordinated enough to not aspirate her feeds.

Isn't she cute???!!

We had actually been warned that aspirating is a common problem for heart babies simply because their body is trying to do so much at once. Rebekah has to breathe with one less lung than you and I, she has to pump blood to her heart and lungs with a heart that is not working correctly, and now we are asking her to suck and swallow at the same time and get it to the right place! The feeding will come; it just may take her body a little time to mature to the point of being able to coordinate all of those functions effortlessly. Until then, we will give her as much help as she needs to eat and grow.

Beautiful Bekah

The other test that was done today was an upper GI. Although it was no surprise to us, the doctors found that Rebekah has a significant amount of reflux. So, in addition to the Reglan and Zantac that were started yesterday to help with her reflux, Rebekah will also be taking Prevacid. I believe the doctors also increased her dosage and/or frequency of Zantac. In spite of all of the results, the doctors still wanted to go ahead with compressed feeds today. So we moved to one hour of feeding and two hours off. That worked great until the third time they tried it. Shortly after the feeding was done (like 5 minutes or less), Rebekah refluxed a small amount. I had just finished cleaning her up and cleaning up her bed when she spit up again, and this time it was everywhere. Head to toe, all over her bed and forceful enough to lose her feeding tube. Her day nurse, Heather, came and helped wipe Rebekah off, but we are waiting for the night nurses to come in and give Rebekah a bath and get her sheets changed.

Rebekah with no tubes!!

It seems that Rebekah is earning a reputation on this floor due to the number of times she has managed to lose her feeding tube in just two days. She managed to pull it out yesterday morning, again this morning, and then it came out again this evening when she spit up. It's kind of nice to see her whole face again, but getting that tube in is not a pleasant experience.

Please remember the Kiersey family in your prayers tonight. Their baby, Avery, whose button is on our side bar, has been having a very tough week. The doctors are out of options to try, and her parents have decided to not put her through any more procedures. They are planning to spend some time with Avery tonight and then remove her from life support. I know they would appreciate your prayers as they hold their little girl for the last time tonight.

Despite all of the ups and downs we have had, we are so thankful for how well Rebekah is doing.

Nancy

Thursday

Well, it was Thursday when I started this post! :) I was a little too incoherent last night to get it finished, so we'll try this morning after I've had some sleep.

Yesterday was a fairly eventful day for Miss Bekah. The most exciting thing for Mommy and Daddy is that she had about 15 minutes yesterday afternoon of being awake and alert. It is the first time we have really seen her eyes open at all (except for Drew being able to see her awake right after delivery). Because she is a newborn (and they sleep a lot anyway!) and because of some of her medications and her heart/lung problems, she tends to sleep all day. Yesterday she spent almost all of her awake time staring at her daddy. He didn't mind! :)

Rebekah watching Daddy

Yesterday was line-change day, which meant that all of the lines and tubing for Rebekah's IVs had to be changed. What a huge job!! There are lines and tubes running everywhere. I'm glad it was Ashley (Rebekah's nurse yesterday) and not me trying to figure it all out! Ashley had to lift Rebekah to get some of the bedding changed under her and we took the opportunity to get a picture of Rebekah and Daddy.

Rebekah and Daddy

The doctors met yesterday afternoon to discuss Rebekah's surgery, and we think we have a surgery date on Tuesday. Rebekah would be the first case of the day, which would put her surgery time around 8:00 in the morning. We realize that this is a tentative time since an emergency case or delay could bump her time or day, but at least it's a goal to work towards.

Rebekah almost asleep again, but she was trying hard to keep her eyes open.

The doctors have given us a lot of information and different scenarios, and we have been trying to assimilate all of it. Because Rebekah only has one functioning lung, the doctors are trying to be extra cautious in how they proceed so her lung is not overloaded. There was talk of splitting her initial surgery into two parts (the first to create a pulmonary artery and a few months later closing the hole in her heart). I think they have gone back to planning on just one surgery to do both procedures at the same time, which we feel is for the best. It will keep her from having two different open heart surgeries just a few months apart.

Rebekah loves to hold her Daddy's finger.

Socks!! They look really cute on her.

It looks like Rebekah is wired up to a bunch of stuff, but it is really more simple than it looks. There is a line coming out of her left sock that is her pulse oximeter. Basically, that just measures how well her blood flow is getting to her lower extremities. It just velcroes around her foot. The blue splint on her left arm is to support her hand and keep it from moving around because she has an arterial line (an IV in the artery) in her wrist. Most of the tubes and wires laying on the bed all connect and run into that arterial line. There is some tape on her belly around her belly button, and that is holding down a central line (another IV) that the doctors were able to get in through her umbilical stump right after birth. And then she has two tubes in her mouth. One is obviously the ventilator helping her to breathe. The other is an ng tube (nasal gastric tube) which runs to her stomach to help suction out any fluid that builds up as a result of the ventilator.

Mommy got to change Rebekah's diaper (with Ashley's help)!!

We had hoped that Rebekah might be able to have the ventilator removed, but the doctors are still being very cautious. As Dr. Forbus said, he doesn't want her to burn him again! Because they took her off a little early the first time, they are trying to avoid taking her off too early again and having to reintubate. So, they watched Rebekah through the day yesterday and the plan was to watch her through the night. There is a slight possibility that she may be extubated this morning, but it is likely that she will just remain on the vent until her surgery.

Why, you ask? Well, after looking at all of the scans and tests that were done in the last couple of days, the surgeons have decided to perform one more test on Monday - a heart catherization. Basically they will run a small catheter through her groin and into her heart in a final attempt to find something that they can work with to provide some function in Rebekah's right lung. There are several (4 or 5) small veins or collaterals in different locations that supply blood to the lung tissue, and the hope is that one of those might be a small (and we mean very small!) artery that could be used to supply blood flow to the lung if it was connected in the right location. If there is any chance to save even a little function for that lung, the doctors are willing to try it. Initially, if there is something there that the surgeons can work with, she still may only have 5% use of the lung, but it is better than nothing! And the doctors feel fairly confident that the artery would grow some with Rebekah and with continued use and blood flow. Rebekah will never have the normal balance of lung use like we all have, but it would be nice (and avoid a lot of potential complications) if she had some function in that lung.

So, all of that said, Rebekah will have to be on the ventilator during the catherization, so the doctors would rather leave her on the vent through the weekend rather than take it out and put it back in so quickly. Basically, if she doesn't have it removed this morning, it will stay in until she is completely through her surgery and no longer needs it at all.

All tired out from her diaper change and playing with Daddy!

On a very fun note, we met another family from Greenville yesterday. Their little boy, Josiah has been in the PCICU for six weeks, but seems to be doing much better in the last couple of days. We both knew of each other and that we would most likely be in Charleston at the same time, but it was fun to connect and actually put faces with names! Feel free to hop on over to their blog and check out their little cutie!! :) You can click on his name, or click the link on the left side of the page under Heart Buddies.

That's all for now, I think! We're heading over to spend the day with the little sweetheart!

Wow!

It is almost unbelievable to me the impact that one little girl has had in our lives before she is even born!! We have heard from friends and strangers alike from almost every part of the country so far, and at least one from outside the U.S. Feel free to leave a comment and let us know where you are! :)

God has also been leading us and providing some direction and answers for some of the very specific prayer requests that we have listed. I haven't posted "answers" yet because there are still some variables, but I wanted to at least give a little bit of an update.  Drew has an interview scheduled for this Thursday at 9:30, and we are praying for very clear direction as far as his job situation. Some of you may not know this, but Drew has not had a permanent, steady job since April of last year. Due to the lack of steady work and our own financial insecurity, our pregnancy was not at all planned. But God knew, and we know that He has a plan for our lives. Please join us in praying about the interview and that we will be sure of what the Lord's will is in this situation.

Also, we have found a little more information about the Ronald McDonald House (RMH). They provide housing that would accommodate our entire family (Drew and I and the boys) if we wanted to have them with us for a weekend or a few days, so that is a huge relief to know that we would have a place for them when we are able to bring them down. Also, the RMH is just a block and a half from the entrance of the Children's Hospital. As it looks right now, if we are able to stay at the RMH, we would not have a transportation problem, and we would not need to have an additional vehicle in Charleston. That would be a definite answer to prayer as an additional vehicle would be more costly than the two we already have (obviously!). We will know more about availability and have more specific questions answered when we go to Charleston for our meeting with the doctors there in May, but we were very encouraged to see some possible answers to prayer regarding our housing and vehicle situation in Charleston.

I received a couple of email updates today from Angie, Andrew's mom. Andrew was scheduled to be released from the hospital today, but developed some complications in the night. Thankfully, they were still at the hospital and not already at home. The doctors had to place another chest tube in a procedure this afternoon to drain fluid from his chest. The last I have heard from Angie is that Andrew should be resting more comfortably once the fluid drains off, and the doctors will watch him carefully through the night. Please continue to pray for Andrew, Angie and the rest of their family! If there is one thing that I have really learned from talking (blogging, emailing) with moms of other Truncus babies is to expect the unexpected!

We will be meeting with Rebekah's cardiologist tomorrow afternoon, and we are praying for a good report - good growth, normal amniotic fluid levels, and no further heart defects or complications. We will be sure to update tomorrow evening with the latest news and maybe some new pictures!! :)

Nancy