Warm sunny sunday

Praise the Lord Rebekah has improved and was able to come home today. She still needs a few more days of rest, but seems to be on the mend.

We are enjoying the warm weather and a afternoon with all of us home and together again.

Thanks for Praying for our family and situation.

D

Thank you

I just wanted to post a simple thank you to all who have given to the Rebekah Grace Fund.

We like to keep this blog about Rebekah and the great things the Lord is doing in her life and ours. One of those is the Lord providing for our family and Rebekah's needs. It is such a blessing to know that when we are not sure how to take care of our obligations the Lord has a way already planned. His provision always comes at just the right moment when we need it most. We thank him for his loving care of us and for his working in hearts to lead you to help Rebekah and our family in his perfect timing.

D

Home Home Home

The 24 hour clock has run out and the verdict is we are going HOME. Mom and Rebekah are all packed and unplugged from the monitors. They just need to see one last Dr. on rounds then they will be free to head home.

We will have quite a surprise for the boys when they get home from school today.

Praise the Lord that Rebekah has done so well and that she is able to come home. Thank you to all of you who faithfully pray for her and our family. We can see God working and guiding us along this journey with Rebekah.

D

Let's Roll!

We're (almost) ready! Lists have been made, notes have been written, instructions given, and packing is in progress. We are still on target to leave by mid-morning and hopefully arrive in Charleston by mid-afternoon. Please pray for safety as we travel as most of South Carolina is forecast to have rainy, stormy weather for the next two days. Drew and I will be driving separately so that he has the flexibility to return to Greenville to be with the boys as needed.

As far as we know, we will not have internet service at the house we are staying in. So, our updates will be limited to our time in the hospital or Facebook updates. We are not planning to be at the hospital on Wednesday, so our next blog update should be sometime on Thursday.

Thank you for all of your continued prayers and encouragement. To our friends at Beacon Baptist, your love and generosity has overwhelmed us. Thank you seems so inadequate, but we want you to know that we love and appreciate each 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

Prayer Requests for Surgery

As Rebekah's surgery date approaches, we have been asked numerous times for ideas of how others can help. By far, the most important thing we ask of you all is that you pray for us. We have listed several specific ways that you can pray for Rebekah and our family below.

First, we praise the Lord for meeting our needs for housing and transportation while we are in Charleston. If you have never heard of CrossBridge ministries, please take a minute to look at their website. They have an amazing ministry, and I know they would also ask for your prayers as they continue meeting the needs of patients and families.

Pray that Rebekah stays healthy so her surgery will not be postponed. These next two weeks are critical for her, and she is currently recovering from a cold. Please pray for her quick recovery and for no more illnesses. Also, please be understanding when you may or may not see us out and about as we are trying to keep ourselves well so that we can care for Rebekah.

Pray that the surgery will go smoothly, that it will be successful, and that there will be no complications. Included in that, please pray earnestly for the surgical team, led by Dr. Scott Bradley, and all of the PCICU doctors and nurses who will be involved in Rebekah's care. I know we have said it before, but this is a major surgery. It will not be a walk in the park for any of us.

Pray that Rebekah will recover well with no post-operative infections or complications. We know from past experience that anesthesia and paralytic drugs are not very nice to Rebekah. She has a difficult time waking up after sedation. Pray that her recovery time will be as easy as possible for her.

Pray for the Lord's provision for our financial needs for surgery and the weeks of recovery afterwards. While we do have our transportation and housing needs met, there are other things like gas, meals/groceries and parking fees that will be needed. We have been blessed already with many offers of help in these areas!

Pray for safety as we travel between Greenville and Charleston. It is about a four hour trip one-way, and that is not an easy trip for a 15-month-old. Especially one who is recovering from major open heart surgery!

Pray for the boys as life at home will not be normal with Mom and Rebekah away. The boys all know (in age-appropriate terms) that Rebekah and Mommy will be going to Charleston for another surgery. While they do not know the seriousness of the surgery, they do know that they will miss their baby sister and mommy. Please give the boys extra hugs and be understanding if they seem to be more emotional than usual!

Pray for family and friends as they step in and help with the boys at home. We have been blessed by so many wonderful friends and family who help out at (literally!) a moment's notice. Thank you all so much for the many ways that you have helped out since we first found out about Rebekah's special heart. Thank you, also, to all of you who faithfully follow Rebekah's story via the blog. Many of you we have never met, but you have a special place in our lives. We could not do this without the support of so many people who are praying for us.

And, lastly, please pray for us. Having seen Rebekah go through one open heart surgery before, we fully know what to expect. And that is not a pretty sight. Please pray that we can be strong for Rebekah and that our testimony would be evident to all those around us. We meet many people while in the hospital with Rebekah. Please pray specifically that we would have an opportunity to share our faith with others through Rebekah's story.

Drew and Nancy

Next week off to MUSC again.

Just a quick update. We are thankful that Mom and Rebekah have been home for a little more then a week from the hospital. Just as we are settling in, we are off this coming week on another adventure.

We are heading to MUSC for our long awaited heart cath. procedure. We are scheduled for second case in on Tuesday morning. We have been told that this can be a 4 or 5 hour procedure. We hope to get lots of good information to be able to make solid decisions on when and how best to move forward with Rebekah's heart repair.

They also are going to be scoping Rebekah's lungs and bronchial tubes for a possible additional side effect from the DiGeorge. Rebekah's pulmonologist thinks that Rebekah's trachea and/or bronchial passages are "soft," meaning they have not become firmed up like they should have in a baby Rebekah's age. If they find what they think is happening it will explain some of Rebekah's wheezing and heavy breathing. She seems to not always respond to the breathing treatments and medications. That could be because it is a physical problem and not one that can be treated with medications. In time this is something that she should grow out of.

While the heart problem is something we know about and have been dealing with for sometime now, we are still finding all the little quirks about DiGeorge and how it shows up in our little lady.

We will be traveling Monday to Charleston and hopefully back home by mid-week. We will keep everyone up to date as we progress through these tests.

Thank you everyone who follows along with Rebekah for your prayer support and thank you to all of who have graciously contributed to Rebekah's fund to help with our expenses. We appreciate it greatly and are so thankfully that the Lord has allowed you to help us in this way.

D

Updated prayer requests

We seem to have found a break in the chaos here. I thought I would take some time to update the prayer requests for Rebekah and the family. We appreciate all of you who have faithfully prayed and followed along with us as Rebekah has joined our lives and begun her long journey. Please check out the updated side bar to the right for our current praises and prayer request.


D

Post-Op!

It's 10:45 and Rebekah's surgeon just came in to speak with us. The surgery went perfectly, and Dr. Hebra was very pleased. He was able to place the g-tube and do the Nissen procedure all laparoscopically, so she did not have to have the large incisions that could have happened. She just has six small (1/2 inch or less) incisions that will heal fairly quickly.

Rebekah is still on the ventilator and will be until she fully wakes up from the anesthesia. Based on her previous experience under anesthesia, we are expecting that it will take a while, but we are thankful she is doing so well.

We should be able to go in and see Rebekah in about a half hour. We will post some pictures and another update later on today. Thank you all for your comments on facebook and prayers. Rebekah is one very loved little girl!

Nancy

If you think of it, please keep Zachary in your prayers today as well. He was heading to the doctor this morning for a possible ear infection and almost certainly a sinus infection. Pray that he is well before Rebekah comes home and that no one else comes down with his sniffles!

September Prayer Requests

We thought we would share some updated requests and needs. We have two big ones around here. One being I still do not have a permanent job. While the Lord has been gracious to provide for our needs with my heart felt gifts and some hours here and there on odd jobs we are still praying for some thing more stable.

Our other big request as always is Rebekah and her care. We are specifically praying for wisdom on making the best choices for her care. As you know if you have been following along Rebekah is looking to have a G-tube installed very shortly. We are praying that this surgery will go smoothly and that there will not be a lot of recovery time. We are praying for funds to come in so that we will be able to make at least 2 trips to MUSC to have this procedure done. We will mostly likely have a 2 day trip for a clinical visit and then a 2nd trip up to a week long stay to actually have the surgery.

We are praying for 2 things to come out of this surgery. One that Rebekah's reflux will be stopped so she is more comfortable and able to eat right. Two to help her to move forward with the right growth and weight gain.

Also like last time with the open heart surgery we are praying for all the details of child care and strength for the rest of the family.

Of course along with prayer requests I will mention some praises too. I am thankfully for all the hours and help Grammy and Grampy have given to taking care of the boys. I am also thankful that the boys are so flexible and go where ever we need them too. Most of all we Praise the Lord for caring for our family and guiding us each step of the way.

D

Continued prayer for our little lady

Rebekah has had a busy week so far. We met with the cardiologist here at home yesterday. Lots of info and I am sure my wife will post more when she has time. But the biggest concern at the moment is that Rebekah is having trouble with her feeds. She is so tired out that she has been sleeping 6 hours at night. While normally this is a good thing, for her it means she is missing a feed. She has very low endurance right now and just the short time during her echo yesterday exhausted her. We are going for a weight check tomorrow, and if we don't have some forward progress, they are going to get aggressive with her feeds. The first step will be to fortify her milk with even more calories than it is fortified with right now. After that, the doctors would try to hospitalize her in Greenville and feed her through an NG tube like she had in Charleston. They would try that for a week to see if she can gain a little weight without expending the calories to eat. Sometimes babies need just a little extra growth to get over the hump and begin to eat well on their own. If those two options still don't produce the growth that the doctors want to see, we have been told that Rebekah will probably have to go back to Charleston for a G-tube. We knew this might be a possibility, but were hoping it would not be necessary.

As far as Rebekah's heart, it is doing great. She is retaining very little fluid and her heart function is very good. Her lungs are also doing well right now.

We hope as you think of us and Rebekah that you would continue to pray for us. While we have gotten through the scary part and returned home for now, there are still many miles to go down the road. We ask you to continue to pray for Rebekah's growth, and our adjustment to a new kind of "normal" for our family. The boys are doing great and have been wonderfully helpful, but it is still a lot of adjusting for all of us to make the family run again. Also continue to pray for the Lord's gracious provision for all our needs financially and emotionally.

We have to give all the praise to the Lord. He has lifted us up and walked us through all of this adjustment and adventure. Through all of this He has given Nancy and I the most precious gifts, our children.

Once again thank you to all the family and friends who have prayed and given to help us.

D

Big Praise - WE ARE HOME!!

We have some wonderful news to share! The Lord is great. Rebekah is doing so well that the doctors sent us home yesterday evening. All three of us were so pleased to be home and sleeping in our own beds.

We would love to see everyone and want to share our little miracle with all of you, but due to Rebekah's health needs, the doctors have asked us not to expose her to a lot of being around people for a few weeks. So we are asking that you not visit just yet, especially if you have been sick or have been around someone else that is sick. We have so many of you that we want to see and share Rebekah with, but we just need to give her all the chances we can to stay healthy and growing to prepare for the next surgery. We are pleased she is doing so well, but have to remember that she still needs her heart and lung fixed soon.

We thank all of you for the prayers and support that have gotten us through the first few weeks. We can't wait to share Rebekah with you and we hope that you continue to pray for her as we take the next steps in this adventure in Rebekah's life.

We should have the boys home tomorrow and then we will be a family again. I am excited to see how they will interact with Rebekah now that there are no wires and tubes attached. Sister is finally here and at home to complicate their lives.

We are so blessed with all of our kids and thank the Lord for five wonderful gifts to take care of.

D

P. S.-If you didn't catch it on our family blog, I have a 3rd interview on Wednesday next week. Lots of praises today.

Moving on up!!

Rebekah has gotten her traveling papers. She is moving out of the PCICU today. She and Nancy will be moving into a regular room in the Children's Hospital. They will have their own room and will be able to have the brothers come visit at some point.

I am heading home to take care of some things and to see the boys. Rebekah's next goal is to continue feeds by NG tube and eating from a bottle. Also she needs to gain some weight and then we will be able to bring all the ladies home.

We are so thankful the Lord has brought her this far.

D

Friday

What a day! When we got to Rebekah's room this morning, we had a very nice surprise - she was no longer on the ventilator! We knew there was a possibility it might be removed this morning, but the doctors really didn't sound too positive about it. So we started the day off on a great note!

Rebekah off the vent and sleeping peacefully.

Sweet baby face

We are thinking Rebekah may have some sensitivity to the tape that is used to tape her lines down. That is why she has such red cheeks and a little sore on her upper lip. It is something that her nurses are aware of and we are watching.

Bekah holding Mommy's finger

Rebekah was a little fussy early this afternoon, so her nurse brought a pacifier and some sugar water. Bekah cannot have any "food" (milk/formula) until after her surgery, but she seemed to like sucking on the pacifier after it had been dipped in the sugar water. She smacked her lips and kept sticking her little tongue out. It was really cute! :)

Rebekah loved her pacifier!

And for the grand finale today, we were able to hold Rebekah for the first time in her little life! The nurses had checked with the doctor earlier in the day but didn't tell us about the possibility just in case the doctor said no. Since Rebekah wasn't on the ventilator and since she lost her arterial line overnight (the IV that was in her left arm), we were able to hold her with only minor adjustments for her equipment. We were a little bummed that she lost the arterial line, but it was great to be able to hold her all afternoon. The doctors will place another line before her heart catherization on Monday.

Daddy waited a long time to hold his little girl!

Mommy was pretty excited to hold Rebekah, too!

All in all, today was probably the best day we have had. We are expecting some more up and down days coming up, especially next week when Rebekah has heart surgery, but we enjoyed today very much!

Nancy

Thanks to our Lord and Savior

Now that things have slowed down to a controlable crazy instead of wide open crazy some very much needed words that need saying.

Dear Lord,

Thank you Lord for our little girl. Thank you for a great delievery and for the grace and strength to face this new adventure in our lives. She is yours and we are so undeserving of your trust in us to raise her. May we always teach her and raise her in your word and will. All the praise for her and her safe arrival goes to you who is in perfect control of all things.

In Jesus name I pray

She has arrived!!!!!!!!!!!!!!!

Rebekah Grace Ellis has arrived. She is 5lbs. 15oz and 18in. long. Mom and Bekah are doing great!! So far Rebekah is breathing on her own and not showing any signs of trouble. The doctors are working on running all kinds of tests to determine the extent of her heart defect and if there are any other problems. Praise the Lord our little one has arrived. He is so gracious and we give all the praise to Him.

D

Baby Shower

Due to Mommy not feeling well today, Rebekah and I will try to post this and Mommy can edit or add to it later.  

Mommy and I had a nice surprise yesterday.  I am amazed at how sneaky Daddy and several of Mommy's friends are.  They managed to pull off a surprise shower for Mommy and Me.  After 3 months of planning and wondering if it all could be done, we did it.  

Mommy had Grammy, Aunt Aimee, and Cousin Peyton come to take Mommy to lunch and shopping, but what Mommy didn't know was that they were taking her to my shower.  Mommy was very shocked and enjoyed it very much.  I want to thank everyone that helped plan and who attended for a really nice luncheon for Mommy and Me.  Mommy and Daddy want to thank everyone for all the nice gifts that everyone brought for me.  Also, we want to thank Ms. Peyton for all the clothes she passed to me that she is no longer using. 

Daddy and Mommy worked on hanging some things on my walls last night.  Daddy and I thought it best not to post any pictures yet.  Mommy wouldn't be too happy with us if you all saw my messy room.  When Mommy is feeling better and has time to sort it all out and put things away then Daddy and I will post some pictures.   

Love you all,

Rebekah Grace