We're Heading Home!

Praise the Lord we are heading home! I just signed the official going home paperwork so as soon as Elle wakes up - we are out of here! Her surgery was on 07-07-11 at 7:00am and it was her 7th surgery. The locker we had on the ICU floor was locker #7. We KNOW God has been with us through this whole ordeal and we know he will continue to watch over and protect and heal Elle!

Very Special Visitors (that made our day better!)

This morning was extremely difficult. It just started out bad! Poor Elle didn't sleep great Sunday night which meant I didn't sleep that well either. She woke up around 6:20am - just early enough to say goodbye to Lee as he headed to work. Thank goodness we have a coffee maker in our room because that first cup of coffee sure was needed after only about 3 hours of sleep! Right after Lee left for work, Elle had to have some blood drawn. Since they have removed all her lines, they have to stick her little fingers to get the blood. It's just awful! The technician drew 2 vials of blood and poor Elle was screaming the entire time. Right after the tech left, our nurse came in and told us that one of the CV nurses was on her way to come and pull the pacing wires that were still in Elle. The pacing wires are two little wires that were situated against Elle's heart and then they extended outside her body. Just in case her heart stopped, the pacing wires could be attached to a little defibrillator to re start her heart. So...around 8:00am, the nurse came down and pulled out Elle's pacing wires. This is done with no drugs because the doctors and nurses need to be able to see how Elle's heart responds to the wires being pulled. Of course Elle is was crying and to make matters worse, after the wires were pulled, Elle's blood pressure had to be taken every 15 minutes for an hour. The cuff was attached to the portable machine and it would just start automatically and scare Elle. Ugh! Poor little girl! Around 8:30am, Elle's respiratory therapist came in to do a treatment to help her breathe a little better and (thankfully) she responded well to the treatment. Close to 9:00am (and right after Elle's final blood pressure was taken), the technician that had done the earlier blood draw came in and said that she needed to draw another vial of blood. Ugh! Poor Elle just couldn't catch a break and it was only 9:00am! Dr. Morales came by to check on Elle. He asked if she was going to have an echo today and I told him no - it was scheduled for Tuesday. He got this puzzled look on his face and after checking out her scar, he left. Not two minutes later our nurse came in and said that Elle's echo had been rescheduled to 9:30am. Oh the powers of the surgeons! As I was putting Elle's shoes on her to go for the echo, our nurse noticed that one of Elle's iv's that was in her foot had come almost all the way out. She needed to completely pull it out before we went for the echo - and after some more screaming from Elle and lots of blood we were heading upstairs for the echo. Elle still wasn't completely calmed down from all the activities of the morning so it wasn't surprising that she screamed for the entire 30 minute echo. She has never screamed during an echo - usually she just sits there and watches whatever movie is on and holds the wand as the technician moves it over her chest. Not today! By 11:00am we were back in our room and I asked the nurse if anything else was scheduled for the day because poor Elle needed a break. Thankfully, she said no and we could rest. Elle went right to sleep and slept for a solid 2 hours. Praise the Lord! When Elle woke up from her nap, we had two very special visitors. My bestie from college, Laura, and her husband, Matt....aka Aunt Eldy and Uncle Matt. Matt is taking a big medical test here in Houston tomorrow so it worked out well that they could come in town all the way from Mississippi to visit Elle Belle. Elle loved all the attention. She took Aunt Eldy and Uncle Matt on a walk all the way around the unit - not once but twice....and she lured them in to reading her books. She was patting beside her in the bed saying "Eldy sit." Laura and Matt's visit was exactly what we needed to cheer us up after the eventful morning! I am so thankful for such amazing friends!

Matt and Laura left around 4:15pm and as they were leaving, Elle and I were being escorted down for Elle to have an x-ray. She did great during the x-ray and we were back in our room (our "home" as Elle calls it) with an hour. Tonight my Aunt V and Uncle Jim drove in from College Station with their daughters Emily and Sarah. Elle was so excited to see them and she entertained them for quite a while. We even took them on a walk around the unit - Elle's goal is to walk around the unit 4 times and with the help of all our visitors, Elle did it!

I am doing a Bible Study over the book "Respectable Sins" by Jerry Bridges. The events of the morning made me reflect back over the book so much. As I was trying to calm Elle down after the echo, I kept praying that God would give Elle peace and that I would calm down as well. In the book, the author states, "Psalm 139:16...But the same truth that God has ordained all our days, with all their ups and downs, their blessings and disappointments, can help us deal with the circumstances that tempt us to be discontent. Your circumstances, and however difficult they may be, the truth is that they are ordained by God for you as part of His overall plan for your life. God does nothing , or allows nothing without a purpose. And His purposes, however mysterious and inscrutable they may be to us, are always for His glory and our ultimate good."

Amen! God brought about our hard morning so that we could truly be thankful for the events of the afternoon - wonderful visitors and a wonderful Healing Father!

Elle's First Trip Around the Floor

Elle had a great day on Sunday. After morning rounds, we decided to take Elle on a walk to see the fish on the other side of the unit. It's kind of fun to watch all the kids and parents out doing laps on the 15th floor. Some parents are pushing their kids IV poles while their kids are walking - some parents are pulling their kids in wagons and in the case of a very special young man, his dad is pushing a giant 300lb machine that is keeping his son alive while his amazing son does laps with an entourage of nurses and friends. We were exctied to get Elle out and in all the action! The floor is a giant rectangle with rooms around the outside and then nurses stations, office and elevators on the inside. Our goal was for her to walk the entire lap around the floor. Now, Elle's not the best walker to begin with so we weren't too sure how this was going to go....but she did great!

We made it to the fish tank on the other side of the unit - but Elle wasn't interested in the fish...she wanted to drive the red fire truck!

It took us almost a full hour to get around the entire floor with Elle scooting along in the fire truck. She was waving to everyone who passed her. It was so good to see her little personality coming back out!

After our trip around the unit, we came back to our room hoping that Elle would take a nap. She had a horrible night on Saturday night and (truthfully) both Lee and I were looking forward to naps! Well - Elle thought otherwise and decided to stay awake. Oh well - at least we had some visitors come up and keep us company for a bit...

Elle got spoiled rotten by Meme and Granddaddy. Her favorite gift was the minivan that plays music...too cool! And thank you mom and dad for washing our clothes!!

After all our guests left, we were FOR CERTAIN Elle would nap....nope. Thankfully, we have plenty of movies/books and games to keep her occupied so we watched Madagascar and some of the golf tournament before we decided it was time to go on another walk. This time, Elle wanted to drive the black police car. It has a little siren that makes noise and she was loving it!

Such a busy full day for such a little girl! Aunt Mel and Uncle Austan brought us up dinner and by 6:30pm - Elle was ready to call it a night. So was I and I must have drited off to sleep becasue the next thing I knew it was 10:00pm and Elle was up with a nasty drainge induced cough and runny nose. Poor baby. Once she settled down after a pretty narly coughing fit, Lee went to bed and I stayed up with our little night owl. I'm pretty sure we watched Madagascar again and I know for sure we watched Tangled around 1:00am. She just didn't/couldn't go back to sleep. I was about to go for another walk with her when she finally closed those little eyes and fell asleep. I think she finally fell asleep around 2:30am. She has a very busy Monday so I'm just praying that we can make it through the day and manage to get a few naps in! We are so excited to see Elle's progress and excited to see what happens in the next few days. We might be getting sent home! Our continuous pray is thanking God for what he has done in our lives and in Elle's little life and that during her recovery and progress we give HIM glory first!

Eventful Night and Elle's First Steps

We had a very eventful night last night. They started Elle's feeds yesterday through her feeding tube. She ate very well orally yesterday but just didn't eat quite enough to not depend on the feeding tube. She received her last feed at 1:30am and I think it was just too much food for her little stomach because she woke up with a little cough and then before we knew it she was throwing up. It wasn't too bad but I think her little tummy was just so full that the excess had to come out. After throwing up and getting her teeth brushed and jammies changed - she fell right back asleep...only to be woken back up to have her blood pressure taken and a chest x-ray around 4:00am. Poor little baby! She wasn't allowed to have anything to eat or drink after 4:00am because at some point today they will be pulling our Elle's chest tube. When we woke up this morning, Lee wanted to see if Elle could walk. This was her first time to stand up since surgery and she did very well!

Lee supporting Elle as she took her first few steps

We have a wonderful PCA 9Patient Care Assistant) who set up a washing station for us this morning so we could give Elle a bath. She was pretty crusty from all the tape and stuff she has all over her little body. She can't have real baths for a while because of her chest incision (and also because of the chest tube she has coming out of her chest). Elle wasn't' a fan of this type of bath or of the oily stuff we had to use to take off all the tape - but we got her all washed up and dressed for the day.

Elle waiting for her "bath" to begin

The doctors rounded early this morning and the plan is to take the chest tube out today and then take the pacing wires that are hooked up to Elle's heart out tomorrow.

Elle is watching the doctors right outside our door. She loves being able to open the blinds that are right at her level

She has figured out how to raise and lower her bed - this could get us in some trouble!

We are looking forward to letting Elle walk over to the playroom today to go and see the fish and maybe play with some of the toys the playroom on 15 has to offer!

New Room!

When Lee made it to Elle's room this morning, she told us she wanted to color and she initiated sitting up on her own. This was huge progress!

We had a wonderful nurse and had a wonderful morning in the CVICU. Elle had a little more energy than she did yesterday - yea for progress!

At 11:30am - news came that we were being moved to the 15th floor which is the CV recovery floor. Whoo hoo! Around noon we were on the move - Elle slept through the entire move and woke up in her new room on the 15th floor - complete with a few of the entire med center.

I love her little pony tail sticking up from the covers!

We had quite a few visitors yesterday which was nice. It's so nice to be in a private room now - one where we can have visitors. Elle is slowly but surely getting back to her normal sweet little self. She asked to watch the animal movie last night (Madagascar) and overall we had a wonderful evening.

Elle and Lee playing in her big girl bed

The only bad thing about staying on the 15th floor is that the nurses come in constantly throughout the night. No one is going to get very much sleep until we get home! But...being on 15 is one step closer to be being home! We are so thankful for Elle's progress!

Early Morning Wake Up Call

Lee and I were blessed to get a room last night at the Ronald McDonald House. There were a lot of surgeries yesterday so we weren't' sure we were going to get a room. In fact, we were # 3 on the waiting list. A little after 11:00pm, the charge nurse told us they had an empty room if we wanted it so we gladly accepted. The charge nurse also happens to be one of our old favorite nurses from Elle's days in the NICU. While she was never Elle's nurse, she took care of the baby next to Elle so we spent many many nights talking with her. When Elle had her 1st open heart surgery, Elizabeth had moved to the CVICU and to working days so she had Elle for a few days during our last stay here. It was so nice to catch up with her last night! She noticed that Elle was having a pretty hard time sitting up last night so she ordered a "big girl bed." It can be lowered and the head can be raised more. Elle does look so small in this bed though! We left Elle sleeping sounding last night and told her nurse, Janie, to call when she woke up. I got the call at 3:30 this morning that Elle was awake and wasn't happy. I left Lee to get a few more hours of sleep and headed up here to Elle's room to find a not happy little girl. She told me she wanted the duck book. After a few reading of Little Quack and Curious George, there were signs of the pre surgery Elle. She was talking more (the raspiness of her voice from being intubated has slowly started to subside) and told me she wanted to be rocked. She still has a chest tube in so it has been difficult to hold her with all the other wires and the chest tube. Her asking to be rocked was the straw that broke the camels back and with the nurses help, I was able scoop Elle up and rock her back to sleep in the rocking chair. It was just so special to be able to hold her again!! Before scooping her up, Elle noticed my necklace and said "momma's necklace" and then pointed to my earrings and said "momma's earrings" and then my rings "momma's rings." Then she asked where my feathers were. I have 3 small feathers in my hair that Elle just loves so she got pretty excited when she saw them in my hair. It's the little things that make my day!! She went back to sleep around 6:00am and has been resting comfortably. Today is the day that the Lord has made - I will rejoice and be glad in it!

View from Elle's room as the day begins

Friday Night Fun

Elle had a really great day during the day. While she still slept a lot, every time she woke up she got a little happier and was asking for more of her favorite things. She woke up for a while in the early afternoon and asked for two blue gloves, her duck book (Little Quack) and her pig movie (Charlotte's Web). The funny part was that she wanted them both at the same time - so we had Charlotte's Web going on the computer on a little table right in front of her and then Lee and I were taking turns reading "the duck book" all while Elle was wearing her two blue gloves.

She got a little frustrated trying to put on the gloves - her pulse ox is on her pointer finger on her right hand so we had to help her get that glove on. It was so nice to hear her say "help please" though!

She did great at drinking lots of cold water throughout the day. Around 3:00pm, my parents came and relieved Lee and myself so we could go eat lunch and take a nap in the waiting room. Thank goodness for the relief! Lee and I ate lunch at the RoHo and then took a little nap while my parents sat with Elle. She woke up for a while when they were with her and was able to eat some green jello! This is huge for Elle! Our goal is to allow her to eat orally first and rely on the feeding tube as secondary. She is still on an all clear liquid diet so the fact that she actually did eat some jello just amazes me! They let her eat the jello only because she had to get a dose of lasiks to help her go to the bathroom. She is retaining fluid so right now we are praying for pee and for her kidney function to get back on a normal schedule. She keeps grabbing her diaper so I know she is in pain when she goes to the bathroom. They told us to give it a day or two for the pain to subside from the catheter. Lee and I got back to Elle's bedside around 6:00pm and she was wide awake. She actually stayed awake until 11:00pm - 5 hours awake is a record so far! During that time she did go potty so that was an answered prayer (but we're still praying for more!). Mark and Vickie brought us dinner and were able to spend some time with Elle. Elle is so lucky to have such amazing family members that love her so much!! We are so blessed to have such amazing parents! We're praying for Elle's continued improvement. This is just such an amazing journey to be on and we are so strengthened by the love of our Lord Jesus Christ!