Surgical Update # 2

We just heard from the surgery nurse. Dr. M has repaired the VSD (ventricle septal defect) - which is one of the holes in her heart. He is next moving to the other hole - the ASD (atrium septal defect). He is going to fix that and then move to repairing the valve. She is doing good. We should have another update in another few hours. Thank you for all your prayers!

Surgical Update # 1

We just got the first surgical update from the OR. The nurse came into the consultation room and the first thing she said (through a big smile) was "she is one nice, plump baby!" That's always good to hear - gotta love those chunky monkey babies! She said that they have all the lines in and are about to make the incision to begin the surgery. She will be put on the bypass machine within the next hour. We will be getting another update in a few hours. Keep praying!

6:00? We thought you said 8:00!

Lee and I got the early morning wake up from the nurse when she walked into our room and said "transport will be here in 15 minutes." Ahh! What? We thought we had until 8:00am! I had 2 options - shower and change out of pjs or pump..I chose the latter simply due to the pain factor so while I pumped - Lee and the nurse got Elle Belle out of her pjs and into a hospital gown. Sure enough, 10 minutes later the transporter was in our room ready to take Elle to the 18th floor where the surgery will take place. I'm sure we looked pretty ragged as we were taken into the holding area - but our little Elle was a perfect little patient. She woke up super happy and was smiling at all the nurses and doctors that came to talk to us. I'm sure she was pretty happy because she got a little extra milk around 2:00am and then was pumped full of pedialyte until 5:00am. Her belly was probably full! The reason the doctors wanted her on a continuous pedialyte feed from 3 until 5am was because they couldn't get an iv in yesterday. No iv means no iv fluids and they were concerned that she might become dehydrated during the night. Thankfully, she tolerated the extra goodness in her tummy and at 6:00am she was fat and happy and just ready to love on anyone that walked by. Lee, Elle and I watched Special Agent Oso on the Disney Channel and waited for the anesthesiologist to come back by to get her. They gave her a sedation medicine to make her sleepy and at 8:00am, Elle was sleeping comfortably and the doctors were ready for her in the OR. It was tough to watch the doctors take Elle from my arms and walk through the big double doors and into the OR. Lee and I watched them walk into the doors and then we headed back down to our room to clean up and pack up everything before heading back to the operating room waiting room. I had a few mini meltdowns on the walk from the OR to our room but I know she is in good hands. In our prayer this morning Lee asked for our most precious Saviour to fill the operating room with his power. I pray for peace and comfort for our baby girl. That she is protected during this time and all will go well with the surgery. We should be getting updates every few hours. I will keep you updated as I hear more from the operating room.

Life is Better in a TuTu

Happy 6 Month Birthday Elle!!!

I wish I could say that I have a ton of pictures to add to this very special post, but unfortunately I don't. Don't get me wrong, I have a ton of pictures from today but we have a different kind of memory card for our camera. Usually, the card is wonderful because it automatically uploads every picture I take to our computer so I don't have to sit around and download pictures all the time. Well - it works great at home because we have our wi-fi network set up...but now that we're here at the hospital - the silly card won't work!! I will figure out how to set the TCH network up so I can show off our adorable birthday girl! So - the only pictures I have are from my phone and they definitely don't do the birthday tutu justice!

Our day started early - we made it to the hospital at 8:30 and they immediately started all the pre-op testing. Elle was a perfect little patient in her very fabulous birthday outfit. I think it was the outfit that got her through the day! The only bad part of the day was when they had to stick her multiple times to try and draw blood for labs and to try and start an iv. Neither try was very successful. There were able to get just enough blood for the labs and the iv will have to wait until she is under anesthesia in the operating room. The last time they tried to stat the iv, Elle was screaming and sucking on her pacifier. Her big eyes were streaming tears and she was looking up at Lee as if to beg him "Daddy - PLEASE make them stop." Even her wails sounded like "getout getout getout!!" Poor little girl! We were admitted into a room this afternoon and spent the afternoon and evening visiting with friends and family. I even packed 3M hooks to hang up Shay's sign for Miss Elle.

I have an incredible peace right now about surgery tomorrow. We think they are supposed to come around 8am to get Elle. We'll find out more in the morning but as of right now - that is the plan. Our precious baby is in the Lord's loving and merciful hands!!

A Moment In Time

There are probably 10000 times a day that I wish I could freeze the moment and take a picture of our precious Elle. My heart melts when she smiles at me, or laughs, or reaches out for me and her little hands grab onto my face , or my absolute favorite is when she is super sleepy and falls asleep in my arms. I wish I could freeze those moments and go back to them over and over and over again. I don't think I relayed how thankful I am that surgery has been postponed to Thursday. Last week we were told to wait for the phone call to bring Elle into the hospital on Sunday for all the pre-op testing. Lee and I were on pins and needles all day long. Every time the phone rang, I jumped and my heart would start racing. I know I have been saying over and over again that I am ready for Elle's surgery - but truthfully - I'm scared out of my mind. I keep holding onto all those precious little moments because on the day of surgery, she's going to be on the operating room table and Lee and I are just going to be waiting for updates from the operating room. It's just so terrifying to think of being so helpless. I trust fully in the Lord's plans for our little girl but that doesn't discount the fact that I have a lump in my throat as I write this. I know the Lord has big plans for our little Elle. The last week I have really been overwhelmed with the amount of people our story has touched. I've shared Elle's story with perfect strangers and in every case the response is always the same - "well you seem to be dealing with everything so well." That's probably because I usually am beaming when I am talking about Elle - even the first 52 days in the hospital that were so tough to get through. My absolute joy when I share Elle's story can only come from my faith. Elle is our ministry. She is how we can share what trust in the Lord is like. What living a life based around our belief in Jesus Christ as the Lord and Savior can be like - even in the darkest times.

The past few days Lee and I have been loving on Elle as much as possible. That kid is constantly covered in kisses. Yesterday we received our gift from Aunt Shay! Another good reason we got bumped for surgery - now we can pack up Elle's sign for the hospital! I love that on the bottom it says "Dear God, please heal my heart. Love, Elle"

We went to physical therapy today and Elle was such a ham. She couldn't do anything today without sticking her tongue out. She is doing so much better at lifting her head - now she is reaching out with both hands to grab onto things - even when she is in the seated position. Usually, her arms are tucked up right next to her body. I think she kind of looks like a Tyrannosaurus Rex with her fat little legs and arms that she won't extend..a very cute t-rex! The last few times at therapy, she has been using her arms more. I received an amazing email from a mom that I truly admire. She said "you have been given an amazing opportunity to appreciate your child's growth and progress in a way that without CHARGE you could never have imagined." It's absolutely true! I am clapping and laughing and singing Elle praises with every little thing she does. I know how hard she is working and her progress is just so amazing!

Elle in her exersaucer on August 26, 2009 - not a happy camper (you can see her little t-rex arms!)

Elle in her exersaucer on September 22, 2009 - reaching for toys and actually enjoying herself!

We go in tomorrow for all the pre-op testing and then surgery will be on Thursday. This evening I am packing up all our stuff. I'm not a light packer - so Elle already has 3 bags packed (and she's going to be in only a diaper for a while after surgery)! I know tomorrow is going to be a long day but we have friends and family in the hospital already so it will be nice to be able to swing by their rooms and say hello. The bonds of having sick children are incredible. We might not all be going through the same thing but we all know the pain that our children are going through - that we're going through - but more importantly - we all know the pure joy and amazing love our children bring to our lives.

Just Got Bumped From Surgery

We just got a phone call from the surgical team nurse who told us that we got bumped from surgery. There is a baby in the ICU that is extremely sick and can not wait for surgery so they are taking our place tomorrow. We will go in at 8:00am on Wednesday morning and surgery will be Thursday. My heart goes out to the other family - at least Elle is in a situation where we aren't an emergency situation. God's timing is perfect! I know this and trust this with my whole heart and I pray for his continued guidance during this extremely tough time. On the bright side about being bumped - all our laundry is finished and our house is relatively clean!

Gearing Up For Surgery

It's hard to describe the feeling I have right now. We will be going to the hospital sometime tomorrow for check in before Elle's surgery. I have been blowing and going today trying to get all the laundry done, cleaning the house and doing all those things that I really hate to do but know they are necessary before leaving. As usual, the week flew by and once again, I am stunned that it is Saturday night. While the week has been filled with apprehension, fear and lots of prayer, it has been a wonderful week.

First let me say that I am a sucker for a good commercial. If the commercial is good enough, I will most likely go out and buy the product. I think the Dyson Ball commercial makes vacuuming look like fun - so for the past few weeks I have been (slightly) obsessing about the Dyson Animal Ball. I emailed Lee on Tuesday and asked him to see what consumer reports had to say about it and of course - they had glowing remarks. This only heightened my obsession. I began the furious search of price comparison to see where I could pick up one of these awesome machines. After doing some research, it turned out Bed Bath and Beyond had it for the best price if you used a 20% off coupon. I told Lee that is what I was going to spend my ones money on and some of my garage sale money. Even with the coupon - those things are expensive! Reason number 1 million and 10 why I love my husband - he brought the vacuum home and told me he would split the cost with me! He just so happened to have a BBB coupon in his truck and knew how much I wanted this silly vacuum. Let me just say that the commercial does not lie! Vacuuming is so much fun! I have vacuumed every night this week - even breaking it out last night at 1:00am to vacuum the kitchen floor while Lee and Elle slept. The dogs weren't too pleased, but I sure was! So that was the high light of my week...other than spending every minute I possibly could with our little princess!

Tuesday morning, I thought I was so clever with Elle's hearing aid croakies. Turns out, she is much smarter than I am - and not only did she figure out how to take the hearing aids out - but she also figured out how to take the hearing aid out of the protective sleeve. She was caught red handed several times with the sleeve in one hand, one of her hearing aids in the other hand - and both of them in her mouth! At physical therapy on Tuesday, Elle's wonderful therapist, Michelle, was very pleased with Elle's ability to hold her head up while in the seated position. We just have to keep working with her on head control and strengthening her muscles. Elle's weaker side is her right side. Michelle told me that babies with bad reflux generally will turn their head to the left when there is any form of pressure on their stomachs because it closes off their esophagus so they are less likely to spit up. Trying to get Elle to look to the right when she is on her stomach or being held is extremely difficult so I totally believe that her tendency to turn her head to the left is a natural reflex against reflux. We just have to keep working on strengthening her right side though. Unfortunately, there will be no tummy time for at least 6 weeks after surgery. Elle will be getting therapy when we are in the hospital and then we will be re-evaluated for outpatient therapy once we are released. I know there will be some regression due to the surgery, but I am so excited to see how Elle reacts to all these different stimulations after surgery. Lee and I both think she is going to be a completely different baby. She is already a go go getter with a bad heart - I'm sure she is going to be even more feisty and going after things when her heart is fixed!

Wednesday I dressed Elle up in her "Future Houston Cougar" outfit. Lee graduated from the University of Houston and we will be in the hospital when the Cougs take on the Texas Tech Red Raiders - so I wanted to show her UH spirit a little early!

Thursday I spent all day at work tying up loose ends and getting ready to be gone from the office for a while. When I got home Thursday night, Elle and I spent some quality time playing together before bed time. I cut all my hair off in preparation of our hospital stay. I figured short hair is a lot easier to take care of than long hair and if this stay is like our last stay - there are going to be days when I wake up and end up staying in my pajamas all day long because of all the doctors coming into our room (which means no time to wash and style my hair)!

Animal Print Friday was relatively uneventful. We went to Occupational Therapy for the last time until after surgery. Of all the Fridays, I didn't get any pictures of Elle in her animal print outfit. She was wearing a white Polo dress with horses all over it. I never get tired of playing dress up with this little girl!! Friday night I went to a Pampered Chef party at my neighbors house and it was a much needed night out. I love my neighbors and it was so good to catch up with everyone. When I got home and went to check on Elle and Lee, I found them playing on the floor in her room. The first thing that struck me was how blue she is. Babies with her form of Congenital Heart Disease are called blue babies because they don't get enough oxygen rich blood to their bodies. All the doctors told us that we would know when it is time for the major repair when she turns blue. Sure enough, last night was the first time I looked at her and it was very apparent how blue she is. I am so thankful surgery is just a day away.

Today we have been gearing up for surgery. At one point today I took Elle into her nursery, sat in the rocking chair and just rocked with her. Of course, tears were flowing but there were smiles through the tears as my sweet little angel was smiling up at me. One of our heart baby friends had his second surgery this past Thursday. His surgery went perfectly, but while his parents were waiting to see him after surgery, they witnessed another family grieving the loss of their child. No parent should ever have to grieve the loss of their innocent child - but it happens everyday. Hearing that story made me hold on to Elle a little tighter today. She is such a precious blessing and we are so incredibly lucky to have her in our lives.

Outfit # 1 of the day (she had a few today!)

Even though the Rebels weren't televised today, Elle was still in her Red and Blue to support them as they beat SE Louisiana!

We got the phone call this evening from the surgery nurse. We are to wait at home tomorrow until she calls us and lets us know there is a bed available for all the pre op testing. As of right now, surgery is still on for Monday. Pray for Elle's continued health, pray for her surgeon and his team, pray for our strength and peace and pray for our precious baby - for a wonderful surgery and recovery and please pray for all the babies and their families that are at Texas Children's.