Wednesday, September 30, 2009

CV ICU Day # 6 - Light Show Spectacular

Last night and today have been one giant blur. I haven't been in the best of moods today. Yesterday morning, Lee left the hospital and over the course of the day he developed a tickle in his throat and some other ailments. To be on the safe side, he stayed home last night which left me at the hospital with Elle. I wasn't too worried - since she came off the vent, the huge breathing machine has been taken out of her room so there was plenty of room to pull up 2 chairs and sleep in them. Her night was horrible - she was up every 2 hours and the only way to get her back to sleep was to put my hands under her back and rub her back. This took at least 30 minutes just to calm her down. I really think she has opposite reactions to pain medications. They make her go crazy - twisting and stretching and wiggling all around. Needless to say, I wasn't the most pleasant person today due to my lack of sleep! A few good things happened today. First of all, Elle pooped! This is great - except she hasn't done it again since this morning so we are praying for poop! Elle also took a few good naps today which was good. Her wonderful nurse today, Meghan, snagged this really cool light display for Elle. Since she loves lights and anything that lights up, it was a perfect addition to her room. They started feeding Elle a little bit today. They started at 15 cc every 3 hours - hopefully they will be increasing it over the course of a few days. I don't know - there is still something I can't put my finger on. Elle isn't acting herself. I just have this feeling that she is trying to tell us something is hurting her and we can't figure out what it is. I already told the doctors that she hates morphine, versed and methadone. She goes crazy when she gets them. She desperately needs to go to the bathroom. Her heart rate is occasionally dropping and so are her oxygen saturation levels. I just have this feeling in the pit of my stomach that there is an underlying cause for all her additional pain and stress. One of the doctors today put it perfectly, he said they don't want to give her pain medicines and miss a smaller detail. I agree with him but I just don't know what to tell the doctors. Elle got an echo today - and maybe that is another reason why I have this anxious feeling. We didn't get the results today which makes me nervous. I'm praying that her heart looks great and she doesn't have any problems with her heart that would be causing these other issues as well. I just pray for peace for Lee and myself. He made it back up to the hospital this evening. We got a room at the Ronald McDonald house for the night. Lee helped bring my stuff down to the room and then went back up to be with Elle. He has a feeling something isn't right too. I just pray for peace for us and wisdom for the doctors. I pray for Elle's continued well being and for peace to wash over her. I pray that she overcome all the obstacles she has in her way and return to her beautiful, smiling, laughing self. I pray for pee and poop! I pray that Elle just feels better!

Tuesday, September 29, 2009

CV ICU Day # 5 - getting the ball rollin'

Today was a big day for little Elle. This morning they pulled out her last chest tube! Whoo hoo!! At 1:00pm they also took out her breathing tube. Another whoo hoo! Her poor voice is so hoarse - she sounds just awful but at least I got to hear her cry for the first time in 6 days. She also sounds extremely "junky" so they are monitoring that closely to be sure nothing settles in her chest. She is still getting antibiotics for pneumonia and this afternoon I walked in to her room to find all the doctors and nurses dressed in face masks and gowns in her room. They had to send her cultures for flu and RSV testing too so now any medical professional that enters our room has to have a mask on and put a gown on. We pray all those tests come back negative!! Elle is also on her way to being officially off all pain medicine and sedation meds. Unfortunately, we now have a little morphine addict on our hands! They are going to slowly ween her off the morphine by giving her methodone and adavan in decreasing doses until she is completely pain med free. She was horrible this afternoon. Not acting horrible - just out of it horrible and I didn't like it one bit. At one point this afternoon, the nurse gave her a dose of versed because her blood pressure was high. I'm guessing Elle has now built up a tolerance to these meds because it had an opposite reaction for her - it didn't calm her down - it hyped her up! Vickie and I were trying everything to calm her down! I talked to the nurse and asked her if it would be possible for me to hold her to try and calm her down. The nurse said yes! But before I could hold her, the line that was in her wrist had to come out. She also graduated from being strapped down. It was a huge night for Miss Elle! No more iv in her wrist and no more tie downs! I keep telling myself over and over again - one thing at a time...one thing at a time. Every little step is an amazing step towards being released! We also need to be praying for poop. Elle was given 2 laxatives today and nothing happened...so we definitely need to get her stomach and intestines working again! They may start feeding her tomorrow but we will just have to wait and see. Thank you for all your wonderful prayers. We're not in the clear yet, but your prayers certainly do lift us up!

Monday, September 28, 2009

CV ICU Day # 4

I promise I will start getting more creative with my posting titles! Elle's day today was definitely better than yesterday which makes me keep repeating the mantra "day by day." She woke up angry a few times today but was able to be calmed down to the point where she would turn her head and watch tv and then eventually fall back asleep. While she was a lot calmer while she was awake, her blood pressure was still extremely high so she is still getting versed and morphine as needed to help bring her blood pressure down. The plan for today was to again let Elle rest. They lowered one of her medicines that helps her heart pump to hopefully help bring down her blood pressure. She stayed on the ventilator today and they exercised her lungs a few times by doing vent tests. Hopefully, they will pull out the breathing tube tomorrow so our little princess can get back to normal. She still has pacing wires in her chest and a chest tube that is draining blood/fluid from the surgery site. The drainage has greatly decreased in the last day, so hopefully that will be pulled tomorrow too. During the day today, I had to sit back and take count of the little things that make me smile throughout the day... Wonderful nurses who indulge our love of animal prints by bringing Elle a cow print heart pillow. All cardiac patients get a heart pillow after surgery - this was the only animal print one they had and our nurse grabbed it before anyone else could

Our wonderful night nurse last night that gave Elle a bath last night and then had her dressed in pink socks and a pink bow for us this morning when we walked into her room

My darling husband who this morning in an attempt to appease Elle, gave her the tubing from her blood pressure cuff to hold because if he gave her his finger, he would have had to stay all day (she has a pretty tight grip when she is holding your hand!). He gave it to her this morning at 8am and when we left her room at 11pm - she was still holding on to it!

Those big blue eyes from the most precious baby! My heart melted every time she woke up today and would look at me with those adorable eyes

Elle looking at me while I signed to her. My signing skills are limited but whenever she would wake up I would tell Elle "I love you" and tell her she is such a beautiful, smart, silly girl.

Elle's precious pouty lip that would stick out when she was mad. I love that little lip and while my heart breaks every time she tries to cry and no sound comes out, I still smile at that precious little lip.

We continue to pray for God's perfect timing for our little princess. He knows when she will be ready to come off the vent. He knows when she will be ready for food. He knows everything about her and all we have to do is follow Him to see where the path will go!

Sunday, September 27, 2009

CV ICU Day #3

Today was filled with ups and downs. I actually had to send an email to myself while I was sitting back with Elle reminding myself of all the events of the day. I suppose the most important thing to relay (and for everyone to pray specifically for) is that Elle may have developed Pneumonia. The doctor called Lee and I into her room this evening to tell us that earlier in the day they had sent a sample of some of Elle's secretions from her mouth to the lab. The test came back that there were a lot of white blood cells. He said this in an indication of pneumonia. He also said that they found a certain kind of bacteria in the sample that is also attributed to pneumonia. However, her lung x rays looked good and he couldn't see any pneumonia in her lungs from them. To be on the safe side, he is starting Elle on a cycle of antibiotics to knock out whatever is in her system. This morning during rounds the only thing they changed was stopping the continuous morphine drip. Instead, they are giving it to her as needed. While they stopped the morphine drip, they still wanted to keep her sedated because they didn't end up pulling out the breathing tube. So, they continued a Presadex drip which keeps her sedated but does not effect her lung function. They didn't want to mess with her lung function because during the day they were also doing vent tests where they would periodically allow Elle to breathe on her own to exercise her lungs. It was a hard day emotionally. I was hoping by this point she would be without the breathing tube and we would be on our way to settling into our own room on the 15th floor. Elle has her own agenda and I just need to sit and be patient and know that the Lord has her plans already laid out for her. The nurse was so nice this afternoon. The doctor called to talk to us right at shift change so our day nurse had to stay a little late to hear him talk about the pneumonia. She could see I was visibly upset and tried to comfort me. I just want our little girl to be well and it pains me so much to see her open those little eyes and look up at us and just cry a silent cry. It hurts so badly to see her stare at the nurses and doctors as they poke her and readjusted stuff. Her eyes get so big - like she is so frightened of them. I wish I could just take all her pain away. I have to remind myself that tomorrow is another day! I pray for great things for Elle! I pray she has a peaceful night with her wonderful night nurse. Mostly, I pray that the Lord fill her room with his grace and peace and strength. That every person that steps into Elle's room is overcome by a sense of well being. That the doctors and nurses are filled with the knowledge they need to give Elle every thing that she needs. That Lee and I are filled with strength and peace while we sit with our baby girl. I pray that Elle recovers fully and with each passing day gets stronger and stronger. I pray for God's perfect timing for her to come off of the vent. I pray that I put all my trust in the Lord's timing and know that it is just my nerves that are making me so upset. I know tomorrow is a new day! "This is the day that the Lord hath made, we will rejoice and be glad in it!" Psalm118:24

Saturday, September 26, 2009

CV ICU Day 2

Today hasn't been very eventful which I am thankful for. This morning during rounds, the only thing the doctors changed was that they decided to slowly decrease the calcium Elle was getting. Calcium helps the heart pump, but Elle's levels were a little too high - so they slowly decreased the calcium level and increased another medicine to off set the calcium. She's getting TPN which is suped up Gatorade - its all the nutrients is needs since she isn't getting any food. Her blood pressure has been good all day which is so reassuring after the ups and downs of yesterday. They gave her a dose of lasiks around 1:00pm to help her go to the bathroom more and it did the trick. She will be getting another dose around midnight to help her loose some of the fluid her body has accumulated. Her coloring is kind of off - she's really pale. I asked this morning if they were going to have to give her blood and they may later on - but they want to see if Elle can recover on her own. They decided this morning to keep her sedated all day to give her another full day to recover as much as possible before pushing her at all. She woke up a few times during the day but would just roll her head around and then go right back to sleep. I felt a little more comfortable today to actually put a bow in Elle's hair. It's a cute little zebra print thing that isn't too obtrusive since her head has wires running all around it! She's still on the ventilator and still has the chest tubes draining from her chest. Today they did a volume support test with the ventilator where they basically make it where the machine doesn't do any work and Elle has to actually use her lungs. The test was for 2 hours and Elle did great. Her lungs seemed to be working great. They will do another volume support trial tonight and then maybe (just maybe) they will take the ventilator out tomorrow. I'm in no rush for them to take it out if Elle isn't ready for it...although I can not wait to hear my baby cry! NEVER, NEVER get frustrated with the sound of your child crying because you don't know how much you miss it when they can't. I don't want to post too many pictures because I don't want them to scare anyone! It's pretty terrifying to see your child so helpless and know there is absolutely nothing you can do to make it better! Our prayers are continuous! We trust fully in the Lord and his perfect timing and plans for our little Elle Belle!

CV ICU on September 24, 2009 - hours after surgery - all the tubes and wires are covered up because her body temp was low..but they had to keep the incision site un covered

Lee and Elle in CV ICU on September 26, 2009

Elle's leopard print blanket and zebra print bow on September 26, 2009

Friday, September 25, 2009

blackberry update

I'm writing this from my blackberry so please pardon anything that is gramatically incorrect! Elle's first full day post op had both Lee and myself worried. Her blood pressure was extremely low all day long. They never had to give her more blood, but they did give her blood agents. This helped temporarily raise her b.p. We were also praying for pee all day long. One of the side effects of being put on the by pass machine is that it messes up kidney function. Some people have to go on dialysis because of it. That thought is never too far from our minds but thankfully around 7:30 this evening elle went to the bathroom. Lee and I were giddy when we saw it coming down the tube! By late this evening, elle's bp had risen and she was peeing - a complete 180 from this morning. She woke up a few times during the day and I will never be able to get the look she had on her face out of my mind. She has 2 tubes down her throat so she can't cry and her arms are tied to the bed so she can't get to the ivs or tubes coming out of her. She would roll her head over to look at lee and myself with a look of pure terror on her sweet little face. Big tears would start forming in her eyes and she would look up at us as if to say "please take the pain away.". I couldn't stand to see her in so much pain- I broke down whenever she would wake up and look at us. I'm crying now just thinking about it. This evening the doctors all agreed to keep her sedated through the evening to keep her blood pressure up and her kidneys functioning. The plan tomorrow is to take it slow and see what elle will allow them to do. They might remove the breathing tube but that all depends on her. Please pray for our little girl as she continues to recover from surgery.

Thursday, September 24, 2009

When It's All Said and Done

Lee and I got to go in and see our precious princess around 6:30pm. She is covered in tubes and wires and is heavily sedated. The anesthesiologist came in and said that she won't be waking up anytime soon - probably not until tomorrow sometime. Overall, she looks good - her coloring is good and the way they have the breathing tube positioned and a tube going down her throat and into her stomach positioned - it looks like she is smiling. The second tube going into her stomach is to release any gases that might be in her stomach. They want it as "deflated" as possible. After seeing Elle, Lee and I left and my parents went back to see her. After they got to see her we all went and enjoyed a fabulous dinner and then Lee and I went back to Elle's room to be with her for a little bit longer. Tonight - she is so out of it that the doctors and the nurses both suggest going home (or to the ro ho which is where we are) and getting a good nights rest. Once Elle wakes up and starts to realize how much pain she is in, we are going to be on call 24/7 so we are getting sleep tonight while we can! Our nurse tonight is fabulous! He is the nurse that admitted Elle after her shunt surgery and is one of the top notch nurses for cardiac. When Lee and I rounded the corner and saw him, both us breathed a huge sigh of relief. I can't say enough good things about him so I know she is in good hands tonight. We will most likely leave the Ronald McDonald house relatively early tomorrow and spend the day with our baby. It's hard to hear all the monitors when we have been without them for so long. I'm not too sure what the next few days hold for us but I know God certainly does know what the future may hold. We're praying for a full recovery and an easy recovery!

Surgical Update # 4

We just met with Dr. M. He came in with a big smile on his face which is always reassuring when he just cut open our child's heart! Everything went well - he was very surprised (shocked actually) when he opened up Elle's heart to repair her pulmonary valve. According to Dr. M, this was one of the only, if not the only, Tetralogy of Fallot cases that he has seen where the pulmonary valve was so closed but there was still a little blood flowing through. Her valve was boarding on atresia which is where it is completely closed. It is pretty amazing that she lasted as long as she did with the shunt (that was put in on April 13) considering how closed her valve was. Praise the LORD!! When he went in, he kept cutting into her pulmonary valve and it never opened up. It wasn't until he went in from the top that he was able to open it up. He opened up the valve and was able to open it up to a pretty good size. Her ventricle septal defect (VSD) was huge according to Dr. M. With the repairs, Dr. M said that it could be years if not decades before she has to come back in for another complete repair. Let's pray for decades!!! We haven't seen her yet - but hopefully we will be able to go back and see her in a while. Thank you for all your prayers! The next 12 hours are critical in Elle's road to recovery. Praise the LORD for all his wondrous glories!!!

Games (Waiting) People Play

What do I do when every Friday for the past few months Elle has worn animal prints in honor of Animal Print Friday? Why color diapers for her to wear while she is in the CVICU of course! Maybe I should patent my idea...how cool would zebra print diapers be? I know I would save all my coupons for cool looking diapers. To pass the time - we had a little coloring contest. I had some of Elle's diapers with me so we (Vickie, my mom and myself) decided to have a coloring contest to see who could create the best animal print diapers for Elle to wear tomorrow. I sent a picture of all our beautiful masterpieces to our favorite artist, Shannon Jex. Who better to decide the winner than an actual artist?!

Here is Shannon's response (which brought much needed laughter to the waiting room): The decision was harder than anticipated but here is what the esteemed judge decided. After a long deliberation, 3 pots of coffee and a nerd rope... Diaper 1 wins Best All Around! Not only was there a strong graphical usage but there was also a stylists text element present that really tied it all together. I also have a soft spot in my heart for lady bugs..and Elle Belle is such a lady already with her massive head wear and footwear collection. Diaper 2 wins Most Creative! Way to think outside the box plus that is cuter than what comes printed on the diaper...I will make a call into Huggies. Diaper 3 wins Most Glamorous! I have a feeling this is Lisha's because of the style element and good use of space. She has always been a whiz with those sharpies (since she had 58 of them in college to practice with) plus thanks to a certain pair of zebra pants we had freshman year of college - the print is very accurate! Diaper 4 wins Best Theme! Rattle rattle here come Elle! Since the surgery is in Texas, I think the cow print is very fitting. Also, contrary to a onesie I saw her wearing the other day, she will not be attending U of H (or Rice) - she will be a Phi MOOOO at Ole Miss! Good work contestants! And luckily Elle goes through a lot of diapers so all of the winning diapers will be awarded a moment in time on the coveted GOLDEN HINEY! Love all you, Nationally Known Diaper Drawing Judge Shannon Jex Note: We had a late entrant to the competition - Big Daddy Mark entered his Animal Print Friday design just now...he drew a panda on his diaper for Elle! Even while sedated, she is STILL going to be stylish

Surgical Update # 3

I must say that every time they call our name for an update, my heart feels like it is going to come out of my chest. All the doors have codes so the nurse has to punch in a code to open the door to walk into the consultation room. My heart starts to beat even faster when I hear the numbers being punched on the key pad right outside the door. I think Lee and I both go white as we sit in a consultation room, just the two of us, and wait to hear those little buttons being pushed. The waiting is horrible. The surgical nurse came in and said that they are finished! Dr. M closed the 2 holes and repaired the valve. They did an echo and it looked good. They are now checking for any abnormal bleeding. She is off of the by-pass machine and didn't have to be shocked for her heart to start beating again. Dr. M will be putting in some drainage tubes into her chest and will then begin the process of closing her up. We should be seeing him in a few hours when he can leave the OR. Thank you for all your prayers! We are so truly blessed by this amazing support system.

Picture Situation - RESOLVED

It took three different computers - but we finally were able to get the pictures from yesterday downloaded to a computer. Here is a sample of our little lady's big day yesterday..
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Birthday pictures at 5:00am
Being a ham at the hospital

Quality time with mom and dad

Hanging out with Uncle Benny

Discovering who David Yurman is and why he is so important

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.

Wednesday, September 23, 2009

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!!

Tuesday, September 22, 2009

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.

Sunday, September 20, 2009

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!

Saturday, September 19, 2009

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!

video

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.

Tuesday, September 15, 2009

A Quick Stand on the Soap Box

Two nights ago was MTV's Video Music Awards. I love music and I love to see all the performers - so I always like to watch the VMAs. I was absolutely appalled by the guy who hosted the show - every other word was a cuss word they had to beep out. I was appalled when Jack Black came out, asked everyone to hold hands and then proceeded to pray to the devil. I was appalled when one of the commercials for the new season of The Hills came on with "The B**ch is back (no * on the commercial) written in huge glittering letters. If this is what is socially acceptable in today's society, it scares me to think was Elle's future is going to be like. What is now socially acceptable is absolutely too liberal (not in the political sense). It's ok to have cuss words written in glittering letters on a commercial, it's ok to have a host that is so vulgar and openly distasteful that he offends the people that are watching (we're not watching for him - we're watching for the performers!), it's ok that in a moment of comedic relief, Jack Black prayed to the devil. Normally, I wouldn't say anything about this - but I have a daughter now. I have a little one that I do not want growing up in this kind of society. I don't want her to grow up where it's ok to pray to the devil on a television show watched by millions of people, but they have taken prayer out of practically everything else. I don't want her to read a cuss word on a commercial and ask what it is. For those of you that know me, I don't exactly have the cleanest mouth ever but Elle has a way of changing people - she has definitely changed me!

Baby Croakies

What do you do when you have a baby that pulls out her hearing aids no less than 10 times a day to suck on them?

Hearing Aid Croakies!!

Unfortunately, it didn't work because she figured out how to pull the hearing aids out of the sleeves - so this afternoon I found the clip still attached to her shirt with both hearing aids in her mouth...you win some....you lose some