Finally

Addi is doing good. She had a suppository and her first round of meds in her IV. She has already had two full wet diapers and she has pooped...I've never been that excited about the smell of poop!!

She is much happier and talking more now that her belly isn't as tight. It looks like we might be here for a few days to make sure all of the fluid goes away and STAYS away.

She's enjoying some reading and looking at pictures on Darrell's phone.

Doctor Appointment

Well today Addi had her checkup with X-ray to make sure everything looked good. Her X-ray showed some fluid around her left lung. They said that fluid can happen after a surgical procedure. She had some fluid before we left.

They admitted her so we can get rid of the fluid. That has to be done through iv. She is also extremely constipated so they are going to do some things to help with that too.

Looking forward to progress and Addi feeling better! Thanks for the continued thoughts and prayers!!

Sunday

Well Addi has done better today. She actually walked a couple of times today without crying. She even crawled up behind me...which she isn't supposed to do. She still is a little fussy which can make for long days. I'm pretty sure this is because she isn't quite herself yet. I can only imagine how she feels, she's been through a lot.

Tomorrow she has an appointment with Dr. Anderson our pediatrician. I guess he just wants to see her to make sure everything looks good. Tuesday she has an appointment with the surgeon to get a chest X-ray to make sure everything still looks as it should and to get her stitches out.

I'm going back to work tomorrow and am glad to get back into our normal routine. My mom will be keeping Addi for the next five weeks until she is completely healed and can go back to Ashley's.

Here she is tonight eating some fish sticks and enjoying Olivia on tv (one of my favorites!). She was in bed tonight at 6:30...such a tired little girl.

Saturday

Soooo...today has gone better. She's walked a little more even though she still hates it.

Today is the last day she is on the antibiotic. I'm excited to see if this changes her attitude. She doesn't like it and I'm wondering if that has effected her eating a little.

Darrell and I took her for a walk and she loved it. It was beautiful outside today.

Progress

Today was a long, but productive day. Addi is at that age where she knows what she wants but can't communicate it. I spend about 30 minutes trying to figure out what she wants only to be unsuccessful. That's the part that made the day long.

On the other hand, she is definitely moving around more. She can sit up on her own to play. Today when we got her up to walk, she stood up from Darrell's knees on her own. She still can't get up from sitting on her own though. And...she still doesn't enjoy it. But, practice makes perfect.

My mom took her for a walk outside today and she LOVED it! Who doesn't like the fresh air.

She's still quite the princess and I think she's learned that if she cries, she gets what she wants! Oh well, she deserves it, she's been through so much!!

And...if we have to watch ONE more episode of the Mickey Mouse Club, we're going to go crazy. The things we do for our precious kids...shoot me(haha)! Here's a picture of her watching it for at least the 94th time. Isn't she cute!!

Time at Home

Today was our first day home and it was SO nice to be back! Since Addison had an incision down her chest we cannot pick her up under the arms (the normal way you lift a child) for six weeks. She cannot pull herself up onto anything either. Because of this, we had her sleep with us last night... Not fun. I was worried that she would try to pull herself up in her crib. Tonight we put her in her bed because she still isn't walking so i'm pretty sure we don't have to worry about her pulling herself up.

Today we worked with Addi on walking. She HATES it! She did really good today, but she cried the whole time. She's still a little wobbly and definitely needs support from one of us. She would walk to me, with Darrell's help, and when she made it she would lay her head on my shoulder....it was so tough for her. Anyways, we're very proud if her progress even though it is slow.

We Are Home

We were able to head home today! All of the doctor's said they thought she looked good. She is still pretty sore and she needs to start walking. She sat up quite a bit at the hospital so now we have to get her up and walking around. We met with the physical therapist and she gave us some things to do to help her.

Addi is glad to be home. She wanted a movie in, so now she is in her chair relaxing!

Darrell and I truly appreciate all of the continued thoughts and prayers. We are truly blessed to have so many people in our lives that love and care about us. Thanks to everyone who brought us food, sent cookies and flowers, and prayed. We still have a long road ahead of us, but we have faith that God has big plans for us and will be with us every step of the way!

What a Morning

Today started off busy at 6:30. Addi had an echo, chest X-ray, EKG, and a device check. She was pretty wore out. It looks like we may get to go home some time today. We're still waiting to see what the surgeon says. The cardiologist has given his okay.

Addi has been sitting a little more, but still hasn't stood up on her own. We're hoping to meet with the physical therapist before we leave to get her up more or to at least get some ideas of what to do when we get home!

I'll update again later!

All Cleaned Up

One more post for today...this afternoon one of the nurses came in and gave Addi a sponge bath (not as easy as you think). She did a great job. As I was holding her, Darrell dried her hair and she was falling asleep. She was so relaxed!! I have to say that Darrell's second day job should be a beautician. He dried her hair like Paul Mitchell. Then he got a HUGE tangled up knot in her hair all combed out. I'm sure he would really appreciate it if he knew I was writing this.

Here's a picture of her all nice and clean. They took the bandage off of her difibulator incision today!

Moving Around

After Addi got her chest tube removed, the nurses told us that we needed to slowly get Addi moving, doing things like sitting up and walking. We moved her to the little couch in our room to sit. She is still VERY sore. The problem is not the incision down her chest, but the incision they used to place the difibulator. The doctor said it is like she had a stomach surgery. As you can imagine, she gets very panicky about bending at the waist. We tried to get her to stand, but she wanted nothing to do with that.

After awhile we got her up again and took her for a ride in the wagon around the 15th floor. She didn't appreciate the move to the wagon, but once she was situated she liked it.

Chest Tube Gone

Addi just had her chest tube removed and she looks great. They have to come and take an X-ray then she can eat and drink again. Our next step is to get her sitting up and moving around!

Enjoying Floor 15

We are really enjoying being on the 15th floor. We get to be with Addi around the clock. She's not hooked up to any machines, except the one for the chest tube. We're hoping her chest tube will come out in the morning. There is also a physical therapist visit some time tomorrow to get her legs moving again.

She's starting to eat a little bit. She's enjoyed an Olivia movie and looking at a few balloons that people have brought. She's been awake A LOT!

15th Floor

We made it to the 15th floor after all! We're here and she's all settled in. No more leads...YEAH! We are in room 1528.

Things are going well. Her temperature is back to normal. They just want to make sure it doesn't come back in the evening.

Thanks for all the prayers! Please keep them coming.

Sunday Morning Update

Today Addi looks really good and is more alert. During the night her temperature got to 101.5. Everything else looks good. We may be spending another day in the CVICU so they can monitor it. When Darrell and I saw her first thing this morning it had gone down to a 100 without being on a cooling blanket. All of the cultures so far have come back negative, so the nurses still seem to think it might be inflammation from the surgery. Yesterday the surgeon said he wasn't worried about the fever.

We're about to head back to be with her...we needed to eat something first.

Too Cute

Here's a quick post about how cute I think little Miss Addi is. I packed a couple of bows for her to wear while she was here in the hospital. I've been waiting until she got comfortable before putting one on her.

I just went and fixed her hair and the nurse said I could put a bow in her hair if I wanted. Yeah!!

She's also been SO alert. I have a couple of videos on my phone of her and Cade that she LOVES to watch. I played one and she laughed! It made me smile!!

I'm also including a picture of her with her eyes open.

Update for Today

Things are going good today. Her fever has gone down and she seems to be a lot more comfortable. They have removed everything except one IV in her foot and the draining tube!

She slowly will come in and out of it. She has asked for "Momma" and I got to hold her. She's said a few words and even managed to get her fingers together to say "more" for juice.

We're hoping to move to the 15th floor tomorrow. We can't wait...that way we can be with her the entire time and not have to rotate in and out.

Another Day in CVICU

This morning Addi is doing good overall. Last night she spiked a fever so they put her on a cooling blanket to bring it down. They want to keep her in CVICU today to monitor her fever and the antibiotics they have her on. The nurse seems to think the fever is due to the inflammation from the surgery.

I think today may be a little difficult with her coming out of the anesthesia and being so uncomfortable.

Please continue to pray for strength and comfort for Addi and for our family! You are all amazing!

In Recovery

We just met with the surgeon and Addi is out of surgery. She did well! They implanted the device under the stomache muscle. He told us she would obviously be really sore. The breathing tube has already been removed. This is great because they originally told us it would be about 12 hours (at least) before they would take it out.

We get to see her in about hour! I'll post again with pictures and update after I see her.

So, the connection in here is not so great! I wrote the above a couple of hours ago. Since then I've been up to see Addi and she looks great! She's in quite a bit of pain and the nurses are keeping her medicated as much as they can. It's hard to watch and listen to her upset, but she's fine and that's all that matters. They also have her arms restrained so she can mess with anything that's attached to her...you know she just loves that!!

Here's a picture of her. Thank you so much for all of the prayers and support!! God is good!

Here We Go

Well they just took Addi back. It was emotional but so worth it! The nurses and doctors here are so amazing and they make the process easier to handle. I'll let you know when she's out if surgery. They said it could take about four hours!!

Surgery Moved to Friday

So, I have to say that Darrell definitely earned his "dad of the year" title today. I'm having to save my days for when it is time for transplant. Because of that, Darrell and I decided that I would go to appointments as needed. We thought today's appointment would be one of those. Boy were we wrong! Darrell and Addi arrived at TCH at 8:00 and didn't head home until 4:00. He ended up meeting with a lot more people than we had thought. After an echo, two rounds of blood (both of which took two times to get what they needed), and multiple meetings with doctors...everything looked good for her procedure. Darrell said she was so good and one of the nursed even gave her a baby Cinderella.

With all of that said, she will be having her surgery on Friday morning. The electrophysiologist had an appointment already scheduled for Thursday. We have to be at the hospital at 7:00. Darrell said the appointment made him feel really good about everything!

Here she is...beat, passed out on the couch in the waiting room waiting for the doctor!

Procedure on Thursday

Addi will be having a procedure done on Thursday to have a difibulator implanted. Because of our family history, the doctors feel like she should have this done to play it "safe" while we wait for her new heart. She has worn a halter monitor twice and it has not picked up any arithmias.

We won't know all of the particulars of the procedure until Wednesday. We do know that she could be in the hospital for up to a week. We'll be at Texas Children's.

We appreciate all of your prayers and ask that you keep them coming. The power of prayer is amazing. I'll be sure to update all of you after the procedure to let you know how she is doing.

Thanksgiving

***So, I just realized that I never "published" this post after I wrote it!  Here it is now written right after Thanksgiving...I'm losing my mind!!

Well, this Thanksgiving was a HUGE first for our family to get through.  This year when I sit back and think about all of the things I am thankful for, it truly amazes me how wonderful our family and friends are.

I am thankful for a loving God who loves no matter what.  A God who wraps his arms around us to give us the strength and comfort we need. 

I am thankful for a wonderful husband who continues to be my rock.  I'm so thankful that God brought us together to do life with. 

I am SO thankful for the four and a half years that God gave us with Cade.  Our little man brought us so much happiness and a lot of who I am is because of him.  I think about him everyday (all of the time) and think about how special he was and how much joy he brought me!  Caderader I love you right up to the moon and back!

I am SO thankful for our precious Addi.  Her personality is truly starting to shine and she makes me smile on a regular basis.  She enjoys life and loves to laugh and be silly.  She has taught me how to live in the moment.

I am thankful for my family and friends.  The past seven months have been the hardest of our lives and because of them each day is a little easier to get through.  All of you have been so supportive and comforting to both Darrell and myself.

I am thankful that we live in Houston and are so close to Texas Children's Hospital where some of the best pediatric cardiologists in the world work.  I am thankful that they love Addi and will do anything to fix her heart.  They make Darrell and I feel comfortable and make our visits easy.

Our family has a long road ahead of us, but we have a strong faith and we believe that God is going to take care of us!  Addi is a strong little girl and we look forward to her having a new strong heart!!

A New Year

Well, I have to say that I am SO glad 2012 is finally here.  I was definitely ready for 2011 to be over.  We had a wonderful Christmas with our families.  It was the last "first" we had to overcome and I have to say it was probably the most difficult.  God is so amazing!  Because of Him we have felt comforted and loved in this season of our life.

This year is going to be a big year for Addi and our family.  We are so glad that there is a "fix" for her condition and we pray every night for patience as we wait for a new heart for her.  We know that we have a long road ahead of us, but it is SO worth it!

She is growing up so fast and changing every day.  She is so funny and LOVES to sing and dance.  The two of us jam in the car and she starts to dance EVERY time she hears music.  I can't even explain the joy she has brought to our lives.  It's hard to believe that she is already 19 months old.  I love watching her play with her babies.  She's such a little mommy!

As the new year begins, Darrell and I can't thank our family and friends enough for the continued support and prayers.  The power of prayer is amazing!  It has made our journey from the last several months so much easier!!   As life happens, I'll keep everyone up-to-date.

Disney World

Back in January we planned a trip to Disney World during the Christmas break.  We wanted it to be a surprise for Cade, so we never told him about it.  After Cade passed away, we went back and forth whether or not we should still go.  Then with Addi being on the heart transplant list, again, we went back and forth on whether or not to go.  We ultimately decided that we should go.  Cade would have wanted us to and with Addi's procedure we don't have any idea when we will be able to travel again.  She did really well on the flight there and back.  I was really nervous about her ears bothering her.

On the plane headed to Disney!

Addi loved it, as long as she didn't have to get too close to the characters.  I am in EVERY single picture, except for the one of her crawling away from Mickey Mouse.  She would latch onto my hip and would not let me put her down.  Her favorite part was after the pictures were taken and she could say good bye!  She seemed to do a little better with the princesses.  After a few days she got warmed up to them and would actually sit with them by herself for a picture.

The fam with Mickey...love his outfit!

Addi was quite fond of Mary Poppins...we had to see her twice!

Me and Addi with Daisy...no way was she letting me let her down!

Yes, that is Addi trying to escape Mickey...so sad!

Addi and Cinderella

The fam with Goofy and Pluto...she HATED those dogs!!

We had a great time with MawMaw and PawPaw and Uncle Brandon and Aunt Brandi and Brody.  It was a bitter sweet trip, but we really enjoyed it.  On the 20th (8 months since we lost Cade), we all got Mickey Mouse balloons and sent them off to Heaven for Cade.  There was a sweet man who was a photographer for Disney who captured the moment for us.  I told him our story and he was wonderful!

Addi with her first Mickey ears!

Addi and Brody wearing their new shades down Main Street

Here we all are at the hotel.

Me, Darrell, Brandi, and Brandon

I think one of our favorite parts was getting to eat with the princesses in Cinderella's castle.  It was beautiful inside.  Dinner was wonderful and we got pictures with several of the princesses (those didn't turn out to great).  Addi was quite the princess herself!!

Here is our little princess dressed like Belle...Darrell gave her a new nickname "Addibelle"

Me and Addi with Snow White

We took so many pictures it is hard to choose which ones to put up on the blog.  Here are a few!

Me and my sweet girl!



My precious family in front of a Christmas tree in our hotel

Addi and Brody at the hotel...waiting to leave