Thursday, October 31, 2013

Happy Halloween

I have to admit, I have never really been one to get really into Halloween. I remember enjoying it as a child, but what child doesn't. As an adult I have never been too excited, until the twins arrived on the scene. I put them in little outfits last year, but didn't attempt costumes. We had only been home for a little over a month and Ava was not doing well. She was in and out of the hospital and life seemed so overwhelming. This year she has been doing much better overall and I was really excited to pick out their costumes. There were so many to choose from, I wasn't sure what to pick. I knew I had to start looking as soon as they came out in August, because I couldn't risk not finding their size and I wanted to find just the right costumes. Initially I settled on Aidan being a giraffe and Ava being a flower because I couldn't find anything that coordinated in their sizes. It wasn't perfect, but it would work. They have one blue and one pink giraffe under their tree in their nursery, so the giraffe had some extra meaning behind it for me. Plus, the costume accented Aidan's Buddha belly and it also worked well with his coloring. I knew he would be absolutely adorable in it. A few weeks later I was in Gymboree looking for outfits for them to wear for the harvest party and I was elated when I discovered they had a girl giraffe costume in Ava's size. This wasn't just any giraffe costume, this was a full on diva giraffe costume with a hot pink tutu. It was meant to be! This costume had Ava written all over it and they now had the perfect matching costumes. Life is about the small victories sometimes. :)

In Des Moines they have what is called Beggar's Night, which is usually the night before Halloween. The kids trick or treat and they have to tell a joke to get their candy. I was worried all day that we wouldn't even get to attempt to go out last night because the weather was dark and stormy all morning and into the afternoon. Around 2:00 pm the clouds cleared and the sun came out. Beggar's night was back on for my little giraffes! When we put Ava's costume on, she wasn't having it and expressed dissatisfaction with the whole idea. I was a little worried she wasn't even going to wear it, but finally she gave in and our little girl was transformed into a diva giraffe. She looked absolutely adorable and the tutu was very fitting. 

The kids had fun watching all the kids out in their costumes and we enjoyed experiencing Beggar's night through their eyes. It was also a huge milestone for us. Trick or treating may not seem like a big deal, but last year at this time Ava was in and out of the hospital. She was miserable, we were stressed and I lived in fear that we wouldn't get to experience normal things like trick or treating because we were constantly in crisis mode. However, Ava has made so much progress over the last year that it was thrilling to be able to trick or treat as a family and know that they both enjoyed themselves. Brad and I enjoyed participating in a normal family activity with all the other families on the block. We finished her feeding before we left, so we could leave the pump at home. We put her oxygen tank in the wagon, covered it up with a blanket, and off we went. There have times when I felt tethered to our house because of her feeding pump, oxygen and extensive meds. If you would have told me even six months ago that we would go treat or treating tonight and Ava would enjoy it, I am not sure I would have believed you. I can honestly say the night warmed my heart and filled me up with hope that better days are ahead. Things are improving and Ava is doing so well. She is such an amazing girl and I love watching her take in this wide world around her that she has only just begun to explore. Last night proved that no matter the obstacles, they can be overcome with a combination of faith, hope, and resiliency. Ava is our miracle and we are so thankful every day that God put his trust in us to be her parents. We love our little giraffes to the moon and back and hope you enjoyed trick or treating with your little ones as much as we did. Happy Halloween!

Putting the finishing touches on Ava's costume.  Daddy bravely put the ears on her head as she gave him her famous stink eye. 

Love that smile as she gets ready to take her giraffe ears off. 

Ava in the wagon and ready to go. She is signaling to us that her giraffe costume is not complete without her pacifier. 

Ava giving Brenda the stink eye. She wants nothing to do with candy and is still unsure about trick or treat. 

A happy giraffe! She finally decided treat or treat was ok. 

One tired giraffe snuggling with daddy. So sweet!

Two giraffes and one silly daddy. 

Ava playing with her toys after we got home. She got a second wind and even though she was dressed as a giraffe, she was making gorilla noises. 

Ava sharing her ears with Mitch. At least he didn't attempt to fit into her tutu. :) Ava loves her Mitch!
Our little giraffe doing her nebulizer treatment before bed.  She is little miss independent! 

Thursday, May 9, 2013

Happy First Birthday Ava

It is hard to believe Ava and Aidan's first birthday is here. It is even harder to believe that we are actually home to celebrate. Last night all I could think about was that the year before, I couldn't sleep because I was so scared about what the future held. I was scared to have the c-section, but I was terrified to put our plan in motion. I knew Ava's dream team had thought of everything and did all they could to set Ava up for success. However, I knew that once Ava was born we had a long road ahead and she had less than a fifty percent chance of making it. I wasn't sure if I was strong enough to handle what was to come and I was so scared our precious little girl we had been fighting for all these months while I was pregnant, wouldn't make it to her first birthday. Not only did we have to make it through her first surgery, but we also had to make it through recovery, interstage and the Glenn. The obstacles seemed insurmountable and I didn't know how we were going to make it through, I just knew that I would move heaven and earth to give Ava the best shot at reaching her first birthday and many more after that. 

What I didn't know the night before she was born, was that Ava was even more of a fighter than I ever could of imagined. We should have known when she starting crying before they even pulled her out of my stomach at 8:20 am that we had one sassy, little heart warrior on our hands. Ava's incredible journey began in that moment and nothing could have prepared us for the roller coaster ride we found ourselves on from that moment forward. Ava seemed to have one set back after another and if anyone would have told me she would be in the hospital for four months after birth, I never would have believed them. Although we knew heart kiddos tended to have feeding issues, I never would have guessed Ava would have had to have a nissen, g tube and later a g/j tube. I was not prepared for her to be exclusively tube fed and unable to take anything by mouth for much of her first year of life. Even though we knew Ava was at risk for lung issues, I never would have guessed that she would be on oxygen support 24/7, in order to keep her oxygen saturations in the mid seventies to low eighties. 

What is amazing to me, is that despite all of these issues, Ava is here and she is a happy, sassy, adorable, resilient little girl. Even as young as she is, from birth on she has proven herself to be an individualist and is a force to be reckoned with as she blazes her own trail. I admire her resiliency, strength and determination. She has taught us so much about life, faith, and parenthood. She and her brother are the light of our lives and we feel so incredibly blessed to be their parents. We are also so thankful for the prayers and support we have received from our incredible family, friends, co-workers and fellow heart families.  We would not have made it through this last year without all of you by our side to lift us up and carry us through. We are also thankful for the amazing team at Mayo, her local pediatrician Dr. Waggoner, her nurse Cathie and everyone at ChildServe who has cared for Ava this year. It has truly taken a village to keep our little girl on the right path this year and we consider all of you to be part of our family. This journey has only just begun and we are so thankful to have you by Ava's side as we embark on this next chapter. We are also thankful for all of the amazing people in the heart community we have met. Thank you for reaching out to us and for all that you do to support and advocate for children impacted by HLHS and other congenital heart defects.We celebrate Ava's big day with all of you and appreciate all you have done to help her reach this milestone. 

Today was an amazing day and you will see from the pictures below, that Ava and Aidan enjoyed celebrating. We didn't have a big party, we just enjoyed being home together as a family. We opened presents, had some cake, took some pictures, gave lots of kisses and thanked God for giving us this day after a year we will never forget. We will be celebrating with the grandparents this weekend and know the kids will be thrilled to see them. Thank you for your continued support and prayers. The first chapter of Ava's life with an extraordinary heart has been written and we are excited to begin this next chapter. Ava is our little miracle and we are hopeful that this next chapter will be a smoother ride.                                                                                                                                                    

Ava woke up happy and ready to celebrate this morning. 

Big Bird, Elmo and Cookie Monster were ready to help us celebrate. 

Ava was dressed in her party clothes when I left for work. Silly girl!

Daddy with his favorite birthday kiddos!
We are so blessed to be together and home for their first birthday. 

Ava opening her presents from Nanny Kim. Thank you! She is going to be a shoe fanatic like her mom. :)

Ava and Aidan opening presents together. 

Ava checking out her new toy, Violet. 

Ava's first cake. Hopefully next year she will get to actually eat some. 

Ava and Aidan's first cakes. Yummy!
Ava wasn't too sure at first, but then she dug right in. 
She clearly wasn't afraid, look at those hands full of frosting! 

Aidan went crazy with his cake. It was everywhere!

Daddy gave him a taste of frosting and he went nuts. He figured he would just stick his whole face in the cake. Here I thought he probably wouldn't even eat any. I guess frosting is one thing he will eat. :)

Ava at the end of a big day, taking her nebulizer treatment like a champ, with a little pink frosting on her face for good measure.  :)

Saturday, April 20, 2013

Ava is Home

I am thrilled to update everyone that we were able to bring Ava home yesterday afternoon. I learned the hard way several times that if I post we are coming home in advance, something always happens and our plans get delayed. I decided mum was the word this time and was so happy we didn't experience any delays. They made significant progress during the week getting the fluid off of  Ava and we made progress with her oxygen. We were not successful in getting her to tolerate BiPAP, but she is tolerating oxygen with the nasal prongs at night. Her g-j tube was placed on Monday and although it was very sore and required pain medicine, she is doing much better and we are managing her pain with Tylenol. 

We had a few rough days earlier in the week, but by Wednesday night she started to feel much better. She was extremely sleep deprived and finally slept for 15 hours on Tuesday night. She woke up on Wednesday at 3:00 p.m. and then went to sleep for the night at 8:00 p.m. She was one tired girl, but by Thursday morning she was a new woman. The much needed sleep and oxygen really helped. She started talking and playing more than I have ever seen her. On Thursday night she played for almost three hours straight. It was so nice to have our happy girl back and to see her feeling so much better. 

Grandpa DeShaw came up on Monday afternoon to keep us company and help out. Grandpa and Ava had a great time and he deserves an award for how many laps he made around the PICU unit with Ava in the stroller. The nurses were amazed and Ava loved it. It helped to keep her mind off of the fact that she didn't feel good and it allowed me to catch up on some work or meet with doctors. Thanks so much dad for coming to our rescue!

Ava did great during the ride home last night and didn't require any oxygen. She slept most of the way and was ready to play when we got home. Aidan was thrilled to have his sister back, but not so sure he wanted to share all the attention. Aidan gave her several kisses and they even played with their barn together. They both enjoyed having their bath together again and were sleepy and ready for bed. Ava slept good last night once we were able to get the oxygen on her and calm her down. She woke up happy this morning and has been playing since then. 

We have oxygen here at the house to use when she sleeps at night and during naps. We will also use it when she is awake if her saturations drop into the low 70's high 60's. She is on increased diuretics and we will need to monitor her fluid balance very closely. We are going back to Mayo on Tuesday to meet with cardiology and then on Friday to meet with her pulmonologist. Hopefully things will continue to stay on track. 

We have a long way to go with Ava's lungs and need your continued prayers. Ava's lung pressures are at 18, which is high compared to the normal range of 8-12. This is causing the swelling in her face and makes her uncomfortable. It also affects the blood flow to her lungs. We also learned that Ava's pulmonary arteries are very small and we desperately need them to grow. Cardiology has a saying, "flow makes it grow." The only thing we can do to encourage those arterties grow is ensure she has adequate oxygen. We have no other options. Ava will not be able to have the third surgery, the Fontan, unless her lung pressures decrease and those arteries increase in size. This will be a marathon, not a sprint. It is possible that instead of having her surgery between the age of 2-3, it might be as late as age 5. What is critical is that the pressures go down and the size of the pulmonary arteries increase, so that Ava can qualify for the Fontan and have the best shot at a long and happy life. 

Brad and I knew Ava was at high risk for these types of complications because of the effect the restricted atrial septum had on her lungs in utero and all of the other complications her lungs have had since she was born. However, I think we thought she was out of the woods because she survived both surgeries. Getting the news about her lungs has been very difficult, especially because we don't have a lot of solutions. However, we do have faith that God will take care of our little girl. I keep reminding myself that faith makes things possible, not easy. We also feel comforted in knowing that Ava has such an amazing team caring for her and they will do everything they can to help her. 

So for now, we are going to enjoy our little girl and do all that we can to get those pulmonary arteries to grow. We are so happy to be home and all under one roof as a family. We will probably be making more frequent trips to Mayo for awhile, but that is ok because it allows us to stay on top of things with her. Thank you to all the amazing people at Mayo who cared for Ava during this hospital stay. We made lots of new friends at the PICU and really appreciated all the social visits from Ava's old friends while we were there. Thank you also for all the prayers and support. Words cannot express how blessed we feel to have such amazing friends and family by our side. Please continue to pray for Ava and the medical professionals caring for her. Have a wonderful weekend and I will continue to keep everyone updated as I can. 

Riding in the wagon with the white puppy Aidan and Grandpa got her.

Ava had lots of wagon and stroller rides this week. 

Such a big girl. She loved sitting in this big girl bumbo. We hope she can sit up on her own soon. 

By Wednesday night, Ava was feeling better and loved playing on the floor. She had so much fun with Grandpa!

I would love to know what she was thinking in this picture as she looked at Grandpa. Perhaps she was wondering how he was ever going to get up. :)

My happy girl is back!

Round and round we go. Grandpa took Ava on endless stroller rides around the unit and Ava loved every minute of it. 

All dressed up and ready to go home. 

Ava missed her barn while she was gone. many pictures are you going to take. I just want to play!

It warms my heart to see Ava and Aidan playing together. Despite all that has happened this last year, their bond is so strong and they love each other so much. So sweet!

Sunday, April 14, 2013

This Week In Pictures

I have taken some pictures this week and wasn't able to post them with my brief updates. When I look at these, it reminds me that there are always bright spots in every day, no matter how crazy and scary things get. We are so blessed to have Aidan and Ava and we are thankful for every second we have as a family. We know everyone has been so worried about Ava and our family this week and words cannot express how much we appreciate your support and prayers. Please know that even though I have heard several of you say you wish you could do more, please know that you are all doing so much and it really does help sustain us. I hope when you see these pictures you  will also find comfort in knowing that despite the week we have had, there has been some bright spots to get us through. I often think that God gave us twins because he knew that Ava would need her little brother to help pull her up and we would need him to keep us going during the scary moments. Faith is what makes things possible!

We headed to Mayo Tuesday early afternoon so we would be available the next morning at 6:00 am for Ava's cath. We had a lot of fun together in the hotel.
Daddy went to the vehicle to get the last of our stuff and carried Aidan back up in the clothes basket. A lady saw Aidan and said to her husband, "Honey, look at that runt." 

Ava having fun playing on the floor. 

Aidan loved playing on the couch. Maybe Uncle Paul will get an ISU fan yet. 

Slumber party at the hotel. Aidan wanted to stay in the basket. Silly boy! 
We got up early, even though Aidan and I didn't sleep much and checked in at St. Mary's at 6:00 am. Ava had her cath mid-morning and was on the PICU by early afternoon. It was a long day of stress and uncertainty, but she was a trooper and so was Aidan.

Aidan hanging out in his big boy stroller at 6:00 am. Thank you Gabby for giving Aidan your stroller. 

We fed Aidan in the cafeteria while we waited for Ava to get done with her cath. As you can see, he loved sitting in this type of high chair. 

Ava recovering from her cath in the PICU. Poor peanut!!

A kiss from your little brother makes everything better! They have such a special bond, it just warms my heart. 

Aidan enjoyed playing in Ava's crib and thankfully, it was big enough that she was ok sharing. 
Ava woke up in the PICU and based on the results of the cath, she had to be sedated for several tests today. ENT did a scope and so did the pulmonologists. Plus she had a stomach emptying test done as soon as she was done with the scope. We hated it that she had to be sedated and on the vent two days in a row, but the tests gave them some good information to use in determining next steps. We did our best to comfort Ava and entertain Aidan.

Brad stayed with Ava, so Aidan and I slept at the hotel. When we walked over in the morning, he  figured out how to make a peep hole. Silly boy!

Daddy trying to entertain Aidan while Ava was having her procedure done.
Ava trying to rest and shut everyone out after her procedure. This is her classic position at the hospital.  

Ava started to wake up in the afternoon and brother bear wanted to give her kisses. 

We knew Ava was feeling better because she started giving us the fish face. 

As long as she had her paci, she was ok with the blow by of oxygen. 

Who let that monkey back into her bed!

Kisses from Daddy. Best medicine ever!!
While Ava slept, Brad and I took a much needed break from the hospital and went to the Honker for dinner across the street from the hospital. Aidan loved the high chair and dined on some puffs.

Kisses from Daddy make everything better! 

Today was the day we started to see our old Ava back. She woke up happy and was ready to play. She cooed, smiled and enjoyed playing with her toys. She had her g-j tube replaced with a g tube and didn't even cry. Penny even painted her little toes hot pink after she was done. Ava wore a spring outfit and looked absolutely adorable. It was so nice to see her happy after such a rough couple of days. Grandma and Grandpa DeShaw came in the afternoon and the kids were both excited to see them. We were able to leave the hospital while Ava slept to eat at Chesters, which was a much needed break. Today was a good day!

Ava was feeling more like her old self and we were happy to see her fish face several times during the day. It was very fitting considering she had lots of fish on her shirt. 

This is what keeps us going, our beautiful girl with her sweet smile. Adorable!

Ava was determined to put her thumb in her mouth, despite the bandages protecting her IV. Silly girl!

Julie from OT came by and put Ava in a big girl bumbo. As you can see, she loved it! 

Aidan taking a break from all the action to eat some puffs. He is addicted to those like his dad is to Diet Pepsi!

Ava and Aidan playing in her crib. It is always so great to see them together having fun. 
Who needs toys when you can play with your blow by tube. 

Ava was all smiles after her g-j tube was replaced. 

Ava's first pedicure with hot pink polish. Adorable little toes! Thank you Penny!

Ava playing with Penny. You are the best Penny!

Our handsome little man!

Happy Girl!
Aidan drinking out of a big boy glass with Grandpa. This is their favorite game.

Grandma and Grandpa feeding Aidan his dinner. He certainly doesn't mind all the attention. :)

Ava in her pajamas getting ready for bed. Little does she know she has to wear that mask. 

Mission accomplished, Ava sleeping with her mask. What a trooper!