Happy 3rd Birthday Princess

We had a fun and exciting party for Olivia's third birthday. We invited friends and family and celebrated with tacos and princesses. Olivia went from sun up to sun down without a nap or even really resting. She has truly turned into a bright and beautiful little girl. Gone are the days of diapers and babies. It is so wonderful to see her personality and how excited she gets over the little things. She is a true ray of sunshine and people flock to her. Since her birth, I have known she was here for a reason and that she had a big job on this earth to do. Yesterday,  watching her with everyone made it crystal clear that she is going to do even greater things than I can imagine. I am blessed to be able to witness her greatness and will forever be in the debt of the wonderful people who helped get her there from CHOP and all over. She is mighty and has quite the sassy roar.

Happy Halloween 2014

Tonight, we enjoyed a great evening trick or treating with friends. Looking at Olivia, who went as Anna from Frozen, run up and down the sidewalks screaming trick or treat and a big thank you, we realize how blessed we are. Exactly three years ago, I was spending the night in a Ronald McDonald house in Philly after trick or treating with kind strangers.  The anticipation of my induction the next morning and all the questions we would be faced with loomed like a huge black cloud. It was truly the last night I took life for granted. We just passed the costume Delilah wore that night down to my niece, because even Olivia is just too big for it now. This is how we seem to spend the majority of our time these days. Olivia is growing and thriving and when asked about how she is... the answer is a simple... sassy as ever. We are so incredibly blessed to be able to enjoy the trick or treats and all of the sassy moments she throws our way. Tomorrow morning, we will celebrate her wonderful third birthday. I just hope that 10 to 15 years from now I can think back and enjoy each Halloween night as much as I have this one. It is so amazing what perspective time can provide.

Fontaniversary

Yesterday was the 1 year anniversary of Olivia's third surgery, the Fontan. Since then, we have been beyond blessed with her development and health. She is currently seeing the cardiologist every six months and has been given the all clear to grow and thrive. Looking back at pictures and reading blog posts makes it easy to realize how far she's come,  but also made us wonder how we ever did it in the first place? For all of the new moms and dads out there who are trying to figure out how to cope or how to make it through today, the best advice we can give you is enjoy the small moments. We have never enjoyed the smiles, temper tantrums, and birthday parties as we have with Livi.
    Life at this moment couldn't get any sweeter for our Olivia.

Xtw Arm

Sunshiny day

It has been a while since we have posted anything and we apologize. The saying no news is good news has been the motto that we have been following. Olivia has been given the all clear from her cardiologist for the next six months. Our jobs now, in his words, is to relax and enjoy watching her grow up. That is much easier said then done, because it has seemed like that for the last two and a half years we have been waiting for the other shoe to drop. So, Brett and I have decided we will try to take his advice and just enjoy her sassy, loveable, rebellious two year old self. Currently, we are on a family vacation making memories and exposing the whole family to new experiences. I have included some recent pictures of her swimming, putt putting, and on the beach. As you'll be able to see.. Ms. Olivia is quite the independent little personality that is determined to give us all a run for our money. Hey, we wouldn't have it any other way either.

Discharged to followup

Olivia finished all scheduled procedures and was discharged just a few minutes ago. We now head to see her cardiologist Dr. Natarajan. She is super cranky and cant really walk without crashing into things.
   We talked to the cardiologist over the mri study. He recommended we continue to watch one of her pulmonary arteries that goes under her aortic arch. It is normal to be small but hers is one the small side of small. He also said her aortic arch is on the narrow side but with all of the sutures in her veins/arteries from previous surgeries we will have to watch to see if it will grow. The rest of the info from the mri we will get in two/three days. Her echo results we will discuss at this appointment coming up. She has to see someone in ent in 4 weeks.
We had to bribe her with a balloon in order to get her to stop crying. She knows exactly what to do to get her way.

ENT update

Ear tubes are finished and bronchoscopy showed narrowing right below her vocal cords. He couldnt do anything about it now but wants to follow up in six months. He even gave us a copy of the pictures to bring home. Now Olivia is in mri.

Off she goes

They just took her back. She was so good and surprised the whole staff by giving herself her pre-meds. She didnt cry or fuss and took her dolls with hef. Update in a bit.

Rise and shine

We have arrived at CHOP and are waiting to be called back into pre-op. Olivia is in rare form this morning talking it up with everyone from taxi driver to the desk clerks. She is ready to play as she says.

Taxi-ing it up

Olivia is so thrilled she gets to ride in the Kathys, ie taxis. We have really stretched her life experiences.

Finally finished and able to eat lunch

We are finally finished for today. It was a mixed bag of reports which is what it always seems to be with Olivia. The neuro cardiac care program appointment...NCCP... went awesome. They basically told us she is doing spectacular and developmentally is around the age of 3. They even said there was no need to come back to them for anything.
     Then, we went to ENT. We met with a nurse practioner who left the room saying Olivia had a multilayer problem and that thw doctor would be in. Olivia was so tired from thw morning, she fell asleep in my arms while we waited. When Dr. Jacobs came in to see her, he went about asking questions and plugging away. He found that both tubes in her ears are out and need replacing due to infections and fluid. He also did a flexible scope up her nose while Brett and I held her down. He really didn't see much, but heard her breathing. Now she is scheduled for pe tube placement, bronchoscopy, head mri and something else that Brett and I dont know how to say or spell. Worst case is... if they find something in her airway they would balloon dilate it or remove it. This would mean she would have to stay overnight in icu. We shall see.

The day begins

Today we start with a neuro cardiac appointment where we will see every discipline known to man it feels like. Then olivia will see the ENT for a basic appointment. We will let everyone know more as we know.

Woah... it's been a while

      So today as we head to Philly for follow-up on the Neuro study, I have realized it has been a while since we posted anything. Olivia has been doing great and thriving like no one could have ever expected. She has truly amazed us and her local doctors. She is even fitting in a size bigger than she should be. Her sats are usually in the high 80's to low 90's. Not quite where we wanted them, but she has never really been on the high side when it comes to her oxygen sats. She is exerting her independence and knows how to throw a good hissy fit. Typical 2 year old, some may say. We are loving every minute of watching her grow and interact with her older brother and sister.

     Tonight, we will arrive in Philly with early developmental appointments tomorrow and cardiology visits with the team up there. On Tuesday, she will undergo anesthesia so they can do a brain MRI and a bronchoscopy. She breathes so heavy when she does anything that we are hoping this will give us some answers and maybe even a fix for her. Wednesday, we will spend the majority of the day recuperating and fly home late as long as we don't encounter any bumps. We will update as we know more. While we have some down time I may even get to upload some new pictures.