Monday, December 31, 2012

2012... Where did the time go???

As Olivia and I sit in the car waiting for firework shopping to end, I can't help but look back at this past year. 2012 has been by far one of the most challenging years. It has tested our love, faith, and perservarance. Yet, while so much of the year has been filled with worry, so much has also been filled with wonderful memories. Olivia has learned to walk, talk, feed herself, sleep in her own bed all night, and most of all she has learned the love of her siblings. We know 2013 holds so much uncertainty, alot of which will affect our sweet girl, but we continue to hope. Hope for her health to improve... Her growth to continue....and the love to multiply. So 2013, while you are the only one who truly knows what you have in store for us, bring it on! Olivia is waiting.

Friday, December 28, 2012

Olivia's story published

After putting Olivia's story out to several magazines, her story was published this month in NOLA baby and family. To say I'm excited is an understatement. I have always known Olivia was given to me for a reason.... She has truly pushed me to do things I never would have imagined. I hope that by getting her story out to families in NOLA we can start the discussion of CHD's and raise awareness.

Here is the link:

Friday, December 14, 2012

Can you hear me???

We have been amazed at the words and sounds Olivia is making. She can say 10 words and definately knows how to get attention when she wants it. While we were in Philadelphia, at the suggestion of a cardiologist, we made an appointment to see an ent to check her ears. When she was a baby, olivia passed her hearing screen with flying colors and hasnt had  one ear infection. KNOCK  ON WOOD!! We are not doctors, so we scheduled the appointment for when we got back. Yesterday, I took Olivia to the ent and audiologist. After testing her eardrums, it looked  like she had fluid in her left one. That took the traditional test out of reach. The audiologist said we could try a test that is really meant for three year olds and see what happened. After sitting in a sound booth for 30 minutes and Olivia turning to noises on que I thought we were good. When she opened the door though, I knew something was wrong. There is a certain look all doctors get before they lay the bad news on you. It is a look like I am so sorry to tell you this and I am so glad I am not in your shoes. But back to the story... So apparantly Olivia was pretty consistent in her lack of response to certain high pitched sounds. The audiologist, not knowing about Olivias history, started to ask questions. When I explained that she lives in the 70's oxygen wise all the time, she immediately stated that Olivia needed further evaluation by a pediatric audiologist asap. The sooner we get her evaluated the better so it wont affect her speech. If she does have hearing loss then for christmas, Olivia will be getting hearing aids.
  As a mom, you dread to hear bad news about your kids, but when the news can make them a target for teasing it makes it even harder. Olivia's scars make her different already does she really need more? My sweet potato pie, I'll love you no matter what.

Friday, December 7, 2012

On our way home

We are heading home with our oxygen concentrator. Olivia is so excited to get home with high sats.

Thursday, December 6, 2012

The verdict is in

So....we saw Dr. Natarajan and much to our dislike, she is recommending Olivia be placed on oxygen to maintain her sats and buy us time. She mentioned on multiple occasions that we could do her fontan at any point but she would really like to get her out of flu/cold season. That when we start doing oxygen it ia kinda the time to move forward with surgery. This is not the news we wanted to hear, but for now, we are heading home to enjoy christmas and wait.

Two by two drs

Dr. Glatz and Dr. Natarajan came in to talk to us about the cath findings. Dr. Glatz said he was pleased with her maintaining 80-81 while at rest but the true test will be when she starts moving around. Dr. Natarajan said she is hoping to get Olivia to this summer for her fontan or as long as possible, but we must take it one week at a time. If her sats drop to the low 70's, then she will have to come up earlier. Naturally, brett and i are dreading that day.
   So after 6 hours laying flat, we were finally able to pick her up and love on her. She has been a complete beast and needed to be medicated twice. We will see what happens tonight and will follow-up with dr. Natarajan on thursday before we leave.

Post cath follow-up

Today, we head back to CHOP for a post cath follow-up appointment. This drive is filled with nerves and worry. After her cath, Olivia's saturations dd not improve as hoped. They slightly bumped up some, but far from where we were hoping. The interventional radiologist says 3 months max before her last surgery. We are hoping that her cardiologist can give us a better idea and maybe extend that time period. When her sats drop to the low 70's, it is time. Placing her on oxygen has been mentioned but i truely hope we aren't there yet.
We will also see the eye doctor today to see how she is doing since fixing her tear ducts.
Poor baby has been such a trooper and still is sweet as pie even though I feel like we are torturing her sometimes.

Tuesday, December 4, 2012

Knocked out and high on some morphine and versed

We have to keep her right leg straight and still for 6 hours. We have 4 hours left.  

Talk with the doctor

Dr. Glatz came to talk to us. He said they had to plug a collateral that had formed off of the side of her last one. He said while measuring oxygen levels and such he did find an area of concern. The vein that comes out of her ventricle which should have the highest oxygen was in the 70's. He thinks it is from an avm formation that occurs with glenn anatomy. The only way to fix it is to ddo the fontan. To hear those words made my stomach sink. She will stay overnight and they will see what her sats settle out at. They went from 79 to 83. They talked to her doctor, Dr Natarajan, and they will see where to go from here.

Eyes done

The eye doctor, Dr Katowich, is done. He came to talk to us about how it all went and was impressed with her tolerance. He did have to probe both sides and put in a stent. They may just fall out or may have to be removed in 12 weeks. We will follow-up on thursday before we head home.

Our sweet girl

We arrived early to the recovery room for olivias cath today. When we got there, she was not a happy camper. Lucky for us, versed was in her future and she became sleepy and kinda goofy. Anesthesia came to talk to us and to take her to the cath lab. The eye probing will take place first and then the heart cath. Any interventions and we spend the night. Now, we wait.

Monday, December 3, 2012


We are finally out of there. After an echo and lab work, olivia is getting in a much needed nap and then a good hearty dinner. We saw Dr. Natarajan during her echo and she was amazed at how much she has grown. Now off to rest... has been a long day with more to come

So the update....
We have finished our neuro/cardio exam with a final rating of 35% for overall development. Not bad, but room to improve.
Now, we are meeting the cardiac intake center for pre-op consents. Brett has taken olivia for an xray and I am signing paperwork.
We met the eye doctor who will be doing her eyes and the right eye is definately clogged still, while the right one is questionable.
The procedures will start early tomorrow with our arrival time at the hospital at 6am.

Back in philly

We have made the trek back to philly for a full evaluation. As we drive to chop, with Olivia babbling in the back seat, I realize how far we have come, but also how much further we have to go. We will update as we go will be an all day afair. We will see OT, PT, Speech, Neuro, anesthesia, opthamoligist and cardio. Eye surgery may be postponed as it looks like Delilah has passed on the pink eye to Livi, we shall see.