Kaitlyn's Heart Story In Pictures

A picture speaks a thousand words! Pause the music at the bottom before pushing play. I can't believe surgery was just 2 weeks ago, she's doing amazing!!1

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We're Home!

I had good intentions of keeping everyone updated better. I started many posts but there never seemed to be enough time and when I came back to the computer what I had wrote had become old news. I will write more on Kaitlyn's courageous "heart" journey soon, but for now a quick update for all our loyal readers.

We are home, we came in last night. It all happened so fast. On Sunday we were told 5-7 more days and we left Wednesday. She is eating like a champ, Kaitlyn did all the hard work and earned us a ticket home!!! We snuck in and surprised everyone, it is great to be with the boys again. I have never missed anything or anyone quite as much as I missed them.

We have a lot to be thankful for this Thanksgiving! Happy Thanksgiving to everyone!!!!

This picture is from Monday! It was the first day that she started acting like herself. She started smiling again. Oh did I miss that smile! She is 100% tube free now. That feeding tube you see in the picture is history, she's eating great on her own!!!

I see you!

Kaitlyn had a few things going on today. Vent is still in, she developed 2 bacterial infections and has tons of chest secretions. They are suctioning her almost hourly. Doctors are anxious to get her off the vent. She has sprinted well (practice runs), but they are afraid her secretions will be unmanageable with out the vent tube to suction them out of. She had a blood transfusion today (she's anemic, and has had a few problems with her oxygen saturation), they thought the new blood would help with her oxygen levels and it has. Other then that it is a waiting game. She is waking up more, she opened her eyes today and really looked at us for the first time since surgery! She gets uncomfortable from time to time, they are weaning her off of her pain meds hoping that will help her come off the vent. Up until now she's been pretty snowed. Today was an okay day. It could have been worse. We are praying for an excellent day tomorrow.

We are getting a few visitors over the weekend, it will be a nice distraction having them here. I probably won't get to a computer until Monday, so look for an update then.

Thanks again to our amazing support team, and the many people who are praying for our brave little girl. See you Monday!

KAITLYN'S COURT, Post Op Day 2

It been a pretty eventful 24 hours for little Kaitlyn. Unfortunately we were not able to see her much yesterday. There is a very sick little boy in her area who needed a lot of stabilization and procedures done at his bed side. Eventhough we weren't allowed in a lot we knew she was in good hands.

Here's some of her most recent events:

• Her heart rate dipped into the high 60's overnight, they had to temporarily put her on a pacemaker (ugh). They continue to have her attached to the pacemaker, not turned on, in the event her heart rate dips again.
• Her lungs are wet, this is normal to a certain degree due to the excess fluid from the heart surgery, the fluid that doesn't make it out the drain weeps into her tissue and ends up in her lungs. Kaitlyn has more then they would like to see. There was talk of placing a chest tube in to drain the fluid off. They ordered an ultrasound and the fluid looked better, for now they just increased her diuretics, but will watch it close with more Xrays and ultrasounds.
• Her catheter was removed today, one more thing out!
• She started tube feeds this morning. She gets less then an ounce every few hours and they will increase it over time, she tolerated it well.
• For some reason her right leg is cooler then her arms and left leg, they are watching it, they found a pulse in her leg though, they don't seem too worried.
• They continue to sprint her (this is when they try to allow her to breath on her own with little to no help from the vent). She's doing OK. She isn't getting rid of as much carbon dioxide as she should. Again it is only 2 days after surgery so she is still within the normal range of where recovery should be.
• Kaitlyn got moved from the pediatric cardio ICU to the normal pediatric ICU this morning. They needed her bed for a baby just out of surgery. I wasn't thrilled, I loved where we were at. All the nurses specifically worked on heart babies all the time, and all the doctors were constantly around. Her new nurse is great! It was just stressful watching them move her. She was the chosen baby because she was doing better then most. I guess that's a good thing, but to us this still seems so critical.

Keep the prayers coming! Thanks again for all the support!

The ball's in Kaitlyn's Court, stay strong sweet angel!

Pediatric ICU and PCTU, 5th floor MOTTS

Grandpa Skocelas came to spend the morning with his grand baby today. He's been all over the state this week driving back and forth so he can be with the boys and Kaitlyn. He heads back to TN Saturday morning. He needs to be with my Mom now. Thank you to my Aunt Connie for flying to TN to be with my Mom so my Dad could be up here.

Our tough little fighter 2 days out of surgery

Our favorite nurse so far...Mumtaz (sp?) What an amazing lady with a beautiful heart. Kaitlyn got moved to a different part of the PICU today so we had to say goodbye! She was her nurse the last 3 days. The whole staff has been great we just really connected with Mumtaz.

24 Hours Out Of Surgery...She's An AMAZING Little Girl

According to the nurses and doctors Kaitlyn's recovery is right on track. She's had a few ups and downs but apparently this is "normal." It's difficult to see her like this. They are having a hard time keeping her still and sleeping. The nurse said that this is common in kiddos with Down syndrome?! She's on several medications. Some of them include a morphine drip to control the pain along with an anti-anxiety to help calm her and an amnesia medication to help her not remember. A line that was placed in her pulmonary artery to monitor the pressures in her heart was removed this morning. This was an extra line put in to help monitor her pressures since she had a little trouble coming off of bypass after surgery. So one tube down and several to go. Its PROGRESS so we'll take it. Her next major milestone will be to start weaning her off the ventilator. Things change in an instant around here so we will see what today brings. The nurses are great. They talk about Kaitlyn's surgery like it is minor. And even though in doesn't seem minor to us it is one of the simpler surgeries compared to many of the kiddos in the Pediatric Cardio ICU. You would not believe what some of these kids have been through, soooo sad! Please continue to pray for Kaitlyn and all the other little fighters on her floor.

Below are some pictures of Kaitlyn this morning. They are a little hard to look at but let me explain why I feel its necessary to post them on her blog. When I found out about Kaitlyn's heart defect I searched far and wide looking for info about her upcoming surgery. I had read all the medical stuff and I just wanted to find things that would help prepare me for what we were about to go through. I found this on different blogs. It helped me tremendously. So if there is a family out there who follows our story who has been placed on a similar path I hope this helps them. Kaitlyn will continue to recover and each day her pictures should look better and better! Thank you to everyone who is praying for our AMAZING little girl!

Our Amazing Little Fighter!

Please get some restful sleep my beautiful angel!

She's Out of Surgery!!! And Some Pre Op Pictures!

First the update.

Kaitlyn went into surgery this morning at 7:30. She was happy, and a little hungry. She was sleeping when they took her back. We received a couple updates throughout the surgery. The last one was from Dr. Ohye himself. She's out of surgery. He said she did well. She had a little trouble coming off bypass but now is doing great. They are waiting for her bed to get ready. We can see her in about an hour and a half. They also did an echo right in surgery to look at her valve repair (this was the most important part of surgery). They said it appears there is zero leakage which is better then the average healthy heart. We are thrilled! Praise God! I will continue to post throughout her recovery. Thank you for all the support and prayers!

Now it's time for pictures of my little hero. These are from the couple days before surgery and her pre op testing.

Happy Baby!

I wanted a picture of her chest before surgery, don't ask me why, I just did!

The morning of Pre Op before the tests began.

Her chest x-ray, as my friend Angie would say, "Really!"

Come on now!

Her sedated echo. She was sound asleep.

This morning before surgery all cute and happy in her gown.