Sunday, February 5, 2012

The Faces of CHD Part Five: OLIVE

Written by Olive's mom, Dana.

Olive’s heart defect was discovered via ultrasound when I was 25 weeks pregnant. She was born on May 5th, 2009 at 8:40 am. Her congenital heart defect (CHD) is called tetralogy of fallot (TOF) (What's ToF? ) & pulmonary atresia (PA) .

After Olive was born, she was immediately taken to the NICU where her doctors could look over her & determine what needed to be done to save her. She was very blue. Because she has pulmonary atresia, she needed to have an open-heart surgery soon. They performed a heart catheterization & decided she would have her 1st open-heart surgery when she was just 6 days old. On May 11, 2009 they placed a central shunt, allowing unoxygenated blood to flow from her heart to her lungs. Olive seemed to recover from her OHS pretty quickly & with out any major complications!
Olive & Mama

The only thing that wasn't going well was her eating. Olive never really took a bottle. The doctors assumed it was probably due to her fast breathing. Even after her surgery, she was still breathing fast. Because of her VSD (1 of the 4 parts of TOF) blue & red blood were still mixing & getting pumped out to her body, making her 02 saturations lower than normal, causing the fast breathing, equaling difficulty mastering the "suck, swallow, breathe" pattern. We spent the next week or two trying to see if she would figure out how to take a bottle. At approximately 3 weeks old it was decided she would need a feeding tube placed (g-tube) so we would be able to take home & get her proper nutrition needed to grow. June 3rd, 2009... just 5 days after her g-tube/nissen surgery we were finally able to take Olive home!

Over the next few months, it was found that Olive was aspirating while we were trying to teach her how to take a bottle, so she was then not allowed to even try to take formula by mouth. She was put on nebulizers to help keep her lungs clear. She made a few appearances in the ER & was admitted to the hospital once for a respiratory infection. At that time it was decided it would be best for Olive to stay home from daycare, get well & come back in a few weeks for another heart cath so her next surgery could be planned. About a month later (Monday) we brought her back to the hospital for her 2nd heart catheterization. At this time they also preformed a bronchoscopy to look at her throat & lungs to see if they could find any reason for her aspiration & rapid breathing. The procedures were rough on Olive, her lungs became partially collapsed and she was not able to go the next day like planned. Since she was already in the hospital they took her down for another bronchoscopy that Friday & were able to tell us some of the possible reasoning for her eating & breathing issues. While she continued to get better in the hospital we had been talking with her cardiologist, letting him know we were anxious to get her next heart surgery done. This would be her "full repair". After talking with the surgeon, some disagreement between him & her cardiologist on how to repair her heart, the idea of going to the east coast for her 2nd OHS came up. Her surgeon was completely against the idea due to were her coronary arteries were, he assured us he would do his best to perform they type of repair we all wanted, but did have a "back up plan" if needed. On November 5th, 2009... Just 1 day shy of her 6-month birthday Olive went back to the OR for her big surgery, the "full repair".  Dr. S was able to do the transannular patch repair, this meant the repair would grow with her & there would be no need to replace a conduit as she got bigger!!! Olive currently has no pulmonary valve & will need one placed in the future, they are typically done later in life, and we were told late teens in to her twenties!
Olive has had a few hospital stays after her last heart surgery, but they have all been respiratory or ENT related. We now spend most of out time avoiding germs, playing, going to her different therapy sessions & just enjoying being at home! 

All in all, Olive is a very happy and CUTE almost-three-year-old, you would never know by looking at her that she has overcome so many serious health issues already. We are very fortunate and blessed to have her in our lives.
Olive says "I am way too cute to be in the hospital." January 2012

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