Olyvia Jade's Battle With Illness

       I wanted to introduce my little fighter Olyvia Jade.  Lets start from the beginning, 3  years ago! Olyvia has not had an easy life. She was born on feb. 20th, 2014. She was born at University of Colorado hospital at 28 weeks gestation and only weighed 1lb 7oz! She fought very hard and we were released after 117 days in the NICU. She has down syndrome and 50% of kids with DS have a heart defect. Her heart defect was called AVSD (a hole in her heart) she had her first open heart surgery in Oct. 2014.  She rocked it! She was then diagnosis with Pulmonary vein stenosis in all 4 of her main veins (narrowing veins that run from the lungs to her heart). This news was very devastating, it is pretty much a death sentence and can never be cured. Children's hospital of Colorado told us to make her comfortable and that there was nothing more they can do for her. So of course I wasn't going to give up on her that easy, I did a lot of research and found that Boston Children's had a specialist that could hopefully help Olyvia.  We flew out to Boston in July 2015 (I was also 24 weeks pregnant with her Brother Lyncoln). They performed her second open heart surgery  (way more intense and critical than her first). It was a very long and emotional 8 hour surgery! she went back to the ICU with her chest wide open just in case they had to get in there quickly. How many parents can say they saw there child's heart beating from the inside? We stayed a long 21 days at that hospital.  She left there on a medication called Gleevec (a chemo drug) this medication is supposed to stop the growth of the disease in her veins.  She was on that nasty medicine for a year! But you know what... her veins are now WIDE open! She is truly a miracle!  (Well three of them, during her second OHS they actually had to sow her top right vein to one of the other veins because it was fully closed.)

         We thought all of her medical problems were starting to get resolved. Then back in April 2016 Olyvia under went a sedated echo to check her veins (gets them every 6 weeks) her heart rate jumped to 305bpm! They immediately woke her up and called and said we need to get to the ICU asap. They said they were going to cardiovert her (use the paddles and try and shock her back to normal sinus rhythm). They put her back under and started to shock her, her heart got really tired and stop beating! They then began to do chest compressions to bring her back. She was gone for over 2 minutes, but they were able to bring her back. She was then diagnosed with atrial flutter. From March 21st to October 7th 2016 she has been flown flight for life to Children's FOUR times because of her flutter and multiple infections! The first time her heart rate was back up to 300 and the doctors decided to put in a loop recorder (a small device that reads when her heart stops and/or when her heart beats way to fast and sends the information back to Children's). She was released fairly quickly and we were sent back home. She then started to get a fever and her chest looked like it had a golf ball in it. We were then flown back over the mountain and they took out the loop recorder and her chest was covered in a staph infection! At that time they were talking about a pacemaker but wanted to wait until she got bigger. She only weighed about 18lbs at 2 years old. We were doing pretty good at home, then we check her heart rate on our home pulse ox (which we check daily) and it showed her heart was beating 167bpm. Some of her chambers were double that! We then got flight for lifed the third time on August 7th. They decided to put a pacemaker in this time to help control her rate. They had to open her chest for the third time. The doctors put the pacemaker in her stomach. We were released in 2 days to the Ronald McDonald house to wait for her follow up appointment.  Well on the second day of her being released she started to have a high fever again and her stomach was bulging again. We took her to the ER and they determined she had a hernia under where her pacemaker was placed. So they did emergency surgery that night. They didn't take out her pacemaker at that time. The doctors fought with us and wanted to try and save the pacemaker. Well she was still hospitalized with "big boy" antibiotics.  She wasn't getting any better, so they decided to take out the infected pacemaker. (Thank God they did because her heart was very close to getting infected). Her chest then had to be opened for the fourth time! She had three major surgeries all within one week! She was hospitalized for 3 weeks not able to leave her room at all because she was on quarantine.  I talked them in to releasing us to the Ronald McDonald house with the wound vac (she was the youngest under 17 to be released with a wound vac). The Fourth time was for another infection in her chest where they cut her open. The tissue wasn't healing on the inside even though it was completely closed for over a month. We stayed for two more weeks at that time. She was cardioverted again on Oct. 20th (my birthday). She handled it very well and got control of her heart rate.
       Back in December we had a follow up with all of her doctors.  The echo found a new heart problem.  This makes 4 congenital heart defects.  She has a leaky AV valve and her pulmonary hypertension is getting worse again. Her pressures are up to 50. So they started her on another med and they will be watching her valve closely.  She may need another open heart surgery again.
Olyvia just had another pacemaker placed (3/7/17) she also She has severe sleep apnea, she will have surgery on (3/13/17) to take her tonsils and adenoids taken out and will be staying at At Children's hospital  In Denver for 3 weeks.
Thank you all so much for taking your time to read this and for your generosity!

With our love,

Kimber, Micah, and Olyvia