Theo came into this world in January 2021 and our lives changed forever. He was five weeks early after an emergency c section, when the doctors noticed a dip in his heart rate. He came 5 weeks early, but we couldn't have been happier!
Before he was born we were told that he could possibly have a coarctation in his aorta. After a few echocardiograms doctors were not sure whether he had a coarctation or not. We were transferred to Children's Hospital in Los Angeles after being two weeks in the NICU. At CHLA he had an MRI done we received the amazing news that he did not have a coarctation in his aorta, because if he did we would have needed open heart surgery immediately. What he does have is a VSD and an ASD.
After the MRI he spent two weeks on a ventilator because he couldn't be weened off. During those two weeks he developed pneumonia, got bronco-spasms, and that resulted in the narrowing of his airways. Those were the two toughest weeks as parents. We nearly lost him because his lungs were trying to close during his "episodes" of bronco-spasms, but the amazing doctors in CHLA kept him safe.
He finally made a recovery and was weened off his oxygen support. Theo has since had 3 balloon dilation to open his airways. After two months of being in the hospital we were finally able to bring him home. As of now we are just monitoring his VSD and ASD and open heart surgery is to be determined.
Today he is still feeding through NG tube because his cardiologist says he can only feed by bottle for ten minutes. If he goes longer than that his VSD will make his heart work double which can cause him to lose weight. To keep his weight increasing the rest is given through the NG tube. His heart is stable, according to his cardiologist, and we are hoping he can outgrow the holes in his heart. Doctor says he has a 30% possibility it can close so as of now they are giving him the chance to outgrow it before any surgery is needed. We are praying it does!
Going through all this is why Persevere K was created. We want to help families anyway that we can to cope through these trialing times. Community and having a support system is very important to be able to get through these situations. Together we can help one another!
(Our sweet boy Theo)
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