2018 Just for J 5K North Texas Recipient
Our sweet Brenley has been fighting for her life since birth. She was born on April 17th, 2017 with half of a heart and underwent her life saving operation at 2 days old on the 19th. Six weeks later she went home temporarily in between surgeries. We later developed an unexpected diagnosis of pulmonary vein stenosis. A very life threatening disease that is very aggressive. You are supposed to have four pulmonary veins that return oxygenated blood from your lungs to your heart and PVS destroys these veins. We found out on August 2nd that Brenley had lost all blood flow to her left lung and that essentially she was living off of one lung now. We underwent an emergency second open heart surgery on August 5th only to have complications from August 5th to Jan 6th. In this time Brenley only left the hospital for 13 days other than hospice and returned for many issues with fluid on her lungs.
In November of 2017 we were sent home on hospice and told there was nothing to be done for our baby and that we should take her home and enjoy what we had left. They believed her one remaining pulmonary vein was starting to narrow and if it went she would have no way to get blood from her lungs to her heart. She had a heart cath on November 5th and when she came out of it she had tremendous trouble. So bad that two nights after the cath we thought she may not make it through the night and we’re forced to put her on a pain medicine IV drip as well as a sedation IV. She was almost maxed out on support. She looked completely lifeless and we felt we were on the brink of losing her. She didn’t seem to come back from that for weeks on end and the doctors believed the vein was narrowing and that if we took her back to the cath lab it could take her life. She was very sick and we took her home on hospice the week after thanksgiving. We still had hope because you never give up hope...Once home, although not perfect, Brenley began to get better and our hearts just didn’t feel we were in the right place. We reached out to Texas Children’s in Houston and Boston Children's (two top hospitals for pediatric cardiology) and neither would take us. They said that there was nothing to offer Brenley and that based on her records they believed hospice was a reasonable option. Within days, Texas Children's, out of nowhere, changed their mind and agreed to take Brenley, if for nothing else to give her a better quality of life for whatever time she had left. You see at the time she was at home connected to a high flow oxygen machine that wouldn’t allow her to leave the house much less move around the house, she was also on a IV drip into her arm. They were able to bring her down to 3 liters oxygen which was leaps and bounds beyond the 10 liters we were sent home on hospice with and told she may never come off of. We were able to come off of the IV arm infusion and they were also able to place a stent in Brenley's one remaining pulmonary vein. Placing the stent was extremely successful and wow have we seen a miracle play out before our very eyes. We were able to come home doing well for the first time on Jan 6th and since she has continued to make improvement after improvement. First the lung congestion stopped, then she came off of oxygen for the first time, then we came off of narcotics (something we were told would never happen due to the pain of fluid on the lungs), and we have continued to come off of medicine after medicine. Brenley is still not expected to live into childhood because she is not a candidate for the third open heart surgery in the series of needed heart surgeries for kids with her diagnosis, but our hope for Brenley is to defy every single odd...and man, she’s killing it so far. Half a heart, one lung, one pulmonary vein and she’s still not giving up. We believe every single victory on this journey comes from the Lord. He knew the plans he had for Brenley...we couldn’t have fathomed nor done it without him...She has never had the easy path with this disease but she never wants to give up. We’re so thankful to have been chosen to be her parents. We’re so thankful that the Lord has given her life, and taught us as parents so much about faith, sacrifice, pain, and joy in such a small amount of time. We’re forever changed from this journey.
We would use the money for medical expenses, but also a travel oxygen concentrator. They have small machines that essentially make their own oxygen and are very small for easy travel. We have actually in the past few months come off of oxygen(such a miracle). But, with Brenley only having one lung we will still need oxygen when she travels on an airplane, or if she gets sick. She will also potentially need it as she grows older as she is not a candidate for the third surgery that she needs to fully survive this disease (We still have so much hope). We have been told as she gets older her oxygen levels will continue to drop. We want her to see this beautiful world that she has missed so much of and don’t want anything to hold her back. Our hope is that having a portable oxygen concentrator will allow us to do just that. Just three months ago we didn’t know if we would ever get to show her the outside again, or the simple things like the sunshine.. we want to spend many days showing her all there is to see!!!- 2018