Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement as we move through this journey as a family.
On May 17th, 2018, Brooklyn was diagnosed with Hypoplastic Right Ventricle: Tricuspid Artesia (TA, for short). She was actually diagnosed in-utero, while her mom was 20 w 1 day pregnant. We knew there may be an issue when the regular OB did a 20 week scan on Monday, May 14th. He didn't say much, other than he thought one of the ventricles was much smaller than the other. Nemours Children's Hospital called with the initial appointment - set for May 17th. First came genetic counseling where a family history was taken, as well as options explained IF they found something on the sonogram they were going to do shortly after the counseling appointment.
We were all taken to the sonogram room where we could watch on a larger screen as they scanned Brooklyn. She's a bit active most all the time, so they had a hard time getting some good measurements, but she settled down just enough for them to get what they needed. The Fetal Medicine doctor came into the room and did a scan himself and that's when he broke the news that she does, in fact, have a heart defect. He didn't go into too much detail, as it all took us a little by surprise (even though we tried to prepare ourselves for the worst), but offered words of encouragement by saying that it's something that can be somewhat "fixed" and the Cardiologist would be down to talk to us shortly.
After another very long scan by Cardiology, we were taken to a conference room where the Cardiologist explained what Brooklyn's heart looks like, in comparison to a "normal" heart. He also explained that her mom will now have to give birth at Osceola Medical Center (instead of the planned birth at Winter Park Hospital) so they are able to insert lines into Brooklyn's stomach immediately following birth. She'll then be transported to Nemours Children's Hospital, where she will be for 10 - 14 days, depending on how she does during that time. If she is able to go home after her stay at birth, she will be sent home with a heart monitor and other equipment to keep track of her weight and also keep track of her oxygen saturation to make sure that it doesn't fall too low or go too high. She will have to be monitored 24/7 until at least 3 months or until she is strong enough for surgery # 1.
He also explained that this is a life-long defect for Brooklyn. She will definitely need at least two surgeries to save her life, one at 3 months of age and another at 3 years of age. At 3 years, she will be placed on a bypass machine as they build her valve and attach it to where it needs in order for her to receive oxygen rich blood to her lungs. She will have limitations and may not be able to keep up with other kiddos, as she will more than likely tire quickly and could potentially need additional surgeries as she grows. She'll need to be monitored very closely by Cardiologists throughout her life and watched for other issues with organs that could be affected by the surgery she'll receive when she's 3 years old.
Since we all have a lot of family and friends, we thought this would be the best way to keep everyone updated on Brooklyn's progress and provide as many updates and details as we possibly can as we maneuver through this unknown journey with our baby girl. Please, please, please keep the positive vibes, prayers, and positive energy flowing our way, and especially for Brooklyn as we know this is a long and hard road for her, her mommy, daddy, and the rest of the family.
Our sweet little heart warrior is going in for The Glenn and 8am tomorrow morning. We know this is a “must” and we have confidence in her medical and surgical team. But we could use all the positive light, prayers, and thoughts you can muster up to send.
I’ll try to post an update tomorrow when the surgery is done.
Thank you in advance for the positive thoughts, prayers and love sent our way. We can’t thank you enough.
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