Surgery Summary and Recovery Day 1 - 2/28

Taylor had pulmonary band surgery on Friday, 2/27 first thing. The surgery went very well - just as the cardiac surgeon expected and the heart is performing well. The real trick to this surgery is getting Taylor's breathing under control and "relaxing" the lungs.

Friday evening I stayed with Taylor until the doctors removed her breathing tube and had her breathing on her own. She was doing well with some oxygen assistance. Jason and I heeded the doctor's advice and headed home to sleep knowing Taylor was in great care in the Pediatric Intensive Care Unit. I checked on her via phone twice and she was doing well.

Just after I called the hospital Saturday morning to inquire on how she was doing, Taylor started having some significant breathing difficulties. Jason and I were called to the hospital. I really didn't know what to expect to see when I arrived and prepared myself for the worst. Thankfully, what I saw was our little fighter very upset and struggling with the nasal canula trying to breath, with her right fist in the air. However, since she was in such distress and her breathing was not what the doctors wanted to see, they reinserted her breathing tube and sedated her.

After the team conferred a new plan was developed. They felt that they learned quite a bit about Taylor's respiratory issues from today's episode and decided to let her rest and recover more from her surgery throughout the weekend. She is currently sedated, resting comfortably and breathing with assistance. She has received steroids to help her airway relax and to alleviate any swelling. A feeding tube was inserted since she cannot bottle feed right now and they want to keep her strength and weight up.

On Monday they will try to remove the tube again and treat Taylor with a mixture of Helium and Oxygen - apparently this is easier on the lungs. Because Taylor's pulmonary artery has been so enlarged, her aorta has been pressed against her airway and is continuing to cause breathing difficulties. She also has some trachialmalasia - or a "floppy airway" which she will outgrow. We had been told by the doctors that they were not sure how quickly she would respond once the band was in place and how the airway would react. It is going to be several days of trial and error to get her breathing comfortably on her own.

We are grateful for all of the prayers, phone calls, emails, food, child care help, etc. Thank you for understanding when we can't call you back or respond immediately. We hope that you will visit the blog often for updates on Taylor. Remember that when there isn't any new news that is not a bad thing! :) We are looking for slow and steady progress over the next several days and weeks so that Taylor can come home and continue to recuperate and prepare for her next surgery this summer.

Prayer request: Strength for Taylor to master breathing without the tube and to be comfortable. Continued progress!!!

Welcome to our Blog For Taylor

Hi. Welcome to our blog for Taylor - Keeping Tabs on Taylor. We hope this will help us to keep all of our friends and family updated on Taylor's progress with her surgeries and health.

This week (it is only Wednesday) has been a whirlwind of information and activity since our initial appointment with the cardiologist on Monday afternoon, to admission to Fairfax Hospital, to a surgery date set for first thing on Friday (2/27) morning.

We greatly appreciate the outpouring of support, love, prayers and offers of assistance we have received. We are working on getting organized and will gratefully take you up on your genorousity very soon.

To explain Taylor's diagnosis as simply as possible: She has three working chambers of her heart - the right ventricle is underdeveloped and essentially non-functional. Her "great veins", the largest blood vessels are connected in the wrong place - to the one functioning ventricle. Her pulminary artery is significantly enlarged, as much of her blood is heading to the lungs. This is putting a lot of stress on her lungs and causing her some breathing problems. If you want to do some research look up congenital heart defects or disease and look up tricuspid atresia. You will likely see a multi-step surgical repair plan starting with a Pulminary Band procedure. Taylor is having that Friday.

The goal of the Pulminary Band surgery is to lessen the pressure to the lungs from the enlarged artery and allow the lungs to stop working so hard due to excess blood flow. Once the lungs are relaxed and the blood vessels back to normal, Taylor will undergo a second surgery to redirect blood flow in and out of her heart. The scheduling of this surgery will completely depend on how her lungs respond and how quickly the pressure is lessened - likely months from now.

The doctors here are amazing, take a lot of time with us and are confident in their work. We feel blessed to have their attention and to have access to such fantastic care for our baby girl.