Naomi, born 2008Naomi was born on July 31, 2008. I had a healthy pregnancy and uncomplicated birth. She was healthy, weighed 7lbs 9oz and fed well right from the start. On August 2nd, we were told she had a heart murmur that required further investigation. It turned out she was born with congenital heart defects that would require surgery later on. My husband and I were absolutely shocked.
Naomi was healthy and happy, though she had telltale symptoms of her condition. She would go blue when she was tired and she drank and ate little amounts at a time. At around 6 months old, Naomi started having "spells" where the muscles around her pulmonary valve would spasm and restrict the blood flow to her lungs. These spells were very scary! She was medicated for it and the goal was to get her to 9 months of age for her surgery.
Her surgery was scheduled for April 23, 2009 at Chris Barnard Memorial Hospital, but was postponed after her cardiologist saw something during the echocardiogram that he could not identify. So, instead of surgery, he took her in for a catheterization. It turned out to be an extra vein feeding into her heart next to the Superior Vena Cava. We were grateful that it had been identified. Her surgery was rescheduled for April 30th, with slight changes to the "game plan."
On April 30th she was taken to the hospital for a bilateral Glenn and a PA banding. Her surgery took longer than expected because her surgeon found another abnormality called Total Anomalous Pulmonary Venous Return. Basically this means that Naomi's pulmonary veins carrying oxygenated blood from her lungs to her heart did not feed into her heart at all, but rather attached themselves to the Superior Vena Cava, which in turn fed into her heart! So her surgeon repaired that. If they had not seen it, Naomi may have died! Thank God for answering prayer!
It was so heartbreaking to see our precious little child hooked up to a ventilator, drips and monitors. She recovered well and was discharged on My 8th. Her big sister Rachel was so happy to have her home!
But on May 13th, Naomi was admitted to ICU again with what turned out to be chylothorax. A drain was inserted in her side and conservative treatment was started to try to decrease the amount of chyle her body produced, to allow the lymphatic system to heal. When after 2 weeks the drain did not dry up, on May 29th her surgeon operated on Naomi to try to resolve the problem, but nothing changed, so on June 9th she was taken in to surgery again. This time was successful and the chyle leak stopped.
On June 17th, Naomi was transferred to a hospital closer to where we live and was treated for food intolerance. Her little body had been through so much, and she was in critical condition. She really turned a corner under the care of her wonderful doctor and dietitian there.
She finally got to come home on June 26th. I was blessed with another 3 weeks at home with my girls before returning to work.
AUGUST 2010 UPDATE:
She has recently turned two years old and is doing so well! She is truly a blessing in our lives! As far as her next operation goes (Fontan), her cardiologists indicated they will start considering it once she turns 3 years old. Each day till then is a gift from God and we'll cross that bridge when we get to it.
MAY 2013 UPDATE:
Today, Naomi is doing really well. She had a diagnostic catheterization in October last year. The results showed that she meets the criteria for the Fontan. However, since she is doing well, we have decided to wait. At her last PC check up, her oxygen level was lower than in October (84% down to 80%). She is outgrowing the PA band they put in at 9 months old. We will probably have to go for her Fontan surgery in October. She is feisty little monkey, she loves life, and loves getting involved - definately not a wallflower! God is good, and He has been faithful through it all!
OCTBOER 2013 UPDATE:
Naomi underwent her second heart surgery, the Fontan, or as was written on her charts and medical records "Total Cavopulmonary connection with an extracardiac conduit". Leading up to her surgery date, she wanted to look at the pictures and videos of her previous surgery in 2009. She had a fair idea of what was coming, and she was so brave. She looked forward to life after recovery, being able to keep up with her friends and run around without getting tired. She was a real trooper and my hero! Handing her over to Dr. Vosloo's team was the hardest part of that day. The surgery went as planned and her recovery went remarkably well. We were all carried so much by God's grace and the prayers and support of countless people. We are so grateful! She spent 17 days total in hospital, and compared to our very difficult battle in 2009, it was a walk in the park. Not only did her recovery go better, but we had wonderful nursing staff and access to Naomi's whole team who look after her, which was not the case last time. She came through it all with flying colors. She even handles regular bloodwork to check her INR levels with relative ease and a brave understanding that it is necessary. Having a 9 month old and having a 5 year old in hospital are such different experiences. My special thanks go out to my parents and family, friends and church family for all their generous support, both practical and prayer, to Dr. Vosloo and her team, Dr. Pribut, Kath Megaw, Dr. Omarjee and all my fellow heart mommy friends! You all mean so much to me and hold a very special place in my heart! Miss Dynamite is not so little anymore! She is powering ahead, gaining weight, catching up with milestones, boundless energy and full of life. She's in Grade R now and loving it! It still does my head in that I have to give a 5 year old Warfarin and Renitec, but itís a small price to pay for her overall wellbeing. Her sats are now at 97%. I watch in amazement as the shape her fingernails and toenails are starting to change. I marvel at this little miracle and I look at the people Johnny and I have become over these 5 years. There is a depth of character in us that I don't think could have been cultivated without the trials we have faced. It hasn't been fun, and I would certainly not volunteer to endure it again, but I know this one thing is true: No matter what you are facing, God's love for you is always constant. When you give Father God your brokenness, He is faithful to carry you and He is more than able to make something beautiful out of what the enemy intended to destroy you. I give Him all the praise and glory and honor.
Story by Naomi's mom, Samantha - Cape Town, South Africa
Emily, born 2003
Mary-Grace, born 2012