Just beyond beyond about today. Lila’s Tribe came out in full force, and I will be swimming in this sea of Love for many days. Thank you to everyone for making Lila and I feel so special. Minimal tears, lots of belly laughs, and SO MUCH LOVE = the perfect baby shower. Special shout out to this gem of a human. She came all the way from Las Vegas: planned and threw the ultimate baby shower. I’m lucky enough to call her Bestie. I love you Tay. 💖 @taytertalks#talyyourmoments#adventureturtles#LilaIvyLuna#lilastrong#lilasstory
I am so tired. I haven’t slept in a bed in weeks. I haven’t eaten a full days worth of food in weeks. I am looking so much older from the stress, sometimes I don’t even know myself in the mirror. A nurse asked me a couple weeks ago if I thought I had ptsd. This has been hard.
This is a miracle. We were told to prepare ourselves for this never happening again. To prepare ourselves to not bring our daughter home. To sit down in a cold room and have “the talk” with a doctor.
Yet, here we are. Snuggling our sweet newborn nugget. Rubbing her head and nursing her to sleep.
Friends, Gods grace and strength have carried us. We will proclaim forever His goodness! He is the giver of moments like this. He is strength in our weakness and the Great Physician and we are thankful. -Monroe Jane Berry
March 17, 2018
Sweet and cuddly
Let's finish the week with another inspiring #MyCHDWarriorStory : "Hi, my name is D’Naye. I’m 30 years old and I was diagnosed with Tetralogy of Fallot and Pulmonary Atresia at 3 months old. At that time, I had my first of 5 open heart surgeries. I, like many of you, was not expected to live very long. So thankful that God had other plans for my life! I am now a momma to my 2 year old daughter through adoption! 💕 I am facing another upcoming surgery in the future and I know that whatever comes will be good and I’m so thankful for this life I was given! ♥️" - @dnayeconklin
Feeling lucky to capture this moment in time. A time when Lila is safe and protected and loved beyond measure. Once my little Moon Child comes earth side things are out of my control. But for now, she’s safe and she’s mine. Thank you so much @gem.state.girl for the lovely photo shoot. For obvious reasons I haven’t been feeling my best lately and Kenna is such a wonderful photographer and friend... made me feel beautiful and ethereal for a few hours. So much love. #LilaIvyLuna#lilasstory#lilastrong
Xanru’s #heartdefect was picked up on a 4D scan 32 weeks into Melinda’s #pregnancy ❤️ The Gibhard’s had struggled to fall pregnant for eight years, and after losing Xanru’s twin at 12 weeks of #gestation , the discovery of their baby boy’s #CHD broke the expectant mom’s heart. After several scans and consultations with their #cardiologist at #NetcareSunninghillHospital , the Gibhard’s were told that Xanru would have to undergo #surgery right after his #birth 💔
Baby Xanru was born with #PulmonaryAtresia with a #ventricularseptaldefect and a hypoplastic left pulmonary artery, and underwent his first successful op - a shunt - performed by Dr Erich Schürmann, at 7 days old - “I didn’t get to hold him for six days,” says his mom.
Xanru was sent home with his family and was on oxygen for 2 months. His second op, at eight months, saw the insertion of a #homograftvalve and his left pulmonary artery was opened to 5mm, and the hole in the heart was closed. His second stint of #ICU recovery lasted 19 days. “He did so well… and now he is doing amazing,” says Melinda.
Baby Gibhard is due for a check-up with his cardiologist in September of this year and may have to undergo a third #operation at between his fifth and sixth birthday, as the homograft deteriorates over time and will need to be replaced👨⚕️👩⚕️
“We are dreading that time, but keeping faith… he is happy and he is strong! He is busy and has tantrums!! We love this boy so much. I thank God everyday.” ❤️ #MabonengHeartandLungs#chdawareness
Another ACHD survivor in this #MyCHDWarriorStory : "Hi! My name is Steven Burns. I’m 27 years old , and I’m surviving with a CHD. I was born with a hypoplastic right ventricle and Pulmonary Atresia with an intact ventricular septum. I’ve gone through 7 open heart surgeries and I’m still here fighting for CHD awareness!" - @that_heart_guy