Список из самых популярных хештегов по теме #CDHAWARENESS

Working on my piece for a exciting project coming up with @bowensheart @sarahhammitt @matthammitt Bowen is a heart warrior like me with the same heart defect. So proud of him as he just was released from the hospital yesterday after open heart surgery, continuing to pray as he recovers at home with his family. #wholeheart #hlhs #heartwarrior #hero #fighter #congenitalheartdefect #cdhawareness #ballet #bunhead #Godisgreat #bowensheart #godisfaithful #balletdancer #naomibabcock

I sadly announce Cora gained her angel wings on June 27, 2019, after battling from Hypoplastic Left Heart Syndrome (HLHS) and a Congenital Diaphragmatic Hernia (CDH) since at birth. HLHS is when the baby's heart forms abnormally. The left ventricle is under developed, or does not exist at all. The left ventricle's function is to pump oxygenated blood cells to the lungs and body. Without surgery, a baby can not survive. CDH is when there is a hole in the diaphragm and the digestive organs can migrate up into the chest. this causes major growth restriction to the lungs and heart. Babies with CDH need surgery to patch the hole. Survival rate for a baby with CDH is 50-80% depending on how severe the CDH is. Sincere condolences to Cora’s family at this time. #rip #restinpeace #gonetoosoon #flyhigh #gonebutneverforgotten #hlhs #hlhswarrior #hlhsawareness #cdhawareness #cdhwarrior

May have found the motivation Maeve needed to try oral feeds . First time out in public was a success! Gotta love @bberrymarket #mightymaeve #differentnotless #zipperclub #ddx3x #ddx3xsyndrome #raredisease #cdhawareness #specialneeds #lifeaftersurgery #miraclebaby

“As long as baby is healthy!” But what if baby isn’t healthy? What if your entire pregnancy is waiting for those dreaded words “there’s no longer a heart beat”? What if you find more and more problems every sonogram? What if you deliver your baby with a room full of doctors and surgeons just for baby? What if you don’t get to hear baby cry? What if instead, you lay on an operating table holding your breath hoping they get a tube down your baby’s throat so he can take his first “breath”? What if the first time you see your baby’s face is through Facetime at a different hospital? What if it’s surgeries at just days old with “we don’t know what the chances of survival are” with it, and no survival without? What if it’s months long NICU stays and going home on oxygen and monitors and feeding through a tube? What if it’s not hitting milestones? And going to weekly appointments holding your breath for whatever they’ll find wrong next? What if it’s chaotic trips to the ER with emergency intubations and surgeries and even more hospital ICU stays? And what if it takes car loads of equipment and hours to go out anywhere? And what if you can’t carry your baby around your home without pulling poles and machines and untangling cords as you move? What if it’s celebrating weeks and months as if it’s big birthday years? And what if baby doesn’t make it to one and you have to say goodbye instead of planning that big birthday party? And what if that “sick” baby turns out to be the biggest blessing and brings you the most joy you didn’t even know was possible? And what if that baby makes you stronger and bolder and more gentle and patient and caring? And what if that baby changes thousand’s that didn’t even know him? And what if that baby’s story saves lives? What if that baby proves miracles can happen and even if they don’t God is still good? We’re grateful for our sweet, beautiful, “unhealthy” baby boy, who changed us and left a mark on this world that we likely never will. He was perfect in his imperfect ness. Happy CDH awareness day! . . Continued in comments

Today you’d be ten months old my sweet Ellis. I sure wish you were at the beach with your whole family, enjoying the sand and breeze and sunshine. But I know your view is better than anything I could even imagine. I love you and miss you, more and more everyday. One day closer to wrapping you in my arms again.

Today is Pregnancy and Infant Loss Awareness Day. Join tonight’s wave of light, and light a candle at 7pm in remembrance of babies gone too soon. The gut wrenching pain of loosing my little boy will always be with me, we didn’t get enough time with him and it hurts every single f*cking day! You’ll always be in my heart my son❤️ my baby, now my angel❤️ you were just too perfect for this earth❤️ To all the other mummies and daddies out there that are doing life without their babies, I feel you #waveoflight #waveoflight2018 #cdh #cdhawareness

We share in your happiness! #Repost @bmedal So happy to go home!!!! We got orders for prn O2. Thank you @vumcchildren for all you did for our Evie. We are so grateful to have been blessed with such a wonderful team to take care of her. #goinghome#CDHWarrior #cdh #cdhawareness#LCDH #oxygen#pulmonaryhypertension #ecmobaby

No one prepares you for death in the way you truly need. It’s true... death is a part of life, but are we really ready? Some days it feels like this little life was ripped out of my hands. Other days I know she left on her own accord. Her heart rate dropped from 130 to 30 bpm in a matter of minutes before she passed. She told us she was ready to go home to see Jesus again. Her time was short, but her purpose was fulfilled... and I will not know, until that certain perfect moment, what that purpose is. Elaina would have been one month old today... probably still in the NICU, but she would be here. My emotions are up and down, day to day. I thought death and dying would hurt someday when I lost a grandparent, but this is the worst kind of pain. I carried this darling little angel one day shy of 38 weeks. She came into our lives as a surprise and left us to wonder where we go next. To say that I miss her is an understatement. Songs hit my heartstrings harder than ever. However, I believe even harder in my Heavenly Father and Savior, Jesus Christ. The Holy Spirit is REAL. God has a plan and often we don’t understand what that means for our lives. People enter and leave in fleeting moments. Most times we don’t give it a second thought, but with Elaina, I think about her leaving every day. She is now our guardian angel. She will watch over this family every day. Her name means “bright, shining light” and she certainly is my sunshine. She will always be my daughter. Her beautiful face will always be in my heart. Happy one month my sweet angel. #onemonthold #angelbaby #cdhawareness #cdh #congenitaldiaphragmatichernia #omphalocele #babyelainarenee #neonatalloss #infantloss

Mirror mirror on the wall who’s the rarest of them all? Little Miss Maeve is! Today is rare disease day! Please share and help raise awareness! At 6 weeks old, Maeve was diagnosed with an extremely rare genetic syndrome called DDX3X. This syndrome was recently discovered in 2014, with under 400 cases reported worldwide. DDX3X is gene mutation that primarily impacts girls due to its location on the X-chromosome. As in most cases, Maeve did not inherit this gene mutation from us. It was simply something that happened randomly at conception. Due to her medical complexity, Maeve is currently the youngest person ever diagnosed with DDX3X. I’m not going to sugar coat it, hearing this diagnosis nearly broke us. After 6 weeks of bad news coming in daily, this felt like the final straw. Due to this syndrome being relatively unknown, the doctors could not give us many answers on how DDX3X would impact Maeve’s development. We were told in our best case scenario Maeve would one day walk, eat, and breath on her own. The doctors said at best she would communicate using short phrases but that many of the girls with this syndrome are nonverbal. Due to her brain abnormalities, we were told Maeve would most likely be moderately to severely impaired intellectually and has a high risk for developing seizures. As a speech language pathologist and member of the medical/special education world, I understand that my daughter will not be typical. But then again who is? After many tears, Dan and I realized we had a choice to make. We could give up on our child and expect little to nothing from her, or we could choose to have hope and expect miracles. The choice was easy and we simply refuse to accept the limitations put on our daughter. We don’t yet know what Maeve is capable of doing or not doing. We do know that, Maeve will be exactly who she is meant to be, and will be perfect just the way she is. Maeve is currently participating in a DDX3X research study with a team of doctors who are seeking to learn more about this syndrome and hopefully one day find a cure. To learn more about go to DDX3X.org #differentnotless #mightymaeve #zipperclub#cdhawareness #rarediseaseday #ddx3x