Список из самых популярных хештегов по теме #CONGENITALDIAPHRAGMATICHERNIA

Wyatt is finally home after 422 days in our hospital! This fighter was born with a rare condition called congenital diaphragmatic hernia and he had been here since he was born. He was even known as the “mayor” and “governor” of our hospital! Wyatt has overcome overwhelming odds and we are so happy he’s home with his family. ❤️

Last year today our world got turned upside down. In the middle of pregnancy we found out that our baby was sick. Growing a baby that only has an about 50% chance to actually get to live and will have to undergo several surgeries shortly after birth is pretty surreal. But we tried to stay optimistic and made the best of it. Now a year later, our little love is over 8 months old, sweet as can be and we can’t help but feel SO lucky that we get to be his parents, see him thrive and discover the world around him ☀️ #cdhawareness #smallchampion #calibaby

Avalyn is doing amazingly well!! This little girl has almost reached 6 lbs, double what she weighed when she was born. Avalyn came out early and smaller than expected for her gestational age. She was prenatally diagnosed with left congenital diaphragmatic hernia by one of our amazing maternal fetal medicine specialists, Dr. Jennifer Jolley. Because of Dr. Jolley’s outstanding work, we were able to meet with Avalyn’s mom even before Avalyn’s birth to counsel her on the best management for CDH, answer questions, and relieve anxiety. All of us were so worried that Avalyn was going to be very sick after birth, as is the case with many babies with CDH. But she surprised us—she was very stable before, during, and after her CDH surgery. Mom tells me Avalyn has been such a good baby since discharge—she rarely cries or spits up. What a blessing and a miracle!! #longlivechildhood #pediatricsurgery #premie #cdh #cdhsurvivor #cdhawareness #congenitaldiaphragmatichernia #mfm #maternalfetalmedicine #neonatology #nicu #nicumom #nicugrandma #nicugrad #biggirl #bestbaby #icanhardlybelieveit

I miss my selfies with this beauty she was always ready for the camera. • When we found out we were expecting a girl, I automatically started picturing our future as a family and the many fun things her and mommy would do. • I knew I had my little best friend on the way, I was so excited to know I would have her to go shopping with, get our nails done with, and I'm sure she would have wanted to play princess dress up. I looked forward to doing fun mommy and daughter outings. • Instead, we were left with so many princess dresses. Darlyn, Mommy and DADA have not been able to put them away. Learning to live "our new norm" is painful, heartbreaking and hard. • In the midst of all your medical battles, you still found a way to make us all smile and uplift us all. You inspire us all Princess. #darlynstrongforever • #babylosssupport #babyinheaven #babylossawareness #babyprincess #darlynstrong #darlynsangels #congenitaldiaphragmatichernia #cdhawareness #cdhrepairsurgery #cdhrepairsurgeon #babylosscommunity #lifeafterloss #nicuparents #nicunursesrock #pediatricsurgery #neonatology #pediatric #chocchildrenshospital #childrenshospitalorangecounty #hydrocephalus #esophagealatresia #duodenalatresia #gtubebaby #gjtube #neverevergiveup #broviac

“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

Faux-hawk Friday One of Lysander’s nurses did it, and I love it. ☺️ #lysanderimmanuel #pray4lysander #fauxhawkfriday

Reflecting on my life, my babies, and our journey together as a family. Needless to say, I’m missing my angel girl today... #omphalocele #cdhawareness #congenitaldiaphragmatichernia #3monthsold #neonatalloss #csection #specialscars

Well we finally have a completely wireless and free range baby!! We officially got word that after 3 weeks in the NICU that he can finally come home tomorrow!! #igotnostringstoholdmedown #nostringsattached #cdh #cdhsurvivor #cdhawareness #congenitaldiaphragmatichernia #milkdestroyer

It’s been more than 6 weeks that we’ve been on this hospital journey with you little Ivy. You have shown us so much strength and have fought so hard to be here with us, you are our warrior baby. From entering this world with only one and a half lungs, having ventilators breathing for you for weeks, having major surgery on day 5 where you almost lost your life due to an unnecessary bleed, fighting pneumonia, chest drain, a collapsed lung, morphine withdrawals and other issues you’ve had to deal with along the way. Health and love is all you need for happiness in this life - Ivy, family and friends, you have shown us that. This challenging time has shown us how INCREDIBLY lucky we are to have the friends and family we have. The generosity we have received has blown our minds and we totally do not deserve it! When you’re put in this situation, you just deal with it, there’s no other choice other than to stay positive. Our family and friends have helped us cope in so many ways. THANK YOU!! And a very special shout out to my sister @cha_cha_charles - you know why. #cdhawareness #congenitaldiaphragmatichernia #nicumum #health #love #grateful