olejkaa
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6010
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My daughter was born a week ago and has already gone through more suffering than I have in my 25 years.
She was born with a combination of heart defects due to her Q22.1.1. deletion syndrome that the doctors have never seen before.
It's amazing to see the doctors and CICU nurses fighting to keep her alive as if she was their own. I'm so greatful for modern medicine.
But medicine can only do so much so we could really use some prayers and support during this holiday season.
I've been a long time lurker so i have no idea how this stuff really works.
Front page edit:
Guys. You have no idea how amazing you are. I mean honestly. I never knew that a simple word of encouragement could make such a huge impact on me.
My wife and I are reading your comments out loud through the phone (she's at home recovering from a C-section) and it's just so uplifting!
I know a lot of you asked for updates and more details. If you can bear with me, I promise to deliver.
Thank you all.
Much love.
Mapachedorado
my heart goes to you.
PenseeRivard
My son has 22q as well. Born 14 years ago and his first open heart surgery was at 1 day old. Stay strong and hopeful, it can get better.
restingbitchfaceisjustmyface
Your pic took me right back to 2003. My daughter was on ECMO for six weeks. She had TAPVR and required two open heart surgeries.
AlottaFagina
My nephew was born with 22Q, and a hole in his heart. He’s 7 now and an awesome little dude. Hang in there! Best wishes to your little girl.
kronoct
Best wishes and hope everything works out perfectly!
loony23
I couldn't see the baby at first. She's so little. You guys will get through it. Stay strong.
trippingthelightfantastic
sjrobot
Thinking of you and your sweet one....sending love and healing.
slyvic
I hope your daughter comes through. It was hard to see my daughter with needles in her arms. I wouldn't be able to hold my shit together.
TouchThaFishyyy
ATATtightropeWalker
Wishing you all strength in this difficult time.
yeahidontknow
sono2015
As a parent of a 9 month old this picture breaks my heart. Sending positive vibes your little one makes it through.
CuntPuncher1000
That's terrifying. Thoughts and prayers my friend.
restingbitchfaceisjustmyface
She is now 14 and is doing great. Sending love for you and your little one. Message me if you need to vent.
tzxAzrael
reply-to-self to make it easier to follow a thread, as well as preventing messages from going out of order due to voting.
Clairdelooney
deadlypoetry
Not religious, but have faith in the doctors. They will make sure next Christmas her presents will be under the tree. Keep strong!
HidaSozen
@olejkaa I'm m a nurse in a CICU, and I see more scenes like this than I care to admit. Keep your head up and remember that people... (1/2)
HidaSozen
HidaSozen
To help and listen. Cherish your time and make memories, they mean a lot no matter the way your daughter's course goes. I'm pulling for you
enigma411
Hoping your little girl pulls through!
theredlego
monty81
Wishing you and your daughter all the very best in the world at this time.
yamigrl
She's in the right place with the right medical professionals and two wonderful parents. She's luckier than you think! Good luck nonetheless
krzdaze
Hoping the best for you and the little fighter!
Caboose007
I second this
BIGBOYRN
Here's hoping she continues to be a fighter so we can toast her first birthday.
homer8011
My son was Jacob with heart issues and partial deletion on the 4th. Still hear and feel last breath some times. Hardest day in my life.
MyHumanForm
I really want to give you a downvote for having those phantom feels. You shouldn't have to suffer. Hopefully they bring a smile sometimes.
homer8011
Stay strong. No easy decisions and no right answers.
osckey
Be assured, although these defects are very rare we are thoroughly taught about 22q11 deletions in medical school. Trust the staff, God bles
TaiChiChick
A friend adopted a daughter with 22Q. She's doing great now! 3rd grade, general ed classroom, runs in the running club every morning. 1/?
TaiChiChick
Amazing things are possible! My friend is part of a 22Q support community and they go to UC Davis a couple of times per year 2/
TaiChiChick
to participate in research about the syndrome. Hang in there. You'll be amazed at what your daughter will accomplish! 3/3
nikolateslaismyhomeboy
mamajaimie
I truly will pray for your whole family. You need as much love and strength as she does.
Joseph123456
I’ve deleted my words over and over and restarted my comment over and over.
kingmirlin
My second is dune in June I hope she pulls through, as I know any good dad would lay down their own heart for their little one.
actorsnonactors
muaaaaaaaaaaaaaaaaaaaaaaaaaaad dib!
loony23
My second will be here in June as well !
lngwlkr
The spice must flow!
Grudgebearingmidget
PapaStone
i had one due in march but just found out he has a whole extra set of chromosomes. Sadly will not get my boy after all. Enjoy the babies tho
feckith
CriticlThinker
Second due in June also. We’ve had all the testing available to us but I still know something rare could pop up. So much worry.
kingmirlin
I'm sending good luck your way - let me know how it goes.
kepler20c
May your Kwasitz Haderach escape the Golden Path.
Grudgebearingmidget
MrsWhatsit
Is that an ECMO setup? Ours was in the NICU seven weeks (he’s 16 now), it’s going to be scary but stay strong.Blessings for your little one.
Benegesseritwitch75
ECMO is amazing. As a CCT medic I can handle some very sick adults, NICU teams are just top of the line. Much good juju to your little one.
TheMedGeek
For people who want to learn about ECMO /a/cU2jr
Jsouth73
Mom?
olejkaa
Dad
olejkaa
Yes that is the ECMO circuit. It's helping her heart recover from her surgery. I'm happy to hear your son made it off. And thank you.
CanadiansWilllRule
Said a prayer for your little one
Steelballsofstill
Stay strong OP! I hope all goes well.
thunderboltsandlightningveryveryfrighting
Worked in a NICU and saw many ECMO babies do really really well. Thoughts and prayers your way.
Uzernaime
NICU dad here, 27week gestation, I cant compare to what you are going through, keep your wits about you, much love, get help if u need it!
Pinkwhistle
What is her name?
KoalaK
@OP I work in a CICU as a respiratory therapist and ECMO specialist, and my father was on ECMO this summer. 1/2
KoalaK
Please feel free to reach out to me in a message if you have any questions or if you want to vent. ECMO is amazing and also terrifying. 2/2
lazidog
I was only in the NICU overnight because me and my mom had chorioamnionitis and I was really sick, but now I'm 25, hope everything works out
MrsWhatsit
He was on ECMO for 9 days, OP. He’s a six foot tall sophomore who runs a very fast mile. A sweetie of a kid. I hope your daughter grows ...
MrsWhatsit
...up to be a smart, sweet, awesome kid who brings a smile to your face with all her joyous and silly antics. Praying for you all.
JesusChristopher
ECMO has good outcomes for cardiac kids
chente611
Top notch
ladylurken
We just got out of the NICU with our daughter. Born at 33 weeks. This is so much harder than what we went through, very proud of you. 1 of2
ladylurken
(2 of 2) Stay strong for your daughter. Enjoy every moment even when it’s hard and hug your wife every chance you can. You got this.
fuckyou92
I was on ECMO 25 years ago when I was born. I lead a successful life with the only thing being that I no longer have a right carotid artery
Elliottwrites
Does that impact you at all?
fuckyou92
Just no pulse on my right side. I also go to an ECMO reunion every year at the hospital. It took me 20 years to realize it was for the
fuckyou92
Parents not the kids