u/LocationStriking5586

my daughter was born july 10th after a brutal 40 hours of later. 15 hours later she was rushed to the nicu where she spent 26 days there. she has a abnormal kidney, issues with her heart, she couldn’t breathe and her oxygen kept dropping etc.

the day of her discharge i was so happy i couldn’t sleep, we stayed at the hospital ready to take her home. right before discharge we received news that she has an extremely rare genetic deletion. there is barely any research on it, what is out there is extremely scary. we don’t know what her quality of life will be or her life expectancy.

i never pictured myself as someone with a special needs child. people with special needs child are stronger than i will ever be. i don’t know how to do this with her future so uncertain. i cry constantly and can barely hold her. she doesn’t feel like mine. it feels like someone is playing a joke and switched her at the hospital.

my husband has been beyond amazing and sees me struggling and he’s concerned. i just don’t see a way forward how this doesn’t change my husband’s and i’s life forever and for the worst.

i’ve had awful thoughts including adoption, which i know i wouldn’t do because i couldn’t live with it. i just know if i knew about this during pregnancy i wouldn’t have continued it, which is so terrible bc she’s here now and so cute.

i know she is apart of me and i know at my core im just scared for her and the future, i just can’t dig myself out of this darkness right now.

my 1 month old daughter was just diagnosed with this deletion. they don’t know the exact genomes until the final report comes back. she was in the nicu up until today with breathing issues which turned into issues eating but she’s off oxygen and taking bottle like a champ. i know nothing is for certain until we know the exact genomes but my husband and i feel like we’re drowning. can anyone tell me what this diagnosis might mean for her?

she has some heart issues, a rotated kidney which is fully functioning and a slight head lag that has already gotten better. just look for any sort of information.

my 1 month old daughter was just diagnosed with this deletion. they don’t know the exact genomes until the final report comes back. she was in the nicu up until today with breathing issues which turned into issues eating but she’s off oxygen and taking bottle like a champ. can anyone tell me what this diagnosis might mean for her?

she has some heart issues, a rotated kidney which is fully functioning and a slight head lag that has already gotten better. just look for any sort of information.

my 1 month old daughter was just diagnosed with this deletion. they don’t know the exact genomes until the final report comes back. she was in the nicu up until today with breathing issues which turned into issues eating but she’s off oxygen and taking bottle like a champ. can anyone tell me what this diagnosis might mean for her?

she has some heart issues, a rotated kidney which is fully functioning and a slight head lag that has already gotten better. just look for any sort of information.

just so confused. LO can take a full bottle with oxygen but really struggles without it.

she’ll stay at 90-95 without oxygen and 95-100 with. she’s still at 1/10 liter at 50% and just can not come off of it. she was born 39w2d and has been on oxygen now for 12 days. they originally did a chest x-ray and she still had fluid so they did lasiks to get rid of the fluid and she was able to come off cpap. i just don’t understand why she struggles still. dr said if she still needs it later this week we’ll do a suck swallow study or another x-ray. i just don’t love hitting her with extra radiation

anyone else with something similar. she’s been here for almost 3 weeks and i don’t want her to struggle when she comes home but i just need her home

i have tried everything, different flange sizes, different spectra attachments, soft silicone, hard flange, pumping cream, pumping spray and it all fucking HURTS. i pump 8 times a day. im so tired from not sleeping and i feel like im never being emptied on one breast and other produces nothing. i do not know what to do to make this easier.

my daughter is in the nicu and i feel like providing milk is the only way i can help her but im not even producing enough for her feeds.

any advice please because im hitting a wall.

my little girl was born july 10th (39w 2d) and has been in the NICU since the following saturday due to fluid in her lungs and low oxygen. they have been slowly weaning her off and she is finally able to be bottle fed but won’t take the bottle. she’ll do 5-20mls and then start to get so frustrated and scream. i fear she’s developed an aversion to feeding and still just struggles with it. we tried latching her today for breastfeeding and she latched a bit then started crying and screaming.

the dr is now mentioning Prader Willi Syndrome bc apparently she has low muscle tone? but it’s nothing crazy? apparently her head lags a bit but when i hold her she can pick her head up and move it side to side. i really just feel like she’s struggling from being in the NICU but maybe that’s just me trying to be positive.

i’m trying to keep it together for her but she is my first and we did IVF to get here.

i just need encouraging words and see if anyone has had similar experiences.