my daughter was born at 26 weeks and has been in the nicu for 6 weeks she has had multiple blood and platelet transfusions and severe distention in her belly. She had surgery to see if she had NEC, which she didn't have. Since the surgery three days ago her blood pressure is up and down and she is Desating on and off and she has been put on an oscillator to help her breath. The doctors don't know what is wrong with her. Has anyone had an experience like this with their baby and can maybe give me some advice? desperate to find the answer.
my little guy who was born at 24 weeks...had kind of the same situation...his belly got distented and it was pushing his organs and it was making it difficult to breath, him too was put on the oscillator vent to help him, all the Drs. kept doing a bunch of testing..even lombard puntcure to figure out what the cause, but they never did find out, all his test kept coming back neg....i dont understand why did they do surgery on your little one for NEC when they knew it wasent NEC...they had also told me that it could have been NEC for my son but they never really got a positive on him so they never did anything...i week later he was still having problems breathing and desatting i was getting mad i wanted answers..and the NP kept telling me that they see this all the time and half of the time they never really find out why this is happening...but i coudnt bare to look at my littke guy all swallen i kept asking and i was in the NICU nite and day..till one day i asked for him to be transfred to a different hospital because to me i felt like they werent doing enough...thas when they called in a surgeant and he came to talk to me....what he did was draw the fluid from his belly with needles...hoping that it woudnt came back!
well if worked!!! the fluid never came back!!!
And dont worry about the desatting its a normal thing all preemies go tru that phase.
and im sure they are giving her some meds for her blood pressure..its a bumpy road...one day he was fine and than all the sudden somenthing was wrong...it was really hard.
We were in the NICU for 111 long days...i was there all the time...24/7 hes been home for almost 3 motnhs now...he got released 1 days before my due date...it was a miracle!
he did come home on oxygen and a pulse ox...but hes been off now for almost 3 weeks!!
he was born 1 lbs 7 oz. and he is now 12 lbs as of today!!!!!
just keep praying and be persistant with the drs. and nurses always ask questions and try to be there as much as you can....if you need to talk feel free to message me at anytime...take care hun and god bless.
My daughter was born 24wks at 1pd 2.3oz. She had to be put on the oscilator because she was having bad blood gases..which she also kept pullin the other ventilatior out of her mouth. She was desating more than she is now that she on the oscillator though. I call everyday as well as visit. Like u said there are gud and bad. 3steps forward 2 steps bak...but all in all much prayer keeps my baby covered and me sane. What upsets ne is when changes are made such as that...and they didnt call me.....plus i,found out that part one of her lungs calasped....i was outdone that i wasnt informed of that. So yes im there watching every luttle thing they do to her.
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