I have a 10 week old baby. She was 6lbs 11oz when she was born. Perfectly normal happy baby. She had slow weight gain for about a month. Finally made it to 7lbs 10oz when she was a month old. So we went back to the dr about a month later. She only wieghted 7lbs. She had lost weight and was sort of limp not wanting to look and play like normal. We brought her to the ER they admitted her to PICU. They tested her blood and found she was low in elctrolytes. They were worried about her low potassium and her low chlordie levels. She was only eating every 3 hrs. maybe 2.5 ozs at a time, and spitting up half the time. They started Ivs of potassium for about a week. Then went to giving it to her by mouth twice a day.They also give her nexium for the acid reflux. The potassium is back up but it does still drops some. They said she was losing some thru the urine. They have weighed her and she is back up to 7lbs 7oz. For the last three days she has been the same. They did stomach and kidney xrays. Everything seems to look fine there. They did a CAT scan on her head they found that there was a little fluid on the brain. But they act like thats nothing to worry about. Everything came back good. Then they did a sweat test to see if it was cystic fibrosis, that came back good to. The drs then said it could be something like Bartters Syndrome. There is really no dignosis to that unless you do a kidney biopsy. Which there not going to do unless there for sure. I just dont know what to think anymore. They run test after test and they have no clue what could cause her to spit up and have low potassium. If anyone knows anything about any of this please let me know, Or if you have any questions that I need to be asking the drs. We are still in ICU and its been 8 days.Just let me know if u know any thing about this . Any thing would be helpfull thanks alot.
Firstly may i congratulate you and your family on the new arrival.
This must be a very worrying time for you, also the fear at all the tests but being told nothing.
I would firstly arm yourself with a pen and paper, as you think of any questions or worries you might have write them down, as sometimes in the confusion we forget.
Also write down what you are being told, as sometimes things draw a blank when we are told so much.
From what i have read the tests are important, and yes there are alot of them. They will be checking why this has happened? from what source? what if any damage it has done? and how to stabilise it.
If i were you i would ask to speak to the doctor, to belay any worries you have and to ask what have they found? why so many tests? what are they looking for? has it done any damage? where to go from here?
most importantly too, your baby is very young, and you yourself need to think of yourself, which at the moment will be very hard i know, sit down quietly with pen and paper, clear your thoughts, and then let the questions and worries you have come to thought slowly, and write them down.
I hope this helps a little and i do hope your baby is well soon
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