Background- About a year after I had Jonathan and went through the Nicu journey he had...we decided we needed to consult someone and see if there was anything we could do. We found a perinatologist who did some research on Jonathan and our case and got back to us.. He set up a plan of care..hoping the next time we were pregnant that we would be able to discover the reason that had happened or if it was a fluke.
We got pregnant with Daniel and switched to another OB Practice..at about 12 weeks... Had the worst time trying to get any care at all from the recommendations the specialist had made. OB made our lives hell and made me suffer extra for wanting to fight for him. Finally got to the amniocentesis and found out that what we had was not another fluke but likely to happen again the same as Jonathan.(lungs were not ready) We held off delivery until after another amnio in 10 days.... The results of that came back borderline so I got steroids.(had to fight for that)... 3 days later we had Daniel who was born at nearly 41w weighing over 10 pounds. His lungs were borderline but otherwise the steroids did something.
Fast forward to right now...
I've had the worst problems with getting anyone to communicate, And it seems everyone's just plain forgotten me. So we go through a super drawn out process of getting a referral which probably won't go through , and some big frustration.
So, I just keep asking myself how worth it is all of the fighting that we did to prove we had a real issue...Just to find out we in fact, do have an issue and need care... Only to have to start screaming bloody murder because we can't get any decent care.
Here's a question....How much is it worth KNOWING we have a problem, when there is NO ACTION being taken. That will only guarantee we return to the NICU for a long stay or even worse.
I am feeling upset about all of this but any time I do...Jonathan jumps up and comes and grins at me and gives me an "I love you" and a hug.. Here is an ultrasound pic we have from last week.
Just a NOTE: I changed OB's Earlier in this pregnancy hoping I could avoid the stress the last OB caused...
