I knew it wasn't going to be a good day, but I never expected it to be quite so hard or so emotional. Which is silly, I know our hospital system well by know, I should have expected and anticipated every single thing that went wrong, I must be losing my touch!
First up we arrive at the NICU. The guy ay reception had no idea we were coming and was a little confused about why it had been organised for that time given that the doctors were doing rounds and we couldn't enter the ward. He asked us to wait but they still weren't finished by the time our plastics appointment rolled around so we said we'd have to come back after the ultrasound.
Down stairs to the specialists clinics. Doctor kimble doesn't have a referral for you, please make sure your gp sends one through." Ok, whatever. We walk into a completely packed waiting room and I know it doesn't look like we'll make our next appointment on time, even though its scheduled for an hour and 15 minutes later.
At 20 minutes until our scan and knowing we still have to get out of the parking complex and across town in lunch time traffic, we're still waiting to be seen. I called womens imaging and explained to the very kind and lovely receptionist, and she said she would be able to squeeze us in still if we could make it by 1pm, otherwise we would have to come back tomorrow.
By this point my day was just going so wrong, and I was already so tightly wired in anticipation of it all that I just broke down. I was litterally sobbing in the waiting room, make up running all over my face! I was sitting there surrounded by other mothers whose children are at various stages of their treatment, listening to them tell this other newcomer how lucky they all are.
Why is it that I seem to be the only mother tjat doesnt think that this is "lucky"?? I dont give a rats proverbial that it can be repaired! I still have a child that needs surgery, morphine, treatment plans, and so on and so on! What the hell is lucky about that? But of course as soon as I think that I feel guilty all over again for bwing the one mother that sees a burden instead of a blessing! Surely there must be something wrong with me to be the only one who feels like we're getting a raw deal?
Drew went to try and hurry them up, and finally 20 minutes some young girl calling herself a doctor comes to get us, saying that she will answer our questions while the surgeon finishes with his other paitent. She barely looked to be sophie's age but we didn't have much choice, it was already 12pm.
I tried to ask our questions but it was ovious that she was out of her depth. When I asked what the time frame was for the first surgery she initially said 3 months, and then when I said i'd heard of it being done as early as 1 month she agreed and decided that it depends on how the child is developing. Same went for every other question: if I asked her to clarify or said i'd heard different she really didn't know.
One thing that has come up though is the grommets. SOME cleft affected kids have problems with their ears and MIGHT require grommets inserted to help with that. But it seems that the royal hobart takes a far more aggressive approach and actually does the procedure on EVERY child at 6 months. Now there is no way that that is happening in our case. I'm not having them put in when they may not even be needed. Drew certainly didn't have them, and really 6 months is far too young to know if they will be needed or not.
So after she had deflected all of our questions with no answers, the doctor left the room to go and get the surgeon. It was 12.15pm and she assured us he would only be a second. As the minutes ticked away we got more and more ticked off, and finally gave up and left at 12.30pm. We never even got to meet our surgeon.
Another mad dash through town and we arrived at the womens imaging centre with 5 minutes to spare. I apologised so much and the ladies told us not to be silly, they couldn't believe how long we had been made to wait at the hospital, let alone that we didn't even get what we went all that way for in the first place!
After all that the scan went fine. Everything is where it should be and bub isn't measuring big on their machine either so looks like that was just a mistake on regional imaging's part. We couldn't get a look at the cleft because she is covering her face with her hand still, but everything else is perfect so thats all that matters.
Even though we'd said we would go back to the hospital for the NICU, I was in no state to do it by the time the scan was over. I knew that if I walked in there i'd just fall appart again, so instead we went out for lunch on the waterfront (fish and chips lol) and then started thr long journey home.
So all up we started our trip at 8.30 yesterday morning, and made it home at 6.30 tonight, none the wiser and a whole lot more frustrated and alone-feeling. I think i'm going to need a day or two to get over that. I feel completely deflated frankly. And these are the people that are meant to be helping our little girl be normal again.... God help her.
