Hi from the mom... Today has been the first 'eyeopening' day in a long time about how Presleigh seems to fall through the cracks of everything. I'll do my best to give as much background here. I apologise if I'm whinging, but I guess that I feel I need to vent a little on Presleigh's blog rather than my own as this is more relevant here.
On Jan 16, I was admitted to the hospital as my blood pressure was thru the roof. I was left alone for 4 days (not one doctor came to visit, I just had nurses giving me meds and monitoring Presleigh) and I finally demanded someone come see me because I couldn't stand it anymore. I was sent home on the antenatal programme and bedrest. I had appointments with the doctor, ultrasounds, and nurses coming 4 times a week - how someone is supposed to be on bedrest with zero support from anyone to take me to these appointments and with all the nurses coming is beyond me. I went to my first weekly ultrasound on the 23rd, everything seemed to be 'ok'ish - still concerns about my bp, however, Presleigh was kicking and moving for them. I went to my second weekly ultrasound on the 30th and was sent from there back to the hospital and was given a report to take with me. For the rest of my life I will remember the following text that was at the very bottom of the report (which was not in an envelope, folded, anything):
NO BABE MOVEMENTS, HIGH RISK OF STILLBIRTH, NO GROWTH IN 7 DAYS, PLACENTA & CORD NON FUNCTIONAL
I stood in the parking lot of the building where I had the ultrasound, looking at this, trying not to break down in front of Rachel as she had been with me and waiting for her dad to come get her. The moment I sat down in the car, Presleigh wholloped my cervix with one powerful umph and I said "thats my girl, you show them" and started bawling. I kept seeing "stillbirth" flashing in front of my eyes. How I drove from there to the hospital is beyond me. I still had all sorts of logistics flashing in front of my eyes... how was my car to get home? Could someone pick up my stuff at various things for me that were waiting for me? What about getting Rachel to school tomorrow for her field trip? I can't find my bank card for paying for parking. I don't have anything ready for a baby yet... her room isn't painted. How do I reach my mom, she's in Ontario?
When I arrived, for some reason they felt it was better for me to have a private room - I guess because they feared the worst. I was on complete bedrest - no getting up to pee, no shower, no nothing. I was allowed into a wheelchair to be wheeled around, but even then I got scowled at. I had to take someone and show them where my car was, sheesh. I sent home the majority of my stuff I had had with me - there is no point in trying to keep track of my jacket and clothes etc - someone can bring me clean ones when its time to go home. A nurse showed up with a very pointy needle and poked me - then told me what it was - steroids for baby's lung development. Reality started to sink in. I made it to the hospital in time to have had tv and telephone hooked up before end of the day, so I was able to cry on people and watch the hockey games.
On Feb 1, I had another ultrasound and nothing had changed from the one on the 30th. I had had two steroid shots and they decided to transfer me to another hospital that delivers babies that are prior to 32 weeks. Lights flashing and sirens blazing, off we went. The rest of this part of the story is back in the archives if you want to read more on that...
Back in the archives I've mentioned MRIs and all sorts of stuff of issues we've come across...
Everything that we've gone through as far as getting into physio, seeing OT, etc, has all been because I've had to ASK for help. I was never given anything - phone numbers, books, brochures, referrals etc when we were discharged from the NICU/SCN. I was never offered support systems, I was never offered contact with other parents, nothing. I've always thought that there should be something in the NICU that has a list of contact information if you need help with something, anything.... which brings me to my rant.
Because Presleigh was over 30 weeks, we were never informed of the Early Intervention programme. Because she was over 30 weeks, it was not an automatic referral to OT. Because she was over 30 weeks and 'healthy', we were never given anything other than a referral to a ped. Last week I was invited to join the Parents in Partnership council for the NICU/SCN for the health region. Tonight was the first meeting for me to attend.
WOW
Did we ever fall through the cracks. There is a book we were supposed to get called Going Home? Now What? - You And Your Preemie Baby. Its a comphrensive list of services, referrals, contacts... more than you can possibly imagine. Because she was over 30 weeks, we didn't get outpatient perinatal nurses, we have received 1 and I repeat that, 1 visit from a nurse. That was the day after we came home in March.
I can't wait to get more involved with PIP and hopefully help preemies not be caught in the same place we were.
There were so many things that vary from hospital to hospital obviously, but when you're all falling under the same governing body, you'd think there would be some consistancy. I also found out that there were some gifts we should have received.. never got those either. Not that it matters, but obviously we 'missed' alot of things. I was thinking tonight on the way to the meeting that I was surprised how they seem to keep honouring the volunteer cuddlers however, it was never once offered to us for a volunteer to come in when we weren't there. There was one day that I couldn't get to the hospital due to weather and it would have been nice to know that there was someone giving cuddles.
Prior to tonight, I felt that we had had a reasonably 'ok' stay in the NICU/SCN until I heard stories from other moms. How they'd developed friendships with other parents and how they'd bonded in the pumping room etc... And each time a mom mentioned that, all that kept flashing in my mind was the baby that was in the isolette next to us that had arrived in the NICU in a quarentine/oxygen tent weighing somewhere in the neighbourhood of 600grams and that when I walked in to the pod and saw mom standing there crying, I reached out my hand to squeeze hers and the nurse came along and 'slammed' the curtains closed between us. The message was loud n clear, so I stuck to our pod and kept our curtains drawn and stayed secluded. I realize now how isolated we were. When we were transferred to another hospital, it was warm and inviting and in our area with 10 beds (12 babies - 2 sets of twins), all the moms would sit and cuddle with their babies and we would talk and discuss everything from shoes to our babies and it was encouraged.
Armed now with all this information, all this wish to make things better, I've signed up to be a hospital volunteer. (ye gods what have I done?) My desire is to go back to the second hospital where we were discharged from and ensure that parents have a great experience there. Ensure they are discharged and armed with all sorts of information so that they too don't fall through the cracks.
I was thinking I'd do a separate post regarding today's OT and PT appointments, but I've decided to just keep typing rather than waiting for Blogger twice...
We met with Clare (OT) and Kelli (PT) at the hospital this afternoon to do an assessment. The jury is still out on whether or not Presleigh's arm issues are her just determined not to bend/give or if there is truly an issue so it is not going to be 'addressed' per say, rather just keeping an eye on and work with the other issues as they are now and review the arms every few months or as neccessary. We will meet with Kelli every 3 weeks for now and work on the rolling and sitting and tummy time. We have some lovely exercises to work on every day so it's gonna be busy busy. We meet with Clare again in 3 weeks for the food issues. She has encouraged us to keep trying, but not to stress out because she's gaining and she just may take longer to accept the textures. Kelli has referred us to a special clinic (I want to call it the Dbad clinic but I _know_ that isn't right and when I remember the name, I'll let ya know) and this will require Presleigh to wear a helmet for several hours a day and apply pressure to the other side of her head since she is bound and determined to sleep on one side and causing the misshapeness of her head and this helmet will hopefully correct some of that. I have tried the thingie that goes in the bed that keeps them in one place (apparently) but found it more often than not at the other end of the crib, or even better, the velcro attached to her hair. I have tried rolling up a towel inside of a receiving blanket and propping that behind her - now she undoes it all and I find them everywhere. I have tried pinning that to the sheets of the bed, she just flips herself anyways. I have tried pinning HER to the bed, she just flips and tears the sleeper. (Onesie on inside of a sleeper with the pin wrapped in a facecloth.) I have tried putting her in a bigger sleeper with a smaller roll pinned to it on the inside and then her in a proper fitting sleeper inside that - can we talk furnace? Determined child.
So that's been today... bring it on Tomorrow, I can take you!
