#BagAndABump – Week 25

Miss StomawiseBump, bag and I have successfully made it passed the 24 week ‘1st viability’ milestone, at 25+3 today. However, over the past few weeks since my last diary entry, we’ve had a few ups and downs…

The pregnancy had been going beautifully; we were scheduled for Baby C’s routine 20 week anomaly scan on the 21st of January and were so excited to see how much our little bubba had grown.
I was astonished at just how in-depth the ultrasound was with the detailing it was able to pick-up despite bubba only being roughly 6.5 inches at the time. From the structures of his/her brain, to the layers of the spine, to the emptying of the bladder, and the development of the tiny feet…everything was perfect. Finally, the remaining organs that needed to be checked-over were the kidneys; the right one was visible almost immediately, but after 20 minutes of searching, it appeared there was no left kidney and a large fluid/cystic mass was located next to the bladder.

The songrapher wasnt able to go in to much detail with us and so we were referred to Fetal medicine to meet, and be scanned by, a fetal consulant. We were booked in for the following Wednesday and it felt like it was going to be the longest 6 days of our lives.

When we got home and the revelation sunk in, we decided to do a bit of research about it and what it could possibly mean for the future of our baby. We were surprised, and somewhat relieved, to discover that its actually not an uncommon problem and that it can have very little compromise on the quality of life.

I’m a part of a pregnancy support group with other expectant mums due around the same time as myself and there are quite a few of us who are all carrying babies with missing kidneys. Many other members have also shared their stories/experiences of people they have known to live successfully normal lives with only 1 kidney. With detailed ultrasounds only really being available in the last 25 years, it is believed that there are several people 30+ years living life oblivious that they only have 1 kidney! In most cases it is believed the main cause is genetics; due to various MRI’s, CT’s and US’s over the years I know I have both of my kidneys present.

My husband (Richard, 42) has never had any kind of hospital scan or treatment, nor was his mother scanned when she was carrying him, so for all we know he may only have a single kidney. However, we had completely forgotten about Richards sister (44); when she was pregnant with her youngest in her 30’s, she struggled with recurrent UTI’s and so was referred for an ultrasound of her urinary tract where they discovered she had a good, large functioning right kidney, but a shriveled-up, non-functioning left kidney.

Wednesday eventually arrived and the findings, or lack of, were confirmed. The consultant shared a positive outlook with us regarding the remaining kidney, but with it still being early days he requested that I be scanned every 4 weeks to keep an eye on the situation. Our next appointment was booked for Wednesday just gone, but frustratingly it was cancelled at the last moment and so has now been re-scheduled for this Wednesday the 2nd. We have also been referred to a Pediatric Urology Surgeon concerning the cystic mass located next to the bladder as there is a possibility surgery will be required after the birth.

Miss Stomawise 25 weeks pregnant Ileostomy Stoma  UltrasoundAside from the kidney issue, he/she is continuing to thrive in my womb and I am feeling/seeing lots of regular movement now. I have only gained 3lb’s in weight since conception, which I’m a bit disheartened with, but my blood levels are good and Baby C is on the correct growth centile. Since I have been back on daily 10mg of Prednisolne for 7 weeks, my lungs seem to be coping OK with only some minor extra breathlessness.

My ileostomy on the other hand is being one big, fat, pain in the ass! It still protrudes nicely with no real blockage issues, yet I am finding myself having to change my bag 2-3 times a day where I would usually get 48 hours wear-time.

I’m measuring my ileostomy on a weekly basis and cutting correctly to accommodate the bump expansion, so I can’t fathom why I’m suffering with so many leaks. And then there’s the dreaded night-time leaks! Last night I was eventually dozing off at 1am when I discovered the bag I had on had a split at the top where the front and back plastics meet – I’m putting that down to a manufacturing malfunction, though. However, I awoke this morning to a full-on leak from the flange where the bag wasn’t even half-full – no explanation whatsoever! I’ve lost count how many leaks I have had over the last 4 weeks, prior to that, in the whole 2 years I have had my stoma, I had only ever had a handful of leaks during the day and only 3 leaks at night, but with each one I could pin-point a cause.

It’s a good job I can still laugh about it else I’d only cry, and I like that it doesn’t knock my confidence anymore like it used to, you just have to get on with it and remember that once upon a time life was a hell of a lot worse than clearing up a bit of poo. Without my ilesotomy I wouldn’t even be here, let alone blessed with a baby on the way. Hopefully it will all calm down again after the birth – only 10 weeks and 4 days to go! I’m sure it’s going to fly-by with the amount of hospital appointments I’ve got lined-up until my c-section date and with my sister due with my new baby niece in the next 4-6 weeks! I also have a sneaky trip to Coloplast lined-up with Ostobear Billy next week which I can’t wait for.

Rachel xxx
Send Rachel an email