Some of you may be wondering “Ange! Jody! Why haven’t you been updating us on anything?! TELL US WHAT’S GOING ON!” Well, we’ve had nothing to really report – which has been great for us to be honest. Having just a little bit of normalcy for this pregnancy has been pretty great. I’m finally showing a proper baby bump, my back hurts, I feel her move lots (Side note: having something grow in you and move all around is creepy as hell, but super comforting to know she’s there. But still, it’s creepy as hell. End of aside), and I’m ok with all of it!
The last time we were in at CHEO, Dr. O told us “You know, if you are ok with it, and since nothing new has changed – by which, she’s still developing well in all other aspects – why don’t we push your next appointment from 2wks to 4wks?” Jody and I jumped at this opportunity for some sort of break from all the hospital and doctor visits. We love getting to see our girl on screen, and love the teams at both hospitals, but realize that as we get closer to our date, the appointments will increase and even more so once she’s here. So, having just a wee break from all the appointments and ultrasounds was nice. That being said, we did have a few consults with both the surgical and medical teams during this time which we can fill you in on.
At CHEO, we met with our 5th Fellow and Dr. C who advised us that we shouldn’t be too focused on the omphalocele so much as we should about her lungs and heart once she’s been delivered. Omphalocele’s – those can be fixed, those can be dealt with – but we need to remember the bigger picture. Though we knew that there could be issues with her heart and lungs once she’s here, we’ve been so concerned about the omphalocele and what’s inside that we’ve had little blinders on when it came to her other organs. Additionally, we thought that she’d have immediate surgery as soon as she was taken to CHEO – which really worried me as I would be so out of it from the c-section that I’d have no clue what’s happening – but luckily this isn’t the case.
After our girl is born, she will have her initial assessment by the Medical team (more on that later) as she’s stabilized. Once ready, they will take her to CHEO in a large incubator carrier. Jody will accompany her and the team as I recover at the General. Once at CHEO, they will complete further testing – including an ultrasound and MRI. Our 5th Fellow advised us that he will be there with her also when she arrives. He and Dr. C will assess her omphalocele and see if a) the sac and contents can be pushed back in manually by the doctors, b) if they will need to do surgery on the omphalocele to put it back in – perhaps by stretching some of the skin around her sac with a special stint – and if so, when, or c) if they would do what’s called ‘Paint and Wait’. This is where they coat the omphalocele with a special cream compound to protect and cover the sac as skin grows over the omphalocele. Once the skin has generated over, the omphalocele would be treated like a hernia and they would operate, all while ensuring that her abdomen can handle the surgery. We aren’t sure which road our girl will take just yet, and that’s ok. We know she’s in great hands and no matter what, she’s going to get where she needs to be!
We recently met our medical doctor and 6th Fellow (Side note: we are just 3 away from a full Fellowship of the Rings! End of aside) at the General who wanted to gauge our understanding about things thus far. Additionally, they wanted to talk to us on their responsibilities in our baby’s recovery process and advise on any possible complications that can arise from babies being in NICU for an extended period of time, or having certain medical equipment in them too long.
They advised that they will not be performing or assisting in surgery, but rather that they are there to work with the surgical team and would help diagnose and treat the baby as needed from the time she’s born to the time she leaves NICU. It was then recommended that we reach out to the NICU team and request a tour of their facility.
Recently I joined a support group for Mother’s Of Omphalocele’s – or MOO’s for short. I had joked to Jody well before joining that we are more like POO’s as we are Parents Of Omphalocele’s, and even told one of the other mom’s about this acronym. She suggested we have Mr. Hankey The Christmas Poo as our mascot, and, well, since we are so close to Christmas…..
I have to say, I only just joined the MOO support group within the last 24 hrs, but I’m already finding the members and their stories so comforting and inspiring! Jody had actually found the group when we were in the thick of the unknown, and he’d suggested I join, but I was so scared of what sorts of stories I’d encounter or that we wouldn’t make it this far, so I opted not to. Honestly, I wish I’d joined sooner, even just to know that I’m really not alone or to have a ‘heads up’ on questions to ask when we had our initial appointments. Our family and friends were supportive during the mystery days, but there is only so much they can do when they are not in the same situation as us.
One of the ladies in the group gave a pretty great analogy of how to look at things: “It’s like planning your whole life to go to Paris but then realizing you are going to Mexico first. Its equally beuatiful and amazing in its own right but it just wasn’t your original dream. Once you get there you will see the beauty that Mexico has to offer. And eventually you will get to Paris and realize that the detour was really amazing too and you found out a lot about yourself while there.”