Hard to believe it’s only been a week since my last post, because boy has that week been eventful. Having Madeleine at Sick Kids has been very challenging for a number of reasons – another hospital visit to cram into the day, more travel time, a completely different facility with completely different ways of doing things that we don’t always feel comfortable with, generally feeling out of the loop when it comes to Madeleine’s care and having to walk the line of being an advocate while not being pushy. But mostly the hard part was that she needed surgery, and will probably need another one in a few weeks time.
The neurosurgery team here saw Madeleine’s MRI results and decided that she most definitely needed a shunt in order to relieve the pressure and swelling in her ventricles that has resulted from the blocked flow of fluid. We knew of course that this was happening based on her head circumference measurements and her weekly ultrasounds, but until we got to Sick Kids I didn’t know just how bad it was. They went ahead and placed a temporary subgaleal shunt in Madeleine’s head to start the process of draining the fluid, and will they likely also have to insert a permanent shunt in a few weeks once Madeleine has had a chance to gain more weight and put on some more subcutaneous fat.
We are a few days out from surgery now, and Madeleine is doing okay. She is still ventilated, and was initially having trouble tolerating her feeds, but is now back to her full amount every two hours with only small amounts coming back up, and she should be extubated soon. The other issue of concern is what this will all mean for Madeleine’s long-term brain development, but since it is pretty much completely impossible to gauge that right now (or anytime soon, for that matter), we’re doing our best to push that worry aside. Yesterday she was given the green light from neurosurgery to be transferred back to Sunnybrook, and we are hoping she will be discharged soon.
Even though Madeleine’s brain has become the more pressing priority as of late, we have still been visiting Reid as much as we can, and he has been getting lots of cuddles. This is important to note because, does that boy ever like to be cuddled!!!! Since his lungs are not as strong as Madeleine’s (and also perhaps because he had the issue with his murmur), he has a tendency to struggle a little more with keeping his heart rate and oxygen saturation steady. Take that boy out for a cuddle though, and he does so well! It is so wonderful to know that something we absolutely love getting the chance to do is also something that makes him so much happier and stronger. (Note to Reid: please maintain this preference forever and ever ok thanks.)
This past week was definitely one of the toughest we’ve had since the babies were born, but now that Madeleine’s surgery is complete and both babies are doing fairly well, it feels like we can breathe a little easier again. I am definitely starting to understand well why they call the NICU experience a rollercoaster ride.