Madison had her scheduled MRI, today and the results were a bit mixed but generally positive. The catheters that were placed a week ago are functioning and those fluid spaces are clearly smaller. The compressed area of the brain has expanded back to fill the space except for the rear left. The rear left is the area that was impacted by the bleeding so we are not surprised. Her fourth ventricle is slightly larger again, which is disappointing since that had looked slightly smaller after the last surgery. There is a possibility that the tube that connects the fourth ventricle to the ventricle above it gets squeezed closed because of the pressure. The needle reduction of the large remaining cyst on the left side from last time may have relieved enough pressure to let the fourth ventricle drain a bit. Her next surgery will be to create a way to get the last large cyst to drain, so we should know if that is the case. If the fourth ventricle does not start to drain, the surgeon may need to drain it with a needle. Madison is still too small to do any surgery on the fourth ventricle.
Madison has also developed an issue with her eye control. After the last surgery, we noticed that her right eye was a bit lazy and tended to drift. Recently, the problem has gotten worse and she will cross her eyes several times a minute. The surgeon feels this could be a result of the pressure being put on by the fourth ventricle, but the problem started after the last procedure which reduced the size of the fourth ventricle. Another possibility could be that all of the draining has thrown the pressure in her head out of whack, and it will take her a while to adjust. The last surgery was in a part of the brain unrelated to control of the eyes, so its not likely that the something happened as direct result of the surgery. Either way, the doctor recommended follow up with an eye doctor in a few weeks.
On a positive note, all of the kids received initial developmental evaluations by Denver Options, which is the public organization here that provides assistance for children with potential developmental delays or disabilities. Madison qualifies because of her health issues, and Noah qualifies because of his low birth weight (2lbs 12oz). (Chloe does not qualify, but is getting close to qualifying for help from Weight Watchers; she is already 9.5 lbs) In short, all of the kids did great in their evaluation, even Madison. They don’t expect much from newborns, which is really what they are, but of what was expected they did fine. They all respond to noise, have differentiated cries, they turn their heads, they have symmetry in their motions, and can track objects to varying degrees with their eyes. We will have follow up therapy and evaluation every week until the kids are 3.
The goal of the therapy will be to observe the kids closely and when delays start to appear, to treat them immediately. The brain has the ability to reprogram other parts to perform the tasks for parts that have been damaged. While Madison is more likely to need therapies, all preemies are at risk of some delays. So, Noah and Chloe will be watched as well.
Next steps, Madison gets a physical on Thursday leading up to shunt revision surgery on Friday.