The Diagnosis Is…

Written by Scott

Topics: Faith, Family

diagnosis

Today was a very long day, and not just because of the drive up to Seattle, or the three coordinated appointments for the fetal MRI, the pediatric neurologist, and the fetal echocardiogram…but there were several weeks of build up to this day. And to be frank, we were bracing for the worst after our last appointment.

But as it turned out, the diagnosis, while it has its own challenges, is far better than that worst case we were bracing for, and the dread of having to explain to our youngest kiddos that she may only be with us a day or two.

The fetal MRI was invaluable, because it was able to capture images that previous technicians couldn’t on ultrasounds, and made it easy for the pediatric neurologist to diagnose (and frankly, seeing the images, it was so clear we could have diagnosed it…): Evanna has spina bifida.

As I wrote, that presents its own set of challenges. But her cleft is in the sacral area–very low–which is really good as far as prognosis. That’ll be detailed more in the coming days and weeks.

But this diagnosis gives us a clear birth plan, and we now know what the first couple of weeks (the most critical part) will be like. JoAnn will have to have a scheduled C-section at UW Hospital in Seattle, and within about 12 hours, Evanna will be transferred to Seattle Children’s, where she’ll have her first surgery, which will be to close the cleft. I’ll be with her the whole time, since JoAnn will be recovering for a couple days before following us over. [One awesome piece is that both hospitals are very pro-breastfeeding, and have a plan in place to support that.]

Here’s what to expect: I’ll have at least 2 or 3 days where I’ll be up there, depending on arrangements for work coverage, funds for covering lost revenue, etc. JoAnn and Evanna will be up there for probably 2 weeks, give or take. We’ve switched to planning mode, and will have lots of needs for help with the kids (especially those first few days) for rides, meals, watching them, staying on top of their school work, etc. There will also be financial needs, both for replacing lost income and for additional expenses, so I will likely be setting up a fundaising page soon.

It’s still a heavy load, but not nearly what we’d braced for as a possibility.

Today was a good day.

God is good.

  • ingram1225

    You got this mate!

  • ingram1225

    You got this mate!

  • Pam Johnson

    Check with your State and County. In MN we have a waiver program that would cover any needed nursing expenses, pca, etc. once you are home and recovering and state Medical Assistance would cover the medical costs for baby. Says Social Worker Pam. ❤ You guys got this!

  • Pam Johnson

    Check with your State and County. In MN we have a waiver program that would cover any needed nursing expenses, pca, etc. once you are home and recovering and state Medical Assistance would cover the medical costs for baby. Says Social Worker Pam. ❤ You guys got this!

    • thanks cuz! some of this was briefly mentioned–once we’re at UW Hospital, there will be social workers that’ll go into more detail about some of the possible options. one of those–though can’t be applied for until birth due to the need for a SSN, it SSI. not sure what it’ll come to, but at that point, it’ll all help!