The Plan

It's been four weeks since we found out Isaiah has CDH. Even after my appointment in Eugene with the Maternal-Fetal Medicine doctor, there was still so much uncertainty and many questions. Last week I was finally called to schedule an appointment and consultation with the MFM office in Portland. 

It was the sonographers first time doing an ultrasound for a CDH case, and Isaiah really doesn't like it when I lay flat on my back for more than a few minutes, so she asked another sonographer to come in to help her find a couple things. After that the doctor came in take a few more measurements via ultrasound of his lungs for her records. 

An hour and a half later and then came the consultation! The LHR hasn't changed hardly at all, and his heart still looks alright. The doctor told me she thinks his CDH is favorable, giving him +80% survival rate! However, no matter how closely they monitor him before birth, it's difficult to estimate how well his lungs will actually function. His current measurements put him in the 'possibly need ECMO' range. 

ECMO is extracorporeal membrane oxygenation. It's similar to the heart/lung bypass machines used in open heart surgery. We are prayerfully hopeful that he won't need it, or not need it for long, but we are so grateful for the miracles of modern medical technology!

And then she gave me The Plan!! Finally something concrete I can plan around and for!

Up until 32 weeks I will only have a few long days of appointments, and after 32 they want an ultrasound every week until delivery. 

Below is The Plan! Hopefully it won't change much!

28 weeks (October 12th)

-Fetal Echocardiogram

-growth ultrasound

-consultation with MFM Fetal Care Coordinator to set up more consultations with the NICU and Pediatric surgery teams, possible others

-appointment with an MFM doctor to discuss progress.

32 weeks (no appointment set yet)

-Fetal MRI at OHSU to measure lung volume (ultrasound can only do so much)

-growth ultrasound

-appointment with an MFM doctor to discuss progress.

32-38 weeks

-weekly growth ultrasounds, at either MFM office (Eugene or Portland)

-tour NICU at some point

38/39 weeks

-scheduled induction at Legacy Emmanuel (Portland)

I was so happy to hear her say 39 weeks for delivery! I have really been stressing about spending Christmas in the NICU and still being present for Brick, Adam, and Eli. 39 weeks puts us around the 28th of December, but things may change the closer we get. 

It's likely that the boys and I will temporarily relocate to my sister's house in Salem for the month of December to cut down on travel for the weekly ultrasounds. Brick would probably come up on weekends until Christmas, then take some time off for delivery and initial week or so of Isaiah in the NICU. We have decided that we want him to be able to take most of his time off after Isaiah comes home, so unless something changes he will continue the 'visit on weekends' trend until then.  

I'm so happy to finally have a plan and put aside so much of my uncertainty! I have felt the windows of heaven open for us, and I'm so grateful to everyone who is praying for us! It's working!

Much love from my family to all of you!