Update #3

Another echocardiogram is done!! That should be the last big assessment until this baby is born. I will keep meeting with my midwife every week for regular prenatal appointments and we will meet with her consulting OB (who has to be on call for the delivery) and the surgeon who will be performing the first surgery. These coming appointments won't be as focused on assessment as all of my appointments this last month have been, but on getting to know Frightful's medical team. We also will be setting up tours of TG/MB (Tacoma General/Mary Bridge) and SCH (Seattle Children's Hospital) and the NICU and CICU (Cardiac Intensive Care Unit, at SCH).

Our pediatric cardiologist, Dr. Kim, was so gracious to answer a lot of our questions today and I now feel like we have a lot of the big information pieces we were hoping to get.

I will deliver at TG around the end of March (a final "deliver by" date might be set on Tuesday?) but then, if there are no immediate complications, Frightful will go up to SCH within a day or two and be at their CICU for ~6 weeks after his first surgery. That he will be at SCH instead of MB for this surgery and subsequent  "recovery" is exciting news to us as we have been cautioned vehemently by many nurses and HLHS parents to insist on SCH because their phenomenal CICU will give him such better, specialized care. Initially we were excited that there was the possibility of a SCH surgeon coming down to MB to do the surgery, because of how much closer MB is to us, but we have been convinced that this isn't in fact a good option. The drive up to SCH (and potentially our stay up there?) is intimidating when I think about how to balance our care of Frightful with spending time with Ezra and Isaac, but it's nothing compared to the majority of HLHS families who have to travel thousands of miles to get their kids to hospitals who are adequately equipped to care for them. We are so blessed to have close access to such a well-respected, nationally renowned hospital.

The Norwood (surgery #1) is a very delicate surgery and has the lowest success rate of the three surgeries, primarily because Frightful will be so young. It is usually performed 2-6 days after birth, although it could be performed the day he is born. A team of doctors will assess him immediately at birth (although I might get to hold him for 2-5 minutes?) to determine if there are other defects or conditions that will affect his eligibility for surgery. We won't really know what is next or when it will happen surgery-wise until then. There are just too many variables to plan around until they get to examine him. So far, however, Frightful's ultrasounds and so on all show "normal" organ development!

We are setting up a consult with the surgeon, Dr. Nuri, as I said, so we can meet him and we can schedule tours of the hospitals. But pretty much now we just wait. My midwife and her OB get to do the delivery and they'll keep Dr. Kim and Dr. Nuri notified and on call once I am in labor so that they are ready for whatever needs done after birth.

It's so nice to "know" where I will deliver and where the surgery will be done and how that first week will look.

The first week after our final diagnosis was primarily just a week of tears as we adjusted to the "officialness" of the diagnosis. This past week was harder and more fraught as all four of us were grumpier and the reality (stress?) of decision making started to set in. I suppose it was a good wake up call to all of us that we can't, in fact, take out our frustration and grief on each other and these last few days have been sweet as we have been more intentional about having cheerful attitudes towards each other. We know this is a long road and we will continue to have "good" and "bad" reactions to the stress of this process and it's been humbling to see how quickly we can (and have!) fall(en) away from being intentional about praying together and communicating with each other and so on.

We are officially moving to what used to be the "band room" at my parents' house and leaving our little yellow house. For the next nine months especially (until after surgery #2 when his health ought to stabilize tremendously), we will need a lot of help with Ezra and Isaac in particular and we can't imagine a better way to give them some stability than to move to my parents'. Packing up (and purging!) is the main plan for this coming week and then we will probably schedule some of those meet-ups and tours for the next week. I think we're a little excited about having a few days off from medical appointments first, though!

We have lots to figure out still, practically speaking, but the process has begun. People keep reaching out to us and praying for us and loving us, which has been a great comfort. I was really intimidated by the outpouring of support at first, but it has been a great encouragement to us already. We are so grateful and feel so well loved. Thank you!