Talk about working with the experts. Since our regular OB doesn't handle high risk patients, nor can he deliver at the University of Utah Med Center (which connects right to Primary Children's Med Ctr next door), we made the switch to Dr. Byrne last month. She's fantastic--she handles only high risk pregnancies, with her specialty in fetal heart anomalies, so we're in with the right doctor. At our first appt, we didn't expect to be there so long ...4 hours (thank you Auntie Adrienne for babysitting that day)! I thought I was gonna pass out from starvation, but at least she's thorough.
She talked us through what the birth will be like given our situation. Firstly, they'll induce labor early (about 1 to 2 weeks, depending on the usual pending-labor signs), so as to have the cardiac team ready upon the baby's arrival. We'll deliver in 1 of 3 special rooms, which has a connection "window" to the NICU evaluation room. That's where the baby will spend her first hour -- they'll give her an immediate echocardiogram, get her prostaglandins started (a hormone that will force a fetal heart artery to remain open), and they'll see if she needs breathing support. Dr. Byrne explained that, though she won't be oxygen starved, she'll receive limited O2 - they'll give her about 80% or just enough, so that they can mimic in utero conditions as much as possible (it was at that point, that she told us the baby will look blue ...but not a "scary" blue).
She told us to be prepared - upon her arrival, we'll only get to see her for a couple minutes before she's passed through that window. Once they have her stabilized, Bob will go with her through the tunnel to PCMC, where they'll get her setup in the Cardiac Unit of the PICU (Pediatric ICU). At that point, we visit her as much as possible and hope she stays stable. That will determine when they do the 1st open heart surgery.
At our last cardiology appt, Kim gave us a tour of the PICU/Cardiac Unit. We were introduced to Ammon, a week old baby boy who was 2 days out of his OHS. It was hard to see such a beautiful sweet baby, with so many tubes and lines coming out of him. The RN assigned to him was great -- she walked us through what every monitor was doing, every computer screen, every tube, what we can expect prior to her surgery and after. She told us that the nursing staff usually break the rules when it comes to siblings visiting the PICU -- so we'll probably be allowed to have Cate meet her sister before her surgery (they usually don't allow kids under 14). I have to say, between the Cardiology Staff at PCMC and our new OB and her team at the U of U Med Ctr, we feel like we're with the A-Team.
In addition to the tours, Kim got us in touch with Intermountain Healing Hearts - a support group for parents of "heart" children. They have been amazing -- giving us support, understanding, advice, etc.; I just don't know what we'd do without them. To have people who understand exactly what you're going through, who understand your fears, anger, periodic nightmares, it's just been such an amazing resource for us. In fact, it was one of the heart moms who suggested we start this blog. As she said, it's fantastic therapy for us (you gotta get all this out somehow), a great archive for both of our girls, and a good way to keep everyone else updated as we go through this journey.
One thing I really didn't expect to learn from the group is that this really is a lifetime ordeal for our baby. It won't end once her surgeries are finally over. I guess I didn't want admit it to myself just yet -- I feel like we can't forge ahead with anything until this 1st surgery is over -- but even if (...and God willing) when we get through the last OHS, we'll never be done with the worry. I keep thinking of Noah (also born with Tricuspid Atresia); he's survived it all thus far, but now he may need a pacemaker at the age of 10 ...like his mom told me, "When you think it's finally over ...something else comes along." It's just so hard for us to fathom.
But hell, I can't really fathom my newborn not coming home with me. I feel her moving around right now and I wonder why she has to be put through all this. It's like a sudden wave of panic washes over me when I think about what's to happen in the next 6 to 8wks. I wish I could do something to make it all better, but instead, all I can do is cry. And I know, we're lucky it was diagnosed early, we're lucky to have PCMC so close, we're lucky medical science has advanced this far, we're lucky to have good insurance, I know I know I know, but dammit, why couldn't we be as lucky as we were with Cate? Why can't her odds of survival be 90 or 100%? Why can't I stay focused on the positive? When will I stop lying in bed at 3am worrying and dreading all of this? Better yet, will I ever sleep through the night again? When will I know my baby really is OK?
Sorry, but I guess I need to get this off my chest. I go through this a few times a week now; getting it down in writing might just help. I'm done ranting for the moment.