One minor thing that had been on the table since Norah was 24 weeks gestation was a couple of holes in her heart. Now most babies in utero have them, and when she was born the ultrasound showed one of them had closed and the other one was a PFO (Patent Foramen Ovale) which was very minor and we shouldn’t be too concerned. We had seen a pediatric cardiologist in the hospital when she was born and then during another follow-up in March. The doctor said that everything continued to look better but if she needed a transplant that she would need an echocardiogram for a more in-depth picture of her heart. Well needless to say, I called them and scheduled the echo shortly after the mention of UCLA.

After more than 5 weeks of going back and forth between Norah’s Gastroenterologist here in Vegas, the insurance company, and UCLA, we finally got an appointment for June 17 in LA.

Now skip ahead to June 11. That morning I was on my way with Norah in the car to her cardiologist appointment when a lady from the living donor team at UCLA called me and told me that I was not a candidate to be Norah’s liver donor. She said that because I have the MTHFR mutation and therefore could develop a blood clot more easily during surgery, the risk of fatality (or complications at a minimum) was greater than anyone at UCLA was comfortable with. While I’m glad to know that the doctors have both donor and recipient patients in mind for transplant, I was devastated to learn I couldn’t save my own daughter’s life if given the chance (double bonus is that Jason is a type 1 diabetic and so was already out of the running for a donor as well).

So anyway, I took Norah to her cardiology appointment and was relieved that A) the echo was fast B) the doctor allowed Norah to stay cozy wrapped in one of her favorite blankets (except over the chest) while she happily sat in her car seat, and C) we finally had good news that from what they could tell the PFO had closed!

The next day we were scheduled for yet another set of chest X-rays (2nd set in about a month) and abdominal ultrasound (the 4th in her short 5 month life). These scans were simply in preparation for our evaluation at UCLA but I would come to find out why later that day. Now Norah is a strong little girl, no doubt, but HATES being “messed with” very much. It’s why bath time and diaper changes aren’t much fun, why it takes 3 people to hold her during blood draws, and why ultrasounds take so long to complete – she screams and cries almost the whole time, every time. Anyway, it took about 15 minutes until the tech stopped and asked the doctor reading the scans if I could feed Norah to calm her down, even though she was supposed to be fasting for 3 hrs prior to the ultrasound & x-rays. After some convincing and more screaming, I was allowed to nurse her and she calmed down almost immediately.

Later that day, we had been home from the radiologist appointment a couple of hours when I got a call from Norah’s Gastroenterologist. The assistant informed me that they were concerned that the scan wasn’t done properly and that they could not visualize blood flow through the portal vein. Keep in mind that the portal vein conveys blood to the liver from the spleen, stomach, pancreas, and intestines – so kind of major. We were instructed to go directly to the Sunrise ER and they had been informed that we were on our way. I wasn’t sure what to think… part of me believed that the scan earlier had been wrong and that the doctors were just covering themselves by doing another scan to determine the blood flow through the portal vein. Another part of me felt sick, knowing that a hospital admit was not out of the question, and wondering how this would affect her ability to have a successful liver transplant.

At Sunrise they told me I was not allowed to feed her until we had gotten the “ok” from doctors following the ultrasound. This means that Norah had to be fasting for a 2nd time that day – going more than 3 hours between feedings for an exclusively breastfed baby is not much fun, let along doing it a couple of times a day! They completed the ultrasound and after a little while the ER doctor came in and told us we needed to do a second one with doppler because he had not put in the order correctly. Though he was very apologetic, that didn’t help my now screaming baby feel any better. Luckily one of the nurses recognized us from when Norah had been in the ER at only a few weeks old and instantly remembered how effective “sweeties” were in calming her. Thankfully they allowed me to use these sugar-water drops with a pacifier to keep her more comfortable during the next ultrasound/doppler scan. Afterward, they determined that indeed, the portal vein appeared occluded. With tears in my eyes and with a confused look on the doctor’s face, he said, “There’s not much we can do so your Gastroenterologist cleared you for discharge.” I was filled with emotion and immediately got on the phone with the pediatric Gastroenterologist follow at UCLA and after some discussion, the doctor explained that while there would be follow-up actions, right now there wasn’t much to be done.

Another hurdle. Awesome.