When we were at UCLA they discussed her portal vein and that they would really like an MRI of her vasculature. They wanted the MRI to tell them if the portal vein was actually occluded or if the Doppler when doing the ultrasound couldn’t visualize blood flow because of all the excess fluid and because the vein is very small in babies.

We were scheduled for an MRI Friday, July 3. However, when they checked Norah’s electrolytes in a blood draw on Wednesday, her sodium and potassium were low, and the GI knew that those numbers could cause concern for an anesthesiologist performing the MRI. After much discussion back and forth between myself, the nurse assistant to our GI, and the anesthesiologist assigned to the case, the compromise was to do a lab draw prior to the scheduled MRI to check her levels. Unfortunately that meant that if the levels were too low, Norah’s MRI would be canceled and she would be admitted to the hospital for fluid management.

Norah was all prepped and ready for her procedure when we got the news from the anesthesiologist that her sodium levels were still dropping. Jason and I looked at each other as Jason said to me, “I just wanted to catch one break.” Luckily I had hoped for the best but planned for the worst, so I packed extra clothes and supplies for both Norah and I.  What I couldn’t have anticipated was that she was being admitted to the PICU, so would be tethered by 4 different sets of cords/lines and they would have to perform blood draws every few hours as they pushed different fluids through her IV. As they continued to hook her to more and more monitoring devices, I looked at my poor little baby and felt sad that just holding her was going to be a chore. All the while though I tried to stay positive that this was necessary so we could get the MRI for UCLA and so that they would have much-needed information prior to her transplant.

I obliged the hospital staff, helped give her medications, nursed her, reporting the time spent nursing and kept dirty diapers for them to weigh, but at 6am her sodium was still low. They did one final push of a hypertonic solution and the anesthesiologist finally agreed to do the MRI around 9am, 5.5hours after Norah had last eaten. I felt terrible for her.  This was the second time in 24 hours she had to be fasting. She had done this all too often. As I kissed her before being taken into the room for them to start the MRI, I couldn’t help but cry softly to myself. I so wish she didn’t have to go through all this. I so wish she didn’t have to endure all these tests, the poking and prodding, the surgeries, the medications… I just wanted her to have some “normalcy” for once in her life. In her nearly 6 months of life she has had to deal with more than some people do in their entire lifetimes. Thank God she is strong… For her, for Jason, and my sake.