October 7, 2014

FIAO 4.3 - Healthy Twins, Happy Family - Hydro-what? Plus, My Baby Was Radioactive!

So as if having an identical twin pregnancy, gestational diabetes, a c-section at 35 weeks and a 2 week NICU stay wasn't all harrowing enough, we are also now dealing with Juliette's enlarged kidney. In fact, today we had the lovely experience of a test during which my 2 month old became radioactive. It's only slightly terrifying when someone tells you to keep your twins at least three feet apart for 12-24 hours so as to limit the other one's exposure to potentially harmful radiation. All I could think was, "That sucks, but what about the one you just injected with that there radiaton?"

It all started when I was about 25 weeks. Dr M made a remark about Baby A's enlarged kidney. He seemed surprised about it and didn't offer up too much information, other than that I was not to worry, it was most likely nothing. He chased me down before I left to let me know he had noticed it as early as Week 18 and that he was monitoring it closely but it should fix itself before she was born. I didn't worry, hardly gave it a second thought, although we always asked about it at our appointments. No one mentioned it in the OR or when we got to the NICU the afternoon they were born so we just assumed it really had fixed itself.

Two days later one of the Neonatologists was in the room waiting for me when I got there after breakfast. He explained that Dr. M's office had called and that Jules was scheduled for an ultrasound of her kidney. They didn't suspect too much of a problem since she wasn't showing any signs of issues outside of typical NICU stuff but they wanted to see what had happened to it. I missed the ultrasound while I was getting lunch (I still think it's a bogus rule that a breastfeeding mom can't eat in the NICU, I'd have gladly eaten in a closet outside my girls' room to avoid going away whenever I was hungry which, if you didn't know, is insanely often while you're nursing). Anyway, the next morning Dr. Pratt was back with the results and they weren't great. He showed us her right kidney and it looked like a big, bumpy, lack mass. I didn't know what a kidney should look like but this didn't look like it to me. I was right. He said she was experiencing Hydronephrosis and that usually it disappears before birth or shortly after. We were given information for a follow-up consult with a urologist and a VCUG test. I didn't let myself even think about this until they were home for a week. I didn't want my preemie anywhere near the hospital that would do the testing and from what I'd learned it was relatively harmless.

The first test was a little tough as she was still so small and she basically peed the entire time right up until when they needed her to actually pee. I felt terrible that she was screaming the whole time, but mostly because since she was only 5 weeks old I really didn't even know how to comfort her yet so she just kept on with it!  They weighed her legs down with sandbags, catheterized her and then X-Rayed her belly. I got to see the dye fill up her bladder and learned that she was not having signs of reflux, so her urine was likely not backing up into her kidney. She then had an ultrasound a few hours later that showed exactly the problem. We got to clearly see the difference between right and left and it was astonishing. Right was huge, lumpy and dark with patches of light. Left was kidney shaped and much lighter. Dr. Kogan, the pediatric urologist, explained that the ureter that connects her kidney to her bladder is kinky and does not allow her kidney to drain properly. No reflux means that it's not effecting her but they made us go for another test, this time specifically to test the kidney's function.

This test was harder than the first in only one way - she had to get an IV. It would have killed me if she hadn't had one in the NICU and I knew she could take it, but damn have her lungs matured in just a few weeks! Poor Dad said he heard her all the way down the hall and his heart broke. After that she pretty much passed out, even mostly sleeping through the catheterization and the tech strapping, then wrapping and then taping her down.  Then it was an hour and a half of waiting. Halfway through they added a radioactive isotope to her IV and told us to keep her away from Viv.

She woke up, we went home and hoped and prayed for the best.

We found out today that if her kidney had performed .4% worse we would be scheduling surgery for asap. Her lovely right kidney is functioning at 40.4% and Dr Kogan's cut off for surgery is 40. So we have to go for yet another scan, this time just an ultrasound, in December and if this one is the slightest bit worse he wants to go in and fix it. We got the usual spiel, "it's an easy fix but all surgeries have risks" and decided, once again, not to worry about it. If there's a problem she should spike a fever and we will handle it.  I'm pretty confident in our doctor and I really believe she will be fine no matter what we have to do.

The hardest part for me is thinking of all her body has gone through in such a short time! I hope she doesn't need anything more after this for a long, long time!

We will update with more information after December!

Was your baby born with any health problems or did they need any crazy medical procedures?


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