Well, yesterday Kaitlyn saw the Pediatric Urologist at UCSF to follow-up on the ultrasound from the day of her discharge. She had to have a catheter inserted in her bladder, where it was filled up with a radioactive contrast so she could be x-rayed. They put lead gowns on us so we could her still during the x-ray, if we have lead gowns, what do the x-rays due to her tiny little body. I started crying when we got there, I hate all of these invasive tests on my daughter.
They discovered that she does have reflux of the bladder/kidneys (This is different than stomach reflux). It means that she has high susceptibility for bladder/kidney infections as the urine goes backwards. She will have to now go on and stay on a low dose antibiotic for quite some time. If she gets a UTI (Urinary tract infection) it can cause long term major kidney issues.
The other tough thing going on is that Kaitlyn is throwing up again with projectile vomiting. This is just terrible, as it takes us up to an hour or more to feed her, and then she throws the whole thing up. A LOT. This morning for example, she nippled about 20 cc’s (just under an ounce), then I gavaged the remainder (55 cc’s), she seemed peaceful, propped on my lap, I had to desperately pump (I had just woken up and switched shifts with Brian), when I was reaching down to get her bouncy seat (which holds her upright) she proceeded to vomit her entire feed. (Well, I guess it was her entire feed). It got all over me, my clothes, the rug, her clothes. She was like a fountain of vomit it comes out so forcefully. I feel so sorry for her. So I changed her, changed me, cleaned the floor (as much as you can while you are holding her), then re-gavaged her 30 cc’s (an ounce). She may have lost more, but then again, she may still have had some. I had also just given her 3 medications (reflux medicine, iron, and vitamins), so who knows if she vomited all of the meds, I didn’t give them to her again.
Today we have an appointment with her regular new pediatrician, and we are very anxious to know if she’s gained weight for her first week home. We are most likely going to have to do something to address her vomiting. I imagine that we will need to see a GI specialist. She’s already had a swallow study while she was in the hospital, which showed she didn’t have reflux. But the docs decided to put her on reflux medicine anyways. She shows signs of reflux, as she gets very uncomfortable after eating and does better if she’s upright – classical reflux signs.
Well, here she is now! 7 pounds 2 ouncesLooking at her papa
Sleeping on mom
I guess this is the site of a typical new parents house. I'm trying to eat dinner, check email, feed Kaitlyn (this was a LONG feeding session. ) Tivo remote ready to watch the olympics, breast pump in the background, syringes to feed Kailtyn her many drugs, her old feeding tube is on the table too with the orange tip, blankets and burp clothes at the ready, throw-up burp cloth on the floor pacifier, and Kailan (our dog) finally showing some interest in the slurping new arrival.